LifeWithArachnoiditis

Welcome Diana Couch

2010-06-19T12:42:00.003-06:00

Please welcome Diana Couch of Arizona. Diana has Adhesive Arachnoiditis. She welcomes your email to her at ibde@cox.net.

Diana says:

"I have read alot about AA. But at this point I am having trimers in my right hand and arm. (as of today) Can you tell me if this is part of my AA. I have AA from l1 to s1 as of 2/2010 Has not changed sence 4/2009

Please tell me more about camp!!!!!!!!!!"

From LWA: Diana, Camp is not associated with LWA. Please go to www.arachnoiditisusa.com or contact Karen at kkovacik12@netzero.com

Welcome Kathryn Fisher

2010-06-19T12:41:00.001-06:00

Please welcome Kathryn Fisher of the UK. Kathryn has Arachnoiditis. She welcomes your email to her at kkdfisher@googlemail.com

Welcome Peter Rutkin

2010-06-19T12:37:00.001-06:00

Please welcome Peter Rutkin of Queensland, Australia. Peter has Arachnoiditis. He welcomes your email to him at petrtkn@spiderweb.com.au

Peter says:

"operation may 1992 at L4/5 .I had lain in hospital four days my specialist forgot me. given myelogram and operation,( discectomy and laminectomy).Have'cauda equina syndrome' (damaged cord at L4/5). Had 2nd myelgm 1992. 1994 tightness calves in shopping centres . baclofen to reduce the tightness and used stretches of my calves.Over years tightness spread down to my ankles. Have backlofen pump. Take lyrica, alopam & painkillers,fentanyl patch 25mcg/hr,dothep.Pain real bad now. regards peter (intrathecal pump"

Welcome Raymond Frizzell

2010-06-19T12:29:00.001-06:00

Please welcome Raymond Frizzell of Florida. Raymond has Adhesive Arachnoiditis. He welcomes your email at paula5o2@aol.com.

Welcome Linda Gall

2010-06-19T12:24:00.001-06:00

Please welcome Linda Gall of Texas. Linda has Arachnoiditis. She welcomes your email to her at royandlinda@gvtc.com.

Linda says:

"I have recently been diagnosed with Arachnoiditis. I am needing further information than I have read...specifically, what can I do myself to alleviate or minimize the pain? I just need information, and that is difficult to get."

Welcome Richard Doyle

2010-05-30T14:50:00.002-06:00

Please welcome Richard J. Doyle of California. He has Arachnoiditis. His email is bigspice@sfsu.edu.

Richard says:

"Eemail is on a friends computer. She will give to me."

"I would like to register for Newsletters. I like to hear of experiences of others and I am interested also in treatments/approaches which have seemed to work for some folk. I am on morphine and have been in pain for years. My mailng address is Richard Doyle 46 Seton Irvine, Ca 92612

My friend at the email address above will handle any correspondence on email and get it to me. I will respond through the same."

----------------

From LWA - At this time we do not have a newsletter. It would be nice if some of the members would take the time to write to Richard.

Welcome Kevin Holderread

2010-05-30T14:44:00.001-06:00

Please welcome Kevin Holderread of California. Kevin has Arachnoiditis/Compression on Dural Sac. He welcomes your email to him at kevinholderread@ihgmi.org.
Submit

Welcome Nancy Holladay

2010-05-30T14:42:00.002-06:00

Please welcome Nancy Holladay of Idaho. Nancy has Spinal Arachnoiditis. Nancy says:

"Am surprised to hear about the difficulty people are having getting diagnosed. Mine was discovered in a follow-up CT 1 1/2 years after a spontaneous epidural abscess led to sepsis and my spinal cord was severely damaged. A radiologist diagnosed it and my doctors have been treating it without question since.

My pain management physician has been very respectful of my preference for alternative treatments, but I'm now at a point where we are using more traditional pain meds.

The medical staff at St. Alphonsus Medical Center in Boise, Idaho is absolutely awesome and incredibly progressive. "

Welcome Al Knox

2010-05-18T06:34:00.001-06:00

Please welcome Al Knox of Illinois. Al has Arachnoiditis. He welcomes your email at
knoxa@att.net

Requesting input/assistance

2010-05-18T06:31:00.000-06:00

Grace Brame, Ph.D.
Email address - gracebrame@yahoo.com

Thank you for what you are trying to do! My AA friend is now FALLING, over and over, and is really in danger. We do not know if this is part of AA or whether it is from her meds. She can't sleep well at night but is sleepy all day long. She has lost 40 pounds and now has gained 10 pounds back. We are bewildered. She is taking methadone and duladin. (What is the spelling for that last word?) The pain has been reduced from a constant 9 to 8 or 8 1/2, but the falling has appeared. She has knocked out two teeth, and had bleeding bruises. We need better doctors. We have almost given up on Wilmington, Delaware and Philadelphia, Pennsylvania. She is going to the head of the Pain Clinic at the University of Pennsylvania Hospital. Not much hope there. No one is doing any experimental research.

What do you know about Johns Hopkins? Is there someone there? It is an hour and a half away and a great hospital. We have investigated Cleveland Clinic, but they insist on taking patients off all medicine at the beginning. Duke has been very unhelpful. Dr. Aldrete has been lauded and vilified. (Why is he disbarred in two states? Don't they understand him or did he really do something harmful to some people?

I have called Dr. Forrest 2 times. The call is not returned. I have not been able to get to Dr. Burton.

Whatever doctors, medication, or advice you can give us will be so much appreciated. My friend would like to go somewhere where they take people for several weeks and concentrate their abilities on her care.

What do you think>

Much gratitude,

Grace Brame

Welcome Cindi Soutter

2010-05-17T07:06:00.001-06:00

Please welcome Cindi Soutter of New Jersey. Cindi has CFS, DDD, AA, FMS. She welcomes your email at jerseerose@yahoo.com.

Welcome Debbie Morgan

2010-05-14T15:19:00.001-06:00

Please welcome Debbie Morgan of Tennessee. Debbie has Arachnoiditis. She welcomes your email at debbie.s.morgan@tn.gov.

Debbie says:

"Had Panopaque in spine in 1981 without it being removed. I had a spine tumor removed (malignant) and had radiation therapy. About 4 years ago MRI suggested Arachnoiditis due to nerve clumping and "empty sac". Haven't found doctor here that knows about disease."

Welcome Louise Semadeni

2010-05-13T11:09:00.001-06:00

Please welcome Louise Semadeni of Missouri. Louise has Adhesive Arachnoiditis, CES, Cervical DDD&disc bulging, Pinched cervical nerves causing pain and numbness in arms and hands. Louise's email address is Mamalou@churchlight.org.

Below is the information submitted on May-12-2010 21:41 EST

Suggesting a provider: Lemons Center of Behavioral Health

Louise says:

"I have had Adhesive Arachnoiditis since 1970 from mylegram dye after a car accident with a drunk driver. I was It was actually diagnosed in 1984 and treated with a series of epidural injections every other day for 10 days. If only I knew then what I know now. They didn't do anything good. A few years later I got an SCS which didn't help the pain and then got infected so it had to be removed. Through those 14 years I found that I was allergic to all but one pain medication. Between 1970 and now I have had 37 surgeries on various parts of my body. 10 of those were spinal. 8 lamanectomies and 2 fusions - L2 thru S1.
17 years ago I started working with a pain management psychologist who has helped me learn how to live with Arach not just survive it. My faith is my strength. I have been a member of COFWA for over 10 years but I have had technical problems with Yahoo and I can't seem to post there anymore. I guess it is time to move on.
After 40 years I have been through it all I think. Way too many days and weeks in hospitals. I use a power wheelchair 100% of my day. My legs and feet are mostly numb now but I still feel "bee sting" sensations around my lumbar spine. Recently I was told I have quite a bit of cervical damage now including DDD, bulging discs, and pinched nerves. So now my hands and arms are compromised as well! But, the blessings never stopped. I am the mother of 2 incredible sons. MIL of 2 beautiful daughter's in law. And Nana to 3 fabulously smart, beautiful and talented grandchildren aged 10mos, 5 and 14. No, I'm not biased! Presently I am living with my husband and two furry critters who take very good care of us. They are both rescue dogs who are spoiled rotten but help me feel lots of love everyday. I still love to laugh as much as possible and that keeps me smiling."

Welcome Valerie Quick

2010-05-12T14:31:00.002-06:00

Please welcome Valerie Quick of North Carolina. Valerie's email address is crazy@nc.rr.com and she would welcome your email.

Below is the information submitted on May-12-2010 14:26 EST

Valerie says:

"Adhesive Arachnoiditis, Spondylolisthesis treated with posterolateral lumbar fusion Cage Fixation and pedicular instrumentation L4, L5, Spinal Stenosis, ~ Hernated Discs C5, C6, and C7~ Cervical Osteophytes ~ Cervical lordship. That all sounds like a Medical mouthful? Sure does to me, I am certainly missing missing some of the mumbojumbo of some Doctor's diagnosis somewhere.
Oh I know the last failed attempt of a Spinal Stimulator that was to make the pain better. Yet instead the trial itself made my back pain worse? Which ironically I have not had back pain except very deep pain for years, and for those of you with Arachnoiditis will understand that reference *sigh* and now I have good ole back pain back on my left side. I guess I can look at it like something new for my Brain to focus on for a bit. Sounds horrible I Know, I say that sometimes when I get a paper cut, or burn my finger cooking, my family thinks I am ready for a pretty jacket some days. Well not much of an introduction, I am terrible sorry, my name? Valerie, I own a small Computer company in North Carolina, I take care of 2 wonderful Girls that are now grown. Leslie is in Grad school for Criminal Justice. Danielle is a senior, Botany and Zoology. Married 28 years to a man I have known since I was 12 and now take care of for a severe head injury from a Parachute accident (US Paratrooper).
My story, broke my back in 1975.. I guess that started it all, sports after that, I Played to win, I played hard and many, many, back and neck injections later a few and various broken bones ligament repairs ect ect.. Surgeries you all know the drill I am certain. Spondylolisthesis, forced my hand to the fusion, I was unable to walk, so in 2006 had to have a back fusion followed by a neck fusion. My back fusion was text book went great, until 6-8 months after into my recovery, I started feeling like I was slipping, having more pain, but different.. Then they found out why. Well here I am. The Doctor RAN from the Neck fusion, and so I suffer still to this day, no one will touch my neck they are afraid of the chances. I still run just from the Adhesive Arachnoiditis, I guess no just searching for others that have this same pain. I know my family especially my Girls try and understand, they really do, and just not sure they really can. People ask me..

Well my Doctor says where is your pain.. Hmm I do not know how to answer that anymore.

That really scares me and that should be simple shouldn't it?

I do not know where to start, just relieved to have found you.

Valerie Quick crazy@nc.rr.com"

Welcome Cheryl Johnson

2010-05-12T14:29:00.001-06:00

Please welcome Cheryl L. Johnson of Ohio. Cheryl has Tarlov Cysts, DDD and Stenosis. She welcomes your email at johnson_cj2003@yahoo.com.

Cheryl says:

"I was diagnosed in 2005 with Tarlov Cysts after a lifetime of back pain. I also was diagnosed a year later with ITP, which is an autoimmune disease involving blood platelet destruction (platelets are essential for blood clotting). From articles I've read, recently, there may be a connection between bleeding in the Spinal Column and the formation of Tarlov Cysts/Arachnoiditis. I am interested in sharing infomation, being a friend and helping the cause. It's always great to come across these sites. Thanks for your efforts!"

Welcome Eva Bradshaw-Burnett

2010-05-12T08:31:00.001-06:00

Please join us in welcoming Eva Bradshaw-Burnett of Delaware. Eva has Arachnoiditi and Cauda Equina Syndrome. She welcomes your email to rebma924@msn.com.

Eva says:

"I live in constant, no-stop pain. At times agonizing, screaming pain. It has become my friend. When I wake in the morning I know I am alive because I am in pain. I don't remember a time in my life anymore when there was no pain.
My life started it's downward spiral when I was diagnosed at age 10, and quite by accident, with sooliosis. I spent years in plaster traction jackets and in and out of the hosspital while the doctors attempted to reduce the curvaure of my spine. During my stays in the hospital I met a girl with the same problem as mine: but she had undergone surgery. At that time the orthopaedic community felt that it was only safe to fuse 3 vertebra at a time, waiting 9 months for the fusion mass to solidify, before going in again if more fusion was necessary. My caregiver did not actively participate in my medical condition, and I eventually had a letter drawn up to allow me to make medical dcisions for myself. I was 12 years old.
When the doctors felt that they had reached the best point of reduction and were ready to operate I refused the surgery. I knew that I needed, at the very least, 11 fusions done. This would mean 4 years in a hospital bed with no visitors. I had already gained a great deal of orthopeadic knowledge thanks to my doctors; who spent as much time as they could teaching me to read x-rays and getting as many other spine specialists to examine me and explain ther findings to me. It was discovered that I had had sciatica since I was 10 years old. I was home tutored for most of my education (by law), and graduated high school in the top 10 of a class of 1500 students.
My scoliosis was followed and was only progressing at the rate of 1 degree a year until I became pregnant. After giving birth, by C-section,and with an epidural, my spine progressed 10 degrees in 1 year and I was becoming paralyzed by spinal stenosing as well as pressure from my spine on my left lung. My first spinal revision, (there have been 7 in total) was performed by Dr. Stanley Hoppenfeld. At that time Dr. Hoppenfeld was considered to be one of the finest spine surgeons world wide. At the 1 year post-surgical check, Dr. Hoppenfeld never informed me that my L5-S1 fusion mass had failed. That was in 1976.
By 1987 I could barely walk and was refused treatment by Dr. Hoppenfeld because, "nothing could possibly be wrong." I was operated on again, this time by Dr. Jean-Pierre Farcy. Once again, a pre-eminent spine surgeon. My fusion mass failed again and, despite his sending me for a consult with Dr. John P. Kostuik, in Toronto, Canada, who advised Dr. Farcy not to op[erate on me again, (a fact that I was not made aware of at the time) Dr. Farcy did an anterior approach, having a general surgeon open my stomach for him, and once again the fusion mass failed. Now I had a mutilated stomach and more pain than ever. I was also diagnosed at that time with arachnoiditis.
Dr. Kostuik performed surgery at Christmas of 1990, in Canada. It was the 3rd set of hardware, the 3rd sciatic correction, but unfortunately, not the last surgery. Dr. Kostuik moved to the Johns Hopkins Medical Center, and 3 more surgeries were performed there; the last one in 1994. I became a water exercise and swimming instructor so that I could have as much water therapy as possible. I also took up T'ai Chi to improve my balance, which worked dramatically.I had follow-up visits with Dr. Kostuik and was aware that neurologic changes were occurring at a slow but steady pace. He is now, to my great misfortune, retired, though still teaching amd innovating new, less invasive instrumentation for the spine.
Then the neurolical symptoms changed suddenly. Just a few months ago. I suddenly felt like my left thigh was on fire. Then my legs began weakening, despite exercises to strengthen them. I diagnosed Cauda Equina Syndrome, which was confirmed by a neurosurgeon at Johns Hopkins. I was forced to use a cane and have now progressed over the course of a few weeks to needing a walker. I have already picked out the wheelchair that seems to be the next logical necessity if the downward spiral continues at it's current rate. I am waiting to find out if I a particual doctor finds me to be a candidate for a spine neural stimulator. Even if he does find me to be a candidate, I have 2 abdominal revisions that have to be made to fix the mutilation of my stomach that occurred during my 3rd spinal surgery. An outcome, which at the time, was considered to be an "accepable out-come" in the malpractice arena. The herniations of my abdominal wall as well as the poor closure have now made it medic!
ally expedient. Because of my vast experience with insurance companies I am a pro bono medical advocate for those who need one. I have never lost a case that I have taken on in 20 years, yet.
I can tell you where every marr in the ceiling over my bed is and how depressed and lonely I am at times. That without a computer I would have little contact with the outside world. I no longer live in New York, where I lived for most of my life. After close to 5 years in Delaware, I have found no friends or even aquiantances.
I can still walk, though I do lurch about a bit. I can drive a car. But with the limits that I have and my husband and ex-husband's help, and my cats, who are my constant companions, I still cannot get past the un-decribable agony that attacks when I least expect it."

Welcome Laurie Grimm

2010-05-12T08:24:00.001-06:00

Please welcome Laurie Grimm of Indiana. Laurie has Adhesive Arachnoiditis. She welcomes your email to provchap3v17@yahoo.com.

Laurie says:

"I am so very tired this evening, and I'm hurting down my right leg something fierce! I have an appointment soon with a specialist in Louisville, KY. A lumbar fusion has been recommended by my local neurosurgeon, and I'm getting a second opinion from the specialist. I would write more (such as how my symptoms of back trouble began, and how I finally was diagnosed with AA on March 17, 2010) but pain is going to prevent me from sharing. Hopefully later, I'll be able to. Thank you for providing information and support!"

Welcome to Andee Younkin

2010-05-08T06:47:00.002-06:00

Please welcome Andee Younkin of Nevada. Andee welcomes your email. Her email address is pandaandee@aol.com. Andee has Adhesive Arachnoiditis.

Andee says:

"I was a Victim/Survivior of Domestic Violence & Rape. I was held captive for 14 hours, brutally beaten, repeatedly raped, strangled and left for dead. After a trial the perpertrator was sentenced to 4 life sentences. It was due to this horrific incident that led to multiple spine surgeries, cervical and shoulder surgery as well. After two years I was finally diagnosed with Adhesive Arachnoiditis. I survived the most horrible night of my life to be diagnosed with a chronic incureable disease. Just when one would think it couldn't get any worse...LOL!! But I have learned many of life's lesson's and one of the most important one is, NEVER, EVER GIVE UP. We find strength we didn't know we had to survive. It's most definitely worth it! Even a day filled with pain and frustration there is joy. I am a grandmother and last May I became a great grandmother. There in itself is reason to persevere. The blessings are many and you just have to try your damndest to keep believing!!!"

Kim Barber - Please send us your email address

2010-05-08T06:45:00.001-06:00

Welcome Kim Barber of Georgia. She welcomes your email, however, we do not have her email address. We will add her email when we receive it.

Kim says:

"Hi - I'm trying to find some help for my father, who was recently diagnosed with Adhesive Arachnoiditis."

Please welcome Keeliey O'Hara

2010-05-06T17:46:00.001-06:00

Please welcome Keeliey O'Hara of Illinois. Her email address is keelieyohara@att.net and she welcomes your email.

Keeliey has been diagnosed with Adhesive Arachnoiditis, Lumbar Vertibral Fractures,Polyarthritis, Stenosis, Osteoarthritis.

Welcome Stephen Becker

2010-05-02T15:57:00.003-06:00

Please welcome Stephen Becker of New Mexico. Steve would like to hear from you and welcomes email to him at stephen.m.becker@comcast.net

Steve has submitted some articles which we have added to our research page at LWA.

Steve says:

"I have had numerous back surgeries, Epidural injections, and a Morphine pump.....all of which has left me with horrible burning in my lower spine. I would like to learn, and share what I have experienced and know."

Welome Tom Miller

2010-05-02T15:51:00.002-06:00

Please welcome Tom Miller of Colorado. Tom's email address is millertb1@comcast.net and he welcomes your email.

Tom would like to suggest a provider: Dr Mazin Al-Tamimi, Littleton CO

Tom says:

I'm having some good relief with an implanted Spinal Cord Stimulator. It's been in for about 4 months now; I'd say it's about 75% effective. The docs seem pleased with this.
I still have occasional evenings that require a percocet to get to sleep.
Also, I've tried to go with it turned off, but no luck -- can't stand the pain with it off."

Welcome Dennis Haney

2010-05-01T14:30:00.001-06:00

Please welcome Dennis Haney of Alabama. His email address is dhaney9045@charter.net.

Dennis says:

"Has anyone been able to sue epidural Dr. or their Surgeon?"

Modifying Tom Mostello's email address

2010-04-30T07:21:00.001-06:00

Please welcome Tom Mostello of Indiana. Tom welcomes your email and his email address is tmostello@msn.com.

Tom was diagnosed with arachnoiditis/lower back April 2010.

The prior post has the wrong email address for Tom.

Thanks.

Please welcome Cara Crump of Missouri

2010-04-28T06:39:00.003-06:00

Please welcome Cara Crump of Missouri (she is moving to Montana in November 2010). Cara would love to hear from you. Her email address is ilovegummmybears@yahoo.com.

Cara says:

"I am cara im 27 years old. i had epidural steroid injections in februdary, and when they didnt help, i underwent arthoscopic micro discectomy (AMD), on 4-7-10. since a week and a half after my surgery, i have never felt so much pain in my life. it feels like someone is trying to saw of my leg, or stabbing me with a knife. i have spasms so bad that i scream and cry. i have not slept hardly at all since the pain started ( its been 10 days now) and when i do get to sleep i wake up crying. no medicine that they prscribe can help my pain. i am on oxycontin and it doesnt even take it a notch down, only makes me tired.im on meds for spasms inflammation and antisezure meds, but nothing helps. i just had my mri today and met with my doctor, and he said i had arachnoiditis. when i was in his office i didnt ask alot about it because the name sounded funny, i thought is he talking about a spider? he told me that all the nerves in my back are completely inflammed and appear to have been so for quite some time. he is confused because there is no rehernitaion after he removed my disc and my muscle strength isnt lacking. he doesnt know what happenend or why im in so much pain just that i have all this inflammation. he then put me on a steroid pack to help with the inflammation to try to break it down. he is hopeful that he can get my pain under control, but i am just scared. i read everything about it when i got home and i am so sad. how can i deal with this for the rest of my life? after 10 days i feel like i cant take it anymore, and to read this im just so confused and hurt and scared. my wedding is in june and i can barely get out of bed. i want to be well enough to experience my wedding. can someone help offer support, things that have helped them through the pain? i dont know what to do and i just need someone to help me
thanks
cara crump"

Please welcome Maria "Lu" Figueiredo

2010-04-24T15:34:00.002-06:00

Please welome Maria "Lu" Figueiredo of New York. Lu welcomes your contact and her email address is dorcostas@yahoo.com.

Lu says:

"HI, I am so ecstatic to find another site that has more info and support for Arachnoiditis sufferers like me. This is such an awful diagnosis to have to deal with and when there is so much ignorance and negligence on behalf of the medical community around where I live, it is so frustrating. I was first diagnosed back in 9-05 after having endured 5 epidurals pre-op, actually becoming semiparalegic for hours on the 5th one, and spinal fusion surgery which I lost 1 week out of my life due to a serious infection post-op. I was once a nurse who so whole heartedly believed in the medical community and its services but after being diagnosed my whole perception changed, when I became a victim to it. After my surgery, and prior to my diagnosis, I was still having so much pain, my surgeon after a while began losing belief in me and my complaints, he found it impossible that I could be in so much pain still. He even went as far, as refusing to give me any pain meds one night while I was admitted to the the hospital for pain, all I could do was cry and scream all night with agony!! The next day, considering my pain was still there, and the other patients were complaining and I has called every supervisor possible, finally an MRI was done and thats how I was diagnosed. the surgeon non-chalantly shoved it off as just a inflammatory response and practically tried to push the electrical stim unit on me, but I refused, and declined any further medical intervention from him. My sister and I quickly tried to do as much research as we could on the diagnosis, but of course at the time, there was limited amount, and whatever we did find surely hit home and helped explain all the symptoms I was feeling but also put great fear into me in regards to what was still yet to come. At that time pain was the main factor, no other bodily function or symptom was noted. Today I have deteriorated to a certain degree. My bowel and bladder have been affected, those functions have been made almost impossible. Practically every organ in my pelvis has also been affected, needed to have a hysterectomy(which was the worst thing to go thru because I so wanted to have another child), my kidneys are slow as molasses, and my adrenals glands are also slowing down making my sleep/awake cycle eradic. Besides that I am now in debt to my dentist due to all the constant dental work I need to get due to horrible effects of the pain meds on my mouth. I have endured years of agony but my strong faith and supportive family keeps me going day by day. I no longer live life for myself, I now live life thru my daughter's. Unfortunately they have been very deprived because of my limitations but they have taken it like champions, one is even telling me she is going to be a doctor when she grows up just to find a cure for me, even though she is only 7, her intentions are still adorable. The fact that she even has to say that saddens me, because at her age, even she understands that there is not enough help or info regarding this disease. Sure my pain doctor gives me pills to help some of the pain, the dose gets higher each time, when will it stop? how much can my body handle? I am too young to be the rest of my life on such drugs. I want a life, I am sick and tired of being Sick and Tired. Every day I am fearing a new thing to happen to me. I want to be able to not to have to fear this and think about what positive things will happen, what good will come, not bad. Does anyone else think this way?? I guess I am looking or a miracle to happen in regards to this disease, hoping they discover a treatment or cure to this, I feel more notice needs to be brought to this disease for it ever getting a chance to be recognized by the meducal community. Because when it does, thats when I believe we will get the proper care we deserve... Would love to hear any advise anyone has.....Love Lu

Welcome to Tom Mostello

2010-04-24T15:30:00.001-06:00

Please welcome Tom Mostello of Indiana. Tom welcomes your email and his email address is tmostello1@msn.com.

Tom was diagnosed with arachnoiditis/lower back April 2010.

Welome Barbara Provis

2010-04-24T15:23:00.001-06:00

Please welcome Barbara Provis of the UK. Her email address is b.provis@ntlworld.com and she welcomes your email.

Barbara says:

"Let me intoduce myself (cut & paste from another site) - my name is Barbara Provis aged 67 years - retired nurse, live in Surrey in the south of England. I am married, have one son and two grandaughters. I have had Adhesive Arachnoiditis since 1978 - so 32 years. Symptoms have gradually increased over the years. I wasn't given any information to begin with so had no expectations one way or another; when I was diagnosed in 1990 I was told that I would probably be in a wheelchair in 10 years time.

Pleased to report that the only time I need a wheelchair is at airports when doing transatlantic flights.

I also have two non malignant tumors in my spine at C12 and S1; collapsed C11 vertebra and osteo-arthritis of spine, hips, feet and hands.

I do use a walking stick/cane or elbow crutch now.

Like most people with AA. I have followed the usual route; several epidurals of Depomedrone, myelogram, laminectomy, spinal fusion, plus hundreds of sessions of traction, physiotherapy, Pain Clinics, plaster jacket, first 6 facet joint injections with piriformous injections in 1997; 2001 had more facet joint & piriformouse injections, last session in November 2004 I had 3 Injections - Bilateral Sacro-iliac Joint injection with steroid (Depomedrone) & local anaesthetic. One injection of Botox to right Piriformous Muscle, followed a week later with a steroid (Depomedrone) to right ileo facet joint with no benefit whatsoever.

The first two facet joint injections were quite good with considerable pain relief and I was very grateful for the reduction of pain, however the last session in 2004 made the pain level go through the roof and has never really calmed down. I have since wized up about Depomedrone & refuse every time it is suggested now.

At present I take Tramadol, Paracetamol, Amitriptyline, Phenytoin, Nitrazepam, Lidocaine Patches & since my osteo arthritic hip became acute in September, Butrans Patches.

Acupuncture, which I have been very lucky to receive for the last 11 years, gives a little relief but the clinic has closed down - I'm very disappointed.

Now 8 weeks into recovering from a hip replacement; down to one crutch now and recommenced driving the car again!

I have discontinued the Butrans Patches and going through withdrawal symptoms, especially at night.

I like to keep as busy as possible during the day and am very involved with the local community - it's my way of distraction therapy.

2010-04-24T15:20:00.002-06:00

Please welcome Mark McLaughlin of Pennsylvania. Mark's email address is radagahst@aol.com and he welcomes your email.

Mark says:

"I have had an interthecal pump for the past 11 years. I am getting about 18 mg/day of dilaudid through the pump also a local anesthetic and an anti-hypertensive. For about a year and a half I have been experiencing bouts of intense burning in my legs that is not helped at all with medication. My legs also feel like they are vibrating all the time. My pain doc does not want to go any higher with the medication in my pump. He has been given me a couple of epidural injections over the past 8 months. The first one helped for a while, the second less so. I am concerned that there isn't much more that can be done for me and the pain will become completely unmanagable."

Welcome to Dawn Fee

2010-04-24T15:17:00.001-06:00

Please welcome Dawn Fee to our Group. Dawn is from Ireland and welcomes your email at dawnfee@eircom.net.

Welome Victoria Johnson

2010-04-24T15:13:00.001-06:00

Please welome Victoria Johnson of California. Victoria's email address is husingrehab@sbcglobal.net and she welcomes your email.

Victoria says:

"I was just diagnosed with arachnoiditis yesterday. I thought the surgeon would do surgery for scar tissue removal and he said that surgery would only make me worse. Bummer! It's hard to have to think of living with this much pain the rest of my life. Glad I found this site."

Please welcome Mike Perry

2010-04-24T15:09:00.001-06:00

Please welcome Mike Perry of California. You may email him at baja.mike.perry@gmail.com.

Mike says:

"I broke my back in 1974 in a parachute accident while on active duty with the Air Force. The back healed and with only occasional problems from time to time, I led a very active life (fighter pilot, commercial airline pilot, actor, business owner, financial planner).

Then, one day a little over two years ago I woke up with severe pain in m lower back and it never went away. My orthopedic surgeon did MRIs of my back and found degenerative discs, spinal stenosis, and arthritis. They diagnosed the pain as pinched nerves from the compressed vertebrae and wanted to do Epidural injections for the pain. I opted not to have epidurals, but instead went with opiod drugs. My pain mgt Dr. found scar tissue in the arachnoid area and rediagnosed me with Arachnoiditis.

My symptoms include chronic severe burning and sharp pain in my lower back shooting down into my buttocks, and sometimes down my legs. The pain is worst when I sit and limit my standing to a very short period of time. I end up spending an average of 18 hrs a day laying down. I have Headaches with blurring of vision. Extreme weakness, often staying in bed for days. Night and Day sweating for no reason. I often wake up soaked in sweat. I have a sharp pain in my lower right abdomen that has bothered me on and off again from time to time. I have problems with sexual dysfunction, constipation and trouble urinating. A veritable nightmare.

I had never heard of this disease until my Dr. diagnosed me with it on Tuesday (2 days ago). I have been dealing with this for over 2 years and it's not surprising to me that it's incurable."

Welome Desiree of New York

2010-04-24T15:02:00.001-06:00

Please welcome Desiree of New York. She welcomes your email. Her email address is dford711@yahoo.com.

Desiree says:

"I had 2 bad ephidurals the second one causing nerve damage in my right leg. I am having a hard time accepting the fact that I have to live like this. I just started the Nucynta and I really like it with flexerall or tramadole. My system is going through mad changes and lately I feel like I'm in a bubble. Sometimes I feel like I am taking too much meds but don't want no part of the pain. I feel like my life is not going to be too long if I have to continue living like this. I don't like going outside because I feel handicapped and I am too young. Don't know how to function any more."

Welcome Lori Verton

2010-03-25T11:34:00.001-06:00

Please welcome Lori Verton of Ontario, Canada. Lori welcomes your email to her at calliopelv@yahoo.com. Lori has Adhesive Arachnoiditis, spinal stenosis, extruded diss and fibromyalgia.

Welcome Sharon of Ireland

2010-03-25T11:05:00.002-06:00

Please welcome Sharon of Dublin, Ireland. Sharon welcomes your email at sharongillece@yahoo.co.uk.

Sharon says:

"Than you Karen for sharing this with me, I have read with interest your Journey so far. Its incredible and I so want to be your Dr's 1st Irish Guinuine Pig, I find the life you are living right now, its where I want to see myself in maybe a years time. I have listed the suppliments and vitamins that you take and I hope to bring it up with my GP(PC) on my next visit,I dont know whether he will be willing to help me. But nothing ventured nothing gained.

But life is good I am a very Lucky Girl I have the support of a Wonderful Husband who has been my rock through all of this. I have 2 Beautiful Children So 20 in Oct and daughter was 17 in Jan,

Once again Karen I am so happy that this protocol is helping you, and I look forward to meeting you in France July 1-4th,
Love Sharon aka Luckysg"

Welcome Courtnea Smith Stark

2010-03-25T10:42:00.001-06:00

Please welcome Courtnea W. Smith Stark of New York. Courtnea welcomes your emails at courtstark@juno.com.

Courtnea says:

" I am disabled with Arachnoiditis, have been unable to work 2001, one year after spinal stenosis surgery which flared my Arachnoiditis so badly I was unable function let alone work. At the time of my diagnosis of Arachnoiditis, the two neurosurgeons that I saw said I needed the surgery, but didn't "seem" concerned about the arachnoiditis. In other words, they didn't know or care about it and it's effect on me after the surgery. I have been under the care of some very caring and competent Doctors for the past ten years and will gladly tell anyone who asks who they are and what they have done for me. I do have many problems related to Arachnoiditis and the meds I have been on but I try to ive eah day as it comes.
I would like to thank the founder of this website it is a great place for us to share."

Welcome Regina Allemond

2010-03-25T10:02:00.002-06:00

Please welcome Regina Allemond of Texas. Regina's email address is rallemond@comcast.net and she welcomes your email.

Regina says:

"I added you on Facebook. Thanks"

Welcome Lisa Brouwer

2010-03-19T14:02:00.001-06:00

Please welcome Lisa Brouwer. Lisa's email address is leeli.b@gmail.com. Please email Lisa. Lisa says:

"Hi there i have just bee diagonised with Arachnoiditis after surgery and i have a 8 month old daughter and i have know idea what this disease is of how to manage it. I am hoping for some advise guidence on this matter. Thank you."

Welcome Louis Vetere

2010-03-19T13:30:00.001-06:00

Please welcome Louis Vetere of New York. Louis has mild arachnoiditis. He welcomes your email at lvetere@optonline.net.

Louis says:

"Just a question...my spinal injury occurred in 1979 at the age of 21. Since that time I have played basketball touch football, golf and skied for many years. I still workout with weights, jog and play golf (walking). After being diagnosed with mild arachnoiditis about 10 days ago. I'm experiencing tingling in the legs and a pressure in my lower back. But no real substantive pain. Is this how is starts or should I be experiencing a great deal of pain? Just curious!"

Welcome Jackie Scott

2010-03-19T13:22:00.002-06:00

Please welcome Jackie Scott of Oregon. Jackie's email address is jackienren@gmail.com and she welcomes your contact. Jackie has Arachnoiditis and chronic lumbar radiculopathy.

Jackie would like to suggest a provider:
Dr. Stacey OHSU Comprehensive Pain Center Portland, OR (my recommendation)

Welcome Peter Groves of Austrailian Arachnoiditis Sufferers Queensland Association Inc

2010-03-19T08:35:00.003-06:00

Please welcome Peter Groves of Queensland, Australia. Peter welcomes your email. His email address is p.groves.aasqa@bigpond.com

Peter says:

"I was injected with Myodil and Dimer x in 1976, followed by a laminectomy, later worked for 2 years then gave up due to failed back syndrome,1993 diagnosed with Arachnoiditis.2002 a 5day expose`in Sydney newspaper of contrast and 42 year medical cover-up exposing dangerous chemicals in x-rays of the spine.it was then I realised that I was a victim of this conspiracy and fraud that the medical profession was a part of with no informed consent. I firmly believe this is the worst medical scandal of the 20th century. AASQA, the support group I set up in 2003, is looking for recognition and a royal commission of inquiry into the abuse/use of Myodil/Patopaque that was used without licence or approval,the federal government put the public safety at risk,had a duty of care to protect the public failing to do so manifesting a betrayal of public trust. This is criminal fraud, casting the contrast as a means towards fatal injuries,with no treatment or cure. AASQA now has an office provided by the local council and we also have $11,000 in government grants and well on the way towards recognition we have federal government recognition and state government the federal government has AASQA in it`s national long term health strategy for the future."
Peter J Groves
President(AASQA Inc)
Australian Arachnoiditis Sufferers Queensland Association Inc
p.groves.aasqa@bigpond.com

Please welcome Jen

2010-02-07T13:28:00.002-07:00

Please welcome Jennifer Singleton of Canada. Jennifer's email address is Jennifer@pacbrake.com and she welcomes your email.

Jen says:

"Hi My name is Jennifer and I have had Arachnoiditis for 2 years maybe more. I was in a dramatic water skiing accident 12 years ago that resulted in a burst fracture of my L2,3,4 (I think) I know I have a multi level fusion, my hardware was taken out as it annoyed me and I broke it (I don't really sit still). I was 10 years doing fairly well I knew when I had to rest etc and I looked after myself I have a great support group and family. Gradually the pain became more intense in my lower spine and legs so my GP put me on a waiting list so I could see my surgeon (I live in Canada and the wait lists are long at least 6 months or more) during that time i was in another water skiing accident where i hyper extended my back at 35mph and all i heard was a large crunch, I was scared and sick. I went to hospital and they said my xray is so messed up they could not read it and to go back to see my surgeon as I had nothing unstable..So when I finally got in to see my surgeon I!
had so many things wrong I think i confused him and myself!..he did an MRI and said that I had advanced Osteoarthritis and he could do Facet joint injections to diagnose what worked. I worked with him for a year doing injections 3 times, when my pain became worse and i was crying and losing control. He said he had never seen me like that and so he believed me and he researched further finding i had a badly misaligned vertabrae on top of my fusion that he would need to fuse and he put me on the wait list for surgery (he moved me up to 3 months..that's fast for here he felt bad he missed this and it is more likely from my second accident)..fast forward to now..one month later.i am in emergency with severe leg and lower back pain that i cannot get under control...he comes in I tell him my leg pain is intense he shrugs his shoulders tells me my MRI is fine and he does not know what to do for me..he was very cold and kind of jumpy..he also told me that the vertabrae above my !
fusion was not a badly misaligned as he thought and he is rethinking t
he fusion (that made me laugh because in his office he was jumping around and could not believe it when he saw it and he gave me no other option but to fuse it) he was truly acting strange..but i know he is busy..so he said you have Arachnoiditis, I have known for 2 years (he had to tell me because at that point other ortho staff were looking at my MRI and attending to me because emerg thought i was a true spine emergency as i had bladder retention and leakage and my BP had spiked), I saw it on your first MRI..i said what??is that arachnophobia..what?? I was laughing..cause that's just me.. but he was not! not this time..he said it so fast and he would answer no questions just that it was inflamed and he would not operate or do anything for me and said..i am sending a neurologist down to see you..and that's when i was told..the neuro guy was great! he was kind and helpful and he gave me his card to come in any time and see him with any question I may have...and now that i have!
e been on researching i have lots! and I want my MRI..

I am disappointed in my doc (surgeon) he should have told me when he knew, it is my body, and he should have known that i would never have blamed him..the water skiing accidents are all on me! my fault 100%..he saved my life..anyone that looks at my pre surgery accident jumps up and down and says you should be in a chair..with a diaper..i looked up to him..and then this..I am left confused.

Thank you for allowing me this opportunity to tell my story! I sure appreciate it..so i am new to all this..and i am a feisty little thing so..we will see what happens..I do not know what stage or level i am at..Thank you again Jen"

Joan of California

2010-02-05T14:50:00.002-07:00

Please welcome Joan Dagostino of California. Joan has a diagnosis of spinal arachnoiditis and she welcomes your email. Her email address is joandag@hotmail.com

Joan says:

"I have spinal arachnoiditis diagnosed in 1986. On Jan. 16, 2010 and it was the most painful procedure I have ever had (mind you I have had several epidural blocks) The reason for this block was severe pain in legs and lower back. I have fallen 3 times last week. I am losing the strength in my legs to where I am now using a walker. I have no balance whatsoever. My legs are so very weak and I have began to notice about 2 months ago, and it seemed every week they were getting weaker and weaker. Just a few months ago I could do so much and now I cannot. WHAT IS GOING ON? And the pain is so severe, that I get no relief at all until I can take my meds. But, let me tell you I am so so scared because of legs have changed. Also my ankles were so swollen that my Dr. put me on Lasix and the swelling has gone down. But I don't know why all of a sudden I have such terrible changes with terrible pain."

Welcome Kay of UK

2010-02-05T09:22:00.001-07:00

Please welcome Kay of the UK. Her email address is teambiscuit@hotmail.com and she welcomes your email. Kay's mother has arachnoiditis and multipe sclerosis.

Kay says:

"My mother is a powerhouse - despite the pain, refuses to take any painkillers unless really bad! We always say (behind her back!) that by rights she should be at least wheelchair bound by now but her stubborness is keeping her going! Utterly respect how she tackles her conditions but I want to be able to offer more support as we get older and be able to provide feasible suggestions for things to try in treating it (given the NHS here in the UK couldn't care less). Would like to know more about developments in treatment and also tips from other people who have both these conditions on how they cope!

Also, when I spoke to my physio about her condition he immediately said he would never be able to do work that involved her spine directly as the MS made it too risky and would have to concentrate on keeping strength in her legs etc - she herself has been turned away by 2 different physios who refused to treat her because of the MS, let alone the arachnoiditis! Is this what other people have experienced? And can anyone recommend proactive physiotherapists in the UK who have experience in working with these conditions?

Many thanks for your time!"

Please welcome Michael

2010-02-05T09:14:00.001-07:00

Please Michael Nees of Minnesota. Michael welcomes your email to michael_nees@yahoo.com

Michael has Failed Back Surgery Syndrome and possible Arachnoiditis.

Welcome Tokunbo

2010-02-05T09:09:00.001-07:00

Please wecome Tokunbo Adeniji of Maryland. Tokunbo's email address is ozeyi@aol.com and your email is welcome.

Wecome Donald Heaney

2010-02-05T08:46:00.002-07:00

Please wecome Donald Heaney of Ireland. Donald's email address is donalheaney@yahoo.co.uk and he welcomes your email.

Donald says:

Surgery history:
1997 Microdiscectomy at L5/S1
2001 Spinal tumour (ependymoma) resection
2003 Further tumour resection
2004 Scar tissue and tumour removal
2009 Spinal decompression at L4/L5 and L5/S1

Most of my pain is neuropathic (burning, stinging) in the legs, presumably from arachnoiditis, epidural fibrosis. I would be interested in any innovative/experimental treatments.

Please email Paula of California

2010-02-01T06:47:00.001-07:00

Please welcome Paula Ptacek of California. Paula's email address is tpizoopaula@mac.com and she would like to hear from you.

Paula says:

"wow! i hope someone can help me. had back surg (and myeogram) 15 yrs ago, laminectomy l2/3. long recovery but mostly ok until diagnosis of Multiple sclerosis 4 years ago. doing ok with betaseron treatment after initial blindness and semi-parqalysis. have had a lot of MRI's with contrast over the last 4 years for diagnosis, research and recurrent back problems, including 3 months of lower back pain radiating to right leg.. had an mri which demonstrated the spine of an 80 year old, sort of out of the blue compared to others==ie, severe spinal stenosis in 3 discs, bone spurs impinging on spinal column, and.... get ready for it..... arachnoiditis! i'm wondering how one 57 year old got so damn lucky! did i mention that I was a picu and nicu nurse for 30 years as well as a nursing instructor at UCLA and i don't know anything about most of this?
anyway, found an orthopod who knew he couldn't treat the ms or arachnoiditis, but felt he could remedy the rest of my back issues and provide me with some spinal stability. had surgery 6 weeks ago and all ok, except!!!! bursts of spasms/pain in one spot in my lower back when i least expect it, causing shouting out in pain and total body spasm. also, now have the appearance of a rash on my right buttock, which doesn't go away. now i don't know who to go to, what to do. ms doc says arach is not her thing, oorthopod is followwing the pain wondering about surgical issues. can anyone help? does any of this sound familiar?"

Donna asks you to email her please!

2010-02-01T06:40:00.003-07:00

Please welcome Donna Cole of Missouri. Donna has Adhesive Arachnoiditis and would welcome your email at dlcole2828@aol.com.

Donna says:

"I currently have AA and suffer also from permenant nerve damage in my left leg, 2 bulging discs and I have a spinal fusion in the L5 S1 area. I have a spinal cord stimulator, but I don't use it because the vibration makes the pain more intense. I became addicted to prescription Methadone (pain meds), so in 05/09 I went into rehab and have been drug free and in pain ever since. Now I depend on God and sleep to get me through each day. It would be nice to communicate with someone who knows what it is like to walk in my shoes each day.

Thank you,

Donna Cole"

Welcome Leah in Georgia

2010-02-01T06:36:00.002-07:00

Please welcome Leah Wright. Leah's email address is paininzeeback@att.net. She welcomes your email.

Leah would like to suggest a provider in Georgia: Shepherd Spinal Center - Pain Institute.

Welcome Bobbi Jo

2010-01-29T10:49:00.001-07:00

Please welcome Bobbi Jo Ferge of Wisconsin. Bobbie Joe has failed back surgery and lumbar arachnoiditis. She welcomes your email to b_j_ferge@yahoo.com.

Bobbi Jo says:

"Hi All,
I've recently been diagnost with failed back surgery, scar tissue, and lumbar arachnoiditis. So I've been searching the web for information, forums, and support groups, and I was given this site. I've looked the site over, and you all sound like wonderful people. I'm just sorry that we have to find each other this way.
My jouney with this disease is not as long as some, but I can relate to the frustration, and the lack of knowledge of people to this condition. Going from doctor to doctor, praying for help, and relief from the madding pain. I have gone thru my share, and living in rural northern Wisconsin hasn't helped. I have finally found a good support team of doctors to help me. That is such a relief.
Also like some of you, I have a very small world of interaction with the outside world. I use to have alot of friends, but no more. They slowly faded away for numerious reasons. Now find that my friends are coming from support groups like this, because we understand each other. We know what each other is going thru, and we offer support with no strings attached.
I look forward to getting to know all of you, and to helping in anyway that I can.
Bobbi Jo"

2010-01-29T10:47:00.001-07:00

Please welcome Bill Wallace of California. Bill has Arachnoiditis due to trauma. He welcomes your emails at bwallace_2000@yahoo.com.

Bill says:

"Suffered severe ski accident 1/1/09. Lucky I can walk but have significant arachnoiditis with brutal pain numbness and tightness. 2 questions; Does the severity of arachnoiditis change over time? Has anybody in your group rcvd pain relief from a spinal chord stimulator?"

Welcome Ali of Kentucky

2010-01-29T10:45:00.003-07:00

Please welcome Ali Nair of Kentucky. Ali has Arachnoiditis. Ali welcomes your email at nairali@yahoo.com.

Welcome Mary Ann of Washington

2010-01-29T10:41:00.002-07:00

Please welcome Mary Ann Levine of Washington. Mary Ann welcomes your email. You may email her at mlevineusa@hotmail.com.

Mary Ann says: "Just checking in. It is nice to know that others out there do understand this horrible disease."

Daniel from New York

2010-01-29T10:37:00.002-07:00

Please welcome Daniel Cocca from New York. Daniel has a diagnosis of Arachnoiditis. He welcomes your email to dpchjc@nycap.rr.com

Daniel says:

"I was just recently diagnosed with this awful disease, I had spinal fusion surgery performed to L2 - L4 after being struck by a motor vehicle while directing traffic as a police officer. After approx 4.5 years of continued physical therapy I continued to have restless legs in the evening hours and continued to exercise thru the pain. Upon a MRI being performed I received the dreaded news that it appears that I have Arachnoiditis. And my journey begins all over again in the quest for treatment."

We are running behind

2010-01-24T18:04:00.002-07:00

There are many new members that we have not been able to post. We will do our best to get these up in the next week.

Thank you for your patience.

Life With Arachnoiditis

From Carrie

2010-01-24T17:47:00.002-07:00

Please welcome Carrie Trompeter of Kansas. Her email address is carseat@sunflower.com and she welcomes your email. Carrie has a failed L5-S1 spinal fusion and undiagnosed arachnoiditis.

Carrie says:

"I have intractable pain from multiple mid/low back ESIs, myelograms, discograms, & CT scans/an MRI/a bone scan with dyes over the last two years. I need to find a specialist in the Kansas City, KS or Kansas City, MO metro area since my "pain specialist" does not think i have any problems but pain from failed spinal fusion surgery. Even though every procedure he did on me caused increase in pain and symptoms. Should I seek a Rheumatologist, or a Neurologist for the appropriate tests to find out if I have arachnoiditist? Should I try my family Dr. even though he works with my pain specialist? Any suggestions? Carrie"

From Claudia

2010-01-24T17:23:00.002-07:00

Claudia in Florida sent in notes for readers. You can email Claudia at cklaurence@gmail.com

Claudia says:

"I have been looking for a physician who is actually familiar with arachnoiditis and treats the disease, who would discuss it with me.
I had an MRI early in 2009 because of horrific pain in my back and leg, and the radiologist gave a written diagnosis of Arachnoiditis. Three other physicians (all orthopedic surgeons - all with M.D. degrees) spoke with me about it.
The first did not think it was important (I believe he thought I was just scamming him for drugs) and referred me to a spine specialist.
The "specialist" showed me the film and pointed out the arachnoiditis, and then, because he believed the pain was from a ruptured disc, referred me to his associate for an epidural. I vehemently protested that this pain was nothing like disc pain, however, he and his associate reminded me that they "were the physicians," and insisted that the epidural would help the pain. It did not, of course, and actually exacerbated it.
The only physician I have seen since is my pain doctor. He is kind, caring and understanding (and treats several arachnoiditis patients), and in my once-a-month visits, adjusts my medication to try to keep a little ahead of the excruciating pain. There is no doctor locally that treats arachnoiditis.
My pain has increased over the past couple of years. Often, I can't get out of bed in the morning until my medication begins working. I have the whole array of symptoms, from "shocks," to ice water running up and down my leg and back. My joints ache constantly and my hands grow more and more crippled. Some days and nights I sweat profusely for hours--drenching my hair and body, clothes and bedsheets. A burning tightness in my hip, butt and leg often makes walking difficult. Some days I don't even want to get out of bed, except for the fact that I wake up in pain FROM laying on it!
I asked my best friend, who is a family physician, why there are no doctors who treat this disease. She advised me that doctors do not want to be associated with "hopeless" diseases. She was just being honest with me, not cruel. I have read articles on the internet wherein physicians stated that one is better off with a diagnosis of cancer than with arachnoiditis. Their reasoning? At least with cancer you have a chance of getting better--or dying, and either way, you would be out of pain. Arachnoiditis is a lifetime sentence. That is cruel...but true, as well."

Update from Tennessee patient on Kovacik Protocol

2009-12-03T05:02:00.001-07:00

Pasting in email received from Connie in Tennessee. This was sent on Dec. 2, 2009 and just picked up by Karen Kovacik, today, Dec. 3, 2009:

Connie sent you a message.

Subject: latest treatment

"Hi! Karen - Just wanted to send you a quick note to let you know that the Vit. C - Mag - GSH treatment that I got on Mon. pm was the best treatment yet - relief was almost immediate & it has continued thru today. I'll get the PK protocol tomorrow. Tell Dr. Holsworth that he's the greatest - you too, for allowing me to be included in the trial. I walked 3 miles today."

Accidentally deleted Wendy's comment

2009-11-30T05:32:00.001-07:00

Wendy,

Could you please resubmit your comment to Gregg's post? We accidentally deleted it.

Thank you, Wendy!

LWA

Eric Drew

2009-11-30T05:30:00.001-07:00

Please welcome Eric Drew. Eric's email address is eric@ericdrew.com.

Eric says:

"I have been recently diagnosed, so I am just learning about the disease."

Welcome Eric. Please reach out to our membership with questions. Visit our Facebook at Life With Arachnoiditis for face to face interaction with others.

LWA

Sherri Crider

2009-11-30T05:25:00.002-07:00

Please welcome Sherri Crider. Sherri's email address is dscrider@att.net. Sherri says:

"I have AA and am seeking information. Thank you."

Sherri, welcome to our group. Please feel free to email others for more information. Our Facebook is becoming more popular and is a way to interact with others face to face. You can find us at Facebook and search for Life With Arachnoiditis.

LWA

Jacqueline Fox of Cambridgeshire England

2009-11-30T05:20:00.003-07:00

Please welcome Jacqueline Fox from Cambridgeshire England. Her email address is: silver_fox1410@hotmail.com

Jacqueline says:

"I'm with the NHS UK. Hello there, I developed Arachnoiditis, after my Dura-mater was accidentally cut during a back op, in 2000. Since then I've been controlled resonably with Gabapentin/Tylex & Volterol. I am now on the maximum dose of Gabapentin, wondering if any other treatments or drugs out there? Regards Jacqueline"

Welcome Jacqueline. Please reach out and email others and be sure to visit our Facebook where you can "see" and interact with others.

LWA

Rosy of Texas

2009-11-30T05:16:00.002-07:00

Please welcome Rosy of Texas. Rosy's email address is rosy457@yahoo.com.

Rosy says:

"I need tips on managing the pain."

Welcome to LWA, Rosy. Please reach out and email others that have listed their email address. We are here for you.

LWA

Derek from Australia

2009-11-30T05:13:00.002-07:00

Please welcome Derek from Australia. Derek's email address is:
aussie_redback66@yahoo.com.au

Derek's diagnosis is: Chemically Induced Adhesive Arachnoiditis caused by the contrast medium used being too toxic for human use, also arachnoiditis and fibrosis.

Welcome to our group, Derek.

LWA

Anna Morgan

2009-11-30T05:06:00.002-07:00

Please welcome Anna Morgan of Florida. Anna's emails is annathea25@gmaail.com

Anna says:

"Arachnoiditis was featured on an MRI taken in 1995. I had had four laminectomies and then had a 4 level fusion (L-4 - S-1). I also had 2 myelograms in the 1970's. After the fusion I hAd a year and a half of relief, then I had unrelenting pain which required large amounts of prescription pain killers. In 2002 I was lucky enough to receive an intrathecal pain pump, which changed my life. This horrible disease forced me to neglect my family and ended my career. I have a Master's degree in education and had taught for 27 years. Two years ago I received my SS Disability on the first request. Today I live the best I can with a fantastic husband and daughter. They are the world's best at understanding and helping. I also have complete foot drop in my left foot."

Input from Patient on Kovacik Protocol

2009-11-29T06:00:00.000-07:00

Hello! My name is Connie Keeler and I'm the patient from Tennessee that visited Karen and Dr. Holsworth for 10 days. I had a wonderful time walking with Karen each morning and seeing Dr. Holsworth for the treatments. I've been back home for one week and have been able to continue my treatments. I have been able to decrease the amount of pain medicine that I take by 25% and I'm sleeping better. I can't say enough good things about Dr. Holsworth and the protocol that Karen and I are on. My doctor in Tennessee has been able to communicate with Dr. Holsworth and supported my trip to Colorado and is ordering the same treatments for me in TN. I am very excited about my improvement. I would encourage any one with arachnoiditis to consider getting in touch with Dr. Holsworth and going to see him so that you too may also receive the treatments and begin to fell better. I feel that I have received an early Christmas present. God does wonderful things through his special angels (Karen & Dr. Holsworth)!

Patient from Tennessee

2009-11-28T05:11:00.003-07:00

There is another patient on the exact Karen Kovacik protocol. A patient visited Colorado, undergoing treatment with Dr. Holsworth for two weeks in November. This patient also experienced improvement while undergoing therapy. Patient wrote after returning home to Tennessee that she continues to improve after each treatment.

This particular patient never had back surgery but did have many ESI's. Patient was diagnosed with arachnoiditis in May 2009.

We have asked this patient to publish her experience. Things don't always move fast when you have arachnoiditis, so her story make take some time.

Karen Kovacik, LWA

Update on Karen Kovacik

2009-11-27T16:05:00.002-07:00

Progress Updated to November 27, 2009:

I am so very thankful. A little over a year ago my life was looking pretty bleak. Right now, life looks promising and I am narcotic free now for over 6 months. Diazepam free just about 6 months. This morning, for the first time, I did my hike up the mountain with 2 tylenol and NO robaxin. Made 4.6 miles handily and it may be time to look at titrating off robaxin.

For a few months now I have had twice weekly therapy. The ascorbic acid (vitamin C) seems to work best for me at 40 grams with 4 grams of magnesium. Dr. Holsworth also added a glutathione push (GSH) after each C/mag IV and it has worked beautifully. The second treatment of the week is phosphatidylcholine infusion with GSH push followed by sterile water.

Almost all leg nerve pain is gone ... most of the time. It kicks up when I go skiing. I can lift my grandson (about 35#), I can load 20# bags of bird seed and dog food into my shopping cart! The past few weeks I can crawl into bed at night without pain creeping in after a few minutes .... and I mean *no* pain. I've teasingly told Dr. Holsworth, "If I get any better, you won't be able to stand me!" I am so thankful and so very humbled by the progress we've made. What a gift to have Dr. Holsworth on my team.

To stay updated on my activities, send me a friend request on Facebook. Look up Karen Kovacik and in your friend request message box please identify yourself as having read my profile on Life With Arachnoiditis.

Go to www.acam.org to learn more about alternative medicine. I've learned the "impossible just takes longer!" I am very close to having my life back ... it will be a life long journey I believe.

God bless you all. Please don't hesitate to contact me if you need anything.

Karen

Welcome Brian Heilmann

2009-11-15T16:15:00.004-07:00

Please welcome Brian Heilmann of Arizona. His email is sentinel50@frontiernet.net. He has been diagnosed with arachnoiditis and has had surgeries in 91, 96, 99, and 07.

Brian says:

"I use to be a Special Ops Member for the USDOJ until I was in a repelling accident 1991. I had a discectomy and it was ok until I got injured on the job again. Laminectomy in 1996; and then Instrumentation 1999 and retirement. In 2007 I had a failed attempt to put a SCS in my back. Too much scare tissue so Percacet and Lyrica. I still have tremendous pain I am getting very tired of it. I am interested in exercise and the vitamin regements suggested in the lead article by KK. thank you Brian Heilmann"

Welcome Gregg

2009-11-15T16:09:00.001-07:00

Please welcome Gregg Newman. Gregg's email is greggoo7@aol.com. He is from Pennsylvania and has been diagnosed with arachnoiditis and failed back surgery syndrome.

Gregg says:

"I have had 7 lumbar surgeries over the years. I am now experiencing severe pain, throbing, electrical shooting, numbness, tingling, burning, freezing cold and many other horribly debilitating sensations in both my legs and feet all the time. I was wondering if anyone else has these very painful symptoms and what do they do for relief of them. I've heard Neurontin works well, is there any thing else? Is anyone using Neurontin successfully? What strength are you using? What about those experimental drugs? I would like to be in the trial if possible. Please help me. My pain and other symptoms are getting progressively worse."

Welcome Mary-Ann

2009-11-15T16:02:00.001-07:00

Please welcome Mary-Ann Brewster-Leroy of South Africa. Her diagnosis is arachnoiditis. Email her at mary-annb@xsinet.co.za

Mary-Ann says:

"I have just been diagnosed with arachnoiditis and have looked on
the internet for articles. I feel very frightened as the doctor who
diagnosed me let the phsyiotherapist tell me then he left for overseas.
I am 58 years old and normally nothing knocks me down but this is just too
much.How does this progress? Is it quick or is it over many years. I need
to prepare my future life.
My husband is 84 years old and my daughter and family leave for Austrailia
soon then I have no-one.I am so frightened."

Welcome Candi White

2009-11-15T15:58:00.002-07:00

Please welcome Candi White of Florida. Candi's diagnosis is epidural fibrosis, fibromyalgia, brachial neuritis or radiculitis. Candi's email address is
candee2b@aol.com

Candi says:
"i am 44 years old. my first surgery was 13 yrs ago, a discectomy for a ruptured disc. my second surgery was 21 months ago, a interbody lumbar fusion with instramentation at L-5 and S-1. i did great until 5 months after surgery, i started feeling alot of pain, kept getting worse, tried pt, made it worse. i was diagnosed with severe epidural fibrosis of the L-5 and S-1 nerves. i have tried epidural injections and am now on pain managment with narcotics. i am in pain all the time and have to walk with a cane most of the time. when i go shopping, i have to go wherever there are scooters. i cannot pick up or do many things with my 2 year old grandson. i also have a herniated disc pressing on my spinal cord at C-4 and C-5 which caused chronic pain, headaches and my arms to constantly fall asleep. i drop things all the time. i also have just recently been diagnosed with fibro myalgia and am on cymbalta. can't take lyrica, makes me feel drunk. Thank the lord for my husband!
, he is the most understanding, wonderful loving man in the world and i could not get through this without him. there is nothing they can do so i try to deal with this the best i can. i applied for disability one year ago, they denied me two times. i have a lawyer and we filed an appeal 7 months ago. just waiting. before all this happened, i was a regional manager of one of the largest appraisal companies in florida. now i can't sit for more than 15 min, stand for more that 5 and cannot walk very far. there is nothing i can do for work and my husband is doing all he can. the medical bills are killing us. i have great faith in the lord and know this is happening for a reason, i just don't know what it is yet. thanks for listening. i pray for a miricle."

Message from Jon McHann, Cofounder

2009-11-09T16:13:00.001-07:00

Jon sent in a message and asked if we would post it for readership:

I have great admiration for Dr. Jones. When I was first diagnosed, her published work was the first thing I ever read on A.A. and I use her work constantly as a resource. I have recomended her work to every single person I have responded to through LWA and privately. OUTSTANDING!!!!!

Life has really slowed down for me. Pain dictates what I do and how fast it gets done. I only go to town now for appointments, and I have days when I cant take very good care of myself. I try to get out and walk with my animals once per day. Most of the time I get out to the barn, sit in the doorway where I have a chair. And hold court with a pail of cracked corn. I have not even been able to get to church for months now.

I am planning a trip to Huntsville, AL. to see my "local" leading neurosurgeon. We will talk about what can be done surgically for long term pain relief. My body is having a real hard time processing medications. So I now live in high pain 24/7. I am open to what he may have to offer, but I am not expecting anything. Deteriorating disease in my Cauda Equina is progressing, and of couse my lumbar AA just above that is constantly agitated due to that deterioration. I have lost all feeling in my pelvic area, and dowm both legs to my knees, then constant pain from my knees down. Any vibration sets off the A.A. symptoms. I spend most of my time sleeping in 2 hour periods all day. Bladder and bowel issues take up a fair bit of time.

Computer time for me is now down to a half hour a day a best. I dont even open alot of mail that contains humor type stuff as I don't want to waste my time, when I could be writting a letter like this one. Karen I am so proud of how you have carried on. The only thing I would like to see is possibly a closer knit membership. But that will come in time as we (LWA) is still young. I am fading fast here Karen, would you be so kind as to post this to F.B. for me and the LWA site. I am writing you personally first! It may be nice to use this as an update for folks as I "dont get out much anymore".

The relationship with God and his son, my saviour keeps me positive and in my trenches doing my battle every day. There is no way I would be here enjoying my animals, a great relationship with my wife and family without Jesus by my side.

God Bless You and all LWA members
Jon McHann

Diane Hardman and David Bolnick

2009-10-10T07:42:00.004-06:00

Please welcome Diane and David. Their information follows.

David Bolnick of Nevada, email bolnick@kkb-law.com. David says:
"I had a left-sided hemilaminectomy, foraminotomy, and medial facetectomy at L5-S1.

I had a great deal of left radicular leg pain after the surgery, which pain resolved 6 months after surgery, but for only 3 weeks. The pain then returned and got progressively worse.

I am now 8 months post-op. My surgeon says that the continued pain is caused by a disc which is impinging on the nerve root and denies that it is caused by E.F., although my post-operative MRI states "minimal epidural scarring and fibrosis along the left lateral aspect of the spinal canal extending out the L5-S1 foramen."

I am now on ibuprofen, lyrica, amyltriptyoline, welbutron, and hydrocodone, and the pain is worse now then it was before the surgery.

I read all of the biographies of the co-founders of your organization and I commend you all for your bravery and fortitude in the light of your very painful ordeals.

Kindest regards.

David Bolnick

-----------------------------------

Diane Hardman of Pennsylvania, email hardman3@netscape.com. Diane says;

Article or Research to Submit?: "No, but I have been looking into the fact that allot of us have had Depo-Medrol used during spinal operations."

"I had a Laminectomy on my L3/l4 and L/5 a partial discetomy in May of 08. That was after having gone through P/T and then they tried Epidural shots in my spine but I had a bad reaction. Only 1 other time did I have a reaction and that was through oral presidone but we found that I am allergic to all Steroids only other option was surgery. First surgery I thought went well my legs didn't fell as bad as they did when I first came in 2 days after op went home that night noticed leakage and started to get headache, I was told that I may have some so didn't pay attion to it. Next morning I woke up saturated in what looked like pink fluid, called husband at work then called doctors office no one called back they were gone it was a weekend, finally had one of my Dr.'s associates call me and said if it bothers me to sit up then to have someone take me to hosp. ER, Hubby came home and off we went. ER was busy and I was about to faint when they let me in to lay on one!
of their tables, after that I woke up in hosp. room. They didn't fix it till 3 days when my dr. usually does operations during that time I was on strict order not to move and not traveling to bathroom. Long story short he had to reopen suture tear in spinal cord clean up field and close. When I was allowed to get up pain was 100X worse than the beginning. Did the P/T thing again 1st in water which helped than land and water, land sucked. after awhile @4-5 mos. told dr. that something must be wrong felt like back wants to break in 2 pieces. He ordered a new MRI then said there was nothing much he could do and dropped me. Well I was still in severe pain went to see a neurosurgeon and he sent me out for a series of tests MRI,xrays of spin forward and backward and a Spect Scan. That's when I was diagnosed with all these things now wrong with me. I have lost 60 lbs., can hardly shower and change myself, new trick my legs give out and I fall alot (just broke ankle 2 days ago) and my arm strength is nill cannot pick or pull myself up anymore.
I feel like my body is wasting away, my eyesight is shot can't get a right script for glasses, my fingers and feet fell pins and needles and bunched up socks on my toes that even without socks and I do not trust my doctor anymore it seams he and the first doctor use to run a practice together and the last time I saw him he said not to make any appointments unless my Pain Management doctor orders it. Sorry about the book I must go and lay down now this was way too long.
Diane"

Rebecca's Provider

2009-10-10T07:28:00.001-06:00

Rebecca Lockley, email; lockleyhouse@yahoo.com, would like to suggest her provider:

"I am currently a patient of Dr Todd Sitzman in Hattiesburg Ms and I would recommend him to anybody."

Welcome Michael and Deb

2009-10-04T06:15:00.002-06:00

Please welcome Michael Soares of Colorado. Michael's email address is scoares@yahoo.com. Michael would like to suggest a provider, Dr. Scott Hompland, DO, of Denver, Colorado for pain management.

Also welcome Deb of California. Her email is dophindeb@sbcglobal.net. Deb says:
"I am new to absorbing the reality of my arachnoiditis diagnosis, and my new doctor is avoiding giving me information. My entire lumbar spine is fused after 3 surgeries that started 7 years ago. My challenge is trying to get my needs met with my "insurance coverage" with workman's comp. So, I'd appreciate any contact with someone experienced with work comp barriers. I was also just "awarded" Social Security Disability money that I'll be living on the rest of my life.....and it's not very much. I have no one to move in with, live alone in a big house on 14 acres, and am scared on so many levels."

From LWA: Please visit our members page and reach out to other members for more information. Also be sure to visit our Facebook page.

Michelle needs our help

2009-10-04T06:11:00.002-06:00

Welcoming New Members:

Michelle Knapp of Connecticut. Michelle's email is jmsns1989@aol.com. Michelle says:
"I am looking for any and all information I can collect about what I have been diagnosed with. I am confused, because from what I have read, all of the treatments that I have been put through seem to make things so much worse, yet doctor after doctor seem to make me repeat all of the same things over and over again. October 13,2009 will be one year that I have been experiencing my symptoms.

I suddenly awoke at 3am to being completely numb from the waist down, once I changed position, I got "pins and needles" and the feeling came back slowly. I went back to sleep and when I woke up that morning I was struck with some of the worst pain I ever felt in my life, to this day I am still in pain, there seems to be no relief ever.. I am afraid of becoming depressed.. I have so much difficulty even doing simple daily tasks like laundry for my children, I am no longer able to go out for walks and play with my kids.. I am losing hope.. I am scared, and feel very much alone.

My husband of 10 years is very supportive, although I still feel that no one understands and I need to hide my pain so as not to upset my family. I have been taking pain killers for months, I try to limit myself taking them so as not to become dependent on them. However; there are days that I simply cannot muster the strength to get out of bed without them.

I do not understand how or why this happened to me, I went the majority of my life without ever having any sort of serious injury or illness. The most I have had was a common cold and an occasional flu. How does one simply wake up with this one morning?

I am going to start a third round of physical therapy tomorrow. I am afraid of it, because the last two rounds caused me to become so overwhelmed with pain I lost conciousness on more than one occasion. My life is falling apart, my children are suffering right along with me because they do not have the mother that they did one year ago... and they do not understand where she went! I feel I am going to become more and more of a burden on my husband and parents. I have always been an active self supporter, very upbeat and positive.. and now I feel as though I may be heading towards a serious downward spiral. I need someone who understands what I am going through, someone to tell me how to regain my spirit. Please help me!"

From LWA: Michelle, please go to our members page and reach out to other members. Also sign up on our Facebook page. You are not alone.

Welcoming New Members

2009-09-24T12:26:00.002-06:00

Michael of Pennsylvania: Michael's father has Arachnoiditis. You may email Michael at levenson.michael@gmail.com. Michael says:

"My father was diagnosed with this disease over 20 years ago.

I recently have been encouraging my father to try a holistic approach to fighting this disease. Currently he is hesitant, as there is no information to support this approach. Coming across your website, is exactly what I need.

It is amazing to read your success stories and I look forward to reading more.

If you have any suggestions, please feel free to email me.

Happy healthy days ahead.

Michael Levenson"

**********

Raina Yarroch of Alabama. You may email Raina at raina.yarroch@gmail.com. Raina says:

"I would like to get in touch with the Doctor that is treating Karen and talk to him. I am a nurse and would like to know the treatment Karen is taking so that I may try it.

Thank you,
Raina"

**********

Below is the information submitted on Sep-20-2009 12:16 EST
----------------------------------------------------------------------------------------

Joan Bernard of Connecticut. You may email Joan at joanb800@yahoo.com. Joan says:

"I have had adhesive arachnoiditis since at least 1990. I was diagnosed with class 3 AA in 1995 and was told that I would be paraplegic but avoided this with acupuncture, diet, vitamin therapy and keeping as active as possible, however I had a full spinal mylelogram, lumbar, thoracic, cervical and brain in 1987. I had a bad epidural in October 2008 that caused me to go into a severe flare which by 3'09 had me paralyzed in lower extremities from hip down and caused non stop severe spasms in legs, back, neck, arms and forehead as well as 10+ pain and headaches. Acupuncture has freed the left side partially but right still paralyzed leaving me bedridden with a large L5/S1 'cyst'"

**********

Ted, Connie, Stephen

2009-09-13T06:56:00.002-06:00

Please welcome our new registrants:

Ted Hochman of New Jersey. Ted has a friend with arachnoiditis. You may email Ted at TedHochman@yahoo.com

Connie Benitou of California. Email benitou@sbcglobal.net. Connie would love to be contacted with anything hopeful. Connie says:
"Feeling very afraid, hopeless. Want to know of any meds/treatments, etc. people have found useful. Anyone experienced implantations for Arachnoiditis? Looking for ways to get through the day. Thanks."

Stephen O'Rourke of New South Wales, Australia. Stephen says:
"I was diagnosed with arachnoiditis about three years ago after about thirty years of back problems. When I read the list of possible causes I ticked nearly all the boxes. Oil and acrylic based myleograms, two laminectomies for ruptured discs, a couple of bad falls in my twenties and playing rugby football in my teens. I have had to stop doing pilates because of pain coming from irritated nerves and am unable to walk for long as my feet are numb and stiff in the joints.

I have a good physiotherapist who keeps joints relatively free and have had success with cortesone injections although I now wonder whether they are part of the problem.

I take oxy-contin slow release and short acting, and lyrica and get some relief although it is not really effective as a life situation. I also use prednisolone from time to time to have a 'normal' day but the payback is bad sleep and the desire to overeat.

In November when my last child finishes school I shall go to an ayurvedic centre in Kerala, south India to see what it can offer.

I no longer work for money having spent my working life in theatre, film and television and have a 'life project' in study Asia before the arrival of the Europeans and immediately after.

I am very unfit as exercise always aggravates the pain and am unable to sit for long and write. I am turning into a grumpy old man which is very boring for those around me. I have done quite a lot of psychological work on myself and have some understanding of how I operate.

I was pleased to come across this web page and hope I may learn from others and contribute something my self. I am married with two girls in their thirties and an 18year old son. My wife works internationally in the movie business and is quite supportive of my situation but like most people believes there must be something I 'can do to change things'."

Anna needs help

2009-09-06T06:55:00.002-06:00

Anna Wright wrote in:

"I've been battling non-stop burning, stabbing, shooting pain in my lower spine since March of 2009. I had to go in for a spinal tap on 3/21/09 because the doctors found abnormal white matter on the right side of my brain. They thought I had MS or LUPUS, which it turns out I don't have either.

Since the spinal tap I have been going through non stop intense burning, stabbing, shooting pain in my spine and it shoots down in my legs. I can't sit for a very long time, it's very tender and its worse to sit. I have seen several acupuncturists, chiropractors, neurologists. I have been doing my own research and believe I have this disease.

I would love to know what is my next step. please help me..."

Ann's email address is: foxiemiss_82@yahoo.com

Request from Paula (Maine)

2009-09-06T06:52:00.002-06:00

Paula's email address is: lumbpaula@gmail.com

Paula says:

"I was diagnosed with thoracic, idiopathic syringomyelia in 8/08, with two thoracic syrinxes (upper and a long lower one) that during the course of 8 months "grew" together. No one in Maine either knew what the diagnosis was or had so little experience of exposure to it that I had to search in Boston for a knowledgeable group of neurosurgeons...luckily finding a group and doctor at Tufts Medical Center.

Surgery occurred in 6/08 and at that time they "discovered" that I had adhesive arachnoiditis that had literally "banded" itself around the entire upper part of my syrinx. They got to the spine with a laminectomy from T2-6, lysis of adhesions, and then did a duraplasty along the entire length of T2-6 to widen the spinal cord canal, hopefully freeing up the flow (with the removal of the adhesions), and, God willing, over time the syrinx will collapse.

However, I am guardedly optimistic and hope that the adhesive arachnoiditis doesn't glob up my spine with even more scar tissue.

Is there anyone out there with similar history or experience, and can you share your story with me?"

Connie Keeler request

2009-08-31T08:28:00.003-06:00

LWA received an email from Connie Keeler this morning. Connie's email address is cmkeeler@comcast.net and she resides in Tennessee.

Connie says:

"I was diagnosed with Arachnoiditis after an MRI 5/2009. I've had back problems for over 25 years & have received multiple steroid injections, but never any back surgery. Now I'm trying to learn everything I can about Arachnoiditis so that I can deal with this new & rare diagnosis."

LWA: Please respond to Connie. Thanks.

Welcome Sandie

2009-08-30T05:44:00.002-06:00

Please welcome Sandie Buckley. Sandie lives in Massachusetts and her email address is Sandiebuck37@aol.com

LWA

Welcome Patricia Uhl

2009-08-27T08:38:00.002-06:00

Please welcome Patricia Uhl. Patricia lives in Pennsylvania and her email address is yuletide@echoes.net.

Patricia says:

"Please help me find help with this horrible disease. I live in North East, Pa. and there is really not one doctor here who understands this problem. I have other problems such as extreme scar tissue neuropathy. I need a doctor who understands and can treat this disease. I now have kidney stones and other painful issues.

Please help me make my way thru this awful situation. I have no life .....I can hardly leave my home. Thank you for any information you can provide. I have had this condition for 6 years.

Patty"

From LWA - Patty, please reach out to anyone on our members' page listing an email address.

Welcome Garry Harvey

2009-08-26T06:50:00.002-06:00

Please welcome Garry Harvey. Garry lives in North Carolina and his email address is garryharvey@triad.rr.com.

Garry says:

"What is this new IV treatment I read about on your blog? My partner was diagnosed with arachnoiditis almost 14 years ago. He has intrathecal pump but doctor is not providing dosage needed to control pain. On some days he takes as many as 18 vicodin and even this doesn't help. Thanks for any suggestions. Garry"

Welcome, Garry.

LWA

Input re newest IV therapy patient

2009-08-23T07:34:00.002-06:00

This short message was received two days after this patient's first IV therapy:

"My Mom had her first good night in a long time last night. No pain. She is hopeful, as you can well imagine. I hope that Dr. Holsworth is getting together the plan as he said he would. We are on a roll. May try to change time. I will let you know. Thanks!"

From: Denver patient's family receiving therapy in Monte Vista, Colorado.

Welcome Marc Herbener

2009-08-23T07:31:00.001-06:00

Please welcome Marc Herbener of Kentucky. Marc welcomes your email. His email address is herbener@att.net.

Marc says:

"Newly diagnosed. Would like to see more cross section mri to compare to my films. Is there a web site with such images?"

LWA

Welcome Cheryl Burnett

2009-08-21T06:15:00.001-06:00

Please welcome Cheryl Burnett, of Florida. Cheryl would love to hear from members. Her email is burnettnowak@embarqmail.com.

Welcome to our Life With Arachnoiditis group, Cheryl!

LWA

New IV Therapy Patient's Input

2009-08-20T05:42:00.002-06:00

Copying in the text from letter received today from the daughter of arachnoiditis patient (Cookie, in her 80's!) from Denver, Colorado. They flew from Denver, Colorado into Alamosa, Colorado on Tuesday for a consultation with Dr. Holsworth and this patient had her first IV therapy treatment:
----------

Karen,

Thrilled that we had the opportunity to meet and visit with you. You are so smart, a phenomenal role model and will always hold a special place in our hearts. Seeing you in your present state and knowing what you have gone through to get there, is astounding. The whole thing does seem to be miraculous....but, through you alone, Dr. Holsworth has proven to be just that; a miracle worker.

He is certainly a brilliant man and we feel so fortunate to have had the privilege of spending time in his company (and yours!) and listening to his unique and positive perspective. Up until now all we have heard is negativity; pain pills, more pain pills and incurable. The fact that Dr. Holsworth was a scientist before becoming a doctor gives him an ability that most Doctors do not possess. His knowledge and thought process far succeeds anything I have ever encountered in the medical world.

Of course, it is way too soon to tell if this protocol will be as miraculous for Mother as it has been for you. But, at least we have SOMETHING that looks promising (that is non-invasive and harmless!)....and the fact that the Doctor said, if this combination does not do the trick, there are many others to try. How amazing is that?

We will be coming next week to get Mom's second treatment and will get the necessary information from Dr. Holsworth as to who he recommends we see in Denver to carry out his plan. He appears to be very forthcoming and willing to share his ideas with other doctors closer to our home. To me that is not only a humble doctor, but a remarkably caring person.

Thank you for taking the time to tell your story online and make yourself available to those who need to hear it. And, too, thank you for the time and effort you put forth to come to the clinic, meet us and be an integral part of our experience. Most of all, thank you for giving Mother hope......if nothing more. Yesterday I saw a very happy lady, because of you. If it were not for your reaching out, we would be in the same place that we have been for a long while. Thank you just doesn't touch it....."You," as my Mother put so beautifully, "are our angel."

----------

Please direct correspondence to info@lifewitharachnoiditis.com or if you wish to write to Karen directly you may email her at kkovacik12@netzero.com

LWA is on Facebook under Life with Arachnoiditis. We invite you to become a fan. You may participate in discussion groups on that page or start a new discussion of your own.

LWA

Please welcome Vicki

2009-08-19T06:51:00.001-06:00

Please welcome our new member, Vickie C, of Nevada. Vicki would love to hear from you. her email address is macpeanut@gmail.com.

Vicki says:

"I'm using Suboxone now for pain relief until I undergo a spinal stimulator trial in September. I have really weird symptoms, like I break out into nasty ice cold sweats all over, strange sensations in my legs and buttocks, urological control issues too. I wanted to recommend Suboxone for those people wanting to get off heavy opiates and have a quality of life. I am able to drive, read, converse, be a part of my family, whereas on 180 mg oxycontin a day I was pretty much a veg. Thanks--Vickie"

LWA

Three Patients undergoing IV therapy - another soon

2009-08-18T06:26:00.004-06:00

This is a short update on IV therapy.

To date, three patients are undergoing IV therapy at one level or another. ALL have shown some level of improvement in pain level upon administration of the IV protocol. Not all have been able to obtain regular treatment within the United States and European medical system. The largest obstacle seems to be the awareness of the reasons why the protocol can help as well as lack of physician knowledge of basic chemistry and biology!!

A new patient is scheduled to begin IV therapy today in Colorado. Karen Kovacik is meeting with this patient and their family this morning. We will report back as we know how this patient reacts to IV therapy.

PLEASE, your prayers for guidance and enlightenment are needed in this quest. As you must know, this is new and we need a true break. Nothing else is working ..... anything that has a chance at improving quality of life needs exploration.

Our experimental group is soon to be N=4.

Your *positive* comments are welcomed and INVITED.

LWA

From Karen Kovacik: "Personal replies and input may be sent to Karen at kkovacik12@netzero.com - Please REMEMBER, I am an AA patient as well with the same struggles you experience. I will NOT respond to any negative email. It is a full time job to keep up with AA patients that write me personally. It is my mission to offer hope to each and everyone reaching out to me. We must find answers!"

Please welcome Connie Keeler

2009-08-17T12:49:00.002-06:00

Please welcome "Connie" Keeler of Tennessee. Connie's email address is cmkeeler@camcast.net

Connie says:

"I have just been diagnosed with arachnoiditis - felt to be caused by intrathecal steroid injections for post herpatic neuralgia. I'm having trouble finding information about treatment and prognosis. My neurologist has never seen or treated anyone with arachnoiditis; and knows of no MD that has. I'm searching for answers."

LWA

Welcome Pet Campbell

2009-08-17T12:46:00.001-06:00

Welcome our new member, Pet Campbell. Pet resides in Florida and her email address is: petcampbel@gmail.com

Pet's spouse has arachnoiditis, osteomyelitis and diskitis.

Pet would love to hear from members.

LWA

Welcome new member, Suzie

2009-08-15T04:09:00.002-06:00

Please welcome Suzie of California. Her email address is healthinfo2468@aol.com.

Welcome, Suzie.

LWA

Welcome Carl Fisher

2009-08-13T14:18:00.001-06:00

Please join us in welcoming Carl Fisher of Ohio.

Carl's email address is c1fisher@hotmail.com

LWA

Welcome Alex Parou

2009-08-13T14:12:00.002-06:00

Please welcome Alex Parou. Alex resides in Pennsylvania and his email address is parou254@comcast.net

Alex says:

"I have just been diagnosed with arachnoiditis and have had two previous back surgeries in the same area. My pain is slowly getting worse and would like to know what options for pain management are available?"

LWA

Welcome Joe White

2009-08-13T13:53:00.003-06:00

Please welcome Joe White of Pennsylvania. Joe's email address is jgtxjoe@aol.comm. Joe would like to hear from other members.

Joe says:

"I am 50 years old. I have been fighting back issues since I was 17. I was born with Spinal Stenosis. I have had 4 back surgeries last one with fusion all in the last four years. Now fighting Adhesive Arachnoiditus. Have been trying pain meds for 8 months. Up to a 75mcg Fentanyl Patch now. Also taking Percoset, Ibupropin 800mg (3/day), and Nortryptolene, for break through pain. Still spend most days lying down or in bed.

Dr has prescribed the Medtronics Mophine pump. I have heard mixed reviews. Would anyone like yo tell me their experience with them. I have had the psychological exam and all is OK. It is up to me now.

Any feedback is greatly appreciated.

God bless you all!!!!!Hope you have many good days!!!!"

LWA

Welcome Carla Rae Caswell

2009-08-13T13:47:00.001-06:00

Please welcome our new member, Carla Rae Caswell, of Wyoming.

Carla's email address is snuggles@rangeweb.net

Carla wishes to be contacted by email.

Welcome, Carla.

LWA

Welcome Dr. Grace Brame

2009-08-12T15:12:00.002-06:00

Dr. Grace Brame of Delaware has a friend with Arachnoiditis. Dr. Brame's email address is grace@gracebrame.com

Grace says:

"My friend has ARACHNOIDITIS. After 9 years following a laminectomy, my friend finally received the diagnosis of Arachnoiditis. She is in constant, terrible pain, and her doctor will give her only 1/3 of the normal prescribed amount of controlled medicine. (He says it might hurt her heart. Another knowledgeable person says he does not want to be investigated by the government.)

WHAT ARE THE BEST MEDICINES OTHER THAN NARCOTICS that will not make her sleepy?

WHERE IS THE BEST PLACE/DOCTOR TO GO TO? - I am investigating Dr. J. Antonio Aldrete in Birmingham, AL who wrote the book: ARACHNOIDITIS: THE SILENT EPIDEMIC. I am also looking at the Cleveland Clinic, Duke University Medical Research, and Washington University in St. Louis. There is also a place in Maryland which I intend to find. We live in Wilmington, Delaware.

We are looking for a doctor who will tend her case comprehensively, speaking to or reading the reports of all those who are attempting to assist her with her 8 to 9 constant pain level.

MY DEEP THANKS to anyone who really can help.

I cannot afford to just chat because I must get my work done. (I am an academician, not a medical doctor.)

Blessing, GB"

LWA