Saturday, June 19, 2010

Welcome Diana Couch

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

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 or contact Karen at

Welcome Kathryn Fisher

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

Welcome Peter Rutkin

Please welcome Peter Rutkin of Queensland, Australia. Peter has Arachnoiditis. He welcomes your email to him at

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

Please welcome Raymond Frizzell of Florida. Raymond has Adhesive Arachnoiditis. He welcomes your email at

Welcome Linda Gall

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

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."

Sunday, May 30, 2010

Welcome Richard Doyle

Please welcome Richard J. Doyle of California. He has Arachnoiditis. His email is

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

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

Welcome Nancy Holladay

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. "

Tuesday, May 18, 2010

Welcome Al Knox

Please welcome Al Knox of Illinois. Al has Arachnoiditis. He welcomes your email at

Requesting input/assistance

Grace Brame, Ph.D.
Email address -

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

Monday, May 17, 2010

Welcome Cindi Soutter

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

Friday, May 14, 2010

Welcome Debbie Morgan

Please welcome Debbie Morgan of Tennessee. Debbie has Arachnoiditis. She welcomes your email at

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."

Thursday, May 13, 2010

Welcome Louise Semadeni

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

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."

Wednesday, May 12, 2010

Welcome Valerie Quick

Please welcome Valerie Quick of North Carolina. Valerie's email address is 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"

Welcome Cheryl Johnson

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

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

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

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

Please welcome Laurie Grimm of Indiana. Laurie has Adhesive Arachnoiditis. She welcomes your email to

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!"

Saturday, May 8, 2010

Welcome to Andee Younkin

Please welcome Andee Younkin of Nevada. Andee welcomes your email. Her email address is 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

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."

Thursday, May 6, 2010

Please welcome Keeliey O'Hara

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

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

Sunday, May 2, 2010

Welcome Stephen Becker

Please welcome Stephen Becker of New Mexico. Steve would like to hear from you and welcomes email to him at

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

Please welcome Tom Miller of Colorado. Tom's email address is 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."

Saturday, May 1, 2010

Welcome Dennis Haney

Please welcome Dennis Haney of Alabama. His email address is

Dennis says:

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

Friday, April 30, 2010

Modifying Tom Mostello's email address

Please welcome Tom Mostello of Indiana. Tom welcomes your email and his email address is

Tom was diagnosed with arachnoiditis/lower back April 2010.

The prior post has the wrong email address for Tom.


Wednesday, April 28, 2010

Please welcome Cara Crump of Missouri

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

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 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
cara crump"

Saturday, April 24, 2010

Please welcome Maria "Lu" Figueiredo

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

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

Please welcome Tom Mostello of Indiana. Tom welcomes your email and his email address is

Tom was diagnosed with arachnoiditis/lower back April 2010.

Welome Barbara Provis

Please welcome Barbara Provis of the UK. Her email address is 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.
Please welcome Mark McLaughlin of Pennsylvania. Mark's email address is 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

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

Welome Victoria Johnson

Please welome Victoria Johnson of California. Victoria's email address is 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

Please welcome Mike Perry of California. You may email him at

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

Please welcome Desiree of New York. She welcomes your email. Her email address is

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."

Thursday, March 25, 2010

Welcome Lori Verton

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

Welcome Sharon of Ireland

Please welcome Sharon of Dublin, Ireland. Sharon welcomes your email at

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

Please welcome Courtnea W. Smith Stark of New York. Courtnea welcomes your emails at

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

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

Regina says:

"I added you on Facebook. Thanks"

Friday, March 19, 2010

Welcome Lisa Brouwer

Please welcome Lisa Brouwer. Lisa's email address is 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

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

Louis says:

"Just a 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

Please welcome Jackie Scott of Oregon. Jackie's email address is 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

Please welcome Peter Groves of Queensland, Australia. Peter welcomes your email. His email address is

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 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

Sunday, February 7, 2010

Please welcome Jen

Please welcome Jennifer Singleton of Canada. Jennifer's email address is 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) forward to 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 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 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"

Friday, February 5, 2010

Joan of California

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

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

Please welcome Kay of the UK. Her email address is 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

Please Michael Nees of Minnesota. Michael welcomes your email to

Michael has Failed Back Surgery Syndrome and possible Arachnoiditis.

Welcome Tokunbo

Please wecome Tokunbo Adeniji of Maryland. Tokunbo's email address is and your email is welcome.

Wecome Donald Heaney

Please wecome Donald Heaney of Ireland. Donald's email address is 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.

Monday, February 1, 2010

Please email Paula of California

Please welcome Paula Ptacek of California. Paula's email address is 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!

Please welcome Donna Cole of Missouri. Donna has Adhesive Arachnoiditis and would welcome your email at

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

Please welcome Leah Wright. Leah's email address is She welcomes your email.

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

Friday, January 29, 2010

Welcome Bobbi Jo

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

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"
Please welcome Bill Wallace of California. Bill has Arachnoiditis due to trauma. He welcomes your emails at

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

Please welcome Ali Nair of Kentucky. Ali has Arachnoiditis. Ali welcomes your email at

Welcome Mary Ann of Washington

Please welcome Mary Ann Levine of Washington. Mary Ann welcomes your email. You may email her at

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

Daniel from New York

Please welcome Daniel Cocca from New York. Daniel has a diagnosis of Arachnoiditis. He welcomes your email to

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."

Sunday, January 24, 2010

We are running behind

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

Please welcome Carrie Trompeter of Kansas. Her email address is 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

Claudia in Florida sent in notes for readers. You can email Claudia at

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."