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?"