Welcome to the new forum! (arachnoiditis)
 

This thread was originally in a separate forum for arachnoiditis patients. That community settled somewhere else and the ispine arach forum never took off. 9/15/2013 I've closed the arach forum and moved the few threads to main iSpine forum.
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I'm in Dresden, Germany with two clients who are seeking treatment for their Arachnoiditis and neuroforaminal cysts. Sadly, one's debilitating arachnoiditis was caused by an excessive and seemingly unnecessary spine surgery. The other has been dealing with unrelenting pain for over a decade, while specialist after specialist has either performed unsuccessful procedures, or have given her little or no hope. Neither of them will have a procedure performed on this trip; it is simply a fact-finding mission. If you’ve been at iSpine for a while, you’ve seen me writing about Prof. Dr. Jan-Peter Warnke at the Paracelcus-Kliniken in Zwickau, Germany. More about him later. He’s a wonderful man and an incredible doctor!

When another client introduced me to the world of Tarlov Cysts about 18 months ago, it became clear that finding accurate information is very difficult or impossible. This population is very, very underserved in the internet patient community. I hope that here at iSpine, we can improve the situation and provide a haven for the arachnoiditis and neuroforaminal cyst community where they can easily find the information and support that is needed.

Moderation of this forum will be performed by a very well informed arachnoiditis patient, Claudine Weber. She has been suffering with arachnoiditis for over two decades. For the first decade, her problem went undiagnosed. For the last decade, her end-stage arach and tarlov cysts have been severely disabling with horrible neuropathic pain 24/7. I’ll leave it to Claudine to introduce herself and to tell her story. I look forward to seeing how this community grows and to learning more about these horrible problems that take such an unbelievable toll on those afflicted with them. Hopefully, someone will find information here that will help them to find the treatment they need or keep them from making a poor choice of treatments.

Note that we will endeavor to keep the posts in this new forum in support of the patients in the Arachnoiditis/Cyst community and providing information about these problems. Find another place for discussions about religion and politics. Jokes, recipes, discussions about movies you’ve seen, etc… are welcome, but only on the Community support - NSR. (NSR = not spine related)

Welcome!

Mark

my story
 

Hello to all...

My story is similar to many stories. I have been healthy and active (Working for French National Health System, Juridical team, walking a lot, swimming a lot, ..)

In 1992, I had an epidural anesthesiology for a very minor surgery, not back related. As soon as the effects of the anesthesy stopped, I was overwhelmed with such a horrible burning pain, despite the fact that I am very hard to pain. I had never experienced such a pain, even when giving birth ( no anesthesia) to my 2 sons...I was told that it was nothing. I began to feel always tired, had severe cramps in the abdomen, lost sleep quite completely, frequent lumbagos, terrible headaches, and told by all doctors to be a hysterical woman in premenopause period. t lasted till a fall end of November 2001. I came off paralysed and horrible pain. On my MRI were seen:
- Arachnoiditis calcified from L2 to L5
- Tarlovcysts, bilateral at S1 S2 S3 and one at S4.

I searched for information and found only a few about Tarlovcysts telling of surgery to treat them.
I had surgery on August 8th, 2002 and came off worse.

In 2003, I sent my files to 4 different specialists, without any other comment than the description of my pain and symptoms and medical history. The 4 reports came with similar conclusions: Calcified Arachnoiditis that could only be due to epidural anesthesia, scar tissue where Tcs surgery plus severe spine instability as main ligaments had been cut, there remains only a 3rd of the sacrum bone as they had to force to take off its roof and a large piece of it is now encysted in the middle of a mix of muscle and nerve scar tissue.Of course, there is also now scar tissue at each level of the sacral vertebraes.

I am in severe pain mostly since this last surgery and lost my work for disability to this work, could never find another one and most of all, I have a real allergy to all medications morphine or opiod base...I have close to no pain management, except some technique for deep relaxation as to lack of sleep, but I can't make it when the pain level is at 10.

I began to share my story and to make websites for Europe about those pathologies, so that people could find reliable information. I went back to my studies of anatomy, physiology, neurology with the help of some doctors and specialists. I needed to understand to face the ruin of my life. I am sharing with friends and colleagues from all over the world, with specialists to provide information..

I sincerely want to give my pain some sense, and give others a hand, as I know, as to my own experience, that it can make a real difference...
Sincerely
Claudine

Welcome Claudine,
I am so sorry to hear of all your suffering . But i do want to welcome you to the forum. I wish there was a way to ease your suffering. I am here for support and maybe i will whine less thinking of you and others in your situation
judy

hello
 

Hi Claudine,
After my 2nd spine surgery in '92 (percutaneous discectomy) I had the most horrific burning pain from my waist thru buttocks, thru thighs, thru calves and down my legs 24/7 for nearly 5 years. It was thought I had Arachnoiditis. I was put on Elavil 50mg/day and some other drug I couldn't take for long and the edge was taken off the burning but it was still pretty horrific and I finally had to retire (RN/NP) in 2000.

The pain I had suffered though seemed to mute a bit in '97 and I stopped the Elavil tho started Neurontin in '98 at 1800mg/day which I took for 12 years.

It seemed to greatly help the burning pain which along with Epidural ESIs and low dose opioid therapy seemed to be alleviated in around 2001. Between 2003-2006 I was considering a 3rd spine surgery either 2 level ADR or ADR at L4 and fusion at L5S1 but I just was far too afraid to plunge myself back into the spinal hell I had been in so long with the horrendous burning pain.

This type of pain is so insufferable ~ it's horrendous... anyway I still have some back probs tho not nearly to the degree in decades before. I don't know how long this reprieve is for however I do hope it continues.

I also hope that you and anyone else with this kind of pain will somehow be relieved of it. Whatever the direct cause of this awful horrible pain I do hope there will be some way to eradicate it or prevent it.

thanks for posting your story. I too am sorry to hear that anybody suffers with it tho I know I really felt very alone back in those days (didn't even have a computer back then)!

Thank you Judy and Maria
 

for your concerns and caring thought....

Much love is sent to you over the rainbow...
sincerely
Claudine