Arachnoiditis / Tarlov Cyst
 

Hello there.

I am new to this site - though sadly not new to pain. I am 38 and was 34 when a sudden and relentless, constant 24/7 crippling attack of pain struck one morning - in my groin and back, with increased urinary frequency. I won't go into the long history of the almost 20 surgical interventions I've had - all of them making the pain worse, some possibly causing further symptoms and diseases.. namely arachnoiditis ! I am not yet diagnosed, though EVERYTHING points to that (particularly the findings in my post op reports).. Anyway. My main question is... is surgery an option? If so, are the results safe? Permanent? And if so, who specialises in this field? I live in Spain but am from England. I have travelled to Istanbul (to have Pudendal Nerve Decompression surgery) and more recently Cyprus (to have a Tarlov Cyst removed) and so am willing to travel - though am now very disabled and bordering on broke..! Though if the right GENUINE Dr could be found, I'd raise the money and crawl there! I would really welcome any replies as I feel SO terrified, guilty (on the impact this is having on my Mother), incredibly depressed, shocked, and WORN OUT with the relentless nightmare of constant, off the wall, 10/10 PAIN... :( Thank you in advance of any replies - Fiona

welcome
 

I'm so sorry to read that you are having this kind of pain. I was diagnosed with Arachnoiditis back in '92 after my 2nd spine surgery failed but there were no conclusive films that showed I actually had it just the symptoms I had post failed (2nd spine surgery). It was really of epic and nightmarish proportions back then.. burning from around my low back area down both legs and into my feet 24/7 that was gnawing and deep and so debilitating. I could hardly stand to be on my feet much less function.

My MRIs in years post my 2nd surgery never showed evidence of arachnoiditis however a PM I was seeing back around 2000 said that I could have it and if I had more surgery I could exacerbate what I had endured for a number of years post surgery .. some of those symptoms started to ease off around 2001 and by 2006 so much so that I stopped taking Gabapentin which I had been on for 12 years for the burning pain and before that Elavil for 5 years. This is not to say I am free of low back pain as that in and of itself is a different pain than what I had that just was so terribly chronic and horrifically debilitating (as horrible pain is). I still have spasms, and back pain and limitations though have long been on low level opioid medication daily and haven't worked since 2000. I was considered a candidate for more surgery such as 3 level global fusion, then 2 level ADR, then hybrid ADR and fusion but I was always far too scared to have anymore surgery done and have that type of pain recur or take so terribly long to get over increased pain. I may have blew some chances there but I went with "better the devil I know than I the devil I don't" ( meaning I was far worse off after my 2nd spine surgery than before it). Anyway again I think there has to be marked improvements in spinal surgery developments even since I was a candidate for ADR.

I really am not current on what the literature or surgeons are saying now with regard to Arachnoiditis however I would hope there has been marked improvement in treatment in the last 20 years.

I can well imagine the impact your symptoms are having on yourself and your family and I can only say that I do hope someone here will have some answers for you.

Meanwhile welcome to the forum though sorry to read that you are going thru what you are (and have no doubt).

Maria

Have you heard of the butrans patch? I had been using the narcotic pain killers over the past several years and then I tried the butrans patch and it has knocked out 99% of my pain. Butrans works way better than the pain killers ever did and it's been a miracle drug for myself and others. In addition , people do not build a tolerance with butrans such that it won't take higher and higher doses to have the same effectiveness like what happens with the typical narcotic pain killers. Also, it doesn't have the side effects either (no tiredness or mental fog etc). I think until they find a cure (if ever), the only thing you can do is find the right combination of pain killers. Butrans has been a miracle for me. A lot of reviews are online and most are having huge success with it.

Steve, I'm so glad to hear that the Butrans is still working for you. Having someone post early success while they are still in a honeymoon period with a new medication is great, but it's sooooo much better to discover that it's still working months later!

Take care my friend,

Mark