Have been reading about these in several posts on this forum. Sorry I seem to be late to the party!
Recently had an MRI at a Spire hospital in NW after crippling 10/10 pain in S1 and S2 for about three years and loss of bladder function since March this year. “Small” Tarlov seen on this MRI (with contrast) and radiologist recommended to neurologist (Professor Chhetri) that I see a neuro surgeon at Preston Hospital.
Prof Chettri wants me to have nerve conduction studies at Preston before committing to an opinion about whether this is causing the appalling pain. I’m confident that it is. I’ve read the information on Tarlov Cyst Foundation site and my pain meets all criteria. This pain has been variously diagnosed as Piriformis, Sacrolitis and Sciatica. Medial Nerve block recently done but no improvement - pain is worse if anything.
Would welcome any views, comments, experience etc. I don’t know how much longer I can bear this. 😪
Hello Rainbow! I've just seen your enquiry about Tarlov cysts and will share my own experience. I have 4 i the coccyx, also found at a Spire clinic and again, was told they were inconsequential! This is sheer rubbish. I managed to contact DR Frank Feigenbaum, the expert in Texas, who visits the American Hospital in Cyprus four times a year. I sent him my MRI and he agreed I was in massive pain and needed an operation. He offers a package of operation and a week in a top Cyprus hospital but That cost £46, 000 without flights and that was eight years ago! I thought about it seriously but then wondered what I would do if something went wrong, as you only see him the once, at the operation. Then I heard that Dr Adrian Casey, at the London Neurological Hospital does a similar operation but he wasn't very helpful afterwards. I'm now 84, fit in every way except for the awful pain I've now lived with for over 15 years. Sitting down is like sitting on barbed wire and my feet have gone stiff , making walking any distance really hard. I don't have bowel problems. My own GP and others at the practice don't understand , even when I tell them I find it very hard to sleep and can't get comfortable no matter what kind of mattress. I know I@m not going to get any help so Pregabalin numbs the pain but also takes me off my feet when I'm not careful. I wish I could be more helpful but I don't know what to do myself. Please feel free to contact me in any way. I think my contact name might have just been changed from Wirral47 to Barbara but I'm not sure. I did have pain injections at Wythenshawe Hospital Pain Clinic but I think tey just made things worse. Regards, B
You could contact Dr Feigenbaum’s office (Feigenbaum Neurosurgery in Texas) and ask for a free review. You don’t need to plan on seeing him but just for an opinion. If he thinks you need surgery you can tell him you’ll think about it.
I have a small Tarlov Cyst. Since no other diagnosis helped relieve my pain I looked into it. To review your case they will require both a pelvic and lumbar MRI. It took about 2 months to get to speak with him. He was honest and said he did not think my small TC is the cause of my pain.
I don’t know whether nerve conduction studies can confirm that a TC is causing pain. Just my opinion but with a small TC I’d want more proof or a second opinion about surgery. I also did a free consult with Dr Schrott in California and he agreed I did not need surgery. It took about three months to get to speak with him. If he thought I needed surgery I probably would have gotten a third opinion.
Thanks for your response Sally and for recounting your experience. I certainly don’t want unnecessary surgery / just relief from the pain. I guess I’m also desperate for answers about why I’ve lost bladder function and bowel is now affected.
Have you thought about a diagnostic nerve root block which is an excellent procedure to confirm diagnosis. I spoke with Adrian Casey in 2020 and he mentioned this. S1-5 nerves control bladder and bowel function, so it’s not uncommon for many to have bladder symptoms. I have two bilateral TCs on S2, fortunately I don’t have bladder symptoms. I’m managing my TCs conservatively and certainly wouldn’t consider surgery unless I was bed bound and doubly incontinent.
I'm sorry. I've got the barbed wire thing going as mentioned by Wirral47. It's horrible. I have all the pudendal neuralgia symptoms but have not improved with multiple meds, pelvic PTs, specialists, a miriad of injections that I have no response to. I'm seriously considering a spinal cord stimulator. But that just deals with pain, if successful. You need to know why your bladder is affected. I'm six years with this nightmare. I can sit with minimal pain for about a half hour and after that I stand. By evening I'm lying on the sofa with an ice block. By bed time I take a Xanax to calm down my system from pain to fall asleep. I wake up with no pain. If I never had to sit and my back could withstand standing all the time I'd be in great shape.
I’ve several too and had surgery in London, dr. Adrian Casey. I developed new pain from scar tissue after the surgery, but he managed to fix all my bladder issues. Be careful not to have surgery on cysts that are not symptomatic. Feigenbaum has a tendency to tackle all cysts. Also be aware, that surgical outcomes, who ever performed the surgery, is highly unsure with Tarlov cysts.
I’m so grateful for your comments Anna - as I’ve spent another painful night considering all my options.
At least I have an excellent neuro who is making a referral for a neuro surgeon’s opinion as to next steps (Royal Preston Hospital). If advice is not to take a surgical option at this stage, they will do surveillance MRIs 6 monthly to monitor.
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