Tarlov Cysts in thoracic Region

I know that symptomatic Tarlov cysts are not exactly common, but in most of the research and reading I've done most people that have them seem to have them in the sacral or lumbar region. After suffering for about two an a half years with horrible pain that I describe as not just "back pain", but pain "on the inside of my back", just to the right of my spine, if that makes any sense to anyone. This pain is in the middle part of my back and goes up into my right shoulder blade. Then it "skips" a small part and begins again going into the top of my back and into the area between my neck and shoulder. There were other issues...I had surgery a year ago for celiac artery compression. It took nine months to diagnose what was going on there and I thought when that was corrected this pain would go away but it didn't. (The pain all began at the same time) After the surgery it took eleven months to get my insurance company to approve an MRI. That was only after my PCP found a neurosurgeon who was willing to see me without an MRI, and he was able to get one approved for me. After looking at the MRI, his diagnosis is Tarlov cysts, but nothing he can do for me. He referred me to a pain doctor who has so far done two median branch nerve blocks. The first one seemed to help the area that was injected. (T 6-10 right side) The second one (left side) didn't really do much at all. In fact, it made the whole area hurt worse than before for a few days and the procedure itself was even so much more painful the second time. Which I guess is really not important though since our main goal is longer term relief. I can't even remember now how many cysts there are..9,10,11, somewhere in that area! seriously! The neurosurgeon just told me to do some research on Tarlov cysts, that's what all of these are!! So that's what I did. I really went into a pit for a little while after reading about other people's horror stories with these things. This pain consumes your life. My MRI only covered the thoacic region because that's the main area that my pain comes from. So if I have them in the sacral or lumbar I don't know, nor do I hope I ever find out! I have to say that in the research I've done, it's made me count my blessings. If God chose to allow me to have these things, I'm glad they are where they are because I can walk with no problem, and I don't have bladder issues, nor do I have pain shooting down my hips or legs. In fact I wake up most mornings, and for about an hour and a half I am absolutely fine. By the time I'm done showering and drying my hair I'm feeling this pain coming on in the middle part of my back. ( I take Topamax 50mg. AM and 100mg. PM - I cut the pill in half for the morning because I hate the brain fog, although at 100mg I do get much better pain releif from the burning sensation, it's just a trade off and you have to do what you can live with so it's my own choice) By around noon I take Nucynta 75mg and when my husband comes home from work, (sometime between 12-2pm) he puts 2 Lidoderm patches on my back. If I just stand, especially in one place, this pain makes me feel like I will literally explode. The upper part of my back hurts when I sit. If I get in a reclined position so I can lay back it's not as bad. I just can't sit straight up. But it doesn't hurt my bottom, just the upper end of my back and going into the top of my shoulder. At my appt last week the doctor suggested I have him do Radiofrequency Ablation. The problem I have with this doctor doing something like this is mainly that he really doesn't seem to listen to me when I try to talk to him. When I asked him how he would know which nerves to burn, ( I asked this because I know he is not treating me based on what he saw on the MRI. I think he's just treating the general area of pain.) I guess I've said all of that to get to this - Since these cysts are actually inflamations of the nerve roots no matter how big, and if you're going to treat the source of the pain by deadening a nerve (or temporarily numbing it whatever procedure it is) Souldn't the doctor look at the MRI and figure out the exact location of the cysts that are in that area of pain that could be the symptomatic culprits, and inject the (?) into that particular level? It's all done under XRay so I'm assuming they know what level they're working on. The doctor said I would tell him which nerve to do by him pushing on my back and I tell him if that's where it hurts. The problem I have with that is that after lying on my stomach for a little while the pain eases off some and I don't know that I could tell him the exact nerve to do like that. I'm afraid of him hitting a nerve that is ok right now and creating new problems. Has anyone else had this done? And is there anyone else with thoracic TCs? If so, what are your symptoms and what kinds of treatments/meds have you tried and found to be helpful?

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I would never allow a doctor to burn my nerves. No Way. Woudn't that be permanent damage?

If you are interested in someone who knows about tarlov cysts, send your MRI disk and report to Dr. Long for information for a quicker reply and/or Dr. Feigenbaum in Kansas City (will take 2-3 months to hear from him) as he is the Dr. with the most experience in surgery with the cysts and does work on cysts in your area. Numerous people have had surgery with him including me and he has given our lives back.

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Hi travismommy, I have TC's @ T10 through L2,then again @ L4 L5 S1 S2. I had an ESI that did nothing,so I'm waiting on the medial nerve branch block. They want to try that to see if an ablation would help. I like ice,or Boifreeze. I also take 1/4 ml Klonopin morning and night. 21/2 ml Flexerrel if needed mid day. My neck is a mess,but not painful too often,thankfully!
I know heat feels good,but the ice really stops the pain for little bits of time.

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My cysts are in the thoracic area as well. I can tell you that surgery in the thoracic area of the spine is very complex and comes with a whole other set of risks. The ribs attach to the vertebra in that area which limits access to the nerves, spinal canal and vertebra.

I can't remember if we can post URL's here that would show you what nerves exit the spine and where they go to so I won't but if you do a search, you'll find this information. It helped me to understand how my pain traveled and where it may be coming from.

I always tell folks, surgery on the spine is the last resort. The risks and complications are not rare and can cause disability and worse pain.

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Thank you all so much for your advise and information. I am so glad I asked. And Rosetazoriginal, I never even thought about the ribs being attached to the vertebra in this area being an even more complicating issue...But surgery would be an absolute last resort for me. I just hate the day to day meds that you can't live without. I'm not talking about addiction, I'm referring to dealing with an agonizing pain that won't turn loose of your body and life. I've tried going without them, because even with them I'm still not pain free. I thought since I still hurt, I might as well just tough it out and not have the side effects. But it's so much worse without the meds. So of course I go back on. This is the first doctor that has done treatments instead of just drugs, but I just really don't feel like we're "on the same page" as far as where he needs to be injecting this stuff. But then I'm not the doctor and I've only had a name for this monster since April. So I just wanted the input of others. I've never heard of Klonopin, and I'm not sure what Flexerrel is either. I'll have to do some research. My doctor has suggested I start on a pain patch. You wear it for 7 days then remove it and put on a new one. The only thing I'm positive about is that it starts with a "B". Butram, butam,?? Something like that. Anyone heard of it or tried that? He said it would probably make me nauseaus and a little loopy to start with but I would adjust. I'm not sure if this would be any better than the nucytas or not. I do like that the Nucytas don't give you the high kind of feeling like the Percocets did at one time. I had just built up tolerence to the Percocets and they were no longer effective at all for me. The only thing to do with them would be a higher strength and I didn't want to do that. Nucytas work on different receptors so they do help in combination with the other meds.

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