Tarlov Cysts - Would like some info, please

I am a 58 year old woman and have been having pain in my lower back, buttocks and down right leg for almost 2 years now. Finally got an appointment with a Neurosurgeon and he ordered an MRI which showed 2 cysts at the bottom of S2. One measures 20 mm and the other one is 15 mm. Report said no evidence of herniated disc or spinal stenosis, which is what the doctor thought it might be. When I asked him about the cysts, he informed me that everyone is born with them and they never cause pain. He informed me that I had arthritis of the spine and scheduled me for SJ Injections and an epidural steroid injection. My last injection was a month ago and I am still in a lot of pain. It hurts to sit for more than about 5 minutes at a time, and driving anywhere almost kills me because it hurts so bad. Now the doctor wants to me have an EMG to find out about possible nerve damage. Has anyone else had these symptons? How do I get my doctor to listen to me about the cysts maybe causing the pain? Oh, another thing, I have had big problem with bladder control and also having real severe pain in the side of my head. Are these more symptons of Tarlov Cyst Disease? Any information would be so greatly appreciated.

Sharon

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Hi BC Survivor,

Hope your cancer is in remission 4ever! I have talked with a couple people about the fibryn glue procedure and was told that it makes it more difficult to operate on the TC after that is done. They say that the glue gets in the way of cleanly removing cyst - or something like that. I'm not sure yet what I am going to do about mine, guess I'll live with the pain for awhile and see what happens. Thanks for the suggestion about the pillow. I hate having to drive, even short distances, because of the "pain in my butt"!

Take care and keep smiling,

Sharon

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I think the fibrin glue treatment is only effective in about 65% of the cases. I had is done to three cysts and the procedure immediately relieved the pain but failed within three days. Now I am not sure I like the idea of injecting stuff into my nerves. I had surgery about 4 months ago. had the three cyst drained and then wrapped and two other simply wrapped( so they will not get any bigger or will not refill). two more that were so small that he left them alone. I am about 90% or more improved, often with no pain at all, especially when standing. sitting too long and bending forward seem to cause mild symptoms. I am still not doing anything very strenuous but can function fairly normally with very little pain. I am planning a long flight this summer.....does anyone know if there is such a thing as a small gel cushion for traveling?

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My husband picked up a Tush Cush from the Better Back Store for me with a cut out for your your tailbone area. It helps alot! It was about $50 with tax.

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Help!!! Yesterday was not a very good day, but after a good night's sleep, woke up feeling better. But now, I am having horrible pain in the back of my right calf - almost like a charley horse. Is this another effect of TC's? Just what I need, more pain than I already have.

Thanks for all the encouragement everyone has been giving me.

Sharon

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Thanks Tarlovian. I was getting depressed enough with all the pain that is going on with TC's. Didn't need something else to add to it.

Sharon

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Hi Sharon

in my buttocks isI get the same pain in the back of my calf and have been told it is from my cysts and believe it is as it seems to come when other pain is also really bad, NS said it was a referred pain from S2, sometimes it is hard to walk it is so bad. I also get bad cramps in my leg sometimes, usually in the middle of the night or just as I wake up.

Have an appointment with my NS tomorrow, so will see what he has to say this time.

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Hi Maggie,

Thanks. Yes, it cramps up so bad sometimes that I can barely walk, and I kind of freeze where I am standing. Got a few funny looks when it happened at the store yesterday. Please let us all know what NS says at your appointment.

Take care and keep smiling :)

Sharon

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Hey Sharon, You have received some really great advise. I'm sure that Reta discussed the location of your cyst and what nerves your cyst could be affecting. I also have pain in the top of my calf and yes, it can be due to the cyst. If you have not checked out the diagram showing the nerves in the sacral area, check that out.
I do want to add one thing. There are a lot of good things that comes from forums especially when you are diagnosed with a rare condition. I have received some great support from Yahoo groups like straight_talk_tarlovcysts@yahoogroups.com and TarlovCystDiseaseSurvival@yahoogroups.com. HOWEVER there are people out there that have agendas and will try to influence you to beleive their opinions or propaganda. My best advise as you are seeking information is to first continue with a reliable source (the Foundation and Reta is definitely that) and to ignore those that seem to ONLY provide bad scenarios or information. There is a member of this forum that continues to provide all negative information, use scare tactics, etc! Just know that there are good things happening in the world of Tarlov cyst disease and there are those that have had very successful surgeries and are doing great!
I wish you much luck! Please consider joining a support forum like those suggested above. Those groups make every effort to block the folks that have personal agendas and try to discredit the wonderful work that is being done for those suffering with Tarlov cyst

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Hi TNACgal, Thanks so much for input. I have joined Straight Talk and have found it very helpful. I agree with you about these forums. It is just great to get input from other people who are going through the same thing I am. My family thinks I am a hypochondriac, and that everything I am going through is all in my head. They don't seem to understand that yes, I do have my good days, but when I am having a bad day, it is really, really bad. I have found out more information on Tarlov Cysts in the past two weeks than I can even absorb! Just trying to keep my spirits up.

Have a great day!!

Sharon

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Hi everyone,
I have a quick question for all you TCer's out there. Has anyone found any certain type of shoe that works better for them? Now that summer is coming, I love to wear my sandals. I do try to get good cushioned ones, but still find I have trouble walking or standing for any length of time. Know I am probably just grasping for straws here, but curious if anyone has found a super-great sandal or summer-type shoe that might help for than others.

Thanks,
Sharon

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Hi Sharon

NS can see where my nerves are being stretched and he doesn't know if this is being caused by a slight disc bulge at L3 or the cysts. But I told him I had the pain a long time before I had a problem with L3, so he has gone to discuss this with a fellow NS and work out the best course of action for me. So just hope they come up with an answer soon

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TC's are a pain in the butt (litterally) and yes I too have severe leg cramps and pain that seems to fit where I should have problems with my spine. I do have problems with my spine but not in the area that should cause my leg cramps.
Everyone is very different, but it seems pretty universal that TC's can cause leg cramps.
This is a rare disease and there are soo few doctors who have any experience with them and not all TC patients have sought their help.
When I told my NS that I was going to Mo. to seek further help with my TC, his response was " you can go to doctors who are more aggressive with TC's but the odds in you being worse as an outcome is so high that If you go, I will no longer work with you".
I began to research even deeper about fibrin glue, extracting the fluid from the TC, etc. My NS was correct that the majority of people who go for treatment of TC's end up far worse off than when they began.
I agree there were "some" success stories, but "some" is not god enough for me as my pain is unbearable now. I could not imagine it getting worse. I would like to believe 100% that I can trust the success stories, but dont stop the research on only TC surgery. You also have to evaluate back surgery in general. I feel the articles on back surgery are far more honest.
We are here for you if you have a bad day.....it is ok to merely want or need a shoulder to cry on. You do not always have to accept advise. No one on this site is a licenced TC doc.
Naomi

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What special arrangement? what does that mean? I wanted to know why he wasn't attending. thanks

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Sharon, I have similar symptoms and have had them for 11 years. Over the years I have built up a tolerance for the pain and am able to sit for about 45min before I must get up. I am pain-free when standing. I went through all the appointments, injections, etc, when I was told that Tarlov Cysts were asymptomatic. After seeing Dr. Long at Johns Hopkins in Baltimore, I was scheduled for surgery with him, but then he stopped doing the surgery. There are few doctors in the states that will tackle this problem. Hopefully, in the near future neurosurgeons will realize that we are not crazy.

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I think the EMG can show whether the cysts have actually impinged upon certain nerves to the extent of doing damage. In my case, the EMG came 1st as the docs tried to figure out what was causing the numbness etc in my feet and legs. The results of the EMG suggested the MRI, the MRI showed nothing except for the TCs which could possibly be causing these nerve issues. Ergo: TCs source of problem. It is really shocking that so many docs seem to be working with outmoded info about TCs. My neurologist was quite matter of fact about it.

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Hi MissyLou,

I decided not to have EMG basically because I am trying to pay off medical bills for the tests and epidural steroid shots my NS ordered because he wouldn't listen to me about the TC's causing my pain. Insurance only paid a portion of costs, so I am left paying the rest. I guess now I just have to wait and see what happens with my TC's and hope the pain doesn't get much worse. Sometimes it is very discouraging. That's one of the reasons why I haven't been on here in a couple months. Just trying to live day by day. I sometimes go for days on end with hardly any pain, then BANG - it hits me full force and I'm basically down and out for a time. We are in the process of getting ready to move and just trying to pack up boxes is next to impossible. Oh well, I keep smiling and hoping for the best - guess that's all I can do at this point.

Have a great day and keep smiling,
Sharon

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Well---just another example of why we need to go to a universal health care system.

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Hi Sharon,
I have heard that epidural injections do not help tarlov cyst patients, in fact they may cause more harm. I hope this helps. I'm hoping you will try Dr. F. in Kansas City for surgery.
GP

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Sharon,
I agree with GP. I had 2 epidural steroid injections that only made me worse, and most people say to avoid any needles or chemicals into the dural membranes as this puts you at higher risk for worse problems. I also had an unnecessary EMG that caused a flare, and didn't give me any information DrF didn't already know. He can usually see what's going on just from the MRI, if he needs more tests, he will tell you.
Chris

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