I only have one TC & it is located on my tailbone. I've been to the neurosurgeon. Had lower & upper MRI's done. I had some mild bulging disk in lower back area plus the tarlov cyst. He's adament that the burning pain is not coming from my cyst. He ran bloodwork for autoimmune disorders & inflammatory disorders. They came back negative. Basically, he's done with me. He said for me to go back to the neurologist for more testing. I told him that I have been reading info. on the internet about the cysts and I have a lot of the symptoms. He said not to believe everything you read. Maybe he just doesn't know much about them. All he told me was that if you start messing with it (surgery/aspirate it) you could do more harm than good. I'm on a nerve medicine for the burning. It is not touching it. I'm discouraged.

Annette,

You are getting the same response most, if not all, people with Tarlov Cysts, have received. Do not be discouraged and do not give up looking for those who will, at least acknowledge that the TC’s do cause pain and provide you with pain meds.

Have you checked out the Tarlov Cyst Disease Foundation site yet? It is an amazing site and will give you information and comfort in your battle to find help.


Also, so that you do not think you are alone in your struggle with this, there are two talk forums where people who have TC’s share their experiences, their frustrations and the help they have or have not received. I believe you would benefit from looking at what others have to say, who are in the same situation as you.




The hardest part of this journey, for me, has been that I have had to do all the research on my own and have learned, I must be my own, strong advocate. I always thought it was the doctor’s role to figure out what was wrong and do the research and be an advocate for finding a solution to the problem his/her patient was experiencing. That is how it works on TV anyway! Ha! That is how it use to work in the medical world but times have changed and there must still be some doctor’s who think like we would like them to, but they are few and far between, when it comes to a rare disease such as TC’s. I could tell you my horror stories about my visits to an NS and a neurologist but when you check out the talk forums, you will find so many similar stories as yours (and mine) that, you will at least find, how you were treated is not the exception to the “rule”, it seems to be the standard treatment.

I do hope you can get to see even a family doctor who can give you the needed medications to get your pain under control. It will not get better and the constant pain will wear you down physically and emotionally. Perhaps you could be referred to a pain management doctor to help you while you search for the right way to treat these nasty things. My family doctor has been kind and has willing supplied me with the needed pain meds, so you might just start there.

Please feel free to reply if you wish but I am still in the learning curve myself and those at the Foundation and the talk sites are far more knowledgeable than I, or have, at least been dealing with it longer than I. You will find those who have had surgery and aspirations and other types of treatments and what they have to say about all things TC. There are those who strongly believe in only one type of treatment and others who are disciples of only certain doctors. You must read and filter it all, based on your own research until you find what sounds right for you because what works for some, doesn’t work for others.

barb-California

Barb,

Can you at least tell me:

1) Do you have more then one cyst?
2) Where is it/are they located?
3) What kind of symptoms are you battling? Mine is constant burning from bottom through legs & feet. I can sometimes feel burning/tingling in hands & arms.
4) You said you are on pain meds. Can you share the type that you are on?

I feel better when I'm constantly moving/walking. I have an office job, so sitting all day can be very difficult. However, I don't want to give my job up. I'm too young for this. Laying down relieves the burning most nights.

Thanks for getting back to me. I do appreciate your feedback. It has been very helpful.


Annette - Illinois