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← Return to Perineural or Tarlov cysts
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@cookiegirl
I have been fighting these symptoms for 15 years and it wasn't until June 2018 when something triggered the cysts to compress nerves and kick into high gear. I researched for the best neurosurgeon that specializes in Tarlov cysts and went to see him. Looking back he could see that the cysts appeared on the very first MRI after my accident. They were ignored all these years because they are an "incidental finding". After having to learn about the healthcare system the hard way over the years I have a few pointers for you. I hope that you don't have to go through what I've been through!
Make sure you tell the radiology tech more about the cysts and what kind of symptoms you are experiencing. Tell them that you want ALL findings, including the incidental ones documented on the report. It's a crap shoot as to whether they decide to note the cysts. Some do & some don't. Giving them all the info. you can will definitely help in the outcome of most testing. This goes for all tests you are sent for.
You are your own best advocate. Don't settle for unanswered or ignored questions, concerns, symptoms, etc. Don't settle for doctors that refuse to acknowledge the cysts (most of them won't). I've read that Tarlov cysts are merely just mentioned in medical school and skipped over so most doctors don't know anything about them. They figure if the cysts could cause issues they would have learned about them. Don't just see doctors, also see physical therapists, and integrative/holistic providers as well. Explore all your options.
The most helpful website is https://www.tarlovcystfoundation.org/. The best neurosurgeon that specializes in Tarlov cysts is Dr. Frank Feigenbaum in Dallas,TX. It's worth the trip, trust me! I wish you the best of luck and if have any questions I'll answer to the best of my ability.
Replies to "@cookiegirl I have been fighting these symptoms for 15 years and it wasn't until June 2018..."
Did you have surgery for your TCs? I have them, and was going to get a consult with Dr. F before the COVID shutdown, but have delayed starting with him due to pandemic.
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Oh My Goodness!!!! I have been on so many sites and have never seen anyone sharing about Tarlov Cysts in the present time. I usually see things from earlier years. Sorry, I am just very happy, grateful to find this site. I had an x-ray for low back pain done in 1999 which showed a tarlov cyst. Pretty good size. The technician reported it in his findings. Well, since that x-ray in "99", I have been treated by six (6) different pain clinic doctors, seen by four (4) neurologists and been on so many types of medication for the pain. I have not been able to function without something for pain to the point of being branded as just someone addicted. I have had to get steroid injections, no matter how hard I tried to explain (TEACH) that steroid injections into the spine only add to pain and pressure on tarlov cysts.
I could, and really want to, go on but it is getting late and I'm supposed to see my Grandchildren tomorrow.
Yesterday I gave up asking the pain Dr. for an MRI (last MRI is from 2012, I'm on disability, government funded health insurance etc-have been denied an MRI since 2013 on, I explained that I needed an up to date one for Dr. Feigenbaum in Texas-was told not to believe what I read on the internet), and asked if he would do the two needle injection with lidocaine-NOT a steroid. I explained that if there is any benefit from the injection then I will know that the pain I have had for more than 20 years is from the tarlov cyst.
Yes, I've had trauma & broken bones. I also fought with Drs for over 15 years about a parathyroid tumor. Found a Doctor ON THE INTERNET from Florida, went to him and I no longer have that tumor. It is so true how we have to be our own advocate!!!!!
Ooops! I am trying not to rattle on but really am thrilled that I'm typing to friends who understand the pain and frustration of having tarlov cyst(s) disease. Well, my pain Doctor agreed to do the procedure yesterday and I got a call today that I can go in January 2nd of 2020. If this really happens, this will be the best year of my life. That is all I will say for now. The thought of knowing what this cyst is really doing and that it IS the cyst really doing it is too much for me to comprehend in one sitting.
Thank you for letting me register and share. Please, if there is anything I can say to help,or listen to efforts, experience, frustration or if I can answer any questions, I will do whatever I can. I'll even just shut up!!! This is my first time on a site. My friends and family shrug me off.....that's a whole other book not even worth opening.
Ok. Thank you again and good night. I will read more on this and other sites tomorrow night, if I'm able. Thank you for being here. Not that you want to. I know. Thank you.