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Perineural or Tarlov cysts

Spine Health | Last Active: Apr 18 5:37am | Replies (96)

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@betsy63

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.

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Replies to "Oh My Goodness!!!! I have been on so many sites and have never seen anyone sharing..."

@betsy63

Welcome!! No need to feel like you're rattling on. I felt the same way as you do when I first found this site. I am sorry you've had to deal with the symptoms of the cysts for so long. I've done it for 16 years and your story sounds the same as mine. It's rare to find a doctor that will acknowledge the cysts. You just keep going from doctor to doctor until you find one or some that are willing to look into the cysts. I can tell you that you can either request that your PCP refer you to Dr. Feigenbaum or you can just go yourself. They prefer a referral though. You have the right to be referred anywhere you want. I went to see him and am now fighting with my insurance. They don't want to cover it. If your doctor doesn't want to have the MRI done then when you touch base with Dr. Feigenbaum's office and let them know that. They may be able to order it themselves or pull some strings.

I know what you mean about being treated like a drug seeking patient and how family members look at you sideways. I was in the same boat for a long time. There are family members that don't think there is anything wrong with me and think I'm just lazy. It makes dealing with the cysts so much worse.

Please keep us updated about your MRI. In the meantime, take care!

Terri