Perineural or Tarlov cysts

Hi all of you. I see that these posts are all from 2017 to 2018, but I wondered how all of you are doing, and if you've been able to get any help. I'm sort of new to the world of Tarlov Cysts, although I've had symptoms for many years, but my doctors kept telling me the TC's all along my spine on my MRI's were nothing to be concerned about. So, now that I have trouble walking and standing (in addition to the back pain, migraines, eye and ear problems, etc.) I'm out there on my own struggling to get help. I wonder how you all are doing, and if you have found anything that helps. Best to everyone; appreciate any reply.

Hi Barb,

Unfortunately, it's very rare to find a doctor that is willing to acknowledge that these cysts DO cause issues. They say Tarlov cysts are rare but I think there are lots of chronic pain patients out there who's issues are caused from them. I took a bad fall way back in 2003 and have never been able to stand up straight since. I've also had severe muscle spasms and sciatic pain. In June 2018 all of a sudden a slew of new symptoms popped up and have just snowballed! Just when I thought my condition couldn't get worse it got a whole lot worse! While reading one of my MRI reports I noticed that it said "Multiple Tarlov cysts found incidentally". I started asking all the doctors about them and there was only 1 that would admit that they cause issues and that is because she also had one and needed surgery. If it weren't for her I would still be a chronic pain patient. My PCP has sent me for so many tests trying to prove that it's not the cysts it's ridiculous! These things have wasted 15 years of my family's lives.

Funny you should mention issues with migraines, eyes, ears, walking and standing. I have all the same issues and they are all caused by these cysts. The migraines, eyes, and ears may be from a low pressure headache. My doctors are sending me to be tested for it now. I'm having a very hard time standing and walking because of the back/muscle spasms and the nerve pain going down my legs & into my feet. My legs are going numb from time to time too. I have a hard time even bending or putting pressure on my right leg and can't even sit on my right butt cheek because of the pain. Is this what you're going through too?

I was told that there are only 3 neurosurgeons in the U.S. that are known for treating these cysts. I just saw the one in Dallas,TX in January 2019 and am currently waiting for a surgery date. He is normally booked out for about 1 to 2 months for a consul and 3 to 4 months for surgery. I'm really afraid about the surgery but at the same time I can't imagine just continuing to get worse. I guess those are the choices.

There are 2 websites that have been most helpful and contain the most info. about Tarlov cysts but we are not allowed to put that info. on this site. I'm not able to give you my direct contact info. either. I don't get a whole lot of time on my laptop because of my pain but I'll try to check back here when I can. Hope I helped you a little. Take care!

Sorry for the extra reply but...

Do you also have issues with your bladder or bowels? I have had issues with my bladder since 2003 and lost control of my bowels in June of last year. These are both symptoms of cauda equina syndrome. It's normally an emergency for other people but if it's because of Tarlov cysts it won't be unless the doctor you have will admit that the cysts cause issues. It's really a terrible shame because there can be some serious nerve damaged caused by waiting.

I also forgot to mention that my cysts have shown up on my MRI & CT scans all the way back to 2003. Nothing was ever mentioned to me about them until last year! Also, there were only 3 cysts noted in my report but the neurosurgeon found 5 or 6 (he won't know how many for sure until he's in there) and a fatty filium. The fatty filium is also called a tethered cord which normally happens at birth but can also happen with an injury. Mine happened with the injury. Interesting thing is that he said when he releases the tethered cord it may or may not release the pain in my back. The tethered cord has never been mentioned before either so I was surprised by that one. Must be another "incidental finding". I'm finding that there are lots of those.

I think the best site for Tarlov cysts, also known as perineural cysts is The Tarlov Cyst Foundation (not to be confused with the association mentioned in another post)

Hi, I'm new to the group. I don't know how to start my own thread so I apologize. I have also been dx with a Tarlov cyst. I have been treated for SI joint dysfunction for over 2 years with no relief. I had an MRI two years ago that stated perineural cyst, incidental. I have seen two pain management doctors, and neither mentioned the cyst. I recently went to see a Physical therapist who saw it on an MRI. He feels this could be my problem and that I should see a neurosurgeon to monitor it. The physical therapist got a new MRI approved. I just need to make an appt with the neuro. At least I feel like I have a direction to go now.

@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.

@cookiegirl
Forgot to give you the link to Dr. Feigenbaum... https://www.frankfeigenbaum.com/

@jenapower

I have also been diagnosed with Tarlov cysts. I have 5 or 6 of them that cover my whole tailbone/sacral area. The doctor you are speaking of is Dr. Frank Feigenbaum https://www.frankfeigenbaum.com/ . I made the trip to see him and it was so worth it. Just the validation that I'm not some kind of hypochondriac or crazy person made me have a meltodwn. I'm sure probably have meltdowns too caused by trying to endure the symptoms. Currently my insurance is denying my surgery and I'm in the grievance process.

If you don't get the surgery then the symptoms just continue to get worse. I have nerve pain from my lower back all the way down to my toes and have developed peripheral neuropathy on my right side. I have lost control of my bowels at this point and am having issues with my bladder. I'm with you on the headaches cuz I have the sames ones!! I am basically bedridden because of all this. The headache is always there but the intensity just goes up &n down. As soon as I sit up all the pain and pressure woosh up from where the head meets the spine and is mostly across the whole back of my head. I get blurry vision, pressure & shooting pain in my right ear, and extreme nausea. It makes it really hard to evto res. I can't concentrate on anything (makes trying to watch a TV show impossible), have a hard time finishing a sentence because I can't think of simple words, keep asking the same questions over & over, and can't remember anything.

The best website to refer to is https://www.tarlovcystfoundation.org/ . Go into the Survey/Research and fill out the survey. Also go into the Library. There is so much information there that will explain so much more for you than just reading the home page.

Best of luck to you and know that you're not alone. I am willing to try answering any questions you may have. If I take a while to respond it's because I can't keep my head up long enough and not because I'm ignoring you. Take care!

Hi, I read your post and feel such kinship with you. I, too, have had symptomatic Tarlov cysts for 17 years. My bowels still work, barely, and that has escalated in the last year. My bladder is the same. I'm bedridden or a wheelchair now. The pain is excruciating and the migraines severe. I know about Dr. Fiegenbaum and Dr. Schrot. I've sent my paperwork to Dallas waiting for a phone consult with Dr. Fiegenbaum.
Hearing your story made me feel a couple of ways; 1. I wish I could snap my fingers and restore your and my health.
2. You have a friend

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.