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.

Hello, and my sympathies re: your pain. I too am struggling; have been for 7 years. My docs don't seem to recognize Tarlov cysts as a real "thing" and I can't even get a credible diagnosis. For me, getting restful sleep has been one of my biggest issues because of the severe pain involved in lying down in any position and, especially, in turning over at night. I find that OTC lidocaine patches on the skin over the painful areas of my back help me get to sleep and at least get adequate rest. I don't use them during the day because I don't want their effectiveness to dwindle. I understand that there are stronger Rx versions as well. Also, I have just requested to join the Tarlov Cyst Society of America group on Facebook as suggested by another contributor. I'm hoping for additional suggestions from patients and maybe even the name of a sympathetic doctor here in my city. Good luck, and please let us know how you are doing.