1. < Spine Health

Perineural or Tarlov cysts

Posted by jenapower @jenapower, May 23, 2017

Hi, my name is Jennifer. I have commented on here before but I've never started a post. I have been told that I have fibromyalgia for a long time, I also have had a number of accidents with many broken bones and surgeries to put things back together. All of this has resulted in chronic pain, most of it is down my head/back/pelvis/spine and legs. In an effort to try to see more my doctor did a lumbar and pelvic MRI last week. Turns out I have a cyst on my spine called a perineural or Tarlov cyst. It's basically assistant starts at the nerve root and herniates out filling with spinal fluid. I guess there's like a leak from your spine to this cyst but the system itself is made up of nerves. It's the best of my understanding at this point. Mine is at the S2 location, and can cause pain from your back down your bottom and down your legs and includes some pretty severe headaches because it's upsetting the pressure of the spinal fluid around the brain. Again this is the best of my understanding of what I've been told. It certainly explains a lot of my symptoms that have been contributed to fibromyalgia and broken bones. Again they're not really sure what causes them but they think trauma in that area could be a contributor. I just wondered if anyone else had heard of this or experienced it. It is considered rare, i've come to find out there are only two doctors in the United States to do surgery on it. One of them that's all he does and he actually goes to other countries to help people that don't have access to a doctor that is experienced in this surgery. It's a long recovery and pretty scary surgery because they're messing with your new or nerve root I don't want to think about what the bad consequences could be although I know I have to. I think I've gotten to a point where I'm pretty much flat on my back every day and it's no life, so I'm actually happy to have an answer. If anybody else knows anything about this I would love to hear it or has any experience with the surgery.
Thank you, Jennifer

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jsc | @jsc | Sep 6, 2023

I was recently diagnosed with an “incidental” tarlov cyst at S2. Referred to a neurosurgeon who reviewed my MRI and confirmed it is a “normal tarlov cyst” and referred me back to my PCP for pain management. All of this was done without an evaluation/discussion with me directly. I quickly deducted this particular neurosurgeon simply has the belief of treating tarlov cyst's with only pain management courses. I am awaiting follow up with my PCP. I have combed through the Tarkovsky Cyst Foundation resources and am in progress of seeking a phone consultation with Dr. F. in Dallas, TX.

Has anyone ide tidied an active/current neurosurgeon with Mayo Clinic who treats tarlov cysts?

Pain management drugs is not an option for my use case as those options in my opinion are detrimental to the gut microbiome. I am an avid athlete and desire to remain active for years to come.

Seeking any assistance possible.

REPLY
1 reply
kgrainger | @kgrainger | Sep 8, 2023
In reply to @qball2019 "Hi Barb, Unfortunately, it's very rare to find a doctor that is willing to acknowledge that..." + (show)
@qball2019

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!

Jump to this post

What were your eye symptoms?

REPLY
jolum | @jolum | Jan 3, 2024

Yes, I have 9 large Tarlov cysts all located on sacral nerve roots. They are located on both sides of my spine starting at S1, and then on down to S2, S3, S4. They were all filled with CSF. They cannot be removed because Tarlov cysts actually grow into and became part of the nerve root itself. Yes, chronic pain, neurogenic bowel and bladder, numb feet, perineum, legs, bum, etc. The pain is focused in my anus. If I have any stool in me the pressure and pain is excruciating.
I had a massive high fall from the bow hatch of out boat down into the head . I landed with one leg topside, the other in the head with my spine split on the stainless steel hatch. This was 30 years ago. I had surgery by Frank Feigenbaum neurosurgery in Dallas Texas 3 years ago..It's taken that long to get help. The progression of the disease has stopped since surgery, but the existing damage could not be repaired.
Sorry, you're suffering so much. Perhaps either Dr. Schrot in California, or Dr Feigenbaum in Dallas can help.

REPLY
lvulcano | @lvulcano | Jan 22, 2024
In reply to @ftrice "Hello everyone. I know some of these posts are a year or more old. But I..." + (show)
@ftrice

Hello everyone. I know some of these posts are a year or more old. But I thought I would post with some resources that I've found helpful over the last 6 weeks since my teenage daughter's MRI showed a Tarlov cyst at her S2, which seems to be causing nagging pain only at this point. Please ask to join a private Facebook group called the Tarlov Cyst Society of America. There are others, but this one in my humble opinion, is the most helpful. Don't delay. Join and start reading. The moderators are active in updating their files. There are articles. But most importantly, there are people who are living with this condition who have tried many things, some successfully and some not. I hope you find it as helpful as I do. You will find a list of physicians by state on this site as well.

Jump to this post

Did your daughter have surgery? My daughter has a large one that encompasses the S1 and S2. Just looking for help.

REPLY
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Jan 22, 2024
In reply to @jsc "I was recently diagnosed with an “incidental” tarlov cyst at S2. Referred to a neurosurgeon who..." + (show)
@jsc

I was recently diagnosed with an “incidental” tarlov cyst at S2. Referred to a neurosurgeon who reviewed my MRI and confirmed it is a “normal tarlov cyst” and referred me back to my PCP for pain management. All of this was done without an evaluation/discussion with me directly. I quickly deducted this particular neurosurgeon simply has the belief of treating tarlov cyst's with only pain management courses. I am awaiting follow up with my PCP. I have combed through the Tarkovsky Cyst Foundation resources and am in progress of seeking a phone consultation with Dr. F. in Dallas, TX.

Has anyone ide tidied an active/current neurosurgeon with Mayo Clinic who treats tarlov cysts?

Pain management drugs is not an option for my use case as those options in my opinion are detrimental to the gut microbiome. I am an avid athlete and desire to remain active for years to come.

Seeking any assistance possible.

Jump to this post

@jsc I happened to see your post. I don't know if you are still looking for a physician for Tarlov cysts, but my spine neurosurgeon at Mayo Rochester, Jeremy Fogelson, has co-authored a paper about a surgical clinical case with them.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
In looking at the similar literature credits, I see another Mayo physician name at the Jacksonville campus who also works with Tarlov Cysts. His profile is
https://www.mayo.edu/research/faculty/quinones-hinojosa-alfredo-m-d/bio-20247553
This is the paper I found on a case with Tarlov Cysts from my Mayo surgeon.
https://pubmed.ncbi.nlm.nih.gov/28521343/
Jennifer

REPLY
cmy1970 | @cmy1970 | Apr 18, 2024
In reply to @qball2019 "Hi Barb, Unfortunately, it's very rare to find a doctor that is willing to acknowledge that..." + (show)
@qball2019

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!

Jump to this post

Hi Barb!

Just checking to see if you had the surgery and, if so, what were your results?

REPLY
dominoboost | @dominoboost | May 14 5:10pm
In reply to @qball2019 "My insurance co. finally approved my surgery thanks to Reta Honey Heiers from the Tarlov Cyst..." + (show)
@qball2019

My insurance co. finally approved my surgery thanks to Reta Honey Heiers from the Tarlov Cyst Disease Foundation http://www.tarlovcystfoundation.org She requested that a code specifically for Tarlov Cysts be added and has been fighting for it since 2016. On Oct. 1, 2020 it went into effect and that is the only reason my insurance co. approved my surgery. I had to call her directly and thank her for all her hard work. If anyone else is successful in getting their surgery approved due to the new ICD code please thank Reta at http://www.tarlovcystfoundation.org

I had the surgery on Dec. 8. 2020 by Dr. Frank Feigenbaum from Feigenbaum Neurosurgery - Tarlov Cyst Center in Dallas, TX. Dr. Feigenbaum is the leading expert in Tarlov Cysts/perineural cysts having done many more surgeries than anyone else. Anyone interested in this surgery must understand that the recovery period can be 2 years or more because nerves take a very long time to regenerate. Dr. Feigenbaum said it best in one of his videos I found on Youtube: He can treat the cysts but he cannot treat the nerves. You have to understand that recovery is different for all of us because we are all "wired" differently. If the cysts have been compressing your nerves for a long time like mine have you will need to accept that you may very well have permanent nerve damage to some extent. All I was able to do prior to surgery is lay on my couch 95% of every day because I was in so much pain.

Now, I have to admit that I'm still in a lot of pain and will have to take more pain medication for quite a while but knowing that the sacral nerves are no longer compressed making my symptoms worse gives me piece of mind. I had 5 cysts. They showed me on a model where each cysts was. There are 5 sacral nerves (10 bilaterally) and all of them either had a cyst or was being compressed by a cyst from the nerve next to it. I had no idea it was that bad! They told me that I am on the extreme end of the spectrum due to the extent of the nerve compression, the length of time I've had symptoms, and the toll they have already taken on my health. They also found a tethered cord (fatty filium) and release that. Although rare, they normally find this at birth but in my case I acquired it when I fell in 2003. All these years it has been pulling on my spinal cord causing severe pain.

This may be too much info. for some but others will want to know these details because they are having similar issues. I'll just mention the main ones. So far my vaginal and rectal areas are totally numb, which makes wiping very interesting, but when I do wipe I get some pretty bad nerve pain. They said this is normal right after surgery but should get better over time. The bladder issues are a bit worse right now because sometimes I can tell I have to go and then other times I have no idea and it just happens. Same with the bowel issues. The tailbone area has a deep, nagging pain and then it spreads down my butt cheeks and down both legs. I can say that my hip pain and lower back pain has already improved about 65% though. I'm only 11 days out of surgery so I will have to wait and see what the symptoms are like as time goes on.

If anyone has any questions please PM me. I am not on here all the time but will check in here and there. Please give me time to respond to you.

Jump to this post

A menu/cat scan thingy accidentally found my tarlov cyst. I can't even believe what a LITERAL pain in the ass this thing is!!!! And it just gets worse. and filled brain fluid ! Geeesh, could it get any more ridiculous??? Hurts to lay down, sit down , stand up, walk, God forbid I have to poop! The pressure of the poop in my lower intestines due to the cyst and all the other messed up disks is unreal! Like, I suddenly can not walk w my right ght leg . It goes numb and I cant move it. Then all better after I poop. If the cyst pops, that brain fluid gets in the blood stream and that can't be good!!! I would never have known about it if I wasn't getting the scans for a lawsuit when I was hit by a car. I would think that I was having a stroke this whole time if it wasn't for those X-rays. I bet a lot more people have this!!! Crazy how it's just blown off as no big deal. Should be automatic acceptance for disability.

REPLY
dbamos1945 | @dbamos1945 | May 14 7:59pm

Reply regarding Tarlov Cyst: my Tarlov cyst was found on Xray looking for lumbar stress fracture due to excruciating lumbar & leg pain. My outcome from rest, ice/heating pad, pain meds, elevating leg and 90% bed rest came after about 6 weeks of tearing my hair out with same symptoms you described.
Numbness, pain slowly resolved & within 5 days - one morning I could stand up, walk and wanted to dance! You can look at the surgical fix, but it seemed like a crap shoot with big chance of worse pain & outcome to me. Research &decide what is best for your future. Best…

REPLY
meadows | @meadows | May 29 6:02am
In reply to @qball2019 "Hi Barb, Unfortunately, it's very rare to find a doctor that is willing to acknowledge that..." + (show)
@qball2019

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!

Jump to this post

I have several Tarlov cysts and I know what you mean about many doctors not taking them seriously. I hope someday research is done to show these cysts can cause problems! Thanks for sharing.

REPLY
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