Tarlov Cyst on the spine: Any advice?

Hello! I realize this is an older post. Did you ever have surgery for you Tarlov Cyst. I have them at S2 and S3. It is affecting my quality of life. I am Awaiting calls from Dr F in Dallas as well as Dr Schrot in Sacremento.

@babykrueger123 I think you are in luck. I did a search and I came up with an abstract to literature about a surgical case for Tarlov Cysts at Mayo Clinic in Rochester. Then I recognized the names of 2 of the authors. One is Dr. Jeremy Fogelson who did my cervical spine surgery and the other is Dr. Ross Puffer who at that time was in the neurosurgery program at Mayo when I had my surgery and he was involved in my care.

Dr. Fogelson was the reason I came to Mayo for spine surgery and he was wonderful and I recovered well from my surgery. He teaches at Mayo. I highly recommend him and he is kind.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Here is the literature that he co-authored on Tarlov cysts, also known as perineural cysts.
https://mayoclinic.pure.elsevier.com/en/publications/tarlov-cyst-causing-sacral-insufficiency-fracture
There is also a surgeon at Mayo Jacksonville with this literature about Tarlov Cysts
https://mayoclinic.pure.elsevier.com/en/publications/diagnosis-and-management-of-sacral-tarlov-cysts-case-report-and-r
Alfredo Quinones-Hinojosa
https://www.mayoclinic.org/biographies/quinones-hinojosa-alfredo-m-d/bio-20238939
If you wanted to seek treatment at any of the Mayo campuses, this link will get you started.
http://mayocl.in/1mtmR63
I'm glad you reached out here. I did search on the Mayo website and didn't find information about Tarlov Cysts. It was in searching for literature from Mayo that I found the information. Thank you for that, and I will let our moderator know that this information should be added to the site.

May I answer any questions for you about my care at Mayo Clinic?

The big problem with the medical community and Tarlov cysts is that close to 80% of folks have them, and they are asymptomatic for them. The few percent of us whose Tarlov cysts are symptomatic are disregarded because very few neuroradiologists have the skill set and expertise to notate on your MRI report the number of cysts, dimensions of each cyst, fluid volume of each cyst, as well as the exact location of each cyst. I just had my pain specialist order a MRI requesting all of that information. I paid $550.00 for it. The report came back with not one of those requests notated. The neuroradiologist argued that the cysts are benign, incidental findings and it was ludicrous to ask in the first place. My doctor called the radiologist and found out he just didn't know how. I was refunded all my money. Now, I'm looking for a neuroradiologist closer to Florida to send the MRI disc to. Perhaps John Hopkins in Jacksonville. I have done hours of research, purchased medical journal articles, etc. in order to become more educated to advocate for myself. Please do not give up. If you do, you've lost. Keep hope alive!
I'll be happy to share what I've learned. Just feel free to ask.

@joken did you find anyone in Florida to help you with the tavlov cyst? Did they recommend a procedure to aspirate and fill with fibrin? I have a cyst as well and trying to find out if anyone has had this procedure done and whether it was successful.

I have. 3.1x2.3x1.1 tarlov cyst at the s3 level ...where the sciatic nerve is. I'm a veteran and I have no other ins. I had a pain management doctor tell me it was very large and pinching on my nerves. He referred me to a neurosurgeon. The VA denied the referral. Also my neurologist referred me thinking it could be the cause of all my headaches, again the referral was denied. My PCP at the VA referred me 3 times and if course all 3 were denied. Recently I had a small fall against my car door bug I hurt pretty bad and 3 days later slipped in my garage having a halfway split on a wet floor. The next day I started having really bad pain even worse than before and the next day was even worse. I we t to the ER almost a week ago. He gave me torradol and pain meds. I've also had 3 back surgeries , two about 5 yrs ago a month apart. I went to the vet yesterday to take my dogs urine sample and then stopped while I was out to o get my allergy shot, I was gone around an hour. When I got home I was weak and dizzy. Last night or 4am I woke up crying with sharp rectal pains and spasms, they lasted for 30 min. I'm beside myself. I have an appeal in with the VA but that could take years. In the meantime I'm concerned the cyst will do permanent nerve damage or erode the bone in my sacrum. The ER did regular X-rays and said I have arthritis in my sacrum. I even sent a message to the Presidents office yesterday, bug the govt is shutdown right now. I have a message in with sn attorneys office to find out if I can get free representation for this matter. Anyway I'm going back to my PCP to get follow up tomorrow morning. I'm showing her the MRI on my pelvis that showed the cyst to be larger than on the MRI of my spine. I feel for you. I've been dealing with this pain for a few years and I'm 69 yrs old. It's so hard on me

Hi there, I too have Tarlov Cysts. Mine are along my entire spine, but are currently worst in the lumbar/sacral region, which is apparently common. Perineural cysts were identified on my MRI's for years, but none of my doctors were familiar with this disorder and ignored my questions . Now, in addition to chronic migraines, etc., I'm having difficulty walking or standing for more than a few minutes. I am still trying to find help for this, and am also trying to get genetic testing. Many people with TCs also have Ehlers-Danlos Disease, and since I meet many of the criteria, I am hoping that having a diagnosis might help me to get help.
I am in Orange County, CA and am desperate for any leads. Thank you for including me in this group and conversation.

@bogobarb
Tarlov cyst's. I was first diagnosed in 2001. Tarlov cysts are similar to fibromyalgia in that doctors are told in medical school they don't cause problems and it's slow and coming that they recognize them. There is a great site. Tarlov cyst foundation that has a lot of great information. Including I think it's four doctors across the country that can actually treat them. Yes they cause problems. Yes they cause pain

@becky55f sorry my point about them being like fibromyalgia is it took several years for doctors to recognize fibro. Now they're pretty well diagnosed and treated and fibromyalgia will be at some point too. It's just that only 1% get it. Get the cyst so there's no money in treating them as far as medication etc

I sadly am in your same boat. I have several large sacral Tarlov cysts with the largest one at 3 cm and more up my spine which are not symptomatic yet. The cysts are eroding my tailbone and caused a lot of low back pain. The ones in my sacrum are symptomatic and caused me much pain in my lower back and affect every thing below the waist. I have to meet her out how much I sit stand or walk and I have to have several lay downs during the day. doctors are ignorant on the subject and do not understand Tarlov cyst at all. I was actually diagnosed by my chiropractor who very kindly called me on the weekend and told me it was going to be life-changing. That was six years ago and I am so much worse. I found out I have ehlers-danlos syndrome also. I have talked with Doctor F. in Dallas Texas, the only one who I would trust to operate on these. Do not get the fibrin glue it does not last more than a few months and can make surgery down the road more difficult. I am not a good candidate for surgery so I will live with these the rest of my life probably in misery. Aleve is the only over-the-counter medicine that helps and I have taken it every single day for 6 years. I take Flexeril when I am in a bad flare-up. Ice, heat, Epsom salt baths, Tens, salonpas, biofreeze, are some things that help. Exercise makes mine totally worse and sends me into a flare up. Swimming pool is great therapy but don't overdo it. on Facebook there is a Tarlov cyst support group I would recommend joining that and you can search at the top for any types of medications that people are using. I just keep praying that someday in the future they will have a way to operate better on these things! Wish I had better news for you!