TARLOV CYST

Posted by vadaanglin @vadaanglin, Thu, Jan 31 1:50pm

I have a large tarlov cyst 2.5cm and 3.5cm on the spine in the lumbar region. Some what rare and doctors seem to know little about and say they are nonproblematic. I'm having chronic pain. Any advise will be appreciated.

Hi Just read your post about having tarlov cyst. I do not know what they are, but will look it up. If they are giving you pain I would think the doctors would take a closer look. That is not good especially if they are on the spine. Please check into it further and find where the pain is stemming from.

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Hello @vadaanglin, welcome to Connect. I would like to invite @lindamarie4life, @ftrice, and @michael1978 to this conversation as they also posted about being diagnosed with a tarlov cyst. You may want to check out the brief discussion where they posted about this issue as well, you can find that discussion here, https://connect.mayoclinic.org/discussion/perineural-or-tarlov-cysts/.

@vadaanglin, did your providers say that they did not think the cyst was related to your chronic pain? Is your chronic pain in the area where they found the cyst (spine)?

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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.

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I have seen several people say they have Tarlov cysts. I had not heard of them before so I of course looked them up. I am very frustrated and I must say angry at doctors who are brushing you off. Tarlov cysts can and will cause severe pain, headaches and difficulty with movement as some members have described. What do they mean when they say they don't know much about them. If they don't they need to get together and find out about them. As I can see there are many people suffering from and told their pain is not caused by them. I just finished reading that pain can be very severe and other problems can occur. I also read, to my disappointment that little research has been done. It was noted that there are several treatments that may help. Have any one had their doctor explain what treatment options are available. Too often doctors brush us off with it's part of getting old, do not know much about it or that is common. Sorry, if we have pain and difficulty waling, standing, being active, there is something wrong. It frustrates me. I was told that we were not meant to be in chronic pain without even a suggestion of what the problem is. Please, for all those suffering from Tarlov's cysts get with your health provider. It seems to me that further investigation needs to be done on this rather than saying they do not have much information about this.

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I ended up with multiple Tarlov cysts in my sacral area after a slip and fall 15 years ago. The cysts were never mentioned to me until 2018 even though they were there the whole time. Doctors generally tell you they don't cause any issues and refuse to discuss it any further. I had to go through numerous doctors to find just one that would consider that, if they weren't able to figure out what was causing my pain, that these cysts might be the issue. Ridiculous to have to go through all of that but that's what happened to me. The pain and symptoms robbed me of a decent life with my husband, kids, and other family. I currently also have a very hard time standing, sitting, walking, bending, etc.and that is just the tip of the ice burg. I can't even sit on my right butt cheek because of all the nerve pain. The symptoms have just snowballed and my health has just plummeted over the last 6 months.

You need to push the doctors and keep going until you find one that will acknowledge these things. They may make you out to be crazy but you're not and there is help out there. They DO cause issues and you are entitled to have them treated. I don't want to read about other people who have had to live with the pain and symptoms as long as I have. I want people to get the help the need before getting to the point that I am at. I was told that there are only 3 doctors in the U.S. that specialize in treating these things. Dr. Feigenbaum at Pine Creek Medical Center in Dallas, TX has the most experience and positive outcomes. I'm currently waiting for a surgery date. The surgery is a big deal and can take 2+ years to recover because nerves grow slowly. Mos. t people report relief of symptoms soon after surgery.

Hope this helps you a little bit. If you would like any other info. look up The Tarlov Cyst Foundation. If there is anything else I may be able to help you with please feel free to ask. Good luck to you and take care!!

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@bogobarb

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.

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Two doctors in United States are specialists in the area of Tarlov Cyst Disease. Dr. Frank Fiegenbaum, Dallas Texas. And another in Sacramento, California. Sorry, I don't have his name right this minute. Google, 'The Tarlov Cyst foundation.' Plenty of info on Google. I have had symptomatic Tarlov cysts for 17 years. I'm currently working on getting a telephone consult with Dr. Fiegenbaum. Hope this is helpful. I'd like to talk more.

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@joken

Two doctors in United States are specialists in the area of Tarlov Cyst Disease. Dr. Frank Fiegenbaum, Dallas Texas. And another in Sacramento, California. Sorry, I don't have his name right this minute. Google, 'The Tarlov Cyst foundation.' Plenty of info on Google. I have had symptomatic Tarlov cysts for 17 years. I'm currently working on getting a telephone consult with Dr. Fiegenbaum. Hope this is helpful. I'd like to talk more.

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Rudolph J. Schrot, MD Sacramento, California

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@joken This is the 1st time I have seen Tarlov Cysts brought up. Wow. I was going to ask if there were any information or if anyone else had a Tarlov cyst or cysts. I have back pain and back issues for years and was also diagnosed with peripheral neuropathy this year with no known reasons
. I am not diabetic. Three months ago I ha another MRI of my back and sine done. Well, there in the written report was Tarlov cyst. This ha not shown up on prior MRI's. When I asked my doctor about it he just said, well actually h didn't say anything and I did not pursue an answer at that time because thee were so many thins going on. Now I hear it talked about on Connect and others have also found they have Tarlov cysts. I did read up on them and it sad they don't USUALLY cause problems, but they can. I couldn't help but wonder if my severe back pain and maybe even neuropathy could be triggered by that cyst and for some reason just now showed up on the MRI. I will be asking more questions when I see the doctor. If something is on or near your spine that should not be would think it could cause problems. I hope more information will be brought up from others here.

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@joken
I have multiple Tarlov cysts as stated a few posts ago, and because they were ignored by doctors for so many years I have a multitude of other symptoms. I have bladder issues, bowel issues, peripheral neuropathy, low pressure headache, currently being tested for arachnoiditis, legs going numb, , nerve pain spreading, etc. I have finally found a team of doctors that support me. One of them believes that the nerve damage that is being caused in the lower region is starting to effect the rest of my nervous system and/or that it's overloaded causing issues in other areas. I now have nerve pain, tingling, cold feeling, burning hot patches, going down my arms too. My right arm is ending up with what looks like scratches or even stretch marks that last between 1 week and a couple months before going away. 2 of my doctors looked at it and agree that it's petechiae and they found other tiny spots all over my arm. They are in the process of running a bunch of blood work. I'm just listing all this stuff because I would like to stress to anyone that has Tarlov cysts to push your doctors and continue to pursue one that is willing to learn about them and get you to the right doctor to treat them. If your doctor is not responding to your questions or ignoring the cysts, that means it's time for you to move on. I was shrugged off and called a chronic pain patient for many years and at times looked at like I was just looking for the opioids. It's a shame that they treat people that actually need the pain relief but it's more common than you think. I learned how the medical world works the hard way and now have a bunch of permanent nerve damage on top of what seems like a million other new symptoms. I am currently waiting decision on my second appeal with insurance. They are denying my surgery saying that it's exploratory and that there is not enough medical evidence. Actually, the surgery is not exploratory and there IS a LOT of medical evidence available. I made the trip to Dallas, TX to see Dr. Feigenbaum. I was in tears to just have them validate all of the symptoms I've been experiencing. Remember that YOU are your own best advocate. Don't take no for an answer and be involved in every aspect of your healthcare even if it has nothing to do with the cysts. Reach out to various individuals and organizations until you find help. Ask all the questions you want and demand an answers. Research the crap out of Tarlov cysts and the symptoms it causes. The more knowledgeable you are the better. It's a long hard road but you will find the help you need. Most importantly, don't give up. I wish you and anyone else with this condition the best!

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@summertime4

@joken This is the 1st time I have seen Tarlov Cysts brought up. Wow. I was going to ask if there were any information or if anyone else had a Tarlov cyst or cysts. I have back pain and back issues for years and was also diagnosed with peripheral neuropathy this year with no known reasons
. I am not diabetic. Three months ago I ha another MRI of my back and sine done. Well, there in the written report was Tarlov cyst. This ha not shown up on prior MRI's. When I asked my doctor about it he just said, well actually h didn't say anything and I did not pursue an answer at that time because thee were so many thins going on. Now I hear it talked about on Connect and others have also found they have Tarlov cysts. I did read up on them and it sad they don't USUALLY cause problems, but they can. I couldn't help but wonder if my severe back pain and maybe even neuropathy could be triggered by that cyst and for some reason just now showed up on the MRI. I will be asking more questions when I see the doctor. If something is on or near your spine that should not be would think it could cause problems. I hope more information will be brought up from others here.

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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.

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