Perineural or Tarlov cysts

@betsy63

Welcome!! No need to feel like you're rattling on. I felt the same way as you do when I first found this site. I am sorry you've had to deal with the symptoms of the cysts for so long. I've done it for 16 years and your story sounds the same as mine. It's rare to find a doctor that will acknowledge the cysts. You just keep going from doctor to doctor until you find one or some that are willing to look into the cysts. I can tell you that you can either request that your PCP refer you to Dr. Feigenbaum or you can just go yourself. They prefer a referral though. You have the right to be referred anywhere you want. I went to see him and am now fighting with my insurance. They don't want to cover it. If your doctor doesn't want to have the MRI done then when you touch base with Dr. Feigenbaum's office and let them know that. They may be able to order it themselves or pull some strings.

I know what you mean about being treated like a drug seeking patient and how family members look at you sideways. I was in the same boat for a long time. There are family members that don't think there is anything wrong with me and think I'm just lazy. It makes dealing with the cysts so much worse.

Please keep us updated about your MRI. In the meantime, take care!

Terri

@betsy63 I also have a Tarlov cyst which was acknowledged on my last MRI in July 2019. I have back pain for years and recently diagnosed with peripheral neuropathy. I do not have diabetes so they call it idiopathic. Idiopathic is a word used to describe "No known cause" No known cause means the doctors can't associate it with typical cause such as diabetes or auto immune and just would rather treat the symptoms. I have had prior MRI's and a Tarlov cyst did not or was not acknowledged on the MRI. I am thinking it may have been there on prior MRI's , but not reported. I asked my doctor about this "New" finding and was completely brushed off with "Many people have them" with it is not a problem. I had not heard the word Tarlov cyst until then and now I am reading that there are others on this site experiencing pain in their back and other similar issues that I have and have been diagnosed with Tarlov cysts. I thank you for sharing this and giving me a push to learn more about Tarlov cysts and also talk more to my doctor about this.

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.

I agree. That site has been the most instructive and helpful to me. Sadly, even though I have printed their information and taken it to physicians with my symptoms highlighted in yellow, my concerns have been dismissed as unrelated to the diagnosed cyst (but no one can provide an alternate diagnosis or pain relief). My greatest battle is finding a sympathetic ear among providers, not in finding information about the disorder. I have applied to join a Facebook group which discusses this problem and possible solutions. I don't know why the established medical community seems resistant to addressing this condition.

@wandah My last MRI of my back found a Tarlov cyst. I knew nothing about a Tarlov cyst, but have extreme back issues with alot of pain. I too asked the doctor about them and he dismissed me with "Nothing to worry about" I do not believe that. I have peripheral neuropathy in both legs and feet. I wonder if this could have an origin of Tarlov cyst. They refer to my neuropathy and lymphedema as idiopathic. I hear that word much too often. We cannot address a problem if we do not identify the cause. I wonder how many people have seen a Tarlov cyst pop up on a scan and been told "Nothing to worry about"

@wandah
I'm sorry to hear about everyone's suffering. It's been a while since I've been back here. You may have seen my previous posts about Tarlov cysts. It took me 17 years to find doctors that would listen to me and recognize what the cysts are doing to my health. I have learned the hard way that when your doctor starts treating you like you are a drug seeker and/or your doctor refuses to acknowledge the cysts then that is a red flag and your queue to go to move on. If they are not providing any benefit to you then there is no reason for you to continue wracking bills up to see them. I got more and more impatient as my pain got worse. When I saw a new doctor I just explained that I was sick of jumping from Dr to Dr. I told them that I was not looking for more medications, I was looking for help. I also asked them if they were willing to consider that the cysts are causing my issues and if so, are they willing to learn about them and support my mission to have them taken care of. Surprisingly I started to get some positive results. I now have 5 doctors that all took the time to learn about the cysts and have written letters to submit to insurance supporting the surgery with Dr. Feigenbaum. One of my doctors also had a Tarlov cyst and went to Dr. Feigenbaum for the surgery! I couldn't believe it all fell in line just this last year. Why did it have to take 17 years to find these doctors?

I did go down to see Dr. Feigenbaum and am currently going through the appeals process. My insurance is denying the surgery saying it's experimental and there's not enough medical evidence.

Best of luck to everyone!

Wow. I am so glad I found this. I, too, have been having lower spine issues that suddenly blossomed to sciatic pain down both legs. Since this was new -- I've been having problems due to exaggerated lordosis for decades, and worse pain for the last three or more years -- I saw my doctor and he ordered a lumbar MRI. The report said that at T11-T12, "There is right intraforaminal perineural cyst likely of no clinical significance." I asked my doctor if that could explain anything and he said no. He said there wasn't anything he could do for my pain, but if it got worse we could try epidural injection. I am in chronic pain, have trouble sleeping, and any movement (walking, stretching, bending) causes pain, especially down one leg, but sometimes both.

I haven't seen a neurologist for any of this, but I have been considering it.

Check out “curablehealth.com”

@mar2a An MRI 6 months ago showed a Tarlov cyst. I have had back issues for years with several diagnosis. I also have peripheral neuropathy. Doctors have been treating my pain with pain pills, Gabapentin, etc. I asked about the Tarlov cyst causing these problems and was told no. I do not believe that. I am all ears.

@arlenejc I'll keep that in mind for the future, but this is a cyst that could be pressing against a nerve and causing damage. I want to know if that's the case. @summertime4 Yes! And since my doctor said I might eventually need epidural injections, and since neurologists apparently do those, I'm really considering going to one for at least a consult.

I did some more research and apparently these cysts are asymptomatic, but occasionally can be symptomatic and cause exactly the pain I'm having. I'd hate to just ignore this and find out a few years from now that I have permanent nerve damage. I can ignore pain, to some degree, but I'm not going to be able to ignore loss of function.