Tarlov Cyst on the spine: Any advice?

Posted by vadaanglin @vadaanglin, Jan 31, 2019

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.

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@sarsarson

Here is one. I’m going to grab a few others for you in a bit

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@sarsarson Thanks so much!

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@bustrbrwn22

@sarsarson. I’m just starting my Tarlov cyst journey. I can’t seem to find the links for the medical articles you mentioned. Could you repost them? Thanks so much.

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Here are a couple more articles. There is a very active Tarlov Cyst Support Group on Facebook. Their files section is full of good information. Of course, it’s a mutual help group so not medical advice but can offer a lot of good information on the condition. Most importantly, you may want to send your MRI to one of the TC experts for review and consultation. This can be very helpful in sorting out whether your pain is from the TCs or another condition.

Shared files

Electromyography_and_A_Review_of_the_Literature_Pr (Electromyography_and_A_Review_of_the_Literature_Pr.pdf)

High Prevalence of Perineural Cysts in Patients with Fibromyalgia and Chronic Fatigue Syndrome Mieke Hulens, MD, (High-Prevalence-of-Perineural-Cysts-in-Patients-with-Fibromyalgia-and-Chronic-Fatigue-Syndrome-Mieke-Hulens-MD.pdf)

jpr-15-193 (jpr-15-193.pdf)

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@sarsarson

There are a couple other doctors who specialize in TC surgical procedures. One is Dr. Rudolph Schrot in Sacramento, CA and another is Dr. William Welch in Philadelphia, PA. I had consults with Dr. Feigenbaum and Welch. Both said the same thing, which was that my cysts were the source of my pain. I appreciated having two opinions.

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@sarsarson Thank so much. Did either of these doctors require you to have a procedure to test whether lidocaine or some other type of pain medicine at the TC level such as steroids actually improved your pain? Or could they tell just by where the cyst was located?

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Sorry to hear. I was told I have a tarlov cyst too. I'm baffled. Told they don't cause pain. They are insignificant because they are found while looking for something else. In my case, looking for cause of low back pain.... DA????? A cyst on your spine with nerves running through it doesn't cause pain???? Did hear someone had surgery by a doctor in California fixed her pain. I haven't researched further. Maybe they know it won't kill you, so they just continue to make money from your pain by leaving them alone?????? My pain has been increasing lately once again. So I will start the whole routine search again. Not sure if this site has a specific area for Tarlov Cyst subject only.

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@taml

Sorry to hear. I was told I have a tarlov cyst too. I'm baffled. Told they don't cause pain. They are insignificant because they are found while looking for something else. In my case, looking for cause of low back pain.... DA????? A cyst on your spine with nerves running through it doesn't cause pain???? Did hear someone had surgery by a doctor in California fixed her pain. I haven't researched further. Maybe they know it won't kill you, so they just continue to make money from your pain by leaving them alone?????? My pain has been increasing lately once again. So I will start the whole routine search again. Not sure if this site has a specific area for Tarlov Cyst subject only.

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I have Tarlov Cysts that hurt which started 4 years ago. I went to Dr Feigenbaum in Dallas and he can fix them. Normally they don’t hurt. My pain is in my female parts. He sent me to a pain doctor who gave me a numbing injection very close to where they are to make sure the cysts were causing the pain. The numbing injection lasted about 30 minutes and the pain came back during the day but it was less than normal. In 1 month I will have the numbing injection with a steroid to see if that takes away the pain for a longer period of time before I have the operation. I have heard about the doctor in California but he is too far away from where I live in Georgia.

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@francesmharris123

I have Tarlov Cysts that hurt which started 4 years ago. I went to Dr Feigenbaum in Dallas and he can fix them. Normally they don’t hurt. My pain is in my female parts. He sent me to a pain doctor who gave me a numbing injection very close to where they are to make sure the cysts were causing the pain. The numbing injection lasted about 30 minutes and the pain came back during the day but it was less than normal. In 1 month I will have the numbing injection with a steroid to see if that takes away the pain for a longer period of time before I have the operation. I have heard about the doctor in California but he is too far away from where I live in Georgia.

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Thank you so much for your reply. What have spine docs or neurologist told you about the cyst? My pain is mainly buttocks, left leg, and a horrible rib pain. All ribs feel like they are broken or bruised and being crushed. Docs seem to know as little about rib pain as Tarlov cysts. I'm in MN, so keep looking for someone at MAYO to start research or something....... Also baffles me MAYO CLINIC attaches their name to this site, yet you hear very few people talk about any help from MAYO. Thanks much for sharing your future results too. Love hearing any successes on this site. Thanks.

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Hi there! My pain started this July, 3 months after giving birth to my second.
My tarlov cyst is 4.4cm now and the pain is at the left side of my tail bone and the left side of my female parts.

For me it gets worse when I heat the area, or have a bath/sauna.

I’m curious to know if this happens to others too?

Still new to this and trying to find ways to deal with it…

I do want another baby but I’m not sure if I could now that it’s symptomatic…
If anyone has given birth after the cyst has become painful do share your experiences.

Thank you!

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@sarsarson

Here are a couple more articles. There is a very active Tarlov Cyst Support Group on Facebook. Their files section is full of good information. Of course, it’s a mutual help group so not medical advice but can offer a lot of good information on the condition. Most importantly, you may want to send your MRI to one of the TC experts for review and consultation. This can be very helpful in sorting out whether your pain is from the TCs or another condition.

Jump to this post

@sarsarson. Thanks so much!

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@bustrbrwn22

@sarsarson Thank so much. Did either of these doctors require you to have a procedure to test whether lidocaine or some other type of pain medicine at the TC level such as steroids actually improved your pain? Or could they tell just by where the cyst was located?

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Hi. They did not require a nerve block for me although this is a common step in sorting out the source of pain. All other sources had already been ruled out or treated in my case so i didn't have to go through this step. If you are asked to do it, that's good because you would never want an unnecessary TC surgery and other sources of the pain may be easier to treat.

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@taml

Sorry to hear. I was told I have a tarlov cyst too. I'm baffled. Told they don't cause pain. They are insignificant because they are found while looking for something else. In my case, looking for cause of low back pain.... DA????? A cyst on your spine with nerves running through it doesn't cause pain???? Did hear someone had surgery by a doctor in California fixed her pain. I haven't researched further. Maybe they know it won't kill you, so they just continue to make money from your pain by leaving them alone?????? My pain has been increasing lately once again. So I will start the whole routine search again. Not sure if this site has a specific area for Tarlov Cyst subject only.

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Many doctors are not aware that TCs can be symptomatic. They are a fairly common finding but it is much less common that they become symptomatic. You might look at a post i recently made where I uploaded an article about reasons why they are often overlooked. It is so very frustrating!

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