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Tarlov Cyst on the spine: Any advice?

Spine Health | Last Active: Feb 5 8:25am | Replies (167)

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@qball2019

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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Replies to "I ended up with multiple Tarlov cysts in my sacral area after a slip and fall..."

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.

Your life & experiences mirror mine! Please post after your surgery! I thought I was crazy at first, until I kept falling. I was black & blue almost head to toe for 2 years. Then the bladder issues started. I was thinking cancer or Parkinson's. The first Dr I had tortured me for 2 years with unnecessary treatment. I begged almost 2 years for an MRI & when he finally ordered one & results came back he never called me or returned any of my calls!! Now I'm with a great pain Dr,.it's my only option after 2 failed spinal cord stimulators. I wish you the best of luck with your surgery and pray you get the relief you need.

My MRI showed a Tarlov Cyst several years ago. My doctor back then said that would not be the cause of my pain. I got a second opinion where a MD PhD said my spine WAS the cause of my pain but didn't offer insight on where to look further into it. I went to the Tarlov Cyst Foundation after a couple of years of getting injections in my SI joint a d hip bursa, but I gave up pursuing research since my doc had deaf ears on the subject. I was given Gabapentin which I could not tolerate at all. Then my doc put me on Lyrica to try and it helped but I gained 17 pounds and it caused me to not be able to be very bright trying to work my difficult job at my company. Currently, I have arthritis in my left hip, the same side my Cyst is on, and my new doc in the state I moved too thinks the hip and groin are not related to the spine.

Hi. Long time since this discussion was started. Just wondering how you got on with Dr Feigenbaum and how your surgery went. Thanks!