Tarlov Cyst on the spine: Any advice?

https://www.frankfeigenbaum.com/
He is one of the few experts in the country. Others are in Sacramento and Philly. There’s one in LA as well. Though he’s not next door, Feigenbaum is closest to you for sure!
https://www.frankfeigenbaum.com/

I have Tarlov Cysts at all levels of the spine. I have chronic pain in the upper right stomach and had my gallbladder removed with the pain still there. I have pain also in the thoracic area of the spine. Left foot numbness, burning mouth and my body aches all over. Can someone point me in the right direction. This all started after a reclast infusion for osteoporosis that landed me in the ER with severe pain in the thoracic area and upper right abdomen pain. Then got worse after Covid vaccine and 3 days later needed up in ER with Chicken Pox.

Welcome @kgrainger, I moved your post into an existing discussion on Tarlov Cysts
- Tarlov Cyst on the spine: Any advice?: https://connect.mayoclinic.org/discussion/tarlov-cyst/

I did this so you can read previous posts and connect easily with other members living the Tarlov cysts, like @aflor @chief2020 @armenm2121 @j0y @kennoct and many others.

Here are some other discussions that may interest you:
- Burning Mouth Syndrome (BMS): Anyone found any relief? https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/
- Neuropathy support group https://connect.mayoclinic.org/group/neuropathy/

I have Tarlov Cysts at all levels of the spine. I have chronic pain in the upper right stomach and had my gallbladder removed with the pain still there. I have pain also in the thoracic area of the spine. Left foot numbness, burning mouth and my body aches all over. Can someone point me in the right direction. This all started after a reclast infusion for osteoporosis that landed me in the ER with severe pain in the thoracic area and upper right abdomen pain. Then got worse after Covid vaccine and 3 days later needed up in ER with Chicken Pox.

in reply to @kgrainger I had a Tarlov Cyst removed from my sacral spine many years ago by Dr. Rudolph Schrot who is associated with Sutter Medical Foundation in Sacramento, CA. In fact, he recently did a study on the removal of these cysts. I had a very good outcome as a result of the removal, and the recovery time was actually quite short.
Best of luck.

I'm not sure if anyone has mentioned arachnoiditis. If you have an MRI, I highly suggest you find a Dr who actually knows what arachnoiditis looks like. That in itself can be a feat. Good luck.

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!!