Tarlov Cyst on the spine: Any advice?

Anyone know of someone in pa or near by that treats these

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!!

Hi,

Dr. William Welch in the Neurosurgery Dept, at Penn Medicine will consult with you and he also does surgery to drain and wrap them if he feels you are a good candidate. I had surgery in 2021 with Dr. Feigenbaum in TX but before that I got a second opinion from Dr. Welsh and found him to be very helpful!

Just wondering how your surgery with Dr Feigenbaum went! How are you today?
Many thanks for any comments!

I just went to Dr Welch in Philadelphia and he told me if he did surgery I would have a 90% to 95% chance in decreasing the pain by 50%. He said I would still have a sitting problem. He has done 500 Tarlov cyst surgeries. If I still won’t be able to sit without pain I don’t think I will let him do surgery. I am going to Dallas, Tx to see Dr. feigenbaum who socializes in surgery on Tarlov cysts. If you Google him you can find out a lot about Tarlov Cysts, surgery and recovery. I guess I will find out more about the % surgery will decrease the pain. I hope I get a better response since he is a specialist.

I have Tarlov cysts also. I have chronic pain. I have had the pain for 4 years and I recently diagnosed with Tarlov cysts based on a MRI. I am going to see a surgeon Dr Welch in Philadelphia next week to have a consultation. If he agrees about the cysts I am getting a second opinion from a Dr. Feigenbaum in Dallas Texas who specializes in Tarlov cysts for another consultation. These are the only 2 doctors I have found who remove the cysts. I found them online and once I see them I will find out more about the surgery. I am tired of the pain. I still try to live life like I used to the pain makes it very hard.

My daughter is 22 and has a large Tarlov cyst. I was just wondering what Dr. Welch and Dr. F. said (if you don't mind sharing). We are trying to get as much information about her cyst and how to treat it.