Tarlov Cyst on the spine: Any advice?

I went to Dr Feigenbaum who does a good job of lowering the pain. He told me I needed to get a lumbar MRI and a nerve root block very close to the Tarlov cysts to make sure the pain is coming from the Tarlov Cysts. If the pain is truly coming from the Tarlov cysts. I really don’t understand what he will do. He said you can’t remove them from the spine but he will at least drain & wrap them. It will be a long recovery but I don’t really know what that is either. I am not sure if he is the answer. If anyone has had Tarlov cysts drained please let me know.

I had Tarlov Cyst surgery with Dr. Frank Feigenbaum in Feb. 2015. I had three cysts on my spinal cord. I had the surgery because I have pain in my tailbone area especially when sitting. Prior to Tarlov cyst surgery I had a fusion of my L5 S1 and had my tailbone removed. Unfortunately, the doctor missed bone pieces. The Tarlov Cyst surgery did not relieve my pain. I went on to have the pieces of tailbone removed. It has helped my pain a little. I have just restarted gabapentin and feel a little woozy and tired. I hope the side effects will go away with time. I had taken it before but was also on opioids so I'm not sure it will work by itself.

Thanks for sharing your experiences. I also have a Tarlov cyst at s2, and joined their group on fb. It was good to read from people all over the world who suffer from this little known issue, many who have had surgery with Dr. Feigenbaum. Seems there is mixed results on pain relief and it often takes years, but at least it doesn’t worsen. I have damage to other areas, already had 1 fusion and I am right now searching for the best way to deal with pain relief.

I’m having a MRI of the It’s sacral spine on 31 August and also at the same time or 20 minutes after I will be having my second MRI of the lumbar spine and let’s see what it shows now, stay tuned.

Hi! I’ve been having piriformis muscle pain for over two months thought something was wrong and asked for an MRI.

There’s a 4.4cm tarlov cyst sitting in my tail bone a few I’m pretty sure this is the cause. But like everyone said the surgeons here in Hong Kong says the pain is not from this,.,

I’m really upset and my relationships are going downhill because no one believes in the pain that I’m having. Just asks me to go to physio.

US would be a bit far for me to travel to, but does anyone know a dr who will be brave enough to support symptomatic tarlov cysts?

I am getting depressed and I don’t want to lose hope… I am scared that it’s just going to get worse and no one’s going to help me… attaching my mri scan here.

I’m relieved to find others going through the same. I kept thinking, why me?? I’m 38 and I was completely fine before this sudden pain… thank you!

@juliemmm Welcome to Connect. It must be hard to live with a painful condition that isn't being recognized by your doctors. If you look back a few pages here on pages 5-7 of this discussion, members are talking about doctors who treat tarlov cysts. You can change the order from oldest to newest, or newest to oldest on the right side at top of the page. I hope that helps!

Tarlov Cyst has disappeared from new MRI findings … And what in the world is causing this pain, I’m confused

Thank you @jenniferhunter its great to meet others who are having this too… I feel like I’m alone in this, and even my husband doesn’t believe my pain.
I will take a look at the doctors… thanks again!

@armenm2121 is it the ‘disc bulging’? Do you have the actual scan?

Armenm, I can imagine that this must be confusing to have something show on an imaging study and then to not be there in the new MRI findings. This is something you should review with your doctor who knows your medical history and who ordered the testing to fully understand what is going on.

Please note that I removed the picture of the letter you had attached because it contains personal health information and contact information. We recommend not sharing such personal data on public forums for your own security.

When do you have a meeting to discuss with your doctor?