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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debduh11 | @debduh11 | Sep 14, 2023

I too have had a rather large Tarlov cyst. My neurosurgeon at Johns Hopkins, Dr. Long who has since retired, too said that is was rare to suffer in pain from this. On the contrary. It was rather large and painful. I had a couple of procedures where the cyst was drained one of my MRIs showed that the cyst had wore away my sacrum until it became paper thin. I had to travel from Baltimore to Philadelphia to get the surgery from one of the few neurosurgeons that was familiar and specialized in Tarlov cysts, Dr. Welch. He performed a laminectomy and placed a plate with screws in my sacral area. I still have pain, however, I probably would have lost the ability to walk if I hadn't had the surgery. Good luck with your decision!

sarsarson | @sarsarson | Sep 18, 2023

In reply to @mcassidy26 "Anyone know of someone in pa or near by that treats these" + (show)

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!

kgrainger | @kgrainger | Sep 18, 2023

Thank you I am in contact with Dr F in Texas and looking into his procedure

mtpoole | @mtpoole | Oct 10, 2023

In reply to @qball2019 "I ended up with multiple Tarlov cysts in my sacral area after a slip and fall..." + (show)

@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!!

Jump to this post

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

mtpoole | @mtpoole | Oct 10, 2023

In reply to @sarsarson "Hi, Dr. William Welch in the Neurosurgery Dept, at Penn Medicine will consult with you and..." + (show)

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

sarsarson | @sarsarson | Oct 11, 2023

In reply to @mtpoole "Just wondering how your surgery with Dr Feigenbaum went! How are you today? Many thanks for..." + (show)

My surgery was in April 2021. I’m still recovering. It’s been a long haul. My biggest goal was to stop deterioration, and the downhill spiral of symptoms I was experiencing by the time I had surgery. From that standpoint, it was a success. I haven’t gotten worse! I have gotten better but not as much as I secretly hoped when I was telling myself I just wanted to stop getting worse. The good thing is that my recovery has continued pretty noticeably now in my 3rd year post surgery. So, overall, I’m glad that I did it. Some people have a much easier time, others who I know have had more trouble than I. It seems to have a lot to do with our status going in.

How are you? What is going into your decision?

frances007 | @frances007 | Oct 11, 2023

in reply to @vadaanglin I had one removed several years ago with great success. Best of luck. Dr. Schrot in Sacramento, CA recently completed a study on these cysts, and I suspect you may be able to find more information by searching for him online. He is a wonderful person and a great surgeon.

lvulcano | @lvulcano | Nov 10, 2023

In reply to @francesmharris123 "I just went to Dr Welch in Philadelphia and he told me if he did surgery..." + (show)

Hi. My daughter is going to see Dr. Welch. Did you get any better advice from Dr. F?

lvulcano | @lvulcano | Nov 11, 2023

In reply to @francesmharris123 "I have Tarlov cysts also. I have chronic pain. I have had the pain for 4..." + (show)

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.