Tarlov Cyst on the spine: Any advice?

Where can I find the article on TC that you mention please?

There is also a good doctor /neurosurgeon who does TC surgery in Philadelphia- Dr William Welch at Univ. Of Pennsylvania.

Hi, Yes, heat is very difficult for me too. It seems to aggravate the nerves in my glutes/hip & leg that are affected by Tarlov Cyst. Frustrating not to be able to take warm bath! It has also made water therapy impossible because the therapy pools are so warm. I often rely on ice to settle things.

I know. I have been to and his results are only 50%. Dr. Feigenbaum has 90% to 95% of a good outcome.

Thanks for letting me know. A bit sad as I was looking forward to the hot springs in japan next month 🙁

Feigenbaum’s published results are 70% have improvement. Be careful comparing these because the improvement that Feigenbaum publishes is in ANY symptom. So if you’re sitting better but everything else is the same then you are classified as part of the 70% good outcome. You might ask them what they mean by good outcome. Usually the primary goal of the surgery is to stop progression of the disease. Some also get symptomatic improvement of varying degrees. It will depend on how long you’ve had the condition, any other spine/neuro conditions, and your general health.

He did my surgery for 5 sacral Tarlov cysts in 2013. Am not a fan but maybe he has improved since then. I love Dr Kim in San Diego. He is the best by far.

I was diagnosed in 2019 with multiple sacral large tarlov cysts. It took 2 years of getting the run around of unnecessary Dr appts, injections, PT, Chiropractor care. From the beginning I knew something was wrong. They listed me as a chronic pain patient, as if I was just looking for drugs. After I kept falling down the stairs, I went to the PCP who decided to drug test me! I was so mad because I knew something was really wrong and the Dr had in his 👄 ND I was a drug addict. I was not going to test the drug test, but then I thought the would think I was. I took the test & left the office & got a new PCP the same day. I asked for an MRI and was told no. That still baffles me. The pain Dr tortured me with 3 SI injections in 2018. I begged him for an MRI. Finally a year after seeing him, he ordered an MRI which is when my Lage 2.3 cm tarlov cysts and 1.9 cysts were found with dozens of other smaller ones which they did not measure. This Dr never called me to give me the results, he never returned any of the dozen calls I left messages for him. I got my results from another Dr 3 months later I was seeing for something entirely different within the same practice. I was shocked when I read the MRI report & then did research. I cried for weeks at how I was treated having something debilitating as tarlov cysts. Walking was not only hard, but so painful. Every few steps, I get a severe sharp pain in my groin. I found another practice, and they treat me well. I had a spinal cord stimulator put in & it was like heaven, but had an accidental fall & broke the wires. Then I had a 2nd one put in, this one was a paddle and it did not work for the area that needed it. I just had it removed & I feel so deflated. I do take pain meds & every appt with my pain Dr, I get drug tested & I have to take my medication there so it can be physically counted. I love my Dr, and I know he is only doing what he has to do, but it makes me feel like I'm doing something wrong. I understand people do abuse drugs, however I do not. I'm moving to Florida near the Mayo Clinic next year & will need a Dr. Any suggestions??

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.

Is anyone here from Canada?

I'm having lower back pain for 5 weeks (I know, it isn't long compared to many others on this thread, but I wanna fix it before it got worse and chronic) which progressed into my right leg and toe with tingling and numbness since the 3rd week. It's disabling me from usual daily life and work and pretty much anything even as simple as getting dressed. After MRI on my lower spine, radiologists found no herniated disc or other disc issues, but found at least one sacral Tarlov cyst, pronounced to the right, associated with bone remodelling.

My symptoms are getting worse since onset, as now I started experiencing mild bladder issues. My current treatment is only NSAID since originally suspected to be disc problems which were ruled out in MRI.
I'm residing in Toronto from Hong Kong, and have no US visa. I read up in the Foundation website and found there's a doctor in Canada, Dr. Kieran Murphy MD, for such issues. But I have no idea how to navigate through the Ontario public healthcare system to get referred specifically to Dr. Murphy.

But looks like Dr Murphy is now on the research side only instead of operative. If he no longer perform operations I don't know how I can find any other neurosurgeons who are experienced in fixing Tarlov cysts..

(I did find some good neurosurgeons from google but not sure do they do Tarlov cysts..and the referral process to find a relevant neurosurgeon even for just consultation is long and tiring..)