Tarlov Cyst on the spine: Any advice?

I have/had three in my sacral region and, after 9 years of symptoms, ended up having surgery with Dr. Feigenbaum in Texas 16 months ago. I also had a consult with Dr. Welch in Philly. There is a third expert in Sacramento, CA - Dr. Schrot. Having a consult with one or more of the experts is very helpful in understanding what is going on in your body. It is possible that epidural steroid injections can make the condition worse or may even be causal so it may be best to avoid this intervention which is often suggested by doctors who are not knowledgeable about the condition. There are some good scientific articles about Symptomatic Tarlov Cysts. I will find a few and post here. They can be helpful with your doctor. Good pain management is key and believing in yourself - you know your body best!

@armenm2121 I'm sorry you are going through this and the surgeon was dismissive. He is just protecting himself because he probably doesn't want the case. That is discouraging. I went through this too, not for tarlov cysts, but because I had unusual symptoms from my spinal stenosis and I was turned down by 5 surgeons before I came to Mayo. I was always researching surgeons to consult because I needed an alternative plan. I was reading medical literature to find a surgeon who's interests matched my condition. That's actually what lead me to Mayo, and I found a great surgeon there who helped me and did surgery to resolve my stenosis. Having bladder or bowel control issues can become a permanent problem because of spine issues. That alone is reason for a spine surgeon to examine you, but you will need one who is not afraid of tarlov cysts. Surgeons don't want to fail, and they are judged with statistics for the success of their procedures and rated by insurance companies and Medicare. They don't want to take a risk of failure and have that affect their earning potential. That may sound harsh to say this, but when you find a specialist who has treated tarlov cysts, you may get a better response and your struggles are validated. Keep looking for a good surgeon who understands what you need.

How did the surgery go with doctor Feigenbaum?
I am going for a consultation Thursday. I have read many people get better over time after surgery with Dr Feigenbaum. People get back to there old life. How do you feel after surgery? I read I had to stay in Texas for about 2 weeks after the surgery. I Hope your surgery was a success. I decided not to go back to Dr Welch since he could make it 50% better but I would never be able to sit.

I am going to Dr Feigenbaum
Thursday for a consultation. I went to Dr Welch who confirmed my GYN’s diagnosis of Tarlov Cysts. I decided to use Dr Welch because the pain would be cut by 50% but I would still not be able to sit. Dr. Feigenbaum is a neurosurgeon who specializes in treating of Tarlov Cysts. His website gives much info on Tarlov cysts and the testimonials of many patients who had surgery and gotten much better. I hope this is helpful.

What Doctor at Mayo did your TC surgery?
Thank you😊

The surgery itself went well and my recovery from the surgical incision was easy. I can sit longer than before and some bowel issues have improved. However, my overall recovery has been slow and difficult. I am able to sit longer but still have fairly severe pain and am dependent on medication to get through the day.

That said, people have a WIDE variety of recovery trajectories depending on how they go into surgery. Important is are how long you’ve had symptoms before, other spine conditions you may have, perineural conditions discovered during surgery (for example Dr. F found i had Cystic Dural Ectasia and fixed this in the same surgery) your overall health, and age.

According to Dr. F’s data only 70% have improvement (ranging from ‘SOME’ improvement to complete). I can honestly say i had ‘some’ because i can sit longer but that is about it. I had other spine issues going in so it’s hard to say where I’d be if i had a simpler profile.

Many people do have full or significant improvement within 1-2 years and we may not hear as much from them as they’re not looking for help or connection on platforms like this or Facebook.

A reason for surgery other than symptom improvement is to stop the disease from advancing. In that category i feel it was a success as i am not worse and definitely feel that i am very, very gradually gaining strength.

Some have mentioned Dr. Welsh saying 50% improvement. That’s probably an honest average prediction but who knows how it compares to Dr. F’s ‘some’ improvement category within which 70% fall into). Even though i fall within Dr. F’s SOME improvement, I can say i have not yet reached 50% improvement but i hope i do eventually! Dr Welsh uses a slightly different surgical technique and so comparing the two and their stats may not be apples to apples.

Dr. Welsh is is more of an academic and does all types of neurosurgeries, not just TC. Dr. F is a specialist in TC surgery and focuses only on this.

I agree with Jennifer saying that some surgeons will protect themselves because they lack knowledge. They may also be watching published info about this surgery which is inconclusive as to which technique is best. It seems that the situation these days is that the TC experts each have their own well honed technique but these have not been subject to scientific evaluation or scientific comparison studies. The field seems to be growing and knowledge of the condition slowly expanding but it is still definitely in early stages.

@cpidgeon59 Thanks for asking. My surgery at Mayo was for Cervical stenosis because of a ruptured C5/C6 disc with bone spurs compressing my spinal cord. My surgeon was Dr. Jeremy Fogelson at Mayo Rochester. I had seen some literature he was a co author on involving Tarlov Cysts, so I think that is how his name came up. I didn't have those. I do like to welcome spine patient members even though we have had different experiences. I hope this wasn't too confusing. Dr. Fogelson is an excellent surgeon as my Mayo Clinic patient story will confirm. He is also very compassionate, and is a spine deformity expert. He does some big surgeries as well as simpler ones, like mine.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Are you looking for a surgeon who treats Tarlov Cysts?

Thank you Jennifer!! I had read your wonderful article on your art several months ago.
Always love to get great referrals on surgeons for any future needs.
I do have a neurosurgeon in California that specializes in TC.
Thank you for reply🌺🌺

I just went to Dr Feigenbaum and he told me I had to have a nerve root block near the Tarlov Cysts to see if the pain decrease to make sure the cysts are causing the pain. I only have pain in my female parts. Many of Dr F’s clients also have pain in there legs and buttocks I think. I am in the process of scheduling a nerve root block. I have had this pain for 4 years and have had many Gynecological treatments which have not worked. I am older 72 in good health and in good condition so but Dr F said my recovery recovery will take longer. It appears Dr F has great results.

Thanks for sharing. I just saw Dr F and he sees the Tarlov cysts in my MRI. He has sent me home to have a nerve root block bilaterally at S2 to make sure the pain is coming from the cysts. He is also having me have a lumbar MRI in addition to the MRI Of my pelvis. I only have pain in my female parts and not in my legs or buttock. It sounds like you recoverd quickly. How long? It appears it takes a while to get back into walking and you have to start out slow. How quickly were you back up and walking and doing things as usual. Thanks so for your help