How can I find a physician to help with Tarlov cyst pain?

@jdp3
You should see a neurologist for evaluation of the neurological effects of having tarlov cysts and a neurosurgeon to evaluate and recommend treatment options which may include surgery. The neurologist may also be able to recommend a pain management clinic.

Two neurologists have told me they are just “common findings”. I’m waiting on follow up with a spine surgeon but have been told the surgeons where I live don’t have treatments for them. Pain management doesn’t acknowledge their impact either. I guess I’m stuck

My understanding is that there are only a limited number of doctors in the US that work on removing them as there are nerve fibers that grow in the cyst. Dr Henderson and Dr withham at John’s Hopkins are two that I found. There is someone in Texas and in California I think. I would have to look into it further.

Thank you so much. It's sad to know treatment is not very likely for me, but at least it validates my experience. It is difficult to know as a patient whether your physicians are just gaslighting you or if they truly believe you are imagining your symptoms, or if they just don't know how to help, and are covering up by saying the cysts don't matter. It somehow makes me feel better to understand that it is a challenging condition and that at least at a few medical centers, it is understood as a valid condition.

I also have a Tarlov Cyst on my upper left side.
I have only found a Doctor team (many years ago) in Italy that are willing to work on Tarlov Cysts.

My pain originates from my lower back, in the area where the plumbers but crack meets the spine (and then mostly on the right side).
Radio Frequency Ablation of the medial branch nerves has helped me.

Neuro and back surgents can not operate.
My pains started with Lyme disease 6 years ago.

I have lived with tarlov cysts in my thoracic and sacral spine for many years.
It did take a long time for doctors to recognize that these are actually a real thing and can cause a lot of debility.
After years of hunting around finally I came across three of the top tarlov cyst neurosurgeons in the United States. One of them just happened to live where I am close to which is Sacramento. He has done many many many tarlov cyst surgeries. It is a complex surgery and personally unless I'm losing my bowel bladder function what I consider it although the cysts are of a size where a surgery could be suggested if other things do not help.
The interesting thing about the doctor that I see is that he's research oriented and often will have all kinds of ideas and stuff you can try although he won't tell you to do it he'll suggest that other people have done it and found whatever it is helpful.
The other doctor I came across in my research with someone in Texas Maybe it's called the spinal institute I forget.
One of the things he did prescribe was low dose naltrexone which often can take several months before it works. It seemed to increase my anxiety which is a challenge already so I didn't stay with it. I would like to try it again and see what happens.
There are times when my balance can be off and I fall . legs and low back will feel very heavy. These things tend to come and go.
I don't know if I'm allowed to recommend a neurosurgeon in here? If I can I will share his name sorry if this seems to ramble I would like to get everything related to each other in one section although for some reason I can't seem to back up to see the other stuff I've already written.
I get facet joint injections with an anesthesiologist and those help me. They don't help everybody. Also I wanted to say about the surgery that it is not something to sneeze at. I'm 66 years old and do I want to put myself through that?
Anyway I wish you good luck and I hope you find some relief. I have good days and bad days and I hope eventually you have more good days than bad!

You can go to a neurosurgeon to see if you have underlying problems in your spine causing cysts. Then if their is nothing else wrong but cysts, your physiatrist has the ability ( or can refer for) to conduct a nerve block to determine if the cysts are the cause or if it’s something else. There are a few Neurosurgeons who work on them.

@zoo Welcome to Connect! I can't help wonder about your user name and if you love animals? Would you like to share more about your spine experience?