I noticed the Tarlov cyst foundation basically only has 1 Dr who I could reasonably see. Why not include the others?

I'm considering seeing Hsiang, John K., M.D., PhD. (Neurosurgeon) in Seattle the receptionist was very kind and told me he does diagnose and treat Tarlov cysts. Also they told me they'd take my Oregon Medicaid.

Why is he not included on the list? Does he not really treat them and just do evals?

What's the deal with this list:
http://spinetalk.conforums.com/index...num=1228196563

There are 3 Dr's ranging from 3 to 6 hrs drive from me who will see me. I'm confused am I missing something?

It looks like that list on the link was posted in 2008, so maybe there is a updated info somewhere else..

I see no one here has add any drs to the sticky thread yet...if you find any feel free to add them ..

I will update the sticky to help others when I feel more confident my research is valid.

On here and in your own sticky everyone is promoting the Tarlov Cyst foundation aka Dr. Feigenbaum a non profit group designed to help people find Dr. Feigenbaum as he is the only Dr. in the US listed as active on their site.

His receptionist wouldn't quote me a price but only said it was $17,000 in hospital fees should he operate and that they only take major private insurance. Going as far as to recommend I just buy private insurance or not proceed when I asked. He also operates oversea in Cyprus probably at a discounted rate. He has a 5 month "minimum" I was told wait for a free phone consult or a one month wait if I come to Texas for an office visit. It just sound so sketchy to me.

Then I find this other list and the first one I call in my area not even a far drive from me and he'll take my Medicaid. Yet everyone on here is only talking about Dr. Feigenbaum. I can't find anything anywhere recommending anyone else. It's very confusing. The whole nobody believes in this only this one guy he can save you attitude. I need to feel informed before I start putting in referrals and asking my insurance to approve authorizations out the state. I need a little confidence in these Dr's.

Spacifically Hsiang, John K., M.D., PhD. (Neurosurgeon) in Seattle. He has the best reviews and is the one who's receptionist I've been in contact with.

The other forum from the link I posted has a list from 2008 and then almost no activity or posts in the entire forum dedicated to Tarlov Cysts. I've searched extensively and haven't found another list or any other Dr's.

I'm not suggesting Dr. F is a scam expensive yes but it's surgery. I'm wondering if the others only take extreme cases like supper large cysts and if I really do need to see him. Right now I'm proceeding with both, getting on the list for the phone consult with Dr. F and trying to get in to see Dr. H through my insurance.

I suggest you ask the Doctor why (s)he is not listed as an approved provider of Tarlov Cyst surgery. I would also suggest you ask any doctor who states they can treat Tarlov Cysts "How many patients have you successfully treated and what has been the patient outcome 24 months post surgery?" The sad reality is that some attempts at surgery have had terrible outcomes.

Dr F is the most experienced surgeon in the treatment of the cysts.

Here are the names of the other neurosurgeons I came across but at least one expert, Donlin Long, the former chair of Neurosurgery at Johns Hopkins, has retired.

Dr. William Welch, Vice Chair, Department of Neurosurgery, University of Pennsylvania

Dr. Phillip Weinstien, Professor of Neurological Surgery, University of California -San Franscisco

Dr. Anne Oaklander, a professor at Harvard Medical School, also studies and treats pain due to the cysts.

Also part of the problem is that symptomatic Tarlov cysts under diagnosed and under treated. Physicians have been classically trained to ignore them despite nothing in medical literature supporting this position except for that not all cysts cause symptoms.

Hope this helps

Add:
Dr. Fraser Henderson is no longer taking new patients. This post notes he switched to cancer research some years ago.

https://www.causes.com/causes/335827...aser-henderson

Also, there's no "approved" list. Just lists of doctors who have varying degrees of experience in treating the cysts, but (hopefully) take symptomatic Tarlov cysts seriously.

Advice from my doctors was:
Go see the surgeon who does the most of that kind of surgery. They will be the most successful.

To paraphrase one of the neurosurgeons I've seen, "We've contemplated treating Tarlov cysts before but we wouldn't know how to go about it. I'll leave it to the guy who is a specialist on these cysts."

Generally, neurosurgeons do a variety of surgeries, depending on the diagnosis. Dr Feigenbaum does too. However, most of the surgeries he does are on Tarlov cysts and similar cysts, aside from logging the most surgeries on these kinds of cysts. (He also seemed like a nice guy, didn't take over my head, and was modest.)

How is Dr. Hsiang? Sharing your experience could help others in the NW or that can more easily travel to Seattle.