Volunteers Needed


#1

I NEED VOLUNTEERS!

I notice that everyone is seeking help from a handful of doctors (Goldstein, Crisler, etc). They don’t take insurance, and they have been unable to offer any real solutions. I am grateful for their advocacy, but this may not be the best route for a treatment. Others are going to their local endocrinologist/urologist who probably has little to no experience with guys with PFS. They typically deal with diabetics or prostate cancer all day.

So I am seeking volunteers to visit the top sexual dysfunction endocrinologists/urologists at the most prestigious hospitals in the USA (John Hopkins, Cleveland Clinic, Mayo Clinic, etc.). I will collect the treatment protocols and their success from the various volunteers, and then I will distribute this information to the community. Please email me if you are willing to see one of these doctors (any names will be kept confidential).

Even if we don’t find a solution through this mass search, we will undoubtedly bring awareness to PFS with every prestigious hospital in the country.

Please email which doctor you plan to see at PFSDOCTORSEARCH@GMAIL.COM

CA, Palo Alto – Standford Health - Michael Eisenberg 650.723.3391
CA, Los Angeles - UCLA – NO SPECIFIC DOCTOR IDENTIFIED - 310.825.2631
FL, Jacksonville – Mayo Clinic – Gregory Broderick – 904.953.0853
FL, Weston – Cleveland Clinic – Lawerence Hakim – 954.659.5188
IL, Chicago – Northwestern Memorial - Nejd Alsikafi – 847.599.1111
OH, Medina – Cleveland Clinic - George Coseriu - 216.444.5600
OH, Cleveland – Cleveland Clinic – Daniel Shoskes – 216.444.5600
OH, Medina – Cleveland Clinic - Richard Shewbridge - 216.444.6568
MD, Baltimore – Johns Hopkins – Arthur Burnett – 410.955.6100
MD, Baltimore - Johns Hopkins – Adrian Dobs – 410.955.9270
MA, Boston – MA General Hospital - Cigdem Tanrikut – 617.643.0044
MA, Boston – MA General Hospital - Aldiana Soljic – 978.882.6812
MN, Rochester – Mayo Clinic - Landon Trost – 507.538.3270
MO, St Louis - Barnes Jewish Hospital – NO SPECIFIC DOCTOR IDENTIFIED - 888.296.1169
NC, Durham - Duke University hospital - NO SPECIFIC DOCTOR IDENTIFIED - 888.275.3853
NY, New York – NY Presbyterian - James A. Kashanian – 212.746.5309 (same hospital as Jacobs)
NY, New York - NYU Langone - Joseph Alukal – 646.825.6323
PA, Pittsburgh – UPMC Shadyside - Thomas Jaffe – 412.641.2089
TX, Houston - Houston Methodist Hospital - NO SPECIFIC DOCTOR IDENTIFIED - 877.790.3627


#2

Yes it is nice to bring awareness to prominent drs in large hospitals, but I am not sure if there is any treatment for pfs. We do not even know the cause or mechanism at the moment. It sure would be nice though if more drs new about it. I have seen many and I am sure we all have.


#3

I agree that there may not be a treatment for us. I just think it’s possible that 20-30 of the smartest doctors in the world may be able to stumble across a treatment. Even if they don’t, at least these doctors will be aware of our situation, and they will surely talk to their colleagues and others in the medical community.


#4

Phil w the Foundation has a list like this that he disseminates information through


#5

I asked Phil to help me promote this, but he wasn’t interested. I’m sure he has his reasons. Nevertheless I am grateful for what he has done.

I hope that others will see it worthwhile to have the most prestigious doctors in world attempting to treat us from their individual perspectives. Even if it fails to find a treatment, the awareness it would bring within these institutions is a huge win.


#6

I thought this was a phenomenal idea, and I agree with the rationale entirely. Being treated by doctors that are aware of the problem, but not finding success in treating it is doing no one any good. It’s much better to have high profile investigative facilities at least paying attention.

I went ahead and booked with Dr. Trost from the Mayo Clinic. Have already had my first appointment with him, not sure if there will be a second appointment scheduled. Am writing this from the Clinic.

However, to your point @dustin , I found the following very interesting: Dr. Trost says he is extremely aware of PFS and that it’s very much a hot topic in his field (andrology) for the last 7 years. He says that he sees a new PFS patient at Mayo probably once a month on average. So, I would say the goal behind your post is working on some level.


#7

Did you feel this doctor was helpful and would you recommend other forum members visit him?


#8

“Helpful” is a difficult term for us. To my knowledge no doctor has been able to treat us PFS persons successfully. If there were, he’d have 10,000 patients and we wouldn’t have a forum.

I had a “helpful” doctor in Houston that was willing to throw some darts at the board, but nothing came of it. So in the end, all the hand-holding and empathizing, is it helpful, or does it just add up to a big medical bill and some failed experiments?

I am still currently going through the Mayo Clinic rat race, where you see multiple doctors and conduct mutiple tests, Trost was just one of the doctors. He at least knew what the fuck PFS was. I will probably have a more decent idea about whether this experience was “helpful” once the week is through.

But on the most basic level, I think every doctor I see here is another doctor at a RESEARCH facility that is more convinced that PFS is a real, prevalent problem, and THAT is indirectly helpful to all of us.

That’s why I think Dustin’s idea was actually a good one, even if I may not come away from here cured. Sorry for the long answer. Will update after I leave the Clinic.


#9

Appreciate the updates. I meant helpful in the sense that they are at least willing to try treatment protocols
to help. Every doctor I have seen has either thought it was in my head because my labs are normal or agreed that pfs could happen but said they didn’t know what to do to help. My plan has been to save up to see Goldstein but I’d rather go to a doctor that takes health insurance so please keep me updated on your Mayo Clinic visit.


#10

So far I am finding the Mayo experience helpful, even if in a bit of a different way than I might have initially expected. Will report back after Friday, still have one of my more important consultations forthcoming.

I don’t see a willingness to get “experimental” from the doctors that are treating. My sense is that the doctors giving consultations have to follow scientifically proven therapies and medicines. My guess is experiments are probably only conducted via the research arm. I wonder if one can sign up as a willing experiment participant…

Has Goldstein had success treating people? Under what kind of protocols?


#11

I’m not exactly sure on the statistics of his success. I’ve seen people post about him that he’s a quack and just trying to squeeze money from you and others have private messaged me that they are much better off after having gone to him. As no other doctor is willing to try anything with me and the research front is progressing at a rate in which I’ll be way too old for it to matter anyway I figured I might as well give Goldstein a shot.


#12

When are you going to Goldstein?


#13

Haven’t initiated any of the process yet, saving some pto at work (I don’t live in San Diego) and some money before I commit to an appointment. Id also like to see how the Mayo Clinic visit works out for @gcac