Dr Weiss - personal experiences

Diagnosis, Nerve Blocks, Physical Therapy
manon13

Dr Weiss - personal experiences

Post by manon13 »

On other websites I have found many comments on the so called Stanford protocol by Dr Wise (most of them very critical).
But has anyone visited Dr Weiss? Opinions?
Thank you
M
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Dr Weiss - personal experiences

Post by donstore »

Check TIPNA site.
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
User avatar
Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: Dr Weiss - personal experiences

Post by Celeste »

donstore wrote:Check TIPNA site.
I agree. There is a lot of information on this topic through the years.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Post by HerMajesty »

I saw Dr. Weiss for one visit. He was recommended to me verbally as an expert PN Doc, before I read the old site and had a sense of who a the Docs are.
His initial visit is overpriced...people complain about Dr. Filler when it comes to money, but Dr. Weiss is twice as expensive.
My overall impression was that he has made a big name for himself, mostly by being the only MD who bothers to do what the pelvic floor PT's do...but he gets way more accolades and money for the same stuff because he is a Doctor.
His mode of exam was to palpate transvaginally along the pudendal nerve and ask where it hurt. Because he could not find tender spots on my nerve this way, he seemed almost to disbelieve that I have pudendal neuralgia, and he definitely would not give me a nerve block as this is apparently how he does them: by injecting on any tender areas he palpates, without imaging guidance.
I did get 2 useful things from the trip:
1st, during the exam he does a manual pudendal nerve mobilization technique which i found gave me some relief, so I found a paper he wrote about it and use the same tequnique sometimes, to the best of my ability on myself. It does help when i do it, but it is time consuming and awkward so this is only rarely.
2nd, he was the only practitioner who bothered to point out my morton's toe and gait issues, which I found very helpful for myself and my family. Three people in my family have pelvic issues, and several more have foot and leg issues, all from gait problems secondary to genetic morton's toe. Nobody bothered to explain this before so I did not know prior to seeing him how I was injured, why it was in my family, and how to prevent further injury in myself and my son, and hopefully prevent any injury at all in my daughter. This I found extremely useful...OK now i have told you that gait problems can lead to pelvic pain syndromes so you don't have to see Dr. Weiss.
A friend I met through my PT, who is very disbled and in much more pain than I, went to see Dr. Weiss and she interested him more. He asked her to stay in a hotel in San Francisco for a month and get daily treatment by himself and his PT team. During that time, he supposedly broke up a large amount of scar tissue around the pudendal nerve, manually via transvaginal access.
When he sent her home, it was with assurances that he had "got it all" and that she did not need more treatment but that it takes 1 1/2 years for the nerve to heal so if she just went back to her painful disabled life in a year or two she would be well. This is in my opinion and personal experience, contrary to the reality of successful PNE treatment.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
manon13

Re: Dr Weiss - personal experiences

Post by manon13 »

Thank you all. I am getting the impression that no PT works from this website and that both wise and weiss are to be avoided.
The case on wise seems prette clear.
What I do not understand is why:
- PT is used more and more by all French doctors post op
- dr Beco is doing it himslef and advising strongly to his patients also to try it pre-op
- dr Weiss has been with Beco, Antolak and others at the Toronto conference this year and they all seem to respect his judgement and actually claim to have learned techniques from him.
It seems strange under these conditions to discard him completely?
Thank you for further advice
Manon
User avatar
ezer
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Joined: Sun Sep 19, 2010 6:53 am

Re: Dr Weiss - personal experiences

Post by ezer »

I saw Dr.Weiss for a full year and I did not benefit from his treatment.
He offers a real PN diagnostic which is valuable when you have been bouncing from one doctor to the next. He also offers nerve blocks, trigger point injections, and has PTs on staff. Some people do benefit from his nerve blocks and that can be valuable. In my case those nerve blocks made me worse each time.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Dr Weiss - personal experiences

Post by donstore »

Ezer,
What importance do you place on the fact that Dr. Weiss does not use imaging guidance in his nerve blocks ?
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Dr Weiss - personal experiences

Post by HerMajesty »

manon13,
re your impression that no PT works: If you look at the details of my case in my signature, you will see I have been highly successful with PT. BUt it was PT Manual Therapy, which is joint work. Dr. Weiss and "Dr." (PHD) Wise are both dismissive of this and do soft tissue PT only. The only reason I can fathom that they dismiss the value of work on the pelvic girdle (bony pelvis), is because they are already making plenty of money with their current formula and have no desire to learn anything new.
I think Dr. Weiss does believe in his work though; whereas David Wise is your basic con artist.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Dr Weiss - personal experiences

Post by HerMajesty »

Ezer,
If the answer is not too personal and graphic, can you tell me how Dr. Weiss treats a male? I am curious as all his pudendal access for exam and nerve blocks was in my case and my friend's case, transvaginal.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
User avatar
ezer
Posts: 689
Joined: Sun Sep 19, 2010 6:53 am

Re: Dr Weiss - personal experiences

Post by ezer »

My nerve blocks with Dr.Filler were more successful so the imaging definitely helps. But even with Dr.Filler, the pain relief was very short lived. The speculation is that I had very dense fibrosis that prevented a good propagation of the anesthetic along the nerve.
Dr.Weiss uses his finger in the rectum to find the spot he wants to inject. With his other hand he goes through the gluteus muscle and lines up the hypodermic needle with his finger still in the rectum. When he feels the needle almost touching his finger he injects. Karen Wiesner (a very active forum member a few years ago) swears that those blocks gave her fantastic pain relief. It is definitely an art.
I had three blocks with Dr.Weiss. At the ischial spine, in the alcock canal, and at the penile branch.

Wise and Weiss are from the same Rhonda Kotarinos school of myofascial pelvic floor therapy (Wise/Weiss used to work together in the same practice but had a fallout). They learned or were treated by her so they perpetuate that form of treatment. I saw Rhonda at Dr.Weiss' practice once as she visits them periodically. They seem to embrace whatever Rhonda recommends. After her visit they modified their PT procedures.
Dr.Weiss believes in alternative medicine like classic Homeopathy (when the traditional conservative PN treatments fail) and that made me uncomfortable.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
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