Author Topic: Update on possible new treatment, from Dr. Goldstein  (Read 14648 times)

needhelpage31

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Update on possible new treatment, from Dr. Goldstein
« on: March 26, 2012, 07:48:25 AM »
Friends:

This morning I got the message below from Dr. Goldstein. I emailed him back, and he invited me to set a phone appointment, for more information. I will do that, and then report to you what I learn.
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This is a group e-mail from me to all my patients over the years who have come to see me for assessment and management of all different kinds of problems with arousal and ejaculation/orgasm.  It seems that finally we are on the verge of a huge breakthrough in the management of arousal/orgasm - but it is very early to tell about long term results.   I recently met a neuromodulation expert - Dr. Kenneth Peters - chair of urology at Beaumont Hospital in Royal Oaks MI.   Dr. Peters has a different approach that makes much sense clinically - he can implant a permanent pudendal nerve stimulator (S2,3 and 4).  This procedure may be a huge breakthrough as it directly engages stimulation of all relevant sacral 2,3,4 nerve roots.  The theory, that seems consistent with current clinical experience, is that if one can safely and effectively long term stimulate the pudendal nerve, arousal and orgasm should improve.  In the long run, the neuromodulation approach, may be better than current pharmacologic approaches.  I also have plans to visit Beaumont and learn the technique in the Fall 2012.

hopepleasure

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #1 on: March 26, 2012, 08:20:15 AM »
Im glad to heard that there is new cure of ejaculatory anhedonia i hope it will have success and it seems to be connected with what told me my doctor that there is no reaction in the area nerve does not respond.

anyway im pretty happy that people are movin in this forum  and try things to cure.



searchingforcure11

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #2 on: March 26, 2012, 09:10:32 AM »
This makes a lot of sense.  I really do feel the issue is with not as much sensation which would be caused by the nerves not working 100 %.  The times I do experience orgasm there is much more increased sensitivity and I can feel sensations better.  Other times when it is not that good I notice I dont feel as much. 

Michael

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #3 on: March 26, 2012, 06:14:11 PM »
Friends:

This morning I got the message below from Dr. Goldstein. I emailed him back, and he invited me to set a phone appointment, for more information. I will do that, and then report to you what I learn.
----------------------------------------

This is a group e-mail from me to all my patients over the years who have come to see me for assessment and management of all different kinds of problems with arousal and ejaculation/orgasm.  It seems that finally we are on the verge of a huge breakthrough in the management of arousal/orgasm - but it is very early to tell about long term results.   I recently met a neuromodulation expert - Dr. Kenneth Peters - chair of urology at Beaumont Hospital in Royal Oaks MI.   Dr. Peters has a different approach that makes much sense clinically - he can implant a permanent pudendal nerve stimulator (S2,3 and 4).  This procedure may be a huge breakthrough as it directly engages stimulation of all relevant sacral 2,3,4 nerve roots.  The theory, that seems consistent with current clinical experience, is that if one can safely and effectively long term stimulate the pudendal nerve, arousal and orgasm should improve.  In the long run, the neuromodulation approach, may be better than current pharmacologic approaches.  I also have plans to visit Beaumont and learn the technique in the Fall 2012.

NH - Upon reading your repost of Dr. Goldstein, I am nodding, I am hopeful, and grateful that perhaps, this might be the elusive cure.
My gut, my mind has pointed at the pudendal nerve -- I've posted about it.
 We all will look forward to learning your feedback with respect to the conference call.  Thanks for keeping us in the loop
 



« Last Edit: March 26, 2012, 06:18:57 PM by Michael »

needhelpage31

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #4 on: March 26, 2012, 07:39:26 PM »
In case anyone is curious, I have a phone meeting with Dr. G, set up for late in the day on Wednesday April 11th.

I will post on this message board everything of interest.

NoFun

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #5 on: March 28, 2012, 02:04:44 AM »
  Dr. Peters has a different approach that makes much sense clinically - he can implant a permanent pudendal nerve stimulator (S2,3 and 4).  

This procedure may be a huge breakthrough as it directly engages stimulation of all relevant sacral 2,3,4 nerve roots.  The theory, that seems consistent with current clinical experience, is that if one can safely and effectively long term stimulate the pudendal nerve, arousal and orgasm should improve.  In the long run, the neuromodulation approach, may be better than current pharmacologic approaches.  I also have plans to visit Beaumont and learn the technique in the Fall 2012.

Permanent nerve implants? I guess if they work. Whatever it takes.

anthony

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #6 on: March 29, 2012, 12:01:04 PM »
hello! needhelp31
I have the same problem and I visited Dr Irwin Goldstein 2 years ago ,also will visit him in 2 weeks in San Diego.
Last time he prescribed a lot of drugs to me and they didn’t help, may I ask if any helped you.

Searchin4answers

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #7 on: April 08, 2012, 08:45:20 AM »
Anthony...I am considering flying out to SanDiego to be treated by Dr. Goldstein. Did any part of his treatment protocol help you? I don't want to spend a couple of thousand dollars for nothing. Have you heard of it helping any of his other patients?
« Last Edit: April 08, 2012, 08:46:52 AM by Searchin4answers »

Michael

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #8 on: April 12, 2012, 05:02:12 PM »
We look forward to reading your write-up. Thank you.

In case anyone is curious, I have a phone meeting with Dr. G, set up for late in the day on Wednesday April 11th.

I will post on this message board everything of interest.

needhelpage31

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #9 on: April 23, 2012, 08:08:54 PM »
OK guys, I am overdue on this report. But hopefully better late than never! I will err on the side of giving too much information here. Forgive the length of this post.

I emailed Dr. Peters in Michigan, after speaking with Dr. G. Then Dr. Peters was kind enough to surprise me with a call later that very day. (This was one day last week.) We talked for at least 20 minutes.

He said that he had never heard of ejaculatory anhedonia (which won't surprise anyone on this message board). He and Dr. G met at a meeting. Dr. Peters is a urologist, and has used Medtronic's Interstim device to help women with Persistent Genital Arousal Disorder.

I've read of this condition before, in which women (and a few men) feel constantly on the verge of orgasm. By implanting the device, electrical current floods the sacral nerves. This effectively "confuses" the brain into not registering the discomfort.

The approved use of the device is for people with severe bladder control problems, using the above principle.

Dr. Peters has found that the success rate of this treatment increases if the pudendal nerves are stimulated, rather than the sacral nerves.

Dr. Goldstein suspects that we may have a pudendal nerve dysfunction of some kind, that could be stimulated with Interstim, helping our brains to process signals differently.

I asked a few questions and read online about how this works. Here are a few things I've learned -

- The procedure has two steps. First, a trial of up to three weeks. Then (if successful) implantation.
- During the trial, wire leads are implanted, and you can attach them to an external control device the size of a cellphone. With it, you can increase, decrease, or turn off electrical impulses. I gather that during the trial you can disconnect it altogether until you want to use it. (The wires would remain in place.) Unlike the problems above, we would not need continuous electrical stimulation.
- The implant itself is a little bigger than a quarter. They implant it under the skin. Usual battery life is 3-5 years.
- There's  a remote to control the implant. I would suspect that since we'd have it OFF almost all the time, we could get much more life out of it.
-This would be critical, because the procedure won't be covered by insurance unless you have a documented history of urinary frequency and urgency, and have tried various other therapies first.

And what is the cost? Well, Dr. Peters very kindly offered to have his staff price out what it would cost for a private-payer to have it done. He followed through, and tells me that the trial stage would cost $11,000. The second part would be $15,000. (These are estimates, and final numbers would vary a bit.)

He also said that doing this for men would require "a different approach" than for women.

I was hopeful that we might be able to arrange an in-office min-trial of only an hour or so, to see if we could get any result from it at all, before having to spend a full $11,000. But when we talked, he seemed to think the full trial was gave the best shot at results.

My fear is that the high cost to try it out will prevent most of us from trying it at all. Whereas if we could do an in-office session for maybe $1-2k, we might have a much larger pool of people to experiment with.

I had been psyching myself up to spend $5-6k on a trial, but $11,000 would take me some time to save up. (I live only two hours' drive away from Beaumont Hospital in Michigan, where he practices.)

The good news is that he seems to have caught Dr. G's vision of trying to make a difference and help the unrecognized group of EA sufferers. And I appreciate his promptness.

Even on our one call, Dr. Peters was a good listener. And we all know that too many doctors won't listen.

What questions do you guys have? I'd be happy to take any feedback back to Dr. Peters.

searchingforcure11

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #10 on: April 23, 2012, 08:56:30 PM »
Ya thats a ridiculous price for something we dotn even know will work or not.  You would think at least they could use a few people as guinea pigs to test this out.  If it was guaranteed to work I would save up for it.  Though 26,000 dollars would take a lot of years for me to save up.  I am shocked some doctors have not heard of EA.  I have an appt next week and I am not sure how to approach the doctor.  I guess I can just tell him I have lack of sensation and also ejaculations are not always pleasurable.  At this point I will take anything.  I know people in here say Viagra or Cialis only just makes you harder but from my experience if I am throbbing and rock hard usually sensation is better.  I would be willing to try teh blue pill to see if it helps out.  I am already noticing improvments just with diet and exercise alone.  But its not always good.  The doctor should give me something I am hoping.  Natural supplements just havent worked for me.  I am a little nervous bringing this up to my doctor.   But I doubt he sends me home with absolutely no drugs to help improve things a little.  If he says Viagra I will try that and schedule a follow up.  For me the key is the more sensation I feel the mroe likely I will have a pleasurable orgasm.  When build up is weak and less sensation then I usually end in a bad orgasm.  I might need to have blood work done though before he writes up any scripts.

needhelpage31

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #11 on: April 24, 2012, 08:10:34 PM »
As an FYI, I got a private message from someone who might be a candidate for this procedure, and has urinary history that could help insurance to pay for it.

He just registered today. I hope he'll post here what he finds out.

Michael

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #12 on: May 06, 2012, 09:33:26 AM »
NH31 -

Thank you very much for sharing this cutting-edge information with the EA community.  

I marvel and am appreciative of the Doctor's "Tesla-like grit" in finding a solution to this mysterious, sexual sensory dysfunction.

a few questions -

1. How many individuals (with bladder problems) have had the Interstim wire leads implanted?   What was the success rate?

2. Are the wire lead implants permanent or can they be replaced?  In other words, can Interstim 1.0 be easily interchanged by Interstim 2.0?  

3. Do the doctors foresee a time where medication will be designed to stimulate our pudendal nerves while reworking out brain chemistry? (as opposed to an impant)

4. Is there a website for us to digest more information about this innovative device/procedure?

If this device restored my sexual sensations sans complications, I would pay any amount.

On a seperate note, perhaps there is a striking common feature among our Pudendal Nerves.    

Would Dr. Goldstein be receptive to using an MRI scanner (MR Neurography) to examine our pudendal nerves to determine if there is a common denonminator among the "EA Group" vs. the "non-EA Group?"

NH31, thank you.

-Michael





« Last Edit: May 06, 2012, 09:36:47 AM by Michael »

needhelpage31

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #13 on: May 07, 2012, 11:14:52 AM »
Michael:

Those are good questions. I will answer them as I know how -

1) Dr. Peters has never done Interstim for our problem. He has done it for urinary problems, and feels that it COULD help with EA.

On a personal note, the successes of Dr. Stuary Meloy (search him online) lead me to believe that this theory can work).

2) The procedure is mostly permanent. You can have it surgically removed of course. But it's not like you can just pull them out if you feel like it.

3) Since the theory is to override or jolt the nerves, to improve the feeling, I don't think a medication could ever have the same effect. (A medicine would effect the entire body, for example.)

4) If you search for the Interstim device, you can read what the manufacturer says about it. You can also read experiences of people (mostly women) who've used it for urinary problems.

An MRI of the pudendal nerves is an interesting question. Not being a physician myself, I can't say whether that would really help or not. I don't know what can or cannot be seen. Also, it's costly.

But if there IS something that could be looked for, an MRI of a group of us could be very interesting.

sensation

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Re: Update on possible new treatment, from Dr. Goldstein
« Reply #14 on: May 08, 2012, 12:15:12 AM »
I quote:

3) Since the theory is to override or jolt the nerves, to improve the feeling, I don't think a medication could ever have the same effect. (A medicine would effect the entire body, for example.)



That's exactly what I meant. The problem IS over the entire body. There are erogenous areas all over the body which can give you pleasure, only the most sensitive usually are on the genitals. I don't see how such a device would improve sensations on other parts of your body.