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Re: Big News - Surgery Scheduled in France 12/6/2018

Posted: Mon Dec 19, 2022 4:26 am
by April
Hi Dave,

I understand your frustration. But, there are always options to consider. Are you in the U.S.? Dr. Hibner treats men now, so you could consider visiting his clinic to see if he has any ideas. You could also do a zoom chat with him. He doesn't take insurance, but my HMO reimbursed me for my appointment with him because it didn't have pn specialist on staff. So, if you're in an HMO it might be covered.

April

Re: Big News - Surgery Scheduled in France 12/6/2018

Posted: Tue Dec 20, 2022 4:49 pm
by Dave44
Hi Avril,
I am French.
Thank you for your message but given the state in which I have been put for a year and a half I do not believe in a miracle.
This doctor chained the aggravations according to the testimonies available on a French site relating to these pathologies. We can even speak of mutilation in my case.
From then on, my message had no other purpose than to warn patients at the international level.

Re: Big News - Surgery Scheduled in France 12/6/2018

Posted: Wed Dec 21, 2022 12:42 pm
by needtoknow
Dave,
I'm French as well - may I pm you?

Re: Big News - Surgery Scheduled in France 12/6/2018

Posted: Wed Dec 21, 2022 5:21 pm
by Dave44
Of course, private message if you want.

Re: Big News - Surgery Scheduled in France 12/6/2018

Posted: Sat Apr 01, 2023 7:55 pm
by CarlieK
Tony,
I hope you have had total success with your surgery; I went to Nantes in 1999 and had surgery with 12 other PNE people age: 18-64. Most of us were on very strong medication by the time we found help. Mayo - Antolak was my doctor here. Anyhow, another surgery in 2008 with Hibner. Finally, I went to a medical school in Little Rock and they had a new doctor in the Pain Department (Emory University) and new to the program there. He tried to really help - he wanted me to see the Uro-Gyn Department and I did. She was the total department and could not take on any more patients. So, all I had was information. I moved from Hot Springs Village, AR to Tulsa, Oklahoma and found a uro-gyn in the University of Oklahoma Medical School Branch in Tulsa. I became a patient of a uro-gyn here. I had valium suppositories. Dr. Price called me in about a year later to discuss a new procedure that was blessed by the AMA. I was her first patient and it worked. No more pain. During my quest for help, I spoke with the main campus in Ok City and found that they had a program for PNE male department. If you are near a medical school, I suggest making an appointment there to see what is offered. Right now, I am overdue for the treatment by six months and need another treatment. It bothered me one night and time to make an appointment with her. My treatment is to be done every six months. No major surgery. I do not know anything about the male PNE plans. I do know that anything needs to be blessed by the AMA. The private doctors here that say they treat PNE are 20 years behind. Totally. If I had not continued on to find help I think I would go nuts. Botox relaxes the muscles and when the spasms ceased, the pain stopped. I can do anything I could before. If you are still in pain, seek help at your state's medical school and inquire about what they have to offer. They get it far faster, make changes in the procedure - it is in their options for people who need help.

Re: Big News - Surgery Scheduled in France 12/6/2018

Posted: Sat Apr 01, 2023 7:57 pm
by CarlieK
Tony,
I hope you have had total success with your surgery; I went to Nantes in 1999 and had surgery with 12 other PNE people age: 18-64. Most of us were on very strong medication by the time we found help. Mayo - Antolak was my doctor here. Anyhow, another surgery in 2008 with Hibner. Finally, I went to a medical school in Little Rock and they had a new doctor in the Pain Department (Emory University) and new to the program there. He tried to really help - he wanted me to see the Uro-Gyn Department and I did. She was the total department and could not take on any more patients. So, all I had was information. I moved from Hot Springs Village, AR to Tulsa, Oklahoma and found a uro-gyn in the University of Oklahoma Medical School Branch in Tulsa. I became a patient of a uro-gyn here. I had valium suppositories. Dr. Price called me in about a year later to discuss a new procedure that was blessed by the AMA. I was her first patient and it worked. No more pain. During my quest for help, I spoke with the main campus in Ok City and found that they had a program for PNE male department. If you are near a medical school, I suggest making an appointment there to see what is offered. Right now, I am overdue for the treatment by six months and need another treatment. It bothered me one night and time to make an appointment with her. My treatment is to be done every six months. No major surgery. I do not know anything about the male PNE plans. I do know that anything needs to be blessed by the AMA. The private doctors here that say they treat PNE are 20 years behind. Totally. If I had not continued on to find help I think I would go nuts. Botox relaxes the muscles and when the spasms ceased, the pain stopped. I can do anything I could before. If you are still in pain, seek help at your state's medical school and inquire about what they have to offer. They get it far faster, make changes in the procedure - it is in their options for people who need help.