Health Organization for Pudendal Education

Hi John,
Thank You very much for your reply.It is interesting to see that he says that he makes an incison in the Sacrotuberous ligament,but doesn't divide or sever it.Could you kindly confirm that with him?Secondly,he does seem to cut the Sacrospinous ligament and lastly he isn't the transposing the nerve at the ischial spine in fatty tissue like Robert.

That's gives me an indication that he isn't following the Nantes technique blindly whch is a good sign in my opinion.Did he make one incision or two incisions in your case?Is he able to access both the anterior as well as the posterior end of the Alcock's Canal.

As far as the success rate is concerned,what is his rationality that why he cannot gaurantee a satisfactory outcome or a cure.
Were your nerves damaged to that extent that they cannot regenerate?

Your input would be highly appreciated.

Kind Regards,
Ali

johnd.h wrote:Firstly, thankyou for the warm wishes, I do appreciate them.

A's Mommy, I am not aware that Prof. C. had any training from the Nantes team, but when I see him in July I will ask him. I will also ask why he doesn't do both sides at the same time, but I do remember his PA saying that he prefers not to as it is very delicate work, requiring enormous concentration, and just one side would take at least two hours. I guess I can understand that, and frankly I would rather he was at his best when operating on me.

I think one side at a time would be a good idea. I would like to learn what you all think about this. Can we ask the neuro surgeon to do one side at a time ?
Many thanks, M

Mulan wrote:I think one side at a time would be a good idea. I would like to learn what you all think about this. Can we ask the neuro surgeon to do one side at a time ?

Great question, Mulan! I'm also interested in hearing from others who have had the surgery, one side at a time. How was your recovery? Were you fully healed before the other side was done? To the best of my knowledge Mulan, Dr. Hibner is the only US surgeon who does one side at a time. I stand to be corrected ...
Personally, I can't imagine having this surgery twice. I don't regret for one moment having both sides done at the same time. My bilateral surgery took 4 hours, but doesn't Dr. Hibner take about that long (3.5 hours) to do one side? I wouldn't want to go through 6+months of healing, only to start all over again with another surgery and prolonged recovery time. But, that's just me!
Warm regards,
Karyn

Karyn wrote:

Mulan wrote:I think one side at a time would be a good idea. I would like to learn what you all think about this. Can we ask the neuro surgeon to do one side at a time ?

Great question, Mulan! I'm also interested in hearing from others who have had the surgery, one side at a time. How was your recovery? Were you fully healed before the other side was done? To the best of my knowledge Mulan, Dr. Hibner is the only US surgeon who does one side at a time. I stand to be corrected ...
Personally, I can't imagine having this surgery twice. I don't regret for one moment having both sides done at the same time. My bilateral surgery took 4 hours, but doesn't Dr. Hibner take about that long (3.5 hours) to do one side? I wouldn't want to go through 6+months of healing, only to start all over again with another surgery and prolonged recovery time. But, that's just me!
Warm regards,
Karyn

I meant two surgeries between 1 week or 2 weeks apart like John had, not 6+ months and neurosurgeons who would like to do two-sided surgery at once.

Mulan wrote:I meant two surgeries between 1 week or 2 weeks apart like John had, not 6+ months and neurosurgeons who would like to do two-sided surgery at once.

John is the first person I've ever heard of having surgery 2 weeks apart. Is this common?

I will be having my right side done at the end of June, thus making it approximately 8 months in between surgeries.

As my dear husband so lovingly described it, he said "well, just think of it as having your second child. You already know what to expect." Thanks, babe.

AM

I think that is simply the way Professor Carlstedt does it. . . . Romaine answered this in a previous post. . . . . .

' Professor Carlstedt did not specify why he did not want to do the two together, he just stated that both couldnt be done together. My experience though showed that it was the better option as it was easier having one side to turn on, etc .
romaine'

I think her surgeries were more than 2 weeks apart but not much more. Of course in the States you guy's often have to travel enormous distances for surgery so doing 2 together is maybe seen as the best plan ? ?

I have done some reading on Professor C and he is such a clever chap. He and a team in Britain are working on 'bridging' the gap in cases of severed nerves with a substance harvested from the top of the nasal cavity (if I remember correctly). The 'bridge' will hopefully allow the nerve to grow again across the gap and be re connected.
So glad it's all working out well so far for you John. Here's to a happy and pain free retirement .
Helen

Best wishes on your recovery, John!

For those of you who don't take much pain medication after surgery I have to say I have no idea how you do it. I toughed it out a lot after surgery but in the late afternoon I took oxycodone for 9 months post-op so I could get through the evening. If I had it to do over I think I would take even more medication because I spent far too much time in tears. I hope all of you post-op patients that are currently posting aren't spending too much time in tears!

I have had both sides "traced" by Professor Carlstedt. The right side first in 2007. I was told I was only the 4th person in the country so I think it was very early days for him. He said to me that he only did one side at a time cos sitting after is quite a problem and the surgery took approx 2 hours for one side. He told me that he cut a channel in a ligament in my back to allow the nerve to "unkink" and eventually run freely in the channel. Is this what you had done, albeit you are later down the line and Prof C has much more experience now? I have to say that my recovery was very good and I went on to have the left side done in 2009. I have roughly 8" scars on both my buttocks and it was the transgluteal approach. The left side was getting better and for about 3 months life was not bad but then the pain started coming back and has got progressively worse. The right is not perfect but not nearly as bad as the left.
I was told Prof C had retired but this is obviously not the case, so maybe I will be referred back to him when I see Dr Baranowski in June.
Wishing you all well.

Hi John, so pleased to hear about your recovery. I too had two PNe decompressions done by Prof Carlstedt, the first being in his relative early days of operating. He is a wonderful man. I did not get the shocks you experienced, however that may be a good thing as two years down the line the left PN is starting to give me a lot of pain again. Prof C did in fact tell me that he was retiring and that there was no-one to take over from him - he must have changed his mind - bless him.
Carry on recovering, take care.

Jane