About PN forums, please remind everyone......

[GregT]

I don't get onto this website very often......maybe I'll be here more so after tipna ends (soon), but I'd like to make sure that this forum/website does one thing. I realize that this may already be done here, but since I'm not here often, I can't say for sure.

Make sure that people (which includes many lurkers who never post) know that the composition of the people on your forum are the ones who are either still in pain after surgery or people who are thinking about what to do to get better, whether it's surgery, PT, injections, etc. I heard (for the umpteenth time now) from a man just a few days ago that he used to keep an eye on tipna (other PN website) but he saw so many people not getting better, in terrible pain, etc., that it just turned him off to the whole idea of surgery. I explained to him that not everyone who has PN gets onto a website. Not everyone talks about their successful recovery from surgery for PN. Many people haven't even heard of PN websites.

People need to understand full well that there are people who get better from PN, and mostly it's because they have surgery for PN. For everyone that someone knows who gets better from PN, we should do whatever is necessary to tell their story and, better yet, get them to come to the website and "do their time" towards lifting up others with their positive stories. People who haven't gotten a successful surgery outcome will most likely gravitate to the forum(s), but those who get better, for the most part, go back to their lives and possibly are never heard from.

Again, I don't want to insinuate that this is not already being done here. I only wanted to emphasize the importance of this topic.

Greg

[HerMajesty]

Thanks Greg, good points.
I think there is one big weakness in the field that this post indirectly points out - where is the objective statistical data being collected by the surgeons themselves?
My pudendal symptoms turned out to be due to tarlov cyst disease rather than direct pathology of the pudendal nerve; so I did not use one of the surgeons listed on this site. As part of my surgeon's routine follow up care I was given a discharge packet with symptom / quality of life surveys to be filled in and mailed back every 3 months. The surgeon crunches the numbers and posts the collected statistical data. Are there any PN surgeons of whom you are aware, who are doing this?

[merrie]

Greg -

For these people who are getting better from PNE surgery, who are they having surgery with?

I am one of those patients who are afraid of surgery because of all the negative outcomes I read/hear about.

My doctor also believes that the surgical risks are far too great to risk the surgery.

Thanks-
Merrie

[helenlegs 11]

Hi Merrie,
I must admit that I have heard the same thing, although not from my (former) treating consultant Dr Greenslade in Bristol (UK)
The latest chap with this opinion does do carpel tunnel (wrist) decompression surgeries, so it's not that he is against nerve decompression surgeries, just pelvic ones I think.
This does not make any sense to me. He did tell me that the reasoning behind his reticence was scar tissue formation.. . . surely wherever a person has surgery there will be scar tissue? Maybe there is more tissue and muscle to cut through in this area (especially mine ) but I really do need an better medical explanation than this reason to deny people with painful and debilitating pelvic neuropathies a surgical option.
I would also hope that a good post surgery physical therapy programme could help address the problem of scar tissue and any nerve re-entrapment.
It would be wonderful if surgeons did present their surgical results HM, agreed. We rely on word of mouth which really is not good enough, but it is all we have.
Helen

[janetm2]

I guess I have to admit I have not provided an update on my surgery back to Dr Marvel but think of it now and then when I see things like this. He does not send any requests so I would say he only knows about those patients that continue with him after surgery? How well and what he collects I do not know but wanted to let you know my side. I am I year 7 months post op and doing better than before surgery. I have some SIJD and pelvic alignment and rotation issues currently (had none of this prior to surgery) but am able to work and sit an hour or more on a cushion before needing to get up. I felt I was going down hill and surgery was my only option so it did save me from worse times. It stillis hard to quantify how much better or improvement but surgery was the right option for me. Take care and may we have better days in 2013.
Janet

[GregT]

I've been more involved with people who've had surgery in Houston, so more of the cures I know about come from there. So, this is not to say that this is where "the surgery cures" are coming from, but just more of the ones that I know of. I still know of people who don't have successful surgeries in Houston too, but again, they're a bit more vocal and active on the websites than are those who got cured.

There is a lady named Amy who contacted me over a year ago (maybe 1.5 years) about the Houston team. I basically counseled and encouraged her, told her that I knew of some successes in Houston, that I trusted the team, that I wasn't overly worried about the ligament issue, etc. She had a completely successful surgery but never made a post about it. She wasn't so great on the computer. I either posted about her recovery or else I taught her how to get onto tipna and post about it. I haven't spoken to her in about 5 months now, though I probably will call her one more time to get a final take on her outcome.

About the doctors keeping up with their success rates, I think that most of them do this at the beginning of their PN programs. Whether they base their rates on 30 or 100 patients, they end up getting some sort of data or trend, do a paper on it, present it at some annual PN meeting and then basically don't ever do it again. If any other PN doctor does it differently from this, I apologize. Oh, I do believe that Professor Robert (Nantes, France) did his paper in 1997 and based it on 170 patients. I don't know of anyone who's used a patient population that was greater, though there certainly are doctors who've done hundreds of PN surgeries who could have done this. I think that they just don't want to go through the cost of keeping this up, though I don't really think that the cost would be all that great.

At any rate, I just maintain that in order to give the websites some objectivity we have to talk about the successes some so that people do know that they do happen.

Greg

[nyt]

I don't know of any of the PN doctors who send out surveys to track the longterm success or failures of their surgeries. If anyone is doing such a study I bet it would be Dr. Dellon. I often wished the doctors would send out follow-up surveys to track such results especially as far out as 5 years or so.

I know one individual who had surgery in Houston and did very well and then started with dorsal nerve symptoms. This individual saw Dr. Hibner, had botox to the pelvic floor and sclerization of the dorsal vein and has been totally pain free. This individual does not post on the website. I just think it is human nature to continue on the forum if one is still searching to get better and to move on with life if you have satisfactory improvement and no longer post.

[HerMajesty]

We have to do our part in being welcoming to people who recovered too.
I got interstitial cystitis before there was internet; and improved tremendously, not only in quality of life but in objective measurements of bladder function, through self care alone. I was very excited when I first realized there was an IC forum on the internet! The 1st time I tried posting there, solely to help and encourage others, was around 9 or 10 years ago, pre-PN. I was basically chased off by the hostility of many people on the board. I posted again for awhile in 2009-2010 when I went into PT and found out the underlying cause of the IC had been pelvic injury (in the 1980's I had been told it was probably an autoimmune disorder). The atmosphere was a little better but not something I wanted to stay involved with as a "beacon of hope" for others.
I like this community; and if after surgical recovery I come to see myself as a success I will at the very least come back and post under "success stories" to memorialize it for people coming here searching. But I do think we have to be careful to welcome people who are excited about their success and ask them to post their full success story in the correct spot. There can be a tendency to say, "that's nice for you, but you think you have all the answers and what your talking about wouldn't help me" - which is correct, we don't all have the same pathology. But their experience can help SOMEBODY and we should be sure to encourage and not discourage such people to post in "success stories". It must be awfully depressing for a new person to look into that section and find few cures.

[Violet M]

After my surgery/treatment, 2 surgeons followed my progress through questionnaires.

Prof. Robert, the Houston team, Bautrant, Beco, Shafik, Maullion, Possover, etc. have all kept records and published their results. Once studies have been published and the efficacy of a particular surgery has been established I think physicians tend to move on to other areas of research and publication, such as Hibner's article on redo surgery. Even in commonly performed surgeries I think this is true. My gynecologist told me that even with surgeries as common as hysterectomies you cannot say from the literature which surgical approach is the best for a particular patient.

So, Greg, I think you have made an important point and what we need to remind patients is that from the published literature PNE surgery has been shown to be at least partially successful for the majority of patients. We can't just go by what we read on the forums, helpful as that information can be, it is purely anecdotal.

Violet

[flyer28]

I think these samples are still too low numbers, even Shafik 170 patients is not so much to predict individual outcome...
Precise diagnosis is the key...Nothing is guaranteed.
By the way, I have heard that prof. Aszmann is also collecting the questionnaires from all this patients who have undergone dorsal nerve decompression.