I found this site very useful, including the resource area and all of the post's, in my search for a Dr. Eventually, my wife and I decided to have Dr. Nath in Houston perform a nerve transfer in my left forearm.
One interesting point we discovered in our discussions with various Dr's along the way was that there does not seem to be a forum where the Dr's can get together to discuss their ideas, successes, failures, etc. In fact, one of the Dr's mentioned that with only a small number of BPI surgeons around the world, there is not a committe or board established, just for this subject. It seems to me, all the more reason for them to get together, even if only in an informal on-line message board.
Has anyone tried to move the Medical Resource Directory on this site, or any other, to the next level by creating a place for the Dr's to come to and discuss this subject?
Just a thought.
Dr. information etc.
Re: Dr. information etc.
There is a society called the Narakas Society in which brachial plexus specialists from around the world gather and discuss findings, new procedures, etc. They just had their meeting last year and for the first time a small group of lay people were invited in to discuss issues.
Doctors share through publishing. I personally can't see them coming to a forum like this and sharing between themselves - it opens them up way too much and they are way too competitive anyway.
AND surprise - MANY of them don't like the concept of support groups and people gathering information from websites. I don't know if anyone attending the Narakas meeting will share but there are some pretty bigwig doctors in the U.S. that think that these support groups should be eliminated - that it's nothing more than trouble for them. They don't want to educate the parents too much - God forbid if they know too much. And that meeting and the information given at that meeting is what fueled Dr. Nath into putting together his annual BPI Conference for parents (next one is in two weeks) - he speaks of it as BPI College for parents and therapists. He recognizes that the success of any surgery and the child's recovery is so dependent on educating parents and therapists.
-francine
Doctors share through publishing. I personally can't see them coming to a forum like this and sharing between themselves - it opens them up way too much and they are way too competitive anyway.
AND surprise - MANY of them don't like the concept of support groups and people gathering information from websites. I don't know if anyone attending the Narakas meeting will share but there are some pretty bigwig doctors in the U.S. that think that these support groups should be eliminated - that it's nothing more than trouble for them. They don't want to educate the parents too much - God forbid if they know too much. And that meeting and the information given at that meeting is what fueled Dr. Nath into putting together his annual BPI Conference for parents (next one is in two weeks) - he speaks of it as BPI College for parents and therapists. He recognizes that the success of any surgery and the child's recovery is so dependent on educating parents and therapists.
-francine
Re: Dr. information etc.
Hi Brian
The BPI surgeons, therapists etc here in the U.K. have been having conferences and study days about this injury for years. There was one at Stanmore Hospital (the biggest centre for BPI surgery in the U.K) two months ago and one of the U.K. group was a study subject there. There has been international meetings and symposia of BPI surgeons worldwide regularly too for years; I believe one of the biggest ones was in Turkey late last year as well as the one that was in Paris in January.
As far as I know, not many lay people are invited to these bigger conferences for one reason at least; the information they share between themselves uses case studies of people whose indentities they wish to protect. At the Paris symposium, there were well over 150 surgeons there across the 2 days. I believe the surgeons do talk to each other either by email or 'phone regularly, and I really can't see that they would even need a forum like this to share knowledge with the many worldwide conferences every year.
I was lucky enough to be invited to the Paris symposium, and I certainly didn't see or hear anything that would lead me to believe that there was anything competitive there between the surgeons...quite the oposite in fact. All of them were very willing to share their findings and ask opinions of the others. I know for certain that some BPI surgeons are very wary of the internet and websites about BPI with good reasons; one of them being there is so much misleading and inaccurate material out there.
The BPI surgeons, therapists etc here in the U.K. have been having conferences and study days about this injury for years. There was one at Stanmore Hospital (the biggest centre for BPI surgery in the U.K) two months ago and one of the U.K. group was a study subject there. There has been international meetings and symposia of BPI surgeons worldwide regularly too for years; I believe one of the biggest ones was in Turkey late last year as well as the one that was in Paris in January.
As far as I know, not many lay people are invited to these bigger conferences for one reason at least; the information they share between themselves uses case studies of people whose indentities they wish to protect. At the Paris symposium, there were well over 150 surgeons there across the 2 days. I believe the surgeons do talk to each other either by email or 'phone regularly, and I really can't see that they would even need a forum like this to share knowledge with the many worldwide conferences every year.
I was lucky enough to be invited to the Paris symposium, and I certainly didn't see or hear anything that would lead me to believe that there was anything competitive there between the surgeons...quite the oposite in fact. All of them were very willing to share their findings and ask opinions of the others. I know for certain that some BPI surgeons are very wary of the internet and websites about BPI with good reasons; one of them being there is so much misleading and inaccurate material out there.
Re: Dr. information etc.
If anyone has any areas of caution regarding particular doctors, please respond separately to my personal email, which you can get to by clicking on my name. Within one month, we need to have nailed down an appointment with someone. Thank you!
Ellen B in Atlanta
Ellen B in Atlanta
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Karen Hillyer
- Posts: 562
- Joined: Fri Sep 06, 2002 1:36 pm
Re: Dr. information etc.
As an attendee of the International Symposium in Paris last January, I can confirm everything that Lizzy has said. Much of the information which was presented at the symposium was well over the head of any lay person in attendance and it was quite obvious that all of the surgeons were well aware of what each of the others was currently working on.
What was clear to everyone attending, is that these surgeons don't rest on their laurels, they are constantly striving to achieve greater results for patients with both obpi and tbpi, however, they were the first to admit that they don't have all the answers to fixing brachial plexus injuries.
What was clear to everyone attending, is that these surgeons don't rest on their laurels, they are constantly striving to achieve greater results for patients with both obpi and tbpi, however, they were the first to admit that they don't have all the answers to fixing brachial plexus injuries.
Re: Dr. information etc.
well guys maybe there's no competition between the european doctors but there certainly is competition between the american doctors and we've certainly discussed this to death before.....it's because we don't have socialized medicine here so they each fight for their piece. If all went so well at the conference and everyone was so nicey nicey then why did an important physician from the U.S. up and leave and why did many of the attendees return home shaken. Come on now. I really don't want to argue this point further - the poster's question was about doctors sharing and we've all written now that they do share. Let's just drop it - you guys can't argue anything about the US doctors because you don't live here and I can't argue about the specifics about what WAS shared at NARAKAS because not one person who attended has been willing to write about it. So let's now drop it and go on to the next topic.
Peace.
We're all working toward the same goal.
-francine
Peace.
We're all working toward the same goal.
-francine
Re: Dr. information etc.
Most of the time a little healthy competition is a good thing as long as it's to benefit the good. It keeps people honest and progress makes "medical history."
I think the meetings are a wonderful thing for all the BPI specialists after all, it is to benefit all BPI injuries all over the world and if the information shared rattled a few cages or many cages, then the gathering has done it's purpose. Stirred the imagination, opened eyes to new possibilties, put an end to dead end theories. Thank you Karen and Lizzy for being there representing us and sharing your experiences.
Patty
I think the meetings are a wonderful thing for all the BPI specialists after all, it is to benefit all BPI injuries all over the world and if the information shared rattled a few cages or many cages, then the gathering has done it's purpose. Stirred the imagination, opened eyes to new possibilties, put an end to dead end theories. Thank you Karen and Lizzy for being there representing us and sharing your experiences.
Patty
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Dr. information etc.
It's one of the specialists who doesn't like support websites because of misleading info who actually checks our stuff on the tbpi uk site-so at least they are willing to open their eyes to progress in this area. And he was right too, one of the reasons we started the tbpi group was because the little info 'out there' about tbpi was mainly irrelevant or just plain wrong-the Yahoo medical page about tbpi said the best treatment for full avulsions was amputation! You can see why they get pissed off by stuff like that, so do I! And there was no mention anywhere on the web about the pain, the biggest issue for most of us. The pain page on our site is the most visited page (apart from the message boards) so we know we filled a gap there, and our 'anti internet' bpi specialist had to agree-these guys can be trained!
There's a training conference in bpi surgery happening in the States soon, (I lost the link, maybe it already happened) most of the 'big names' in bpi surgery have been invited to teach trainee surgeons how to do the surgery, so there is at least some sharing, and most of them do also share by publishing their work. These conferences between international bpi surgeons have been going for years so at least some of these guys seem able to put their egos aside for progress and talk with the others. The one who walked out in Paris isn't going to learn too much! It does annoy me how secretive they seem to like to be but sometimes I think it's just that the majority of them don't put stuff up on the internet, the data is all available in written form, you just have to search at a library, it involves getting up outta yer chair tho so we don't get to read that much of it....or at least I don't!
I'd love to attend one of these symposia, maybe one day, glad you were there to represent us Liz and Kazza :0)
There's a training conference in bpi surgery happening in the States soon, (I lost the link, maybe it already happened) most of the 'big names' in bpi surgery have been invited to teach trainee surgeons how to do the surgery, so there is at least some sharing, and most of them do also share by publishing their work. These conferences between international bpi surgeons have been going for years so at least some of these guys seem able to put their egos aside for progress and talk with the others. The one who walked out in Paris isn't going to learn too much! It does annoy me how secretive they seem to like to be but sometimes I think it's just that the majority of them don't put stuff up on the internet, the data is all available in written form, you just have to search at a library, it involves getting up outta yer chair tho so we don't get to read that much of it....or at least I don't!
I'd love to attend one of these symposia, maybe one day, glad you were there to represent us Liz and Kazza :0)
Re: Dr. information etc.
I've been away on vacation the last two weeks and am gradually catching up on reading the message boards. It makes for some pretty interesting reading.
I too was fortunate enough to be invited to participate in the Paris meeting last year. It was quite unusual for lay people like ourselves to be invited to such a professional meeting and for us to hear first hand what research drives the specialists who care for us.
Karen and Lizzy have done a great job of describing what happened there, I don't really have anything else to add.
Brian to ruminate a bit more on your original question, I don't think such a message board for doctors could happen on the internet for a couple of big reasons. Number one is that it would be a public forum and they would not feel the freedom to discuss patients openly. In the U.S. there is doctor/patient confidentiality which is protected information. And how could they discuss failures openly with people who are directly affected reading the information? It would need to be a private forum.
Nancy
I too was fortunate enough to be invited to participate in the Paris meeting last year. It was quite unusual for lay people like ourselves to be invited to such a professional meeting and for us to hear first hand what research drives the specialists who care for us.
Karen and Lizzy have done a great job of describing what happened there, I don't really have anything else to add.
Brian to ruminate a bit more on your original question, I don't think such a message board for doctors could happen on the internet for a couple of big reasons. Number one is that it would be a public forum and they would not feel the freedom to discuss patients openly. In the U.S. there is doctor/patient confidentiality which is protected information. And how could they discuss failures openly with people who are directly affected reading the information? It would need to be a private forum.
Nancy
Re: Dr. information etc.
Ditto here Nancy; doctor/patient confidentiality is a big thing here in the UK, as it should be (and probably is) everywhere else.