原文在www.debra.org的论坛上。后来改版后找不到了。周迎春 于2006年12月初次翻译,2012/11/11最后更新。

标题: 手矫正手术
发贴人: 特里凡
日期: 2002-09-12
　

希望有人能分享一下手矫正手术的情况。除了解除蹼状粘连外，最好还有恢复严重的关节挛缩（伸不直）的信息。我同时也想知道是否有人在特拉华州的杜朋儿童医院由吉姆医生做过手术。我有一个15岁的儿子患RDEB。谢谢。

I would like to hear from someone who has been through hand surgery, not only for the removal of webbing, but also for the release of very serious flexion contractures. I am also interested in knowing in particular if anyone had it done by DR. Kim at duPont Hospital for Children in Delaware. I have a 15 year old son with RDEB. Thank you.

标题: 回复: 手矫正手术
发贴人: 卡拉
日期: 2002-09-12
　

我也在找手部手术的信息，如果你找到什么请联系我：happytweety@ev1.net

i was also looking into hand surgery, let me know if you find any news you can reach me at happytweety@ev1.net

hugs kara

标题: 回复: 手矫正手术
发贴人: 特里
日期: 2002-09-13
　

我 儿子17岁，RDEB。他两只手都做过手术，分两次做的。都是由加利福尼亚州奥克兰一个水平很高的医生做的。我们现在住在爱荷华州。这个医生做过很多EB 患者的手术。我没有他的名字和电话。找一下明天给你。应该说手术和恢复的时间都很长，但我儿子都挺过来了。尽管第二次手术的时候他的一个指头尖没了，现在 他的手更灵活了。

I have a 17 year old son with RDEB. He has had surgery done on both of his hands, twice. Both times it was done ba a great hand surgeon in Okland Claifornia. We now live in Iowa. The doctor has done a lot of surgey on those with EB. I do not have his name or number with me. I can look for it and update tomorrow. I can say it is a long process for the surgery and recovery but both times my son had it done, he was able to use his hands better. All thogh the last time he lost the tip of one of his fingers.

标题: 回复: 手矫正手术
发贴人: 西尔维亚 ebmom@earthlink.net
日期: 2002-09-13
　

嘿， 特里凡，我儿子尼古拉斯（到11月就6岁了）做过3次手矫正手术。最近的一次是8月份刚做的，这一次效果最好。斯坦福的拉德医生做的手术。他们解除了挛 缩，拉直每根手指并且分开包扎，用一个模子固定了两个星期。然后他们把模子拿掉，后来的护理我自己做。我按照ebinfoworld.com网站上的说明 包扎每根手指，另外每天把每根手指掰直10秒钟。这个办法对他的右手非常有效。右手是4年前做的手术，现在还能伸直。我手上刚好有一篇患者写的关于矫正手 术的短文，很快就会上传到ebinfoworld.com网上！希望对你有帮助。拥抱，西尔维亚。

Hi Terival, my son Nicholas (6 in November) has had 3 hand surgeries. The last one this past August, and it has been the best yet. It was done by Dr. Ladd @ Stanford. They released the syndactily, and wrapped each finger individually, straight, and put it in a cast for 2 weeks. They then took out the cast and I've been taking care of it since. I wrap each finger as it is described on the ebinfoworld.com website. I also hold the fingers straight every day for 10 seconds for each finger. That worked wonders for the surgery on his right hand, which was done 4 years ago, his fingers are still straight. I have a patient writing an essay about her hand surgery right now, it should be up on the ebinfoworld.com website very soon! Hope this helps, Hugs, Silvia

标题: 回复: 手矫正手术
发贴人: 特里凡
日期: 2002-9-14
　

感谢所有的回复。你们能跟我分享一下手术刚完成后护理的细节和挛缩解除后的夹板技术吗？术后多久手真正可以用了？再次感谢！

Thanks to all of you for your responses. Do you think you could let me know the details for the immediate post-operative care and the splinting techniques used when contractures were released. How long did it take before the hand was really functional. Thanks again!

标题: 回复: 手矫正手术
发贴人: RDEB格莱美
日期: 2002-09-22
　

嘿 特里凡，我孙女詹尼弗·Deprizio出生在特拉华州的威尔明顿。她患RDEB，现在22岁。我特别推荐阿弗瑞德.爱.杜朋研究所和吉姆医生。詹尼弗出生时就是杜朋研究所做的诊断，当时我们等了他们3天。我跟吉姆医生很熟，他是最好的医生。

詹尼弗两只手都动过手术，现在情况很好。我们现在住在佛罗里达州，做手术的是杉德思医院的保罗·戴尔医生，他也很专业。记住在手术后还需要进行理疗和锻炼，ABC包扎法可以预防并指复发。你可以在ebinfoworld.com找到示意图和指南。很不错。

我正在写一篇关于詹尼弗的手术的文章，其中包括手术前后的照片。她会把文章放到ebinfoworld网站上。你自己留心去看。

去做手术吧，我强烈建议做手术。但记住术后的锻炼和ABC包扎法。这很重要。我知道有些人不相信这个，但詹尼弗左手用这个方法已经3年，右手从2002年5月开始也在用。我相信它...

想联系我请发邮件： rdebgrammy@wmconnect.com

祝你好运，并告诉我结果...雪莉（格莱美·雪莉）

Hi terival, My grandaughter, Jennifer Deprizio, was born in Wilmington, Delaware. She has RDEB and is now 22 yrs. old. I highly recommend the A.I. duPont Institute and Dr. Kim. It was A.I. duPont Institute who diagnosed Jennifer when she was born - it took three days until they came in and saw what it was. I am familiar with Dr. Kim and he is the best.

Jennifer has had hand surgery on each hand and they look great. We live in Florida now and a Dr. Paul Dell at Shands Hospital did the surgery. He is also great. Just remember it has to do with the post operative therapy and exercises, and the ABC wrapping that will keep them from webbing and mitting again. You will find diagrams and instructions on: ebinfoworld.com. It is wonderful.

I am in the process of writing an article about Jenn's hand surgery and have sent pictures of the before and after to go along with the article. She will be putting it on the ebinfoworld site. Watch for it.

Go for it, I strongly advise this, but be sure to take him to therapy and use the ABC wrapping on the fingers and hand. IT IS IMPORTANT. I know some people do not believe this, but it has worked for over three years on Jenn's left hand and now since May, 2002 on her right hand. I swear by it...

If you need to contact me, please do at: rdebgrammy@wmconnect.com

Good luck and let me know how it turns out... Shirley (grammy Shirley)

标题: 回复: 手矫正手术
发贴人: 西尔维亚 ebmom@earthlink.net
日期: 20020-09-22

嗨， 特里凡，我同意雪莉对ABC包扎法的意见。确实有效。尼克的第一次矫正手术是4年前做的，现在手的样子跟刚做完手术时差不多。我也对他每个手指做矫直 练习，我们每天矫直手指并数到10。这是一个本地的理疗师教我的。我曾经怀疑这种练习的效果，停过一段时间，几个星期的时间里尼克的左手开始挛缩了，因此 我知道这种方法确实有效。你问手术后多长时间手可以运用？这取决于愈合的速度。不同的病人不一样。医生告诉我6个星期，尼克刚好是这个时间。不是100% 但非常准。有些指头比其它的先好。希望这些信息对你有用！务必去ebinfoworld.com上下载手指包扎技术和ABC包扎法。拥抱，西尔维亚。

Hey Terival, I echo Shirley's comments about the ABC wrapping. It really works. Nicky's first hand surgery was 4 years ago and that hand is still basically in the same shape as it was after surgery. I also have him do straightening exercises for each finger-we straighten the finger and count to 10 every single day. That one was taught to me by a local Physical Therapist, and I know it works because when I stopped doing it, thinking it wasn't working, Nicky's left hand began to curl up in a matter of weeks. You asked how long until the hand was functional after surgery? That depends on how fast it heals. Every patient is different. 6 weeks is what the surgeon told me and it was pretty accurate for Nicky. Not 100% but pretty good. Some fingers healed faster than others. Hope this helps! Make sure to check out the hand wrapping techniques and ABC hand wrapping pages at ebinfoworld.com Hugs, Silvia

标题: 回复: 手矫正手术
发贴人: 特里凡
日期: 2002-09-22

再次感谢所有的回复！

我 还有些问题。詹尼弗手术后多久开始理疗，此前怎么护理？跟你说，我们以前曾经做过一只手的手术（到11月就6个月了），我儿子不是很满意。他现在手指要是 做以前那样的动作会引起严重的撕裂，他的手指也伸不直了。从手术开始到完全愈合他的手一直放在夹板里（大约6周），他的手最后愈合成了夹板的形状。夹板是 一个手自然放松的形状！我找理疗师争论这种做法，但是她总有办法说服我。在得到足够的证据之前我倾向于不再做手术。

我明白自己应该在上次手术前多做一些调查，但我当时非常信任这个医生。他在去年的费城EB大会上做了手矫正手术的讲演。他也非常愿意听我讲病史，也愿意联系其他做过手术的人。不幸的是我事先还是了解的不够。

总之，非常感谢你们的信息。

我记得在1999年加利福尼亚的EB大会上见过你们。爱相随，特里。

Thanks again for your responses!

Here I go with more questions. How long after surgery did Jenn start therapy, and how was her hand cared for up until that point? You see, we have already gone ahead with the surgery on one hand (it will be six monts in November), and my son is so not satisfied. It seems he can't do what he did before without causing serious breakdown, and he is not able to straighten his fingers. He was put in a splint from the day of surgery until the day he healed (which was about 6 weeks), and the shape of that splint is how his hand healed. It was splinted in a relaxed position! I argued this point with the therapist who made the splint, but she convinced me otherwise. If I don't have enough facts to prove something I tend to back down.

I realize I should have done this research before the surgery, but I was pretty confident in the surgeon. He did the presentation on hand surgery at the EB Conference in Philadelphia last year. He is also very willing to listen to my input and to make contact with someone who has done this more frequently. Unfortunately, I should have known more before this all happened.

Anyway, I really would appreciate your input.

I think I remember you guys from the EB Conference in California back in 1999. With Love, Teri

标题: 回复: 手矫正手术
发贴人: 西尔维亚 ebmom@earthlink.net
日期: 2002-09-23

嗨，特里。我们用夹板只有一个晚上。在愈合以前我把所有手指都包成直的，愈合以后包扎的少一点，但仍然包扎。我建议第一天就开始做理疗。包扎非常关键。没有绷带尼克的手就完全不能用。手指太脆弱，太容易破。有绷带的时候他可以用手做很多事情，很少破。

因此，我建议做理疗和包扎。没有这两种措施尼克就没有有手指可以用。希望对你有用。西尔维亚。

Hey Teri, I've only used the splint overnight. I did wrap the fingers straight until they healed, and as they healed I wrapped them a lot less, but still wrapped them. I encouraged physical therapy from day one. Wrapping is key here. Nicky would not be able to use his fingers at all without bandages around them. They would be too fragile and they would brake down too easily. With the bandages he can do so much, and rarely the fingers brakedown.

So, my suggestion is physical therapy and wrapping. It's the only two reasons why Nicky has any fingers and use of them at all. Hope this helps. Silvia

标题: 回复: 手矫正手术
发贴人: 李娜
日期: 2002-10-13
　

亲爱的西尔维亚，我想确认一个尼克上次手术的问题。你是否说过他们在去除粘连的时候没有做任何植皮。我很关心这个，因为我准备在发展成挛缩之前除掉托尼手上的粘连。如能赐教将非常感谢。李娜。

Dear Silvia, I wanted to clearify when you had Nicky's hand done the last time, did you say they did'nt use any type of replacement skin where they had removed the webbing?What did they do?I'm very curious because i'm trying to get them to remove some of the webbing on Tony's hands before he get's any contractures of his fingers.Any info would be greatly appreciated Liane

标题: 回复: 手矫正手术
发贴人: 西尔维亚 ebmom@earthlink.net
日期: 2002-10-13
　

嘿， 李娜。是的，他们确实完全没有做植皮。他们去掉了所有妨碍手指伸直的皮肤。托尼没有并指，我一直在手指缝里垫纱布。因此手术后手指上基本没有皮，6-8周 以后就自己愈合了。在完全愈合前保持手指伸直并用纱布互相分开非常重要。其次包扎并做理疗。用包扎来防止受伤、并指和挛缩的重要性怎么强调都不过分。

希望有用... 西尔维亚

Hi Liane, no, they did not use any skin grafting at all. They removed all the skin that was trapping the fingers-he did not have any webbing at all because I have been putting gauze in between the fingers. So the fingers were basically raw and they healed within 6-8 weeks on their own. It's important to keep the fingers straight and separated with bandages until the hand is completely healed. Then use the bandaging and do the excercises.I cannot stress how important the bandaging is to prevent future damage, webbing and contractures...

Hope this helps... Silvia

标题: 回复: 手矫正手术
发贴人: rdebgrammy@wmconnect.com
日期: 2002-10-24
　

嘿， 特里，对不起，这么长时间才回复。詹尼弗术后立即开始理疗。在她左手手术的时候我们还不知道ABC包扎法，所以她开始的时候用夹板。夹板是用 “Odoform”材料做的，像橡皮泥一样软，理疗师按照手的样子捏好后材料变硬了，但还是软的。这种材料很合适。手愈合以后我们开始用ABC包扎法，晚 上用夹板。

两年后，即2002年6月我们做了右手手术。你如果给我电邮地址我可以发一些照片，你可以自己比较。我的邮箱是 rdebgrammy@wmconnect.com。

右手我们用ABC法包扎，刚开始的时候詹尼弗用夹板。我们后来两手都包扎，不用夹板，现在还是这样。左手手术到现在已经3年了，一切良好。我们仍通过包扎来保持手指互相分开。

她的手和手指跟我们的看起来不一样。考虑到他们的手要重新长肉，能像现在这样也就不错了。尽管如此，詹尼弗的手非常灵活。她可以用计算机的键盘，在大学里学网页设计。你能把你儿子手的照片发给我吗？我想看一下。

是 的，你在手术前应该了解的更多一些。你按照当时自己知道的最好的方法做了。你应该为自己感到骄傲，这是一个艰难的决定。你儿子多大了，叫什么?我可能有点 冒失，大概是吧，从1979年詹尼弗出生开始我的生活中就一直有RDEB。我们已经经历了很多，现在她长大了可以表达对绷带等东西的感觉了。我由衷的高 兴。

请告诉我你儿子的情况，也许我能帮上忙。谁知道呢？天佑雪莉（格莱美）

Hi Teri, sorry it has taken so long to get back. Jennifer went immediately into therapy. We didn't know about the ABC wrap when the left hand was done, so she did have splints right from the start. The splints were made of Odoform - it is soft like silly putty and the therapist fits it to the hand, then it gets hard, but still soft. It is not abusive. After the hand healed we started using the ABC wrapping and the splint at night.

As far as the right hand, we had that done about two years later in June 2002.. If I had your email address I would send you pictures so you can compare. Mine is rdebgrammy@wmconnect.com - please communicate.

The right hand, we use the ABC wrap and Jennifer used splints at first. We continue using the wrap on both hands and no splints at this time. It has been three years since the left hand surgery and all is well. We still wrap to keep the digits separated.

The hand and fingers will not look as our do. Remember they have to reconstruct the hand and there is only so much they can. However, Jennifer is able to use her hands very well. To compare I would say "not as good as I can, but it is so much better than the mitt. She uses the keyboard on the computer and is taking Web Design at college. Can you forward me pictures of your sons hand. I would like to take a look at them.

Yes, you are correct, you should have known more before the surgery, but you didn't. So you did the best you could with what you had at the time. Be proud of yourself, It is a tough decision. How old is your son and what is his name? If I seem to be a bit forward, I guess I am, I have been living with this RDEB since Jenn was born in 1979. We have been through a lot, and now that she is older and able to express her feelings about the bandages, etc.I am grateful.

Please let me hear from you and your son, maybe I can help. Who knows?? God Bless Shirley (grammy)