help
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admin
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help
Help! My 14 year old daughter totally avulsed her right brachial plexus and subclavian artery. She is 16 days after her accident. We have already been turned down by several doctors and univerities. We were given a very rare chance of recovery. We have been waiting for a reply from the mayo clinic in Rochester and some place in St.Louis, who might possibly give us hope of limited movement. She has absolutely no feeling or movement in her right arm with constant pain. It is so devastating to watch her struggle with this. She is so lucky to still be alive, but we would like to have some hope of recovery for her arm. Any advice or info would be helpful. Thank you
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cbe411
- Posts: 1393
- Joined: Sun Jun 01, 2003 8:27 pm
- Injury Description, Date, extent, surgical intervention etc: MVA in 2001, nerve graph in 2002, Median Nerve Transfer in 2004 and an unsuccessful Gracillis Muscle Transfer in 2006. I am living life and loving it! Feel free to contact me :)
- Location: Grosse Pointe Woods, MI
- Contact:
Re: help
Rene, I am sorry to hear about this! The Mayo Clinic is a great place to start, i have heard great hings about them! Also check with Dr. Nath is Houston Texas, if you have not... You can reach his nurse Brenda at (866) 675-2200 and here is the link for his website http://www.drnathbrachialplexus.com/ Best of luck to you both and please keep us informed!
COurt xx
COurt xx
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Karen McClune
- Posts: 746
- Joined: Wed Sep 10, 2003 4:58 pm
Re: help
Rene,
So very sorry to read about your daughter. My son was in a motorcycle accident almost 5 years ago. He also was in so much pain until his surgery 3 months later. He still gets pain but nothing like what he had before the surgery.
I know how hard it is to watch them and not be able to do anything for them. Just want you to know there is a lot of support here for you and your family. Just ask away.
My very best to you all,
Hugs, Karen
So very sorry to read about your daughter. My son was in a motorcycle accident almost 5 years ago. He also was in so much pain until his surgery 3 months later. He still gets pain but nothing like what he had before the surgery.
I know how hard it is to watch them and not be able to do anything for them. Just want you to know there is a lot of support here for you and your family. Just ask away.
My very best to you all,
Hugs, Karen
Re: help
Rene,
I'm so glad you've contacted Mayo - they really are excellent. And it's very good you have acted so quickly to make appts, since the best window of opportunity is to have surgery between 3 to 6 months after the injury.
My son's injury happened when he was 15, so very near your daughter's age. All five of his nerves were avulsed & Mayo did cutting edge surgery (the 2nd op was filmed & shown on Discovery Health Channel for a special they did on Mayo - if you want to see a copy). He had a checkup last week & all his muscles are firing, he can move his arm in different ways & make a fist.
But best of all, his pain is almost completely gone now - and as a mother, you know the pain is the hardest part to observe.
I know Mayo is getting a lot of requests for consults these days, but even if there is some delay getting in to see them, you're still early in the process since the accident was so recent.
Take care & email me directly if you have questions or want a copy of the DVD.
Ellen
I'm so glad you've contacted Mayo - they really are excellent. And it's very good you have acted so quickly to make appts, since the best window of opportunity is to have surgery between 3 to 6 months after the injury.
My son's injury happened when he was 15, so very near your daughter's age. All five of his nerves were avulsed & Mayo did cutting edge surgery (the 2nd op was filmed & shown on Discovery Health Channel for a special they did on Mayo - if you want to see a copy). He had a checkup last week & all his muscles are firing, he can move his arm in different ways & make a fist.
But best of all, his pain is almost completely gone now - and as a mother, you know the pain is the hardest part to observe.
I know Mayo is getting a lot of requests for consults these days, but even if there is some delay getting in to see them, you're still early in the process since the accident was so recent.
Take care & email me directly if you have questions or want a copy of the DVD.
Ellen
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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: help
Hi Rene
Just to make a point-it isn't the fact of whether your chosen doctor is a paediatric or adult specialist, it's whether their MAIN interest is trauma injury (tbpi) rather than birth injury (obpi).
I would always advise people with a tbpi like your daughter to see a doctor whose main interest and experience is trauma injuries as the protocols are often very different, the severity is almost always very different and centres that specialise in tbpi usually pay as much attention to the pain and potential psychological effects as they do to the injury itself, and have the specialist staff to deal with that. Your daughters injury sounds quite severe so a trauma specialist team will definitely have a lot more experience with that kind of injury.
The Mayo clinic Ellen has mentioned do specialise in tbpi, as does Dr Kline in Louisiana, not sure if any others do (but I'd love to know if anyone knows of any more!) Surgery is often performed much sooner in tbpi, as soon as possible after the accident if avulsions are suspected. The 3 to 6 month rule is for obpi or less serious tbpi where avulsions are not suspected. Your daughters age is on her side, all available fingers are crossed here for you.
You have come to the right place, ask questions, check out everything the doctors tell you (some know a lot more than others) and try and stay sane.
Let us know how you go
Jen NZ
Just to make a point-it isn't the fact of whether your chosen doctor is a paediatric or adult specialist, it's whether their MAIN interest is trauma injury (tbpi) rather than birth injury (obpi).
I would always advise people with a tbpi like your daughter to see a doctor whose main interest and experience is trauma injuries as the protocols are often very different, the severity is almost always very different and centres that specialise in tbpi usually pay as much attention to the pain and potential psychological effects as they do to the injury itself, and have the specialist staff to deal with that. Your daughters injury sounds quite severe so a trauma specialist team will definitely have a lot more experience with that kind of injury.
The Mayo clinic Ellen has mentioned do specialise in tbpi, as does Dr Kline in Louisiana, not sure if any others do (but I'd love to know if anyone knows of any more!) Surgery is often performed much sooner in tbpi, as soon as possible after the accident if avulsions are suspected. The 3 to 6 month rule is for obpi or less serious tbpi where avulsions are not suspected. Your daughters age is on her side, all available fingers are crossed here for you.
You have come to the right place, ask questions, check out everything the doctors tell you (some know a lot more than others) and try and stay sane.
Let us know how you go
Jen NZ
Re: help
Just a note of clarification, re the timeframe for surgery being based on avulsions. None of the standard tests (EMG, MRI, etc) are 100% conclusive, so quite often it really isn't until a doctor goes in that the true extent of injury will be known.
The 3 - 6 month window is to allow time to see if nerves assumed to be avulsed are actually just stretched & might recover on their own.
A good doctor will evaluate the test results & office consultation, then outline different scenarios of surgical options based on what they think they'll find - but making it clear that they won't know everything until surgery itself.
Ellen
The 3 - 6 month window is to allow time to see if nerves assumed to be avulsed are actually just stretched & might recover on their own.
A good doctor will evaluate the test results & office consultation, then outline different scenarios of surgical options based on what they think they'll find - but making it clear that they won't know everything until surgery itself.
Ellen
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admin
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Re: help
Hi Rene, Im so sorry to hear about your daughters injury. I have a 12 year old son that was injured in an accident last year and has a RTBPI. He too, is very lucky to be alive. He also had many other injuries. He has had 1 surgery so far, 9 months ago. His Dr. is Dr. Shenaq at Texas Childrens Hospital. If I can be of any help to you just e mail me if youd like.