Supporting a loved one w/ BP

Treatments, Rehabilitation, and Recovery
admin
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Supporting a loved one w/ BP

Post by admin » Thu Oct 16, 2003 6:16 pm

Hi everyone .... I am so glad I came across this website. My boyfriend had a motorcycle accident on July 27, 2003 which left him in the hospital for over a month. All his injuries have healed except for the BP injury which the doctors here in Boston want to save him a lot of future troubles by amputating. Anyone know of any good doctors in the Massachusetts area which would help him out?

Suzie
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Joined:Thu Sep 25, 2003 7:52 am

Re: Supporting a loved one w/ BP

Post by Suzie » Thu Oct 16, 2003 7:37 pm

Hi! Not in Mass., but look on this website, cause that's where I found Dr. Belzberg at Johns Hopkins for my husband---good luck!! ~~~~Suzie~~~~

Louise H. Beaulieu
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Re: Supporting a loved one w/ BP

Post by Louise H. Beaulieu » Thu Oct 16, 2003 7:48 pm

Oh Dawna, do not go that avenue right now. There are some adults on this board who have had injuries like your loved one. I am sure they will come on and answer some of your questions. I have a 9 year old daughter with a brachial plexus birth injury. I know that there is a Doctor Waters in Boston but I am not sure he does adults. Do not make a hasty decision. Some adults will answer you. His injury is still young and there is still a window of hope. There is alot of hope. Good luck and God bless...Louise

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Christopher
Posts:845
Joined:Wed Jun 18, 2003 10:09 pm
Injury Description, Date, extent, surgical intervention etc:Date of Injury: 12/15/02

Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed

BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.

Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)

"Do what you can, with what you have, where you are."
~Theodore Roosevelt
Location:Los Angeles, California USA

Re: Supporting a loved one w/ BP

Post by Christopher » Fri Oct 17, 2003 1:21 am

Dawna,
I know there is a great doctor your boyfriend should meet over there in Boston, I just forget his name! I'll find out tomorrow, a childhood buddy who I trust dearly works with him at Harvard Med School. I spoke with him months ago before I got my surgery and he gave me great advice and seems very amicable. I'll post his name and number tomorrow morning. You're a good woman to be looking out for your boyfriend like this. I wish we were all so lucky! Your boyfriend has to act fast, as to getting a good doctor and surgery though, four to six months post injury is the best window of time to operate.

Take care,
Christopher

Suzie
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Joined:Thu Sep 25, 2003 7:52 am

Re: Supporting a loved one w/ BP

Post by Suzie » Fri Oct 17, 2003 8:38 am

Dawna-- when I was talking about a good doctor, I meant one that specialize in Brachial Plexus injurues--NOT amputation!! Make sure you have exhausted all of your resources before going that very permanent route of amputation--it is a necessity for some, but these docs specializing in BPI have a lot of other suggestions and routes to go before it comes to that!! Check under resources or information on this website---get all the info you can and make an INFORMED decision--don't just settle for the first opinion offered!! Good luck, and stay in touch!! ~~~~~~~~Suzie~~~~~~~

Amy and Jason
Posts:10
Joined:Fri Aug 09, 2002 7:55 pm

Re: Supporting a loved one w/ BP

Post by Amy and Jason » Sun Oct 19, 2003 12:10 pm

Hi! I am so sorry to hear of the unfortunate accident. Please read this and share this with your boyfriend. My name is Amy and my husband is Jason. We were hit by a truck on our motorcycle that failed to yield at a stop light in Arizona 2 years ago. Jason has 4 out of the 5 nerves avulsed(they were pulled out of the spinal cord at the root.) There were many, many other injuries and he was hospitalized for 6+ weeks. He has severe nerve pain, it has not diminished over the last 2 years. All of the doctors told us that amputating the arm would not get rid of the pain - and it won't. Jason had a below elbow amputation last year for other reasons. We new the pain would not go away if the arm was amputated. The pain he has is caused by damaged nerves and you can't make it just go away by getting rid of the arm. Your boyfriend's injury is still very new and there is hope out there for improvement. There is so much involved with this type of injury, and because it is somewhat rare, doctors do not know how to treat it and don't take the time to research it..but there are doctors that do treat it. If you want to find the right doctors and proper care, you have to do the research yourself. Jason did not have medical insurance, he worked part time b/c he was going to school to be a motorcyle tech at the time and we were not married then. He was picked up by state aid, which made it even more difficult to find a doctor who accepted that insurance. We have traveled around the nation for medical care. We've gotten free medical flights, discounts on hotels. I have so much information that I would love to share with you because I think it would really help you both. If you give me your phone number I will call you and share our story, experiences, and resource with you. This isn't a "broken bone injury" that you can put a cast on it and its done in 8 weeks. I wish I knew then, what I know now. I guess I what I'm trying to say is, if I could share our story with you, it may help the both of you bypass all the bs medical/doctor stuff we endured. The injury and accident is bad enough to have to go through, but when you get crappy medical care it makes it so much worse and timing has a lot to do with injury. It takes a toll on you and your boyfriend. I'm on the other side of the injury so I know what you're going through and Jason knows what your boyfriend is going through and he'll talk with him too. Your boyfriend may not want to talk to anyone right now, as he is going through all of the pain and probably depression.
We are 27 years old, how old are you? We live in the St. Louis area but this all happened in Phoenix. Jason is having a spinal cord surgery called a DREZ in North Carolina next week to possible help reduce his pain. We knew about this surgery 6 months after the accident but none of the doctors we saw, and there were several, had ever heard of it. You can email me direct at ballsbaby75@aol.com. The link above has an incorrect email address so don't click on that. Stay with the UBPN message boards. This is probably one of top places of support.

Amy Baldridge

User avatar
Christopher
Posts:845
Joined:Wed Jun 18, 2003 10:09 pm
Injury Description, Date, extent, surgical intervention etc:Date of Injury: 12/15/02

Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed

BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.

Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)

"Do what you can, with what you have, where you are."
~Theodore Roosevelt
Location:Los Angeles, California USA

Re: Supporting a loved one w/ BP

Post by Christopher » Wed Oct 22, 2003 1:38 am

Dawna,
Sorry for the delayed relpy, Dr. Peter Waters is supposed to be the man to see in Boston. He works at the Chilfren's Hospital in Boston and his phone number is 617-355-4849. He works on both children and adults. Best of luck and keep us updated.

Chris

admin
Site Admin
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Joined:Mon Nov 16, 2009 9:59 pm

Re: Supporting a loved one w/ BP

Post by admin » Wed Oct 22, 2003 2:57 pm

Thank you so much for writing!! Sorry it took me so long to respond, he had another surgery on Friday so I've been crazey busy. Sounds like your husband and my boyfriend have a lot of injuries in common. Not only does he have the BP in his left arm he has a large open wound, his Ulnar bone is completely gone(lost it at the accident scene)and many other small wounds here and there. They say if they are able to save his arm which right now looks likely, they'll have to do many graphs to close the wound. His arm looks horrible, I compare it to a shark bite. Over time I'm sure it will look better after tissue slowly grows back. The doctor's keep throwing out at us that amputation now will save him a lot of suffering in the future. He doesn't want that at all, if he gets a life-threatening infection in the wound he'll make that decision, but right now he is hopefull of having a nerve graph surgery to help him out. If they amputate now they'll do an elbow done amputation, but if it gets infected the chances of a shoulder down one increases. Did your husband have a wound that got infected? What made him make his decision? I am 28 and my boyfriend is 25 years old. I ,Thank God, was not on the bike at the time of the accident. I'm glad that you're okay to tell your story!! :)
Can I ask what your husband takes for pain? My boyfriend's Dr. is "weaning" him off his pain meds. He is off the MS04, getting less and less percocets each re-fill. I got the idea of B12 from this web-site so he has been taking that for the past few days. I can't stand the pain he goes through....I cry more than he does. He thrashes around at night and leaves the bedroom to sleep on the couch so I can get a good nights sleep. The shooting pains kill him. He compares them to sticking his arm into scolding hot boiling water. I can't imagine that pain!! I wish I could help him and take the pain away. We diffently want to continue searching for a Doctor who is willing to help him....I might call the Dr. Belzberg at St. Hopkins to see if he could see him. Thanks for the tip on discount airfare and hotels. That worried me because I'm only working and the dissibilty paperwork still isn't complete for him. Funds are diffently limited, but for this I'll sacrifice anything. I've missed soooooo much work already because of this, but thank god they are very supportive.
Good luck with the surgery on his spine. My prayers are with you. I'll email you soon, and once again thank you so much!! :) ~~Dawna~~

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Re: Supporting a loved one w/ BP

Post by admin » Wed Oct 22, 2003 2:59 pm

Thank you.....I'm defintely going to look into him and also for a doctor in Mass!! :)

admin
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Re: Supporting a loved one w/ BP

Post by admin » Wed Oct 22, 2003 3:02 pm

Thank you very much Christopher. It took me so long to get back to you because he actually had another surgery on his arm on Friday and I've been crazy busy with him and work. I will definitely look into Dr. Waters and I'll keep you posted!! :)

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