New to This/Son injured

[trimommy]

i am so sorry to hear about your son. by all means, contact as many experts as you can. since you are in the DC area, you may want to try Dr. Belzberg at Johns Hopkins. maybe since you are there he would get you in soon. and yes, you should also contact the mayo clinic. i got 3 opinions for my injury..Hospital for special surgery in NYC, Johns Hopkins and the Mayo Clinic. you are doing the right thing by acting quickly and trying to gather as much information as possible.

good luck,
Robin

[ptrefam]

Sorry to hear of your son's injury. I would also recommend seeing a BPI specialist. Only after talking with them can you make an informed decision as to weather you/he wants to have surgery. We took my son to the Mayo, yes many people on the boards have been there. Most feel that they are some of the best experts in BPI. However, there are others and I am sure they are very good too. The thing is it needs to be a BPI specialist as no other dr's seem to have the full knowledge needed. You can click on the resources link above to find others.
Sue

[raisab]

I contacted Mayo today. Does anyone know what they look for? After they receive my records they said it will be two weeks before I get a response. Once they decide if they can see him, it will be two-three months.
His tests so far: X-Ray, EMG, and MRI. Is there anything else I should request? It has only been five weeks...but time seems to be of the essence.

[ptrefam]

Time is of the essence especially if he needs nerve transfers. These are usually done within a 6 month post accident time frame. Muscle transfers can be done at any time. You are doing the right thing by being proactive and finding good help so quickly. It sounds like he has had all the right tests. The thing is that none of the tests are 100% accurate. When we took Dustin to Mayo his EMG lasted about 2 hours, this was much more thurough than the one he had done here. When we left we felt we were much more informed of his injury. OT is also very important, keeping the muscles moving and stretched. Many therapists will use e-stim to keep the muscles from atrophying so quickly, or to gain strength. Best of luck and keep us informed. There is a world of knowledge and experience here. One thing to keep in mind is that each injury is unique.
Sue

[swhite1]

I'm sorry to learn of your sons' injury.
You say he can twist his wrist but not move
it up and down and also he has no movement
in his fingers. You(and he) must do this
manually, with his other hand and all the
time. Make sure you keep each joint flexing
or at least flexible.
I can't tell how much of a difference this
will make because as soon as I was discharged
I no longer had the convenience of just
going down the hall for OT and PT. I failed
to keep up my exercises. I'm left with what
I have. Like I said I don't know if this will
help or not because I didn't do it.
My best to you and your son...jeez, shot in
a robbery while at college...I can't imagine
the road ahead for him.
Scott
***See Christopher Janny's message below***


Message was edited by: swhite1

[raisab]

Son had his MRI this past Wednesday. It had Cervical and Thoracic checked on the prescription/order on it plus that he had a Brachial Plexus injury on the comments.
I got a copy of the report and have the films. I had my neighbor who is a Chiropractor read the report for me...
They did no readings whatsoever on the brachial plexus! He is seeing quite a few physicians and this was ordered by the neuro surgeon. His physical rehab physician stated that we would be able to tell from the report whether nerves were severed/stretched/etc from the mri. Is this a case of incompetence on ordering test by the neuro? Should I get another order for his brachial plexus MRI? I have sent every single piece of medical info I have to Mayo including this MRI. What should I do?
BTW, my neighbor was able to tell me that there is avulsion (separation?) from the spinal cord....Though he does have a couple of herniated discs from the fall after being shot.
Any advice is greatly appreciated!

[Brandon_3]

I'm am terribly sorry to here about anyone with a new injury. It is such a terrible injury because there are no definite answers. You are doing all the right things. I think the hardest part of it all is acceptance. Be persistent. I used to live by these message boards, because it was the only source of credible information I could find. The problem is that know two injuries are the same and they are all equally devestating. And there are very few doctors w/any experience. Personally all my nerves were avulsed and there really is no fixing it. The hardest part was to come to terms with it. Be persistant and I wish you well. I haven't been to this site in a long time and now I remember why. It depresses me so much, I just wish there was something I could do.
Sincerely,
Brandon Hubbard

[raisab]

Can anyone who has hadB BPI and loss of finger movement tell me about their experiences? What surgeries haave you had? HOw much if any movement did you regain?
I am waiting to hear from Mayo concerning my sons case. He seems to have complete blockage of mid and lower trunk.
He receives PT and OT each 2 or 3 times a week. He is being fitted with EMS? apparatus this coming week.
Thank you very much for all your help, this site has been of immense help!
If Mayo does not see him, who would be 2nd or 3rd if you could choose any physician? I am sorry for so many questions...but again thank you!

[rbwalton]

Sorry to hear about your son. You asked about finger movement. I can only re-state what swhite1 says. My injury was not traumatic- my cause is still not known. I lost most movement of thumb, index and middle fingers. At the time, I was misdiagnosed as having a different issue than BPI. But, it still is a valid thing to say that the only way I got back any movement was to pretty much become obsessed with constantly moving my impacted fingers with my other hand. The tendons have to be kept stretched out for when they can start to work again. And I mean constant movement.
You mention avulsion. I did not have that, and it took 2-3 of years for me to regain any movement. Along with the constant movement, for me, that it meant making at least a mental effort to think about moving the fingers normally. I also tried to mirror thinking about moving the impacted fingers, while the fingers of the opposite hand were moved.
Also, I had use of a small electric stimulation unit that allowed me to exercise the muscles when my nerves were not firing.
As someone else said, these cases are all different. Some or all of what worked for me may not be appropriate in your son’s case. My doctor told me I would never have normal hand function again without surgery. It took time, but I have regained most movement and a part of grip strength, without surgery which would have not been a sure cure for me in my case. Again, my case was not traumatic, and surgery would have meant tendon transfers that were not needed in the long run.
Talk to your doctors. Ask them a lot, and then go on-line to read about what they say. They tend to not go into enough details at times. I found more info on the internet than any doctor has ever told me about my condition.
Good luck

[trimommy]

good luck with your research. beware that there are very few experts out there and every injury is unique. if you cant get to the mayo clinic, try johns hopkins. they have a brachial plexus doc there. his name is Dr. Belzberg.

there are specific tests to identify brachial plexus injuries, such as EMG's, nerve conduction studies, mylograms.

best of luck!