confused/whose right?
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confused/whose right?
Do any of you experience severe shaking,tremors when you attempt to lift your bad arm? Also how many of you have normal EMG's or near normal? Do any of you have winging without a long thoracic nerve injury. I am so confused. My son was diag. 3 years ago with tbpi he went to therapy, had shoulder reconstructive surgery was 100% better and w/o winging, until he fell and that was the end of better. he know is winging and dislocating and shaking been to 4 different doctors. One saw him total of 5 min. is ready to cut open his neck for a decompression. One who is both ortho and bpi specialist referred him to shoulder specialist. Shoulder specialist is baffled does not know why he is shaking thinks the winging is mechanical compensation the other is referring us to a neuro. No mention of a bpi. Does he have a bpi or not? so confused...
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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: confused/whose right?
EMG's are not 100% reliable, they are an indication of what MIGHT be wrong. The only way to know for sure is to get in there and take a look.
I think you are right to be wary, nerve injuries are not easily diagnosed correctly and I know of people who have had unsatisfactory results from the decompression surgery. These injuries are extremely variable and there is no such thing as one treatment that will fix all of them, to suggest surgery after a 5 minute examination seems downright reckless. I know of a woman whose pain became so bad after decompression surgery that she lost her job, prior to the surgery it had been tolerable. Her winging was fixed but the pain was worse than the winging had been.
I don't know which doctors your son has seen but I would definitely suggest seeing a team whose main interest is trauma brachial plexus injuries. If you are in the States, the most experienced is probably Dr Kline in Louisiana, and the Mayo Clinic have an extremely good reputation too. Both of these teams specialise in trauma injuries rather than birth injuries and would be able to advise you who to see nearer you if you aren't able to see them. Some doctors/teams whose main experience is birth injuries will also see trauma injured patients but a dedicated specialist is best if you can get to see one.
I hope you get some answers, and it's good that you are asking questions.
I think you are right to be wary, nerve injuries are not easily diagnosed correctly and I know of people who have had unsatisfactory results from the decompression surgery. These injuries are extremely variable and there is no such thing as one treatment that will fix all of them, to suggest surgery after a 5 minute examination seems downright reckless. I know of a woman whose pain became so bad after decompression surgery that she lost her job, prior to the surgery it had been tolerable. Her winging was fixed but the pain was worse than the winging had been.
I don't know which doctors your son has seen but I would definitely suggest seeing a team whose main interest is trauma brachial plexus injuries. If you are in the States, the most experienced is probably Dr Kline in Louisiana, and the Mayo Clinic have an extremely good reputation too. Both of these teams specialise in trauma injuries rather than birth injuries and would be able to advise you who to see nearer you if you aren't able to see them. Some doctors/teams whose main experience is birth injuries will also see trauma injured patients but a dedicated specialist is best if you can get to see one.
I hope you get some answers, and it's good that you are asking questions.
Re: confused/whose right?
I was also wondering about Mayo for your son since their team includes both ortho & neuro specialties. Write me directly if you want more info.
And keep asking questions.
Ellen
And keep asking questions.
Ellen
Re: confused/whose right?
I am so glad someone brought up the EMG results. I had 2. The first one by a neouroligist and it showed nothing and was very painful (left brusing) After months of insisting to one dr after another that I still had great pain, God brought a new dr into my life that ordered another EMG with a guy who just does testing. Right away I realized what the first dr had put me through was for nothing. The new dr wouldn't test me until another appt when I had no pain meds in me and no Biofreeze or lotion on my arm/hand. That was not the requirements for the first test and I had done all 3. The next test showed the damage that I knew was there but no xray or test had found. Up to that point I was the only one that really new something was not right. It was almost 6 months to the day a dr final comfirmed what I knew!