New Here- My Story

[tmkendra]

Hi Everyone, I'm new to the brachial plexus message boards but im actually not here for myself. My brother suffered a BPI last March 17th, so coming up on a year. He hit a tree head on and has no motor activity in C5, C6 & C7. His doctors never did anything for him and now its been so long we think it might be too late. His shoulder hangs very low and we are currently working to get all his records to maybe go somewhere else in the U.S. to be seen. Perhaps the Mayo Clinic. Can anyone out there tell me what the best route for him may be ? I know that you lose muscle mass every month adn that his nerves may all be dead now, but his doctors neglected him and probably kept him from ever using his arm again.

THank you for all of your input
-tiffany

[ptrefam]

Hi Tiffany,
Sorry to hear about your brother. I think you have the right idea in seeking a BP specialist. I don't know wheather it will be too late or not, only the specialists can tell you that for sure. They may be able to do something with muscle if it is too late to graft nerves. Is your brother seeing a PT or OT? He may get some help there with exercises and ROM. I can't believe the Drs there did nothing, that is so sad. Glad you found this resource. You will find lots of understanding and support from the people on these boards. We also took our son to Mayo. Check the resources on here too, you may find other drs or therapists that can also help. Good luck and keep us posted. By the way how old is your brother if you don't mind me asking?
Sue

[tmkendra]

Hi Sue,

My brother turned 25 in October. I am having some trouble with the acronyms your using, sorry im still new to the whole injury. He hasnt been seeing any sort of doctors or therapist. They literally have done NOTHING for him. I feel like someone should be held responsible for neglecting him for a year.
How did your son get hurt and what kind of injury did he have? If you don't mind me asking.
Tiffany

[ptrefam]

Dustin's car was hit by 2 semi's about 16 months ago. He had several injuries. Now we mostly have the Brachial Plexus injury(BPI) left to work with. His arm has improved but is not functional. He can move it in water or out of gravity, but not in an upright position. The drs feel we should wait for more surgery as it continues to gain strength. Dustin was 18 at the time of his accident. He was seen by the drs at Mayo and I would encourage you to take your brother there, they are very good. Dustin had no avulsions. I too can't believe they did nothing for your brother and yes they should be held accountable. I would persue that also if I were you. Your brother should be seeing an occupaional (OT) or physical (PT) therapist. They should give him exercises that can help. Do you know the extent of his injury? Feel free to ask anything you need. We are all learning from each other and everyone here is very supportive.
Sue

[tmkendra]

Thanks for all of your support.

My brothers injury is severe. His c5, c6, & c7 are all avulsed and his shoulder hangs so low it will probably come out of the socket pretty soon. We have TJ's records and hopefully we will be able to get the insurance company to let us go someone outside of New england. Preferable to the Mayo in MN.

I've talked to others about holding other accountable and talked to people in similar situations that had no luck with it. The courts say that nerves are a grey area and very hard to win a case on.

Once the nerves are avulsed there is nothing you can do right ? I think there should be something he can do for the low shoulder, i just dont know how to help him.

-Tiffany

[Karen McClune]

Hi Tiffany,

So sorry to hear about your brother, I am just very glad you found us. The advise as Sue said he needs to see a BPI specalilist.

My son had a motorcycle accident Feb 2000. The only surgery Ryan had was nerve transplant. The only thing it helped with was pain. Ryans arm is paralized. But he is fine with it and has learned to do everything with one hand. The joke at the last camp was, there isn't anything Ryan can't do except put his hair up in a ponytail. This was the only surgery at the time that was offered to him. Since then he had decided not to have anymore.

When he found UBPN is when he realized all he could do and invited us to camp 2001. Camp has made so many things happen for so many and I am hoping you and your brother will beable to make camp this Sept. here in the State of WA.

I would love to talk to you if you would like, you can email me at karen@ubpn.org and I don't mind calling you back.

By the way Ryan was 21 at the time.

Best to you and your brother.

Hugs, Karen

[tmkendra]

Thank you Karen. I don't know at this point what is going to happen. All I know is how upsetting it is for TJ. I can't imagine what its like to not have a part of my body. Thank you for your input.

-Tiffany

[ptrefam]

Tiffany,
I know they prefer to do nerve transfers in the first 6 months post accident. However, if they do a muscle transfer it includes a nerve and can be done at any time. I know that Ellen's son had all nerves c4-T1 avulsed. After surgery he is again able to hold on to the handle bars of his bike and ride. So, hold out some hope. There is a chance that he can get something back. It probably won't be the whole arm but they are having amazing results with many of the surgeries. If you wish to talk you can also e-mail me as well as others or call or I can call you. Sue 920-722-8014. We asked for a gap coverage from our insurance as they did not have a BP specialist that we could see. They did cover our appts and surgery at Mayo and continue to do so. So, good luck with that, it can be done. Dustin's arm was about 2 fingers sublexed, out of socket. It has now strengthened enough to be very close to normal spot. The first exercise he could do was shrug his shoulder. Even though they thought he couldn't move the arm we set it on a skateboard on a table and had him go back and forth and in and out like that. There was no resistance that way and slowly he could do more reps. I know he used the wrong muscles at first but it was also strengthening the ones he needed. Then when he could do like 30 reps we added a very flat weave indoor/outdoor carpet to add just a little resistance. You said they are avulsed. Did he have an EMG or how did they determine this? Until they actually go in they cannot be certain. It is an educated guess based on the tests but these are not 100% accurate.
Sue

[EllenB]

Hi Tiffany,

I'm the 'Ellen' mentioned earlier. My son John avulsed all five bp nerves four years ago, when he was 15, in a cycling accident when he was hit by a car. Mayo Clinic did a phenominal job in two major surgeries (which now they do as one).

The primary thing Mayo did was gracilis muscle transfers from his legs into his arm, powered by transferred nerves. The gracilis muscles aren't really missed unless you ride horses, since they are used to grip inward. Mayo powered these muscles with various nerves that John could spare (i.e. from his ribs) - as well as his phrenic and part of his good C7 from the other side. John has adjusted and doesn't really "miss" these nerves from their original function.

My guess is that since your son has atrophied muscles, a gracilis transfer might make sense for him also.

Just as clarification, although Mayo's surgeries did give John the ability to grip & release with his hand, he doesn't have strength to support his weight on the injured arm bike handlebar. So he rides one-handed instead. But he does have a degree of functionality with the movement & strength he does have from the surgeries, and the best thing is that the movement has given him relief from the debilitating pain (which unfortunately doesn't happen for everybody - we realize how fortunate he is.)

Your brother definitely should see a specialist. We live in Georgia and Blue Cross Blue Shield didn't fight our going to Mayo in MN & treating it as in network, because the expertise for handling this kind of injury simply didn't exist in Georgia & they recognized that.

I'll send your email a pdf copy of an article that was printed in ubpn's Outreach magazine a couple years ago, outlining our experiences & what Mayo did in greater detail.

btw, are you the person in New Hampshire who wrote a month or two ago? If not, my brother's family lives in Mont Vernon, near Manchester. Beautiful area!

Take care,

Ellen

[tmkendra]

Thanks Ellen! I got the pdf you sent me and we've got a number to call the Mayo to see if we can get an appt. My brother's insurance seems to put up a fight wherever it can, but there are no specialists in new england for this kind of injury. They wanted him to see someone in NH, he did that and she neglected him and now a year later, he is still is so much pain and nothing has been done for him. I'm afraid all of his nerves are probably dead by now. Did John have trouble with his lungs before the operations? TJ already has one lung that isn't functioning correctly because the nerves that control the diaphram aren't functioning.

Again, thank you for your help. And I just signed up on the UBPN boards a few weeks ago, but i did see the post from the other member. I live in Manchester and yes, I love it here!

Thanks! - Tiffany