United Brachial Plexus Network, Inc.

I just wanted to find out if anyone who had the mod quad had problems staying in the splint at 120 degrees frankie has had no problem staying at 110 degrees but when they raise it the extra 5 or 10 degrees he has a burning in his shoulder and has to go back to 110 degrees.He can do ROM all the way to 120 with no problem. Thanks Mare

I had mod quad 2 years ago and had trouble going to 120*. I didn't have burning, I had numbing but know that burning is also a sign the plexus is being stretched. To solve this? I just went really slowly, like 5* if 10* was too much. But also, I came to find that the numbing was just part of my personal recovery so at night it may go numb for the first few nights and then by the third it had adjusted and I could then raise it some more and on and on. Dr. Nath used to tell me that he didn't care if I was going numb as long as I wasn't losing function in my hand (which has full function). And since I never did lose function I got over being freaked out by the temporary lack of feeling because I would just work though it. By the way, I am 38, and my range of motion prior to surgery (out in front lift) was 40* and now I am at 175* passively, 115* actively, so I am proof the stretch (actually lengthening) can be done! Call if you like (503) 880-4682 Suzy

I had my Mod Quad 3 years ago. I have never gotten my arm past 90 degrees, except for passively. When in my split whenever it was taken past 90 degrees, it would go completely numb within about 2 minutes. I have much more fuction than I did before my mod quad, but no where near "normal" fuction.

Yes Frankie also experiences the numbness in his hand but if we reposition the hand that goes away the ot and I are both worried because he can raise his arm up slightly when standing but it stays close to his body he can't get it out there away from his side this is when standing but when you have him do it laying down he gets it up and away from his body she says for some reason e one of the muscles aren't kicking in but doesn't know why we see Dr Nath next Wed and are going to start electrical Stim has anyone don't that and how did it work out Thanks Mare

Yes, I do e-stim. I had the same problem with no response and my PT just said there are no neural pathways built because there never needed to be any so there is no brain connection to some of the muscles. So I built them with repetitive exercise. For example, I have a pulley system and I do three sets of 10 - first raising the arm out in front and overhead, then out to the side and overhead, then straight up and overhead. It took 8 months before the elbow region of my arm responded - 8 months. Had I not been encouraged by my PT that neural pathways could be built I would have given up and never had function. Now that part of the arm is learning how to behave. I am overhead at a 70* angle and am working to be overhead upright at 90* even if it takes a few more years.
Again, I too had numbness and Nath said as long as I wasn't losing function he didn't care and I worked through it to get from 90* to 175*. Now each morning as I wake up I stretch overhead in bed simply because I can - it is such a simple thing people take for granted and it makes me smile each and every time. Suzy

Thank you everyone for the useful info and encouragement. Suzy, I'm going to get frankies OT to start showing him how to use the pulleys I don't know if you have hand function? frankie doesn't but we velcro alot to it. Also I'm just waiting on the script from Dr Nath for the e-stim. Its so true about taking simple movements for granted Frankies arm hasn't really become functional to him yet but he is thrilled just for the movement he does now have and says even if he get nothing more then this it was well worth it. He does think its cool that he can put his hands behind his head or pick his nose while laying down (what can I say he's a boy) Have a great day Mare

Mare,
To boys it is the little things that matter....I love your honesty. I am glad that Frankie is doing well !!! GAYLE

Frankie is so funny.
It's the little things that are important to boys... LOL...

Tell him to stick to his PT/OT instructions.
I did not get my hand to a neutral position until I was over 50 and my heart was singing for joy...
I was so pronated I never thought it would happen.

Kath (adult/robpi)

Yes, I have hand function. I was only injured at the C5 which affected only the deltoid, nothing else, so I don't have the typical elbow contracture ect. I say only as if I am a lucky one, but to be honest none of us are lucky and this whole injury makes me so angry I cry when I think of "normal" babies suddenly being disabled when entering the outside world. Sorry, done now
Everytime I think I cannot make anymore progress, I think of how it took me 8 months to get a response at the elbow on the pully and I know everything can be possible with time. And everyday I think, "but if I get no further I am happy at where I am" but deep down I know I will continue to improve.
It took 38 years to get this useless, I don't think it is too much to wait 3-5 years to get a bunch of it back I like that no one has the answers to this progression because there is no one to tell me "you can't do it". That is just my take.

Well Frankie started the E-Stim yesterday. He said it made his arm a little stronger when doing his exercises. I bought a pully last night his OT said she will show him Thurs how to use it. Thanks everyone for all the information. We go to see Dr Nath this afternoon. Frankie's OT says he might want to do a scar release. There is a part of the incision that is sunk in its very noticeable and she thinks it might be preventing some movement. It's right up top by the shoulder where the crease for the underarm starts. Also the Ot wants me to ask Dr Nath if he thinks botox will help Frankie's elbow contracture. She says it feels like its mostly muscle tightness I know after surgery we asked Dr Nath about tendon lengthening but he said he wouldn't do it without doing the bone lengthening and turn the bone so the palm is down then he would also do hand surgery. Has anyone else used botox for the elbow contractures and serial casting and does it work? Thanks Mare