United Brachial Plexus Network, Inc.

Hello,
Last I checked in was back in March just prior to our trip to Mayo for a follow-up/EMG for Chase. Much has happened since then. Chase is doing incredible! Our appt w/the specialists at Mayo (Bishop,Shin,Spinner) went very well. His EMG indicated reinnervation in all of his targeted upper arm muscles. The surgeons were all very pleased with what Chase has regained since his surgery last June w/Dr. Belzberg. They commented on what an exceptional surgeon he is as well as on their mutual respect for eachother. Chase has been using a biofeedback unit to help him focus and retrain specific muscles like his biceps. He is able to get elbow flexion in water, and do a full triceps extension against gravity. He is able to get some movement in 4 of his 5 fingers which has even Dr. Belzberg amazed. He's still on low doses of neurontin (400mg/day), and when we've tried to scale back, he is uncomfortable so we reinstate. Anyway, all in all things are better than expected by all. We have a follow up with the Mayo team in mid Aug. Our most pressing situation recently is our youngest son who just turned 4, has been diagnosed with autism. This not only shocked us, but has been devastating and has really put Chase's injury on the back burners for me. While Chase has this terrible life changing injury, he will go on to live a functional and "normal" life where as with Cole, who knows what will happen. Needless to say, I'm where I was exactly one year ago when we first learned of Chase's injury - researching and educating ourselves on autistic disorder. The good thing is, if he is autistic (and the more we learn, the more we're questioning the diagnosis), he's already made huge improvements just with dietary changes and supplements. We're looking for a second evaluation/diagnosis to confirm the original findings. I've learned much with seeking expert opinion and research, research, research! I do hope everyone is well and plan on checking in more often now that I'm feeling a little more in control of my life.
Take care,
Lourdes

hi. i just read your post and am very happy for you and your son chase.sorry to hear about your youngest i hope things will get better for you and him. i have a couple of questions if you dont mind .i read your post regarding chase's surgery back in june. did they do anything with c8 t1 to get finger movement back? its pretty amazing that he is getting this. what is the biofeedback machine and how do you get one? how long were the grafts they did? sorry about the questions im just 1 month post surgery and have pretty similar injury. sural nerve grafts to suprascapular, musculataneous, radial and axillary nerves. but they did nothing for medial cord c8 t1. i am very glad to hear of people getting recovery because it gives me hope.
thank you in advance for your replies.
jim from philadelphia rtbpi. god bless

Hi Lourdes
Great to hear things are going so well for Chase! It's very exciting when this happens, I still can't quite believe that multiple avulsions are not the end of the world (or the arm) as they once were. It's also good to hear of doctors praising and respecting one anothers work instead of competing for patients.
Sorry Cole has beern diagnosed with autism but I think you're right to question the diagnosis, my family doctor is diagnosed Apsbergers but is very high functioning and worries that so many more kids are diagnosed these days. She is a strong advocate of a change in diet working wonders, I really think it can help. Hope things work out for Cole :0)
Jen NZ

Hi Jim,
Hope and faith are what got us to this point. Sounds like you may be familiar w/Chase's injury. Chase had a complete plexus injury w/combination of pre/post ganglionic lesions. We believe he avulsed C8/T1, possibly C7 (maybe a small connection), and C5&C6 were questionable, but this is where they did all the work. They did nothing to C7, C8&T1. When we wen to Mayo in March and asked about estim, they recommended biofeedback instead to help Chase train the newly innervated specific muscles. They way it works, is you apply the sesnsors to say the biceps, set a threshold target by having him try to activate it and when he achieves the goal, it lights up and beeps while he holds the contraction then he gets a small break before it tells him to contract again. It's just a way to get him to train specific muscles rather than over-compensating by using other muscle groups. His grafts were fairly long at 12cm to allow for some movement w/o disruption. He'll likely have an additional surgery approx 2 yrs post-op to workout what's left below elbow (assuming he gets elbow flexion). Blessings to you as you recover and heal.
Lourdes

Priscilla and Jen - Thanks for your encouragement and support. On both accounts of BPI and Autism the good news is - things aren't as they once were where you were handed your diagnosis with an apology of there's nothing we could do. Change is happening everyday and people no longer simply accept what the first doc tells them. We've become very informed and there are many "alternative" means of intervention as well w/supplements, chiropractic, cold laser, etc. Who knows - we've tried many things w/Chase and for what was originally expected of his injury, he's getting some good results. Whether or not his arm becomes functional to him will be for him to decide later, but just to see it moving around and filling in brings me joy. I hope you're all well - Priscilla, I'd love to hear the latest on James.
Take care!
Lourdes