Frustrated and feeling alone
Frustrated and feeling alone
Hi all, I know I'm not alone in this but I'm sure most of you could agree it can feel that way at times. Some of you know about my son Chase (age 8, LTBPI) rec'd his injury in 03/05 and had surgery at Johns Hopkins in 06/05 and we're in the waiting stages. He avulsed C8 and T1 and C5,C6 and C7 were in pretty bad shape, but those are the ones they worked on. I know it's still early, and he is showing signs of improvement, but there are issues and concerns w/preserving the integrity of his arm, in hopes of innervation. Because we traveled to the East Coast for surgery in live in CA, we aren't being followed by a Dr and don't know when Chase should have another EMG, or what our next move should be. To date, he has not had Estim, and we try to be creative w/ROM exercises. He has a subluxation in his shoulder, while not severe, for the most part, his arm just dangles daily. Secondly and more concerning is his elbow is hyperextending and also unsupported and his triceps are kicking in which is contributing to the problem. I've been trying to work w/our therapists (we've had several) since August to come up w/something to support his arm at least while he's at school (8 yr olds are pretty active) and haven't come up with anything other than a sling. We've even met w/a prosthetic specialist and still nothing tolerable. Does anyone out there have any suggestions? I've looked into the Wilmer Orthosis which doesn't come in child sizes, as well as the ARK braces and most recently Theratogs. Any suggestions/recommendations would be greatly appreciated. Thanks for allowing me to vent.
Lourdes
Lourdes
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admin
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Re: Frustrated and feeling alone
I don't have much to offer you other than moral support. I'm in the beginning stages of finding help for my son who is 27 and avulsed 3 nerves. I'm so grateful he's alive. Yet, it is hard to see him suffer with pain and the realization of what this accident has done to his life. So...I look at the positive things that have happened. Just knowing that people care has helped a great deal. I didn't want your question to go with having a 0 response, so that is what I have to offer. Hang in there...you are not alone and people will help. Michele
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admin
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Re: Frustrated and feeling alone
Lourdes, I e mailed you.
Re: Frustrated and feeling alone
Hi Lourdes,
You probably should pursue the estim, since it will help keep the muscles going until the transferred nerves can grow out. If not, the muscles will atrophy. Can Dr. Belzburg write you a script for that? ROM is very good, also - and if you can get Chase into a pool, you might both be surprised by what he can do!
How are his pain levels?
Take care,
Ellen
You probably should pursue the estim, since it will help keep the muscles going until the transferred nerves can grow out. If not, the muscles will atrophy. Can Dr. Belzburg write you a script for that? ROM is very good, also - and if you can get Chase into a pool, you might both be surprised by what he can do!
How are his pain levels?
Take care,
Ellen
Re: Frustrated and feeling alone
Lourdes,
I have been using the Givmohr Sling since November. I can wear it all day if needed. So far, it's the best I have found. I don't know if they are making childrens sizes. If they don't, it could be modified petty easily. I have attached one link where it can be purchased, but there are many other distributers. Just search givmohr sling.
Hope it helps your little guy.
Mike
http://www.sammonspreston.com/Supply/Pr ... d=92724501
I have been using the Givmohr Sling since November. I can wear it all day if needed. So far, it's the best I have found. I don't know if they are making childrens sizes. If they don't, it could be modified petty easily. I have attached one link where it can be purchased, but there are many other distributers. Just search givmohr sling.
Hope it helps your little guy.
Mike
http://www.sammonspreston.com/Supply/Pr ... d=92724501
Re: Frustrated and feeling alone
Thank you all for your suggestions and support. We'll be meeting w/the orthotist and therapist on Monday to hopefully come up w/a solution - I do like the Givmohr sling idea Mike and hope to incorporate it into the design. Our therapist still thinks it's too early to do estim, but I'm going to try to have a phone clinic w/Dr Belzburg and get his recommendations. We're also going to begin pool therapy next week. Thankfully, Chase is able to manage his pain w/400mg neurontin and I also have him on several supplements. I'm so grateful for this forum and for everyone's willingness to offer advise and share in eachother's pain - it make all the difference!
Lourdes
Lourdes
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Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: Frustrated and feeling alone
Lourdes,
Take a look at the slings that Fernando has designed and had made. He posted images on the http://www.frappr.com/ubpntbpi site, but there are more on his own http://www.frappr.com/?a=myfrappr&id=125232 site. I've designed two different slings, but there are certain problems with both, Fernando's looks like the best design for althetic pursuit.
Good luck,
Christopher
Just to let anyone know, once you join the Frappr site, you can store as many images as you want on either the ubpn/tbpi site or your own personal site that is automatically created once you join.
eg. just click on Fernando's or my name above any image we've posted there and it takes you to the individual's site.
Take a look at the slings that Fernando has designed and had made. He posted images on the http://www.frappr.com/ubpntbpi site, but there are more on his own http://www.frappr.com/?a=myfrappr&id=125232 site. I've designed two different slings, but there are certain problems with both, Fernando's looks like the best design for althetic pursuit.
Good luck,
Christopher
Just to let anyone know, once you join the Frappr site, you can store as many images as you want on either the ubpn/tbpi site or your own personal site that is automatically created once you join.
eg. just click on Fernando's or my name above any image we've posted there and it takes you to the individual's site.
