United Brachial Plexus Network, Inc.

hi all,
joy here you might remember my son mark was diagnosed
with bpn 6 years ago, he is in a bad way and has lost a
lot of muscle off his arm back and chest the doctors
over here said there is nothing to be done i live in ireland, they are now talking about screwing his arm
to his shoulder to keep it in place and give relief to his arm as it is just hanging there and he is in a lot
of pain, now i am hoping to go over to see if dr nath
can do any thing for him, but was wondering if there
was any one out there that had this procedure and did you get relief please write back

joy

Hi Joy, I am from Ireland too and there is a specialist in the Mater who specialises in Brachial injuries. I have a traumatic bilateral c5,c6 injury, luckily my right arm has full range of movement just lacking strength. As you are in Naas you are close as well. 5 years seems like a long time to wait for someone to recover without any intervention, thats if intervention could have been done at an earlier stage.

Has your son done any emg tests to see which nerves are firing. It sounds like you are talking about a shoulder fusion, you could do a search on shoulder fusion here in these forums, there are lots of comments about it.

Here is a site describing the general procedure.

http://www.shoulder1.com/care/procedure20.cfm/19

This is something I would want a second or third opinion on before I proceeded. And I would definitely need to know the actual cause of my condition before committing to this. Have they ruled everything else out as a cause? Are there other ways to proceed? With continuing pain this far into it, is the pain an indication of a different cause?

hi aurelia thank you for replying so quickly,i was beginning to think we were alone with this diseaseas i cant find any info in this country no organisationswebsites nothing,mark did have all yhose tests done and as far as i know the nerves that are damaged are at the top of his spine and on the right hand side of his chestdid you have a operation for your breakial plexus if you did how did it go , also could you give me the name of the specialist in the mater at the moment we are dealing
with dr ray murphy in tallaght and to be honest i dont think he realy cares mark is in a bad way
so hopefully we will be heading to america to see about nerve graft or nerve transfare look forward to hearing from you again

joy

hi richard, great to hear from you again i think the doctors are doing it to keep his shoulder in place and to give him relief from pain mark finds his arm very heavy and finds it very hard to carry his arm but i will search the website you sent me and thank you so much hope you are well.                  joy

Well, I wish you both only the best. I just find it hard to imagine that your son and I have the same thing going on. His case sounds so extreme compared to mine. More web sites about this. . . Just search using Google or any other search engine- for "Brachial plexus neuritis" or "Parsonage Turner Syndrome". There are a lot of sites. It might help you see what to expect, or at least what most "experts" think you can expect with this disease, or whatever it is. . .

Richard

Is it pain to his arm that is bothering him, or neck & shoulder pain from supporting the arm?

I used to get severe migraines from the weight of my arm pulling on my neck & shoulder. Now I hardly ever get them when I get a massage every 2 weeks. I still take muscle relaxants when it gets bad, but that is much less frequent now.

I also ice my neck & shoulder whenever it hurts. The cold pack feels awful on any raw nerves, but that soon goes away and your neck starts to relax.

Hi Joy,

I have emailed you privately regarding name of surgeon in Dublin. I know you say it was the top of his spine, but generally in brachial injuries there are spinal segments correlating with nerves and these are c5,c6,c7,c8,T1 and each of these nerves supply muscles, ie. c5,c6, deltoid,biceps, c7 triceps, c8,T1 are forearm and hands, I think. As I am c5,c6 the operation I had was he moved the Latissimus Dorsi into my shoulder to try and give me more lift function. But depending on your function and your injry type there are different types of operations, all of them just improvements (if they work) on your function. Mine didn't give me what he had planned, but it gave me more stability, mind you that seems to going as I can feel more separation going on in my humerous ball and shoulder so I may be looking at shoulder fusion too.

hi aureila,
yes got your email thank you so much,
i still cant get a straight answer out of this dr
it has been 6 years and no intervention at all he has offered us no explanation as to what he thinks might be
causing it and not once offered any treatment that is why i am seeking help abroad but i will try and get our dr to refare mark over to dr cronin.
thanks again and take care

joy

hi heddip,
thankyou for your email mark has a lot of pain in his shoulder arm and fingers also his arm is a dead weight and he feels he can not carry it around,so i the dr
feels it might give him a bit of ease,
thank you again for your suggesstions i will defenatly
try them out take care.

joy