United Brachial Plexus Network, Inc.

I just wanted to share this suggestion for those who are not aware of the software but I use this product frequently. This is a software that allows you to speak into your computer to do the typing for you. Fortunately, I was able to get an early version and although it didn't work too well back in 1995 it works extremely well now. You have to read to it a little bit and speak very clearly but it works well and may be very helpful to people who are not aware of it.

Feel free to call me with any questions about this if you have any.

Hi Jim,
Thank you for your post.
Lets talk about your elbow , My elbow was broken at birth and Erbs,
Many post a bent arm to.
Its about the weigh of the arm and getting the pressure and gravity off, some way. Resting a arm on anything helps, that is hi enough to do so. Some get Dans sling to , here.
Blood flow is my problem to Color change, I am sure its a blood nerve issue.
I think more so, I believe that its scare tissue stretch on injured nerves ? that me.
You are doing great. Some way you have done a lot in life in-spite of your pain.
I think there is posting that seem to say.
I would rather live in more pain than give up trying. Your in good company Here.
Just thinking,
Tom

I don't have a problem with my elbow but I'm sorry to hear about yours. Do you have any use of any of the muscles in your arm, hand or shoulder? I know that my biggest problem is although, I have half decent use of my arm it gets weak very quickly and it seems like the weight on my shoulder ( and the lack of some of the muscles not working properly creates tremendous pain on all the shoulder muscles - in addition to the pain that moves around in most of my arm and hand. I think it's a matter of symmetry in that, our body wants to have perfect muscle balance and without that everything gets thrown off including the muscles in the other side. I know that every doctor always told me do not sling my arm because that causes the muscles to atrophy quickly however, if most of them are not working anyhow it may not matter as much and the armored certainly get in the way of doing things. I share the same problem in that the only thing that really helps is laying on top of my arm and immobilizing it and my neck - very strange. Also I have a lot of discoloration in my hand and I'm told that's related to the nerve damage. I've asked several doctors why the blood vessels, on my damaged side, are tiny and no one seems to have an answer. ( I can see the ones in my pectoral chest muscle) I suspect it's related to the nerve damage somehow since my muscles still have reasonable movement but suspect the restricted blood flow contributes to the fatigue of the muscles due to the lack of oxygen. I'm told it is the stretched nerves have scar tissue as well and that's what causes the majority of the severe pain. I believe that when they get stretched they lose their ability to conduct electricity just like a piece a wire would. I've been fortunate enough to have seen many very good doctors and attend some of the best PT clinics in the country. Every PT place seems to have a descent trick or a way to alleviate some of the problem by using something differently.

From what I can read it sounds like the doctors often use the elbow to extend the hand forward to provide some use so you can use your forearm and hand to push things up against it with your other hand? However, it certainly seems like a double edged sword since that creates additional leverage and weight on the shoulder. Depending on the damage of the muscles in a shoulder and maybe even without any damage it's likely going to cause spasming and additional load leading to pain in many cases in the shoulder. One thing I've learned, due to the number of muscles, it's an extremely complex problem. It's also unbelievably painful and every day I'm amazed how much pain this injury creates. I'm not sure how the Dans sling works but I'm certainly going to look into it so I understand it better. One thing I found is at 60 it's becoming much harder to regain lost movement and strength due to age. Right now I'm dealing with a very long PT session to try and get the as much range back possible and it's a nightmare. I know I am lucky in many ways that at least I have some use of most of the muscles in my arm but a fairly restricted range of motion. It sounds like we share many of the same problems and I appreciate your comments. Have you used the Facebook site yet? It's nice to be able to discuss the problem with someone else. Appreciate your feedback! Thanks Jim

Hi Jim,
Thanks for writing back.
I have very little use in my erbs arm and hand. I have a gap between my collar bone and the top of my arm bone. My elbow was broken and my scapula was broken at birth, Dam Forceps. In-spite of these limitation I learn to strength what I could growing up. The little use I have gotten became strong enough to drive a semi for years.
I am 67 and the pain never got better till , I retired. I can rest my arms more.
I really understand your pain , and all here posting to deal with SOO much pain.
Go to Resource here on right column and look at others using Dan sling.
I think the sling is great to rest the arm , when active so your supporting the shoulder from jerking around.
The fact to the slings is to support the shoulder and arm. But it is very important to use your limitation to. Pain I know is part of doing so. Change of color we share.
Dealing with pain is a life long Quest for sure.
Your doing great!!!
Sorry I do not do face book, I dont own a cell phone or tablet.
Just another Dinosaur .
Best trys,
Tom

Oh Jim,
I thought I would add this to my last post.
Wow , You know a lot about your experience with your injuries.
You have gone threw so much getting Some usage back.
I really wonder how much scare tissue is causing you pain and constricting veins you see? Can they do something about scar tissue at all for pain issues and help with blood flow ?? One thing is true for me blood pressure is higher in my erbs arm.
I am amazed that having surgeries Might cause increase scare tissue and Pain ??
You have come far in life trying getting Some help. I never had help for my erbs, Last therapy ended at 10 at Easter Seal therapy. I learned grasp from squeezing a small rubber ball.
You help by your post because of the experiences you have had.
I only can only share my experience without help.
Best think about this sight is we all by post Try to give others a hand up by are experience and post.
Thanks

Hey Tom,

Anything I can share that may help makes me feel a little better. My condition may be different but has some similarities you've explained. How did you figure out the blood pressure was different in one arm vs the other? Just a regular cuff style test at the docs office? That's amazing. One thing I found is that the nerve damage certainly limits the amount of conductivity to the muscles but depending on pain and any benefit any physical therapy that results in a little more use can be helpful. For me the benefits dwindle quick. They did a scar surgery removal under my collar bone 6 mos after the accident. At first, for me, it was much worse and lost most of the use of my arm for a couple of years but slowly it came back to where it was. I had 2 surgeons attend and certainly suggest as many consults for anyone before having any surgery and weigh out the pros and cons. The shoulder takes a lot of abuse since the muscles in the arm don't work right and at least for me the shoulder causer wicked pain and spasms. Its a battle to keep the range up and to try to work on any muscles I can to maintain any tone. Its always a question of letting it go but either way it seems to hurt bad and to have some use seems to be the better choice. Its hard to try and keep it moving. Not sure for you but they have programs in the pool to take the weight off your arm and then you may be able to exercise the shoulder if it hurts and if its beneficial to have the use. Also, the pectoral/chest muscle which can hurt pretty bad too. I have a lot of atrophy in that muscle too. Anyhow, I think its great that the ball helps!! I know that SSDI is pretty good about paying for some of the PT every year for a while but I need to come up with the deductible payments which I cant afford. I just get as much as I can in a few visits and do them at home then go back and have them adjust. If I was not doing this I know I would lose all use pretty quick and know everyone is different. I would not nor have they suggested a 2nd scar tissue removal surgery.

Can you still dive at all? I know I could swim pretty well with a Hawaiin sling in one arm. Hope so. Thanks for sharing your thoughts. I know how hard it is. Jim

Jim,
True our injury are different as many here posting ,
Pain and emotional issues are closer to the same because of are injury challenges.
I wish some one would tell you the balance between therapy and resting your arm?
There got to be a balance between the two. You cant be left ware slowing down the therapy to rest for the pain and loosing more usage you have gain. That SUCKS!!! Some doctor need to help you with this balance.
I am all about water exercise , Whirlpools, floating in a pool ETC.
I am a Padi Master diver and the felling of weightless at 60 ft , does alot for my pain issues. Big on water Therapy.
I drive some still , but my good arm got hurt driving after driving a semi for 25 years.
I dont know which is worse, never getting help for my birth erbs or the surgery outcome with more pain.
There are So many posting over pain issue even Amputation happens because of pain.
There got to be more done with pain management , than if it hurts dont do it.
Just thinking,
Tom

Jim,
Oh, I miss one of your question about blood pressure.
The doctors in the past did Try to take the blood pressure in the erbs arm.
That how I had different blood pressures in my arms.
The color change happen from my forearm and A lot in my hand. Goes to purple in my hand in winter. I beat the Hell out my erbs arm driving a semi and Winter were the worse for pain issues. I was So happy that I could drive a semi with erbs, in-spite of the pain I went threw. It is true that everyone here posting do a lot to find ways to adapt in pain, you do the same to.

Tom

Hey Tom,

Sorry to hear that you're having so much trouble with your "good arm". It seems like a lot of people say the same thing and it makes sense. My doctor who did the surgery said swim, swim, swim for therapy. I never did too much. The first several years I could barely use it after the surgery. I may try it again though. I've pushed it about as far as I can this round of therapy and we'll see what I can and cant do afterwards.

I don't think the docs can help with the balance between therapy and pain etc. Its really a matter of listening to your own body after a while and you can only tolerate so much pain. I agree the pain management side is an absolute nightmare. Whenever I try to move I need to see if they will accept me as a patient. On one temp job I had to drive 2 hours every 3 days for meds from the doctor. I had another job I thought I may be able to do and flew out before I even interviewed just to see if they could take me as a patient, they did and then did not get the job. Pain management centers feel they can heal any pain and they had me on so many different meds over the years and none helped. Even had a spinal implant. Considered having an amputation but they said that phantom pain was too big a risk. Almost went to mexico to have it done but figure it would be the pits to have phantom pain as well. Tried an electrical implant into the spine and it would not dull the pain far enough up my arm. Its been a very long road and grateful to have some use of it. I do the best I can for the pain and its very difficult. I guess it varies for people. Its just so many muscles effected. Some partially work so the others try to work the wrong way to compensate and it just wreaks havoc on those too. Dunno every day its just a balancing act trying to use it carefully, not too much and not too little.

Anyhow, appreciate the ear. Have a good week. Jim

Hi Jim,
WOW, Talk about EFFORT!!!!
Im Impress-!!
Ill try to SLOW you DOWN to rest???
Pain MANAGEMENT??
I know the pain I got driving a semi with erbs , WAS NUTs!!
End of a day pain got close to 10 a lot . But Im the crazy diving a semi in pain. But Happy.
What I do for pain??
Rest your arm , when you can.
Resting the shoulder on a deck or table.
Hand held electric massager , Great for tension in arm and hand , Trigger pain spots you have.
Resting your arm on a the arm of a chair or couch with a soft pillow.
These things, help me to take the gravity off by finding a position to relive tension on my nerves, to.
Dan sling I thought might help to take the gravity off to rest.
I just though this mite help till you get in some pain management program.
Fact is Jim, What you said about your pain. That echo ,by so many postting to about pain.
What is VERy real is , We all know how you fell but resting the pain is a Quest to.
Just Thinking,
Tom