United Brachial Plexus Network

Hello, I am new to this forum. My fiancée/domestic partner has severe TBPI due to horrible accident 13 years ago. He is also a double amputee on the left side. All of his medical care is through the VA in So California. Because of the left arm amputation most doctors assume he has phantom pain not realizing the pain is from the BPI.

While he was still on active duty he was sent to see a top neurosurgeon in Louisiana, probably in 2002. The doctor could do nothing for him and told him that it would be best if he got on a anti-depressant because of the high suicide rate associated with this injury.

Over the years he has been on just about every medication for nerve pain, all eventually stop working. On our last trip to the Amputee Clinic last November there was a new doctor in charge. He came from the military hospital (Balboa) and worked with active duty amputees. Awesome guy and the only doctor that has examined him since we met that acknowledged his BPI. We are working with a prosthetist to develop a brace/sling to give him upper body support for his shoulder and hold what is left of his arm in place. He also took him off carbazametphine because it wasn't working and said he would no longer benefit from those type of meds. He gave us a tens unit which did nothing. His only relief is from vicodin when he finally gives in and takes it. He also gets some relief from lidocaine cream which is very promising if we can do further with it. I asked his primary doc to prescribe the patches which help but is hard to keep it in place and while it helps it just isn't enough.

We go back to the Amputee clinic next Monday. Would greatly appreciate any advice or recommendations on pain relief.

TIA
Ellen

Wounded warrior, Sorry, and ending in are world of pain for life ?? The quest for the right med is a life long quest, at best you find bandages The only anti depressant is something to try to do inspire of the pain we endure by is trying and doing, hopefully??? Supporting a sling for the shoulder is on sight here by post.
All I know is I am less depress in trying to overcome things in life than worrying about the 10 + pain I end up with trying
Pain kills They are a life long quest , Trying and doing come with higher pain
I drove a semi with birth erbs, I am always happy but the pain I endure and so many post say the same thing it, sucks!!!
You heard of a runners high from endorphins in the brain it like that in are trys How we endure the extra pain in trying is a bandage med, sorry but true, I think
Tom

I thought more about the pain issue and relief
For what it worth, from my birth erbs from the 50s and dealing with pain and relief
I have been threw a boat load of pain meds over the years, Driving a semi made me a glutton for pain or a endorphin ,junky
How you end up in less pain in doing and the pain crash later, I will never understand
Pain relief is all-ways about the next best pill for nerve pain and when you find a pill that work a Little, Overtime you take more to get that little relief, When this happens , Find something new.
Its a quest for sure
Most pain I have is trying to sleep with pain, Then should I take another pain med or a sleeping bill.
I take both
Now your going to a top notch pain doctor for the Va
Here it goes
The best thing you can do for nerve pain is to have the nerve stretch taken out some how
Next best thing would be a injection to deaden our nerve pain, That is my life long quest to find
I know I would be in less pain, if these treatments are out there like this ??? Maybe you could ask this doctor about this when you see him
The second part is the prosthetics, Is there a working prosthetics to help the other arm ??
More help a prosthetic is the more it will help the other arm
Hope this helps??
Tom

Hi Ellen,

I was injured back in 1986, avulsed C5-T1. Other than medications for "normal" pain after surgery or other injuries I have receive from athletics, I don't now or have I ever taken narcotics for the bpi pain. Doesn't mean I don't have them, just don't take anything for them. I offer a few ideas or questions. One, is it possible for him to add some athletic activities into his daily life? I did read that he suffered injuries to his brain as well, how active mentally can he be? Meaning, how much is he able to do activities that can get his mind focused on other activities than thinking about the pain?

I not only speak from my experience but also from talking to hundreds of others with this injury, I have been an active participant on the these boards since 2006 and more importantly, I make the athletic arm sling and as a result of that, I speak to people all the time with our injury.

I know this is a very complex subject with lots of different ideas and experiences, but I know many people who after speaking with me and really understanding the idea of getting the mind focused and busy on other things, have been able to get completely of the narcotics. I am not in any way saying this is easy or that it is possible for everyone, but I do mention it because I know it is possible and many people have been able to do it.

You mention the So Cal VA, I live in the Los Angeles area and would be happy to get together to discuss this in more detail or see about working on some athletic activities he can do. I am also very involved with the Challenged Athletes Foundation and am aware of the many resources they have available for people with all types of disabilities.

My best to you and let me know if there is anything I can do to help. You can always call me at 818-636-8109
Dan

Tom and Dan - Thank you for your responses

We really didn't see a pain specialist, we had an appointment with the Amputee clinic. His doctor in this clinic ordered the development of a prosthetic for the left arm limb to provide shoulder support and protection of the limb. We are working with his Prosthetist on the shoulder/arm brace development. The appointment was for them to see what progress has been made on this and also to check on the sockets for his prosthetic leg. The hope is that the shoulder/arm support will help alleviate some of the pain. He has no muscle in the shoulder to hold the arm limb in place. We are making progress with it but it has been a challenge to find something comfortable for general support and a sleeve that works.

Dan - He is probably the most active double amputee you have ever seen He is an off-road enthusiast and is one hell of a driver. The problem is that it is a seasonal sport and it is hard to keep him busy in the summer months. He has taken up a new hobby in the past month, RC cars. Our local hobby shop owner was able to get him going using an airplane receiver and controller that can be programmed for one hand operation. He is building a RC track in our backyard and plans to start racing. We actually live in Arizona but travel to VA in San Diego. He has a running leg but hasn't been able to use it for a few years because the socket didn't fit anymore. Should have it back with a new socket soon.

Hi Chamellie,
Thanks for your response
I was thinking about the issue of the shoulder pain and having to deal with it from my birth erbs, To date ,I have very little muscles in my shoulder to ,
Pain relief for shoulder
Padding between arm pit and arm , changes angel on arm and shoulder, it helps
Used arm rest a lot, help driving a semi and supporting the erbs arm it also help using a arm chair or couch to support the shoulder more and keep gravity off shoulder to I think
Putting the arm in a jacket pocket help to
Just Thinking
Tom