United Brachial Plexus Network, Inc.

Hi! After sitting out a spell I've decided to give UBPN and family another try. Since my last request or posting ,10-16-06, a lot has changed in my life. Except for one thing that is, my TBPI (is this correct for a traumatic brachial plexus injury?).Of course the pain is still intense. Does it ever stop? I moved into an assisted living facility and stayed for six months. That was somewhat working out. I was there until my sixteen year old son and I leased an apartment near his high school for him to complete his high school studies. I must say it has been a horrible experience because nobody understands just how much pain I am in...all the time. I will post this exact message on the adult site as suggested by you Carolyn J. I thank you for your concern. As of yet I've had no help related directly to my pain(s) and day to day activities. I'm assuming people see me do something once I can do it all the time. If I do anything it's probably because no one else will. Even Social Security has no guidance. I need help and I will not deny it. I just don't know where to turn. I am still taking mega-doses of Gabapentin but I am in no program nor have I heard of any program to help me help myself. I have been asked to consider amputation but I cannot bring myself to that conclusion. Just this afternoon the lady I pay to do my laundry told me about dialing 211 for all types of assistance with everything but my physical condition or my mental state of mind. I honestly do not know just how much longer I can keep this way of living up. I don't even call it living when it's more like just existing and for what. My 16yr old is too busy enjoying his summer vacation to bother with me. I am in constant pain from my fractured shoulder down to every finger joint on my left arm and hand. The pain ranges from an unbelievable crushing to burning. I did have a PT therapist massage my entire left side with bio-freeze and TLC. It was awesome. Goose bump awesome. I need more sessions like that but that's not going to happen because, as she said with a tear in her eye, she doesn't see how my shoulder and arm will ever improve. She worked my range of motion...carefully but oh so heavenly. God bless her compassion. Once again I will anxiously await for spectacular input and God Bless us everyone. I forgot to mention again does anyone use a sling to cradle their afflicted arm?
If this is too long for a message board email me at sew3fan@msn.com
Scott

Scott I would do a sling I think if I were in your position, just to keep the arm from dropping even further. I don't know much about rotator cuff damage, cept that it does tend to keep you from raising your arms and a lot of pain in the shoulder. Not sure if you've gone ahead with the cuff surgery at this point, but I would wonder why they wouldn't do it and then securely sling your arm and shoulder for the time it took to heal. The cuff problems could be half of the pain too, from nerve stretching and such.
Wendy

For myself, yes, after 27 years I still get pain, if the weather's bad or if I'm sick it gets bad. I was on handfuls of painkillers in the early days, they made me a zombie and made me depressed and unable to function in the world-I blamed the bpi but it ws the meds. After I ran out and had my dad driving round looking for a 24 hour pharmacy with me in the car screaming with pain I decided something had to change and I gave up the meds. I honestly found the pain easier to deal with when my head was clear-within 3 months I was back at work and I have never taken anything for it since, except cannabis when the pain is very bad. Cannabis does not have as many unpleasant side effects as most pain meds, although in lots of places obviously it's illegal.
I wish you strength to deal with this, it's just so horrible when it's bad that you can't see a way out, I've been there. Hang on in there I wonder if it would be worth contacting Senator Bob Dole, he has a tbpi from wartime and might be able to point you in the direction of people who can help.
Take care and all the best
Jen NZ

Thank you Jennyb. The thing is my arm muscles are rock hard and have been the whole year. It's like the worst pulled muscle you ever experienced. I would have to say it is my hand that hurts the most though. I go through a whole range of symptoms from burning bad to absolute crushing. When I remove my sling, aside from the obvious pain from dislocating my shoulder, my and hand seems to swell up because I cannot raise my arm. Perhaps if I could put my arm in a pulley I could exercise and strengthen my shoulder. Of course I would have to work through that pain as well. I haven't been able to properly exercise my shoulder since it was fractured so I have no idea how that would work out.
I have tried cannabis a number of times and I admit it certainly does what is expected. In other words I felt liberated to the point of extreme silly. Like Peter Max in a kaleidoscope. In the end though I always came back to where I am. I used to be left handed so as a challenge to myself and because I am learning to be a right hander, I am freehand drawing as a mental and physical challenge. I won't ever go so far as to say anything I've done or will do as being even good but I do see from a different perspective now. For what it's worth...
Thanks again,
Scott

Scott,
I see that your injury is from a spider bite and fall. Has anyone looked at the BP injury? Have you seen any BP specialists? Just wondering if the nerves are stretched or torn? Therapy seems like it might be good for you also. The OT's should help you with ways to do everyday living things and PT would also help I think. Most of the people with injuries are doing one form of OT or PT for some time. My son was in therapy until they felt he wasn't making enough progress to contiue. But, hopefully when he has the muscle transfer he will be back with a moving arm.
Sue

No. I have not seen (or remember seeing) anyone close to being BP smart. The nuerologists passed me off to pain management who released me to General Medicine once we reached a medication regime that didn't have me going around as a zombie. As a matter of fact I don't go around at all. Here is finally something to laugh about, I still have sharp blinding pains through my right hand and when I am out and in public I yelp out loud and it freaks people out becuase as fast as it happens it goes away and I cary on un-assuming. I think it's funny. It hurts but it's funny.
Back to your questons though, I'm not being followed up by anyone.

I am so glad to here that I am not the only one that gets those stop you in your tracks sharp shooting pains. When I get them they can go on for numerous hours. Topamax 100 mgs twice a day stops them. I take them for a very short time because the side effect I get if I take them for to many days is my good arm develops a painless spasm. I take the Topamax for two to three days tops. That is not to say that anyone else would have this side effect. I just know that I do.

Janelle

Sorry to say, but the pain does not go away. I am two years post accident and one year and a half post nerve transplant. In time you will learn to live with the pain, and at times the pain will be close to unbearable. Stay busy to keep your mind off the injury. And inquire about sleep medication to help with restfull sleep. Take care