Need help

[Princess]

Hi all, my wonderful world of people who can truly feel, relate, & understand what we all share in common. I know I've been away for a while now. Honestly, I think I made my main focus to be distraction from thinking and/or feeling. Its so much easier to go out, party, hang out w/friends & not hurt yet another day living this way. I feel so ungrateful when I say this. I know I'm lucky to still be here to see the sunset as some pointed out. Its true & I do realize this. I think its just hard to get over the emotional pain of how much life has changed. From one second to the next, its unbelievable how quick it can change & how much one can lose. So here is where I am right now. I'm not going to try to fix something that I know there is no cure for, so no corrective surgeries neccessary. My biggest issue lately is wearing my sling everyday. Pretty soon I think I may hang myself with it, lol, joke people, laugh with me So I'm starting to strongly consider the following b/c I am in NO WAY considering, accepting and/or ready to amputate. I just can't fatham that idea. I do understand the benefits, but I know I can't handle the physical deformation & emotional pain that it'll leave me. Think about it. I wear a sling everyday & I can barely stand that any longer, looking injured, feeling injured, being questioned & receiving attention that puts a spotlight on my injury. No thank you, I just want to be left alone but that wont happen so I just live another day trying not to wring someone's neck, ha ha. Ok seriously, this is what I'm considering since I'm in no way, shape or form ready to think about amputating anytime in the near future. Since I have sublexation (my shoulder joint was pulled out of the socket so I have an inch gap) I'm not allowed to let my arm hang b/c the gap will increase & get worse. Thats why I need to wear my sling. My shoulder needs to be supported. Also, my arm falls to the side abnormally. Instead of my palm facing my leg, it faces behind me, so when you look straight at me you see the front of my hand instead of the side of my hand. So I'm thinking of getting surgery just so I can let my arm hang by my side & never have to wear the dreaded sling again. I know its all for show & just to look "normal." If I do the surgery they can close the gap, rotate it so my arm falls normally & thats it. I'm not trying to fix the unfixable. I'm simply just trying to live with it & not have to worry about carring around a sling. I prefer to have my arm by my side. I think it will help me heal emotionally & physically b/c I wont look injured & feel so abnormal. I know there's nothing to fix our injury so as long as I have a way to keep my arm, not amputate, & look close to how I did before, that would be the goal. Thinking of surgery makes me nautious & completely emotional. I dont know what else to do anymore. I dont want to chase around a cure that doesnt exist. I just figure since I want to keep my arm, I'll need to secure it somehow so it can stay to my side. I'm not a very active person so I'm not worried about it really getting in the way too much. I know it will but I'm willing to deal with it b/c I'm not willing to part with my arm. You know, I read some comments & the words most of you wrote made me cry like a baby. Its like some of you took the words right out of my mouth & put it in writing. About looking at my dead fingers & feeling the loss & pain, sooo true. I miss my arm more than anything in this world. I know I'll never have it back again. I just need to find a way to live with it & this is what I've come up with. Comments, ideas, suggestions, are all welcome. I want you all to know that I value your thoughts. We're all different & whats right for me may not be right for another so I may not agree with everyone but I do value & appreciate what you all have to say. Words have incredible power. Thank you all for touching me with your words & contributing to my healing.

[Lindakids]

My dear Princess, my son got his tbpi 8 years ago while in college. From all your messages that you wrote, your injuries seems to be very simular. Today he is 31 and doing well. A little hard to believe? We did the whole thing. After he came out of his coma we took him to Dr Kline at LSU Medical Center and Dr Tiel with him. He said not to put his through it, it wouldnt be successful to the point of being worth it. So we went home and he wears a sling and got back into life. He finished his college degree near home and is working at a job he really doesnt like. However, he has accepted his arm, the way it is now. Now me on the other hand has found this board and driving myself nuts!! Now I want to rethink everythng. I know time is important and its been 8 yers but some are saying it still is an option. John doesnt seem to interested though. He said he is more interested in working on his career and continueing on with life. He said he doenst even think of his arm anymore. He does everything without it. He wears a sling and it doesnt bother him. And as far as looking different? In his own words " i have found out that the only ones that really care about you are your family and I could give a rats ass about what the others think." He works out his other arm, walks 6 flights of stairs up and back 20 times 3X a week at the Dolphin's training camp garage with a weight belt around his waist. so Princess...life goes on and you will accept. Hard for me, his mother. I think he has accepted it much better than me. i know he has. Best of luck and I will pray for you.

[Susana]

Don't take me wrong, but I think there is hope for people even when they have root avulsions. I think the problem is if they wait too long to make a decision to have surgery. Also, from my experience the EMG is not a conclusive test they really have to do the surgery to check what is going on.

[Princess]

Thank you so much for your reply. It brought tears to my eyes as most replies on this board do. I agree with your son, I also could care less about what other people say or think. This has nothing to do with them, its about me, my self esteem, image, & repairing all of whats been damaged mentally & emotionally. I feel like this helpless, injured girl walking around with a sling on & along with all the attention it receives, I really dislike it. I prefer to be ignored & left alone. I just want to feel normal again & maybe if I look normal (no sling, no injured look) then that may help me cope emotionally. I just want to weigh all my options & feel like its too much of a nusiance wearing a sling or carrying around my arm at home. If it could just fall to my side I think it would set me free in some way. I have an appoitment this Wed & will discuss all my options then. I'm not trying to fix what cant be fixed, just trying to make this injury as convenient as i can, if that makes any sense. I much rather not have to carry around my arm b/c that puts my other arm in use & makes it more difficult to do things at home where I dont wear the sling. i just dont know if I can continue wearing a sling forever. It ruins everything, how I look, the nice tops or dresses I wear. There's a lot more of course, but you get the pic. Either way, I'm very proud of your son. Just knowing that he accepts it, is over it & has moved on really inspires me. I hope he's proud of himself too, he should be! Thank you for sharing. Its always very much appreciated & means a lot to me

[admin]

Hi Princess,
I was 21 when I had my accident in 1979 (in a powerboat for a change), I'm also female. I have avulsed C5 C6 but I do have use of my hand, albeit with no accompanying arm movement, so I appreciate I am luckier. My shoulder is totally 'out of it's socket'. I haven't worn a sling from relatively early years. I can't remember exactly when I stopped, but I suppose after a year or so. I also had a brace fitted but I very rarely wear it, I'm talking probably 10 years ago last time I wore it. If I don't consciously turn my hand it hangs like yours, but I don't consciously turn it so I must have got used to it!
Rather perversly, because my hand looks relatively normal and sometimes moves, people don't realise I can't use it and therefore don't know I'm disabled and therefore don't understand or help as they would otherwise. I'm not proud, I will take help graciously when offered.
I haven't read all your thread so I don't know your situation re kids, no problem though, they adapt. My baby used to turn onto my good arm to be picked up. I can't pick up a normal baby because they don't respond in the same way. They soon learn that Mummy doesn't pick up when they're toddlers. Actually that might not be an issue, I have a residual dislocated spine from the accident so I don't lift and carry. And you will find your higher pain tolerance helps, BPI pain is more intense than contractions! Plan ahead and get a TENS box so you don't have to take meds during pregnancy, if possible.
Enjoy life.

[Princess]

As I informed you guys, I had an appointment with Dr. Wolfe about a week ago. He examined my arm & told me that the sublexation is almost gone. The very slight movement my shoulder regained (just a few inches out) means that certain muscles are working therefore keeping my shoulder in place. He gave me clearance to not wear the sling & said that surgery is not neccessary. I cant begin to tell you how pleasantly surprised I was. It took a while for it to absorb and I think I asked him the same question 10 million different ways to make sure surgery is not needed & that my arm will be fine sling free. He said it should be fine, just to monitor it & make sure I dont get pain. Other than that it wont cause further damage. Thats the best news I've heard in a long time. I left the hospital sling free & have been keeping it off whenever I'm not at work so I can get used to it. Its very strabge & will take time. Just like everythig else, its a process. I have begun the process so it can only get better. I LOVE that I have the option to wear it or not. If I'm active for instance, dancing, working out, then I prefer to wear it, but for every day use I can do without it. I still wear it to work b/c everyone knows me there & I'm still not comfi with it yet. I also dont want to be questioned. Soon enough though it'll come off for most things & that will be great! Now I need input from you all. When leaving your arm by your side, does your hand turn red b/c all the blood rushes to ur hand when its hanging? I know someone who has this problem & am not sure if its a case by case basis or if this happens to most people. I notice my hand turn a bit pinkish red but its not too bad or noticeable. Please share your experiences & tips. I'm sure it'll help me while I learn how to leave my arm by my side w/o using a sling. As always, thank you for your concern & words

[jennyb]

Hi Princess, don't know how I missed this post way back in Feb, but I hope you're still ok! Great news indeed! It may well be that you've had enough recovery since then to not even think about coming here any more, I hope so....
but in case you do, please don't worry about the hand going red (or purple, or black....mine has shown all of these) it's just the blood pooling in the lower part of the arm because you're not moving it. When I first started not wearing a sling I used to hold it up with the other hand every now and then until the blood ran out again, now I think I swing my arm around enough that it's not so much of an issue.
Take care and let us have an update if you look in here again :0) Jen NZ

[motoxxxracer_34]

Hi ihad the same injurys and some more, I am 21 to happen right before 20th bday. I would giveyouinfo, but from the looks of this topic it said last post 2003

[admin]

My Name is Shailesh Naik and i too suffered Nerve injury in Sept 05 and thereafter i was operated by Dr. Mukund Thatte at Bombay Hospital on Nov 14 05 and since then i have been recovering. My injury was on the c5 & c6

Regardss

Shailesh