Need help

[Princess]

It must have been so disappointing for the serul nerve graft not to work. It hurt me to read it. What chances did the surgeon say you had in getting any/some return? How long after ur accident did u get surgery done? I'll pray that the intercostal surgery gives you some function back. If you could do it all over again (surgery) would u do it? I guess I rather know if its going to work rather than not to take that chance & wonder "what if" in the future.

[Princess]

Thank you Pamela. Ur sons story gimes me a glimmer of hope. So he got some shoulder (feltoid) & bicep return, that is fabulous! I'd love to not have to wear a sling so if the surgery gives me a chance to improve shoulder function & discard the sling, it'll be one step forward! Is he able to do anything with his arm at all or is the return too minimal? How are ur sons legs now post surgery? Is the scar and pain very bad? Since he got some return I'm sure it was worth it, some is better than none. Its all about sacrifice & the risks we're willing to take. We wont know if we dont try & I'm one to want to try & find out. I'll be posting my findings soon on the 2nd specialist I'm seeing this Friday.

[Princess]

Hey Kev. Once I compare the notes from all 3 doctors, I will make a decision. If I have a chance, I know myself enough to know that I'll be willing to take it. Something is better than nothing! I feel like I'm dedicating my life to desperately find a way to get the function back in my arm. Not sure if thats healthy b/c its really stressful & painful but I owe it to myself to try my very best...We are survivors!!!

[Princess]

Thanks for the info, time is running out so I need to sign up for this event ASAP. So its free to make an appointment w/Dr Nath, get professional advice & be evaluated there? I remember someone mentioning this to me, I'm happy u brought it to my attention again, I didnt realize that I only have a week left. I'll see who can go with me & get back to you. It'll be nice to meet you & Nancy & know other adults who can truly understand me...

[lizzyb]

Hi Princess...I have emailed you but in case you don't get it, have a look at the TBPI-group message board; you will find plenty of people there who can answer many of your questions since they have been where you are now and had the surgery you are contemplating. You can ask your questions there too and get a broader range of answers. Between us all we have years of experience (unfortunately)and should be able to give you even more ideas and food for thought. The link directly to the site is http://pub28.ezboard.com/badultswithbra ... usinjuries and just click on the General Help and Support forum. I expect you have had many people email you, but it certainly will help to get as much info from as many people who have this injury as possible. Liz B :0)

[Princess]

Thanks Lizzy. I'll check it out!

[sarmstrong806]

Its hard to say really what the best approach to take is. It seems like its all a gamble on the nerves growing. I really wish the seruls had either worked or not been used, because its discouraging when other Doctors use a different tone when thet say , "And BOTH his serul nerves have been taken" . I ca't really say what my outlook is, but we do have a rough plan. The first step is to clear my blocked subclavian vein. They want to get better bloodflow to the arm because muscle transfers are in the works. I'm not sure exactly what they want to take but there are at least two transfers we discussed, probably to the bicep and forearm. Also, if my intercostal transfer doesn't take theres a possibility of taking the entire ulnar nerve from about the pinky I guess, and using that to route nerve growth. It all seems sketchy, as I've had 0 improvement over the 2 years since my first surgery, but I know they are trying their best. My arm doesn't really bother me much anymore, my pain is gone, and everyone is used to seeing me in a sling, although I tear one up every couple of months . Sometimes I just think about what it would be like if I didn't have my injury, and I can't picture it, my injury is so much a part of my idenity, and who I have become as a person. Good Luck, and let me know how you are doing on down the road.

Sorry for the late reply, College is testing my time magaement skills

[francine]

Princess is this the link you needed? http://www.injurednewborn.com/tristatemuseum1.html

[francine]

oh sorry - I just found that you already got the link...lol

[admin]

Princess,I'm not sure what to say in this regard but I feel that everyone on this board understands what you are going through. I had a long talk today with a "real live" tbpi veteran, the first such since I was injured and the truth-- according to him is- "all you can do is go on" It won't do you any good to dwell over particulars or percentages, the guy told me what I will tell you,- "make a decision and live with it, don't look back". That is what he has done for 15 years.
I believe that there is no "right answer",for us or for the medical community and "we, such as we are", will all have to play this game out the way it was dealt, regardless of what our doctors say.
I want my arm back and so do you, the truth is that is not going to happen, our lives are completely changed from what they were one second before we were hurt. I believe that it would be best for us not to predicate our lives and decisions on what we were, but on what we are.
Onepaw