United Brachial Plexus Network, Inc.

hey all,new to this site, my injury happened 16 months ago, setting a 14"stopple in a cooling H2o line.I have function from the elbow down on my rt arm, my deltoid,bicep,supraspinatus,teres major,and minor,traps and lats on rt. side are affected can lift my arm to the 70clock position and slightly above waist height, cannot achieve bicep curl unless in pool. Have been to ortho neurologist,neurosurgeon,rehabilitive doc in the past 16 mos.last oct 31st rehab doc declared me @ maximum medical improvement,then let me sit for 5 months without seeing anybody,when the rehab doc first saw me he said he hoped i would make a spotaeneous recovery. i know now after reading this forum that attitude was the worst thing.The insurance company sent me to another ortho in charlotte,nc last week for a second opinionDr. Perry was the best so far,he made it a point to tell thr nurse case mgr i need to see a BPI specialist. Ijust found this site on saturday and saw a thread about Dr. Li @ Wake Forrest i made an appt with him today for may 4th until they found out it was workers comp i was even willing to pay out of my pocket to see him,now i have to wait for the ins rep to approve it.AAAAAAHHHHHHH!!!!!!!! I am so pissed off now, how is this even possible? All they have done is delay,delay,delay.16 months!!! REALLY!!! Thanks for letting me vent.

Dr. Li at Wake Forest University is EXCELLENT! I owe so much to him. He did my nerve transfer. I am doing so well with the use of my arm now. It is not where it was (Obviously) but it is so far from where it was I can't begin to tell you. I am scheduled May 1st to have a muscle transfer done by Dr. Li.

I have been to the Mayo Clinic and they were impressed with his work. I have the utmost confidence in him.

I will say that I wished you had gone to see him within 9 months of your surgery. He will still be able to help you but he could have made even a bigger difference then.

Keep your chin up, you are in GREAT hands. (Ask him to repeat what he says if you don't understand him. He does well but you have to listen on purpose.)

Best of luck!
Jeffrey Jones

PS - give Dr. Li my regards, He knows me well.

hilltop, i talked to the nurse case mgr today and she said she will submit the names of the BP specialists to the insurance rep, which will include Dr. Li also the clinic in Texas,the Mayo clinic,and also Duke university,so right now it's still a waiting game May 2nd i have an appt with my current Docs asst to review my pain meds(the same one who was hoping i would make a spontaneous recovery) i harbor no ill will towards him i would just like his reasoning for thinking i would not make a candidate for nerve transplant,could it be because they think the nerves are stretched versus being torn? i would like to thank you hilltop because of your posts are how i found out about Dr, Li I would also like to thank everybody else on this site, browsing through the past threads i am learning a lot of good info.Now i dont feel so alone and my compassion goes out to those who share this injury.especially spouses and family.without my wifes support i dont know what i would do

Thanks. Bull

hey bull, i sent you a private message.

Happy to help Bull,

Email me with any questions, I'd be happy to help. This site served me well in my beginning steps with this accident. I am sure the doctor felt your nerves were stretched and not avulsed. The sad thing about this injury is that there is an ignorance permeating much of the medical field. My initial doctor at UNC Chapel Hill, the place I was life flighted to, told me to be patient. I started reading on this site about TBPI and read that the first 8 months were crucial. I tried, as you are, to get my insurance to OK me going to the Mayo Clinic. Of course they rebuffed. I decided to just pay my own trip there and meet with Dr. Skinner. I finally found, in my insurance channel, Dr. Li. The rest is history. Nerve transfer successfully and in 2 weeks, after 4 years of this injury, I am having a muscle transfer done.

I wish you the best of luck. Time is of an essence.

Keep on keeping on, there is a GREAT life ahead of you. You will be surprised how your body adjust and you move forward in life.

Jeff

jmar i pmd ya, hilltop what gets me is i told dr. lis office when i talked to them iwould pay for the consultation myself out of pocket their response was because it's workers comp related and because of the rules of the hospitalthat they could not allow that. On a different note, ive been looking at different shoulder braces here and on google the saunders sully shoulder stabilizer in particular does anybody have any experience with this one in particular?When i rotate or shrug my shoulder i can feel and hear all sorts of popping and grinding noises,my rt shoulder has lost so much muscle mass it' little more than skin over bone right now. When i sit or stand without this shoulder supported for more than 20 minutes now i start having a deep ache behind and under the scapula this shoulder stabilizer looks like it woud give me the support i need. I took a two week hiatus from my workout/rehab/pool exercises due to the kids dentists appts and my appts,when i got in the pool today to do my ROM exercises i noticed they were much more difficult to do,also within the last couple of weeks when this shoulder is unsupported it startstrembling and ive noticed yhat my arm is noticeably weaker i noticed in a past thread somebody asked how long a muscle will survive without impulses and somebody replied approx 2 yrs is that correct? I apologise for all the questions in advance i also realize everybodys injuries are different So again thank you very much .


Bull

if i dont excercise my hand at least every day, it gets very stiff and starts to hurt really bad. so i guess we are "doomed" to do excercises every day for the rest of our lives. lol. as for asking questions, ask as many as you want. someone will give you an answer. if there is an answer. as carolyn says, there is no such thing as a dumb question, except the one that has not been asked and you dont have an answer to. as far as the 2 year thing, i somewhat agree with that. every one is different. i had to wait 14 months for my nerve transpositions and tendon transfer. my muscle was already deteriorated and starting turning to fat. luckily, i was in therapy and told to keep passively excercising it till my nerve started healing up. if i would not have been doing those excercises, i may not have had the positive results i had. it was almost too late at the 14 month point. that is why we all say get something done ASAP. and while you are waiting, DO NOT SLACK ON EXCERCISES. as you have already found out. excercise!! excercise!! excercise!! if you dont keep up the excercises, you will regret it big time.

What is ironic is that other than my shoulder i'm probably in the best shape i've been in since i was a teenager. i was/am a field technician for an industrial svcs co. which required a lot of physical work in the field yet there was also a lot of windshield time driving to different states to complete jobs,which meant a lot of fast food while i was on the road.Before i started rehab i had ballooned up to 250# now i fluctuate between 225 and 235 my goal is between 215 and 220.I am also motivated to do things now such as the mud run sponsered by the marine corp. The timing has been perfect,last week when i was waiting to see Dr. Perry i was browsing through a running magazine in his office and read an article about the mud run,a couple of days later i was browsing through some threads here and read about Dan(i think) doing the same exact same run,coincidence ? maybe, however i think there might be a higher power at work.Before the incident traditional archery was a passion of mine(recurve bow) i thought i might not ever be able to pull a bow again now i'm doing research on one armed archers, looking at how to shoot rifles with one arm etc.I guess the long winded point being trying to find ways to accomplish things my 60 to 80 hr a week work schedule in the past would not allow, Thanks Guys Bull in NC

I am retiring to Lake Norman , Nc
Tom

when we first moved to NC some 16 yrs ago we lived at Lake Norman,now we live half way between Charlotte and Asheville,.when you make it out this way Diver let me know and i can show u around the area if your not familiar with it.My wife and i are discussing the possibility of moving to the Wilmington area(we both miss the beach)

Bull