United Brachial Plexus Network

OK, I'm curious...I'd really like to see people post their history...in a nutshell. I really think it would help everyone to understand the injury, what helps and what does not, etc...etc...

I'll start....

INJURY: 10/29/96 BPI riding as passenger on a 4-wheeler nerves stretched...on border of avulsed

SURGERIES: *Explatory in 1998 to see if nerve grafting would help...UH...NO *Implant of spinal cord stimulator in 2000 and had to re-do it once to see if it would help...UH...NO Current pain doctor wants to try one more time...UH...HELL NO...

MEDS: Neurontin 800mg 4xday, Effexor 150 mg 1xday, Lortab 10 4xday. I can't live w/o them.. neurontin is helpful...effexor really helps w/depression as well as pain, and lortab sux but he won't give me nothing else!!

I am currently contemplating amputation at this time. Why keep this dead ass thing when it was gone on 10/29/96?!?

Everyone that reads this, please post your story and what has helped you the most or what you think sux the most.

Love to all my BPI brothers n sisters!!!!!

Amy

Kathleen, Woodstock Illinois
Accident Aug 12, 1987 @ 17 yrs old. On the back of a motorcycle. Boyfriend died from the accident.

1988 Exporatory @ Mayo Clinic. Found c5,6 &7 pulled out. Nerve transfer, from my left leg to try to save c6. Failed.

1988 muscle transfer @ Mayo. My tricep became my bicep. Had to re-train my brain to think to straighten when I wanted to bend. Success!!!!

1989 4 expanders inserted to my back, arm and collar bone area. 12 weeks later implat inserted to "fill out" my arm.

1989 expander fell off shuolder into arm, relifted.

1989 expander fell again, removed. Expanders placed in again, implant made smaller.

1990 new impant reinserted

1990 2 weeks later, implant fell again

Took along rest.............got married and 3 children

2003 back to Mayo for pain. Neurontin 8 pills 2x a day. I could not function, any less amount and pain was still there full force. Weened myself off, which was extremly difficult.

2005 John was born (#4)
At this time I still need at least 2 surgeries. A new implant which my doctor @ Mayo will make out of Gortex and I need my shoulder fused. John is 9 weeks old and I have time for these. Funny, when I was pregnant all 4x I was NOT in pain. After John was born the pain came back harded and more often.

Kathleen

Hi amy
There is a page of profiles on the UK website http://www.tbpi-group.org/ it's in 'Community' which you can reach by scrolling down a wee bit, on the left hand side. Mine's in there so I won't add it again. See also the 'Roll Call' thread which is a bit cumbersome, but it might be worth contacting people who posted a while back and getting an update.
Good idea for a thread!
Jen NZ

Jenny...

Thank you so much for your response. Yeah, I've seen the roll call thread, and have read thru a lot of it. The thing I was trying to do is create this thread 'short and to the point' where people describe how they were hurt, what treatment/meds they have used, and what helped and what didn't, kind of like the example I wrote. This entire site is fantastic, and I have spent maaany hours researching it, as well as links on here, but I thought if everyone could just sum up their experiences, in this thread, it would be really helpful to me as well as old and new members alike. Do you see what I'm trying to say?? Please let me know what you think...

Amy

Courtney 25 Ferndale, MI

auto accident April 01 (4 days after 21st bday) fell asleep driving, head on with cement barriers on interstate 85 mph, I lost! Broken vertebreand a RTBPI

Exploritory w/ sural nerve graph(9 1/2 hrs)Jan 02 in KY
C5&6 avulsed C7&8 torn T1 stretched (I have great hand function now)
Median nerve transfer Sept 03 TX (3 hrs)

Physio for 3 1/2 years.... currently taking a long needed break! Trying Botox for triceps, (to get biceps more function) Should get this next week, then starting Physio again to strengthen biceps before we do that gracillis muscle transfer.

hope this helps.....

COurt xx

James-age 12 from NC.
RTBPI - 4-wheeler accident on 11/22/2003.
1 surgery to date, nerve grafting.
Currently doing PT/OT and e-stim.

Caralyn age 14 sledding accident with a utility pole. Believe it or not her Brachial plexus injury was the least of her injuries.
RTBPI- 01/14/2005 c5,c6,c7,c8, &t1 avulsed along with various other nerves that she injured for her ear, eye and lung.
surgery 01-15-2005 to determine how much damage and to see if they could repair her artery to her arm. no go.
surgery 03-07-2005- Mayo clinic- transferred nerves from legs to try and get some shoulder stability and possibly some bicep movement. So far nothing is happening. They were able to repair her artery to her arm.
She is currently off of all medications. Very rare that she has virtually no pain except sometimes a phantom pain in her "invisible arm" (Does anybody else have an invisible arm?" When she was first coming off her pain meds she used to talk about a third arm that she would try to find and touch.

Hi all,
Chase (age 7) LTBPI motocross collision w/adult rider 3/6/05. Surgery 6/23/05 w/Dr Belzberg @ Hopkins: nerve xfer spinal access. to suprascapular,c5&C6 multiple grafts,c7 unsure,c8&t1 avulsed (sunderland grade 4,5 injury). Neurontin 200mg/3xday. Will likely require muscle xfer in future.
Lourdes

Keith LTBPI now 21
Accident feb/14/2004 Glamis, CA heli to palm springs

Accident rip auorta artey from heart, broke every vertebre in neck, punctured lungs, broke all the ribs on left side (thet believe that how some of the nerves and artery was tore out). I dont remember which ones exactly i think it was c1-5 t1-3 avulisons (not sure if those are the right ones, i will look in my reports, i was never told which ones, but i remember reading it awhile back, these just said i had rip out 3-5 major trunks of nerves from spine),

May 2004 nerve graphing standford hospital dr hentz, took nerves from left calf-ankle and left chest, repair some nerves from neck to shoulder then houlder to elbow. Dr said he hoping for 70 degree movement in shoulder and possibly elbow. Its been a year i can shrug a bit and have some feeling in certain areas above elbow on arm. They said i will never get anything past elbow, but i dont listen to drs.

I take 20mg-4x methadone, 1200mg-3x neurontin, 1500mg-3x keppra, 400mg-1x celebrex, 10/325mg-4x hydracodone, 20mg-1x despramine..still does not help

Have been consdering implant stimulator, was suppose to get it last march but turn 21 and lost insurance, now having to see all new drs to try and get it started, but not sure now becas of the 50% chances of good result and all the sideeffects.

Very iterested in hearing more about the tendon tranfers, do you need to be at a certain stage of results? does anyone wear fancy braces? what are you reasons for amputation?

oh my accident was on a dirtbike crf 450 fastest on market, dirtbikes were my life, lived and breath it, race, freestle, and sold them as my job in vegas. Went to glamis for presdents day wknd, bes friend and i were jumping a 90ft gap doing heelclickers (extremely dangerous), we left our cameras at camp so him and i rode back, he stop at camp but i stayed in a wheelie at 50+mph for over half a mile only to hit a 4 seater sandrail head on (a car for sand made out of steel roll tubes) hit front of sandrail with bike, then flip 180 degree hit 1st roll cage, then another 180 hitsecondroll cage, hen another 180 landed body up head in sand unconcieous. Luckily there was a fireman on vacation who got me concious and breathing, then they cut my jeresey off where they saw my chest turning blue, helicopter to palm springs where on the way i flatline for nearly 2 min.

Here's my shortened version.
Weird accident in street march 1993 age 41...2 tonne slab of concrete fell on me from a building site.
Massive crush injuries to chest, shoulder etc (13 smashed...and I mean smasshed...) ribs
Mashed scapula and collarbone on right hand side.
Men on site managed to lift slab with the help of a passer by and dragged me out by the only thing sticking out...my right arm.
Dragging out saved life but pulled all five major nerves of the BP straight out of spinal cord.
10 days ICU on breathing support, futher 15 days in hospital, 3 months recovery at home.
Exploratory surgery at 3 months where 5 avulsions were confimed.
Severe damage to phrenic nerve resulting in 30% less lung capacity right side, ribs set solid so less capacity left side too.
Nerve grafting to median nerve from 3 elevated and grafted intercostal nerves. This has resulted in bicep reinnervation and some sensation to forefinger and thumb.
Phrenic nerve problem worsened over the years.
Severe pain in early years. Drugs given were DF118 (Dihydrocodeine) 8 times daily; Ametriptylene 75m taken over 24 hours; carmamazepine about 3 times a day, but not for long as this partucular drug turned me into a zombie.
Weaned off all drugs after 6-7 years (BEST thing I EVER did)but am left with a very low tolerance of all opiates. They make me violently sick and I now have problems if I need anasthetics for surgery/dental treatment etc.
No possible hope of any further regain of function and I am truly alright about that, and have been since I was told this 11 years ago.
Am considering amputation now as I am getting severe pain in neck and shoulders...wish I had done it years ago as it would have been an easier decision then.

Hope this is all you want/need Amy...hope it helps.

Liz B