United Brachial Plexus Network, Inc.

James, don't let the hospital have yuou play the wait game. Get some money and go to the Mayo clinic and have them check you out. I played the wait game and found out if I had surgery 3 months earlier, I would've had best results. There was a girl here months a go that I read she did the wait game and her surgeries didn't work. Her thread spanned 2 years and it was a diary of greatness and then sadness. I'm not saying it will happen to you, but just go to the specialists of all specialists, the best of the best, not a bunch of guys that just read what brachial plexus is in theior medical journal.

What's the worse that can happen, they tell you you're fine and you spent some money. I understand, money can be tight, but it's the future of your life.

Sorry if I sound harsh, I really am sorry. I just want you not to go through what I'm going through or what anyone else here is going through.

EDIT: BTW I had my motorcycle accident @ 2:10pm on July 10 2005. So I can somewhat relate.


Message was edited by: peter g

Hello there!!!

Your injury is almost identical to mine!!!

My initial post is at http://ubpn.org/messageboard/thread ... 222#114222


Basically now (I had exploratory surgery in August 16) as all my arm started showing repair/healing except bicep + delt/shoulder. My hands/forearms were were almost 100%, I can hardly move my arm from hanging, side to side is very hard, tricep is great (behind back, above head if I sit in a good position). Now my shoulder is subluxed fairly bad, I need an AC sling/brace to help keep it fairly back in place. I went to see a public hospital here (have been in private, Australia) for a bit but recently found out a public hospital near me is holding monthly brachial plexus support group meetings, almost a first for Australia. I went in today expecting to set up appointments to go but the doctors there want to operate on me. Was a semi big shock to me as I was 'going along' thinking what I was experiencing was kind of expected for my injury.

I have a run down of todays experience at http://wazza.livejournal.com/118973.html
Be warned of language, I was fairly emotional about this when posted, I still kind of am. I have had mogadon (sleeping benzo tablets) to help me 'sleep it off' and see how tomorrow goes with regards to feelings.

I'm expecting grammar to be poor atm as this is VERY rushed but I just had to post when I read your thread.

Also some pics of how I am as of 2-3 months ago at http://s82.photobucket.com/albums/j250/undii/injury/

I've been somewhat busy trying to get life back on track so haven't checked on here much due to physio/medical/day to day things. I'll be a regular again here now as I'm taking a step back and taking a big hard look at my present condition, not in a negative way, just to see my options.

Peace and love to all, may the healing be kind as much as it can to you...

Oh, forgot to add.

Surgery in Aug 16 showed Scar Tissue blocking C5 , stopping signal to bicep + delt. Surgeon cleared it, got a faint signal in nerve testing so he left it at that and we're hoping for a natural recovery. Next Nerve Conuction Study is due in Jan and I see him for results 2 days after it. Todays thing was a big shock but anyway, sleeping pills now to help me get sleep now kicking in.

Will post more in future, ask away with any questions if you have any.

My thoughts are with you.

They didnt say why they thought they needed to operate or what they intended to do to you?
I think the scar tissue or a hematoma compression is my prob. On my first MRI I had so much blood behind my clavicle they thought I ruptured a artery. There doing a MRI on the 6th of Dec to rule that out. I'm not having to good of luck with the military doc's on this one. I have been in for going on 10 years and I love the military but tricare and navy's protocol in reguards to this type of stuff is just crap and will probably cost me a arm and a career. These doc's will willingly admit they nor anyone within the command specializes in the injury however they will not refer me to somone who does.

I wouldn't wait for their referral then. I would call a specialist and set an appointment. May cost you some $$ but may save your arm and/or career.
Sue

Ouch Wazza. It's so different when I see it on someone else. I've seen my shoulder like that for so long and I hate it. Seeing it on someone else leaves me without words.

The scar I have on my neck isn't up or down, it's more like someone took a knife and cut my throat from the back of my neck to my adams apple. Thats when I landed in the drivers window. The window is what cut my neck. The doctors, not even the guys at the Mayo clinic couldn't tell if it was avulsed or cut since there was so much scar tissue.

Swimmer- Just give the Brachial Plexus clinic at the Mayo a call. She(I think her name is Judy) will give you a fax # so you can fax your MRI results as well as any other pertinant medical info you have. She hands it to 3 Specialists where all they do all year is Brachial Plexus injuries. When I was out of surgery, I asked Dr. Bishop how many of these things does he do? He said about 3 a week. He's been doing this for 19 years.

If they deem it necessary to see you, they will set up 3 appointments:
1st day- tests
2nd day- more tests and the 3 Surgeons will discuss the results with you and what possible treatments are.
3rd day- "IF" they deem it necessary for surgery, thats when you'll have the surgery. My surgery was on a Friday and was discharged from the hospital on Tuesday.

(507)538-1988

They will answer all of your questions, every single one.

Just see the best of the United States in regards to Brachial Plexus injuries just so you know really whats going on and what to expect.

Sorry if I sound pushy, I wish I found this site 3 months before I did. I'm in NYC and you figure a big city would know about these things. I was told to wait for 6 months, then I was told "there's nothing we can do".

That doctor at the hospital in NYC couldn't refer me to anyone either. So I searched myself. I found a few surgeons, but went with the Mayo clinic for many reasons.

Here's your referal:
Call
Fax
Wait for a call.

swimmer15:

The surgeons told me they wanted to operate simply because of the muscle wastage in my shoulder and scapula areas. They would do something to get my arm to possibly flex on it's own but I would lose "doing a chicken flap" movement. I've booked in to see the specialist who did the exploratory surgery on me in August for this week. With the public system here in Australia, every doctor session I found basically was very clinical and they don't explain in 'human terms' on what happens just that "We plan to remove this, replace that, fix that" kind of things. As I said, I only had planned to go to these people to join a support group for people with BPI.

Hopefully the specialist will give (good) advice stating that they are correct in his eyes on prognosis, or a bunch of idiots or whatever. I was a bit freaked out for the past couple days since it happened but I'm starting to realise again, the initial prognosis can be so far off the mark it's almost laughable if I wasn't in the state I am in (said with a smile)

Thanks for replying, it's great to see people willing to help out others with this. I've lost a lot of social contact and I've lost vast interest for internet forums mainly due to the pain/hassle it is to type. I'm ok now as I am in bed @ 5am on my laptop on my belly/knees and typing is ok in this position as my right elbow is on the bed and I am typing with both hands for once.

James, forgot to mention, with regards to running, I will get my girlfriend to take a photo of my current AC sling that allows me to walk/run without being in chronic pain. With my subluxed shoulder, the bouncing of walking/running just played havok with my shoulder, even with a 'standard sling'. I saw a specialist orthotist who deals with these kind of things and we worked out a brace that holds my shoulder + arm in place fairly well.

Best of luck with your healing situation. I'm getting some test on my diaphragm this monday and an EMG on Tue to see my current state with my scar tissue removal in August (16th).

peter_g: Much appreciation for the reply, I am sorry to James for the hijacking of his thread but I am so in awe how his situation sounds so much similar to mine and I had my latest surgery in same month of his accident. I hope you fair well with your healing! I will start a new thread regarding my current situation now so James can have everything for him in here

James, the people here are very helpful and always seem to want to give as much help as they can. I come in here when I can but there was a transition to a new domain a bit ago and during that period I had a few big things going on with healing so 'lost touch' with here. I'm making sure to start being a regular here again, either with reading and/or posting. Ask anything you want here, people will do their best to help if they can. Welcome to the club nobody wants to join to use the phrase that was also said to me initially. *many thoughts with you*