United Brachial Plexus Network, Inc.

Mike,

I look forward to what you have to say after you have your arm is amputated. The first few weeks are the times that you tend forget as time goes by. Yours will be just before mine. Knowing how you are feeling and what you are going through will help prepare me as to what to expect. Please post just as soon as you are able.

Good luck with your procedure. Know that you are in mine and many others thoughts and prayers.

Janelle

Hi Jamie

I am hearing first time good things from you. Because i am hereing here most of the people heres the surjery is not sucess.

I have complete TBPI (C5, C6 & C8) due to motocycle accident in Jan 2006. After the nerver graft surgery also still I have not regained my hand movement. Please give your ideas for next step

Where you are did the surgery and what type?
Who is the doctor?

I request you to give the communication details of doctors like mail id and phone number.

Ramesh

Hello all.

This is my post amputation post. I did say I'd let you all know how it went. Well here's a run down for all those that are interested on whats been happening to me.
I know Jannelle you will have a particular interest in this with your op imminent.

4/11/08 Arrived at hospital just after lunch time and got settled in. The rest of the day was taken up with different doctors and nurses asking the same questions, like what am I allergic to, do I have any health problems etc. Spoke to surgeon and discussed again regarding length of residual limb. My only concern is that I want to be fitted with a suction socket therefore the length is extremely important. I suggested he speak to the Prosthetatist I had consulted with. He'd give her a call and we'd discuss again morning of the op.

5/11/08 DAY OF OP. feeling ok not too nervous. Question myself again if I'm doing the right thing. Agree with myself that I am. I'm second on the list so have to wait until 11.30am until the trolley comes for me. Obviously starving as had to fast since midnight. When I see the trolley I get a couple of butterflies but not as scared as I thought I'd be. Took me to a small room adjoining the theatre to give the anesthetic. After injecting the back of my hand she asked if I was feeling sleepy. I replied 'not too ba zzzzzzzzz'.

A second later I hear my name getting called and being told that the operation is over. Unbelievable! They asked if I was in pain. I certainly was but more from my shoulder that was really stiff. They suggested I click a button a few times to administer morphene. Took 4 clicks and felt much better. Got me back in bed and I took another 2 clicks. 54 left if needed. I didn't take any more. However did spend the rest of the evening in great contentment. Morphene obviously worked well!

Didn't sleep much, got the obligatory bed bath that is always a joy. Next morning woke up in a lot of pain again from the shoulder. Spent quite a while moving it around to loosen it up and eventualy it got better. The Specialist nurse who has been in charge of my care pre op and post op came to see me and we had a chat about how I felt. (I hope that anyone going through something like this has someone like Beverley to help them through it as she was very special and helped me enormously) I wasn't sure myself. I was pleased it was all over and I was still sure it was the right thing but obviously the discomfort I was feeling tempered any joyousness feelings I may have had. She came back later that day to change my dressing which was a relief as the bandages I had on were extremely tight and started to hurt. When she took of the bandages, which hurt like hell, I got my first look at my arm. I was neither repulsed or happy with the way it looked I just accepted it was what it was. It did look neat and tidy with not very much swelling which was a good thing. Surgeon done good job. Now came the worst bit of the whole ordeal. Bandaging it again. There's a special was to bandage the residual limb in order to get the best shape for a prosthetic and it has to be tight. Now because I was stupid enough not to take any pain killers since I got back from surgery when she touched the arm it nearly put me through the roof. She sugested I take something and she'd come back in half an hour. Took 2 paracetomal which helped slightly but I still screemed like a 12yr old girl when she wrapped it. However started to feel much better once it was done.

7/11/08 Was told the previous day I could go home at any time, so I waited until 10am and left. got home a couple hours later. My wife was working until 5.30 so my mother had come over to see me. She's been having a hard time with this but now it's over with I she sees I've no regrets and very positive about the future she seems much better. Next was my 6yr old son Ethan. He took it all in his stride. He gave me a big hug told me he loved me and has been very sookie with me since. Great wee guy. I sometimes see him looking at me as he's obviously curious. My wife came home I was wearing a T shirt. First thing she said was not as bad as she thought. This was good as my wife has has reservations about this but hs been very supportive once she knew my mind was made up. She did say later that it did look a bit odd and it made me kind of lop sided. I also feel this when I look in the mirror but it has to be expected and it is something after time we will all get used to. A prosthetic should help in the respect to.

So moving on to today. Feeling quite good. Strength starting to come back. Pain fine. Getting less each day. O should have mentioned Limb/pain. Yes it is very real. Still feel I'm getting the usual prickly feelings I got in my forearm and fingers. I think it is improving though but I'm not sure if it will ever go away. It's great not having to worry about moving my arm out the way everytime I sit down or wrapping it up in numerous layers to protect it from the cold (that was one of the worst things for me is that my arm was always cold even in hot weather) All in all I feel positive I've done the right thing and I am looking forward to recovering fully and getting on with life that will surely be a bit easier for me now. NO REGRETS!

Sorry if I've waffled on a bit but I hope this may help people prepare if they are going to go for amputation.

If anyone has any questions I'll be more than happy to answer them. I'll have plenty of time as I'll be off work for few weeks more.

Jannelle I know you'll have yours soon and I hope it's as straight forwrd for you as it was for me. I wish you all the best. Let us know how you get on.

All the best to you all.

mike

Say onepaw and jennyb and all you other wranglers out there how's it goin for ya right now?
I just recently got all caught up on this amputation for the greater good and all I can say about it is we know what it's like, no one else knows. And to that I add only we know what is best for ourselves. Far be it for me to say yes Mike, yes Jenny it's what's best. For cryin out loud it is getting so much clearer for me now, now that Mike is postop, Janelle is preop and Jenny is no-op. Only we know. Only we can choose.
Now then Jenny, what do you mean when you get older you'll think of riding western? Damn girl stick to yer guns. Onepaw, I really don't know or understand why you think you can't ride now? This talk of riding horses(and drawing them ms b...) has got me foaming like I was rode hard and put up wet. Slap me with a crop while you're at it. When I was a youngster I was riding champion jumpers bareback in Groom's Competitions. I appreciate English Saddle it's what I learned in and I won't be so bold to say I was ever good at jumping but a jump is a jump. I loved every minute of it. I dreamed of moving out west and raising horses with a son. Well 30 something years later I live out west, I have three sons(32, 18 & 10) and I have not touched a horse or mucked out a stall since 1973. So I ask my self, why not? There is no reason nor an excuse. It has absolutely nothing to do with my arm so again I ask myself, why not? I don't know. I'll have to get back to you on that. I live in Texas for cryin out loud. Think I can find a horse around here?
Enough of my psychobabble rap. I hope I made a point or someone laugh. That's more important.
Peace and laughter,
Scott

I was riding a street motorcycle when I got ran into by a truck making an illegal turn and got my TBPI last month.

Last year we were riding dirt bikes at Highland Park Resort http://www.highlandparkresort.com/ and we met a really inspirational young man who lost his left arm in a street motorcycle accident and then started to ride dirt bikes. With a few adaptations to his dirt bike he rides better than most. A page about him is at http://brettcole.blogspot.com/2008/03/d ... orgia.html.

If he can ride an off road motorcycle well, what can't be done?

I am now 2 weeks post op and thought I'd give an update on my recovery for those that have an interest.

Firstly, the down side. A week after the amputation I started to get some pain like I used to get after my accident 23 years ago. You know the type, it's like a bolt of lightening firing down the forearm arm into your fingers. (doesn't make any difference that I no longer have a forearm or fingers - the brain can be cruel. This is becoming a complete nightmare as I'm in agony most of the time. At the time the pain started I caught a cold and therefore assumed the pain was related to that as that is usually the only time I felt the pain is when I had some kind of virus. However, it shows no sign of going away. Went to see the doc yesterday and she prescribed Amitryptiline, which is seemingly an antidepressant but is recognized as helping with neuropathic pain. If anyone else has taken similer I'd be interested to know how they got on.

On a more positive note I got the stitches out couple days ago and nurse said healed exceptionally well. no leakage, bruising virtually disappeared and not much swelling but there again there never was much.

Residual limb (stump)looks fine. Didn't take long to get used to it. even my wife and son are ok with it now. It does have a flabby bit at the end which shoogles when I move the stump. (not sure if shoogles is a real word or just a Scottish word - but I like it)May take a little time to get used to that, especially if I get back into running like I plan to do.

It does feel good walking around without the dead weight. I actually feel I now walk more naturaly. Also weird not having to move my arm out the way all the time. Although sometimes I do forget and reach for it but that's getting less every day. If the pain wasn't there I'd be happy as a pig in muck.

Well that's my progress so far.

All the best to you all.

Mike

I meant to say in my last post good luck to Janelle. I'm sure you are looking forward to it although I'd be surprised if you weren't getting a bit nervous!

All the best.

Mike

> she prescribed
> d Amitryptiline, which is seemingly an antidepressant
> but is recognized as helping with neuropathic pain.
> If anyone else has taken similer I'd be interested to
> know how they got on.

I was started on Neurontin yesterday which is an anti-convulsant that just happens to be good for nerve pain for unknown reasons. I've cut my narcotic usage in half or more so far so it is helping me.

I was offered the Amitryptiline but chose the Neurontin. If I end up needing it later I will ask for it. Be careful to track how much you take and be sure that you don't over dose because it is a tricyclic and OD is bad news. See http://en.wikipedia.org/wiki/Tricyclic_antidepressant.

Best wishes. Don't be shoogling too much.

Mike,

Thank you so much for all the details of your amputation. Sounds like pain was/is still a serious issue after the amputation. I find that my arm is a nightmare every evening. I take all kind of drugs regularly. I take Dilaudid in the evening to get my pain under control. Sounds like I had better keep that prescription filled.

It's nice to know that you do find it easier not having to babysit your arm with every move you make. That is a factor I'm looking forward to.

I'm scheduled to be at MGH at 6 AM on Friday, 11/21/08. The surgery is scheduled at 8 AM. I'm hoping to come home on Sunday.

I'm glad that you can be fit for a prosthesis. I was told I'm not a good candidate. I have not been told the reasons but I think it has to do with the weight causing strain on my shoulder and messages for the prosthesis not being properly sent for movement.

I'm fine with knowing upfront that I can't have one. I prefer to know now than hope and find later that I can't. I'm done with the hoping something will work.

I'm pretty calm about it being a day and a half away. I'm really just looking forward to finally not having to work on an arm that does not and will not work. I'm ready for the real door to my actual recovery.

I appreciate all that will have me in your thoughts and prayers Friday. Every positive thought helps.

Thank you.
Janelle

G'Day Mike,

I got the chop on September 8 this year. Took pain meds for 3 weeks post op but none now. I ended up in ICU after amp due to pain storm, they had to do ultra sound on my neck and inject nerve block to settle me. Anyway, I used to take 3200mg Neurontin, 600mg Mexilitene and 150mg Amytrip + a range of others including the methadone. Docs told me I'd never get off meds cause my pain and dosage wwere so high. well other then post op I haven't taken pain meds since Feb 3 2005, Sunday just gone 16th November was my 5 year anniversary.

DON'T DRINK ON AMYTRIP, been there and nearly couldn't make it to cab from restaurant after 3 beers.

Cheers

Jamie