Hi Tina, it’s Jacko here.
I’m sorry to hear about Manse. Sounds like he’s in a really bad way, but I’m glad he’s pulled through the critical stage. It’s really tough on both of you going through this process, and I can understand that Manse will be thinking that if he gets his arm lopped off, that will solve all the pain, discomfort, and generally just being a burden. Unfortunately, it’s not that easy in the early stages. Manse will have to go through the pain, and the depression, and fight both before he is in the right frame of mind to make such an important decision.
I carried a flail arm for 5 years before I made the decision to have it amputated. I realised that numerous surgeries had only given me the tiniest bit of recovery, and I would have to have some major muscle and tendon grafts from my chest and back to get even any further recovery. Now I’m not the prettiest guy in the world, but I’m reasonably OK, and I didn’t want to end up looking like Frankenstein’s monster. And I couldn’t face much more hospital time. I have a life to get on with.
Once I’d made a decision, the surgeon was happy to do the op. I didn’t have to put any pressure on him at all. He knew from 40 previous ops that in some cases it resulted in a more happy patient. Myself, I’d spoken with another biker who’d been through the same process as me, and really helped me a huge amount in the early stages (Ross Rebbeck from Devon, UK… thanks mate), so I knew what I was doing.
I’ve now been one-armed since June 2002, and I don’t regret it at all. In fact it has really improved my life, but I had to be 100% sure that there would be no recovery before I went for the chop. It’s a one-way ticket! Any pain that Manse is getting will lessen over time, but he has to know that chopping off the arm in the early stages will make no difference whatever. The pain will still be there as “phantom pain”, and from what I’ve heard, that is even worse coz your brain just can’t cope with it. Your eyes are seeing nothing, but your brain is still thinking that there is something there.
The issue of a false arm is not one I can comment on yet. I have a cosmetic arm, but it just gets in the way. I wear it at the moment just to get used to the time when I’ll have a prosthesis. Once I have a proper false working arm, I’ll update this site.
Best wishes to you both, and if I can help at all, I’m normally lounging about at TBPIUKGROUP
Amputation
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lesthomson
- Posts: 3
- Joined: Mon Feb 10, 2003 5:42 pm
Re: Amputation
Hi Jacko
I am giving serious thought to amputation and have been referred to my orthopaedic surgeon to look into what kind of prosthesis are available.
Your posting has more or less helped me make up my mind, thanks for that. Have you came across any others who have gone down a similar route ? I can only recall one I read from a Dutch guy saying exactly the same as you i.e. he felt as though he had been liberated.
I to am pretty active but find running etc to painful even with the arm strapped up. I would hope to get back to regular jogging post op. I still Ski and do pretty much all DIY etc, a lot more than most of my friends anyway they are all pretty useless with two good arms.
I think that losing the lower arm would make life so much easier with or without a prosthesis as I could use the upper arm to push against things as I have pretty good shoulder movement following surgery in the fist couple of weeks post accident at Stanmore. Who knows might even be able to rig up an attachment allowing me to ride the VFR sitting in the garage, left hand throttle of course.
My only reservation is the chance of the pain getting worse, as if my BP arm is out of sight for a while the pain gets pretty bad, I spoke with another patient at Stanmore a few months after the accident and we reckoned it was an instinctive thing where the brain was telling me to locate my arm cause I didn't know what harm could be happening to it, a bit concerning if it was gone for good, mind you I could always ask to keep the metalwork holding it together ! Anyway sorry for rambling on but how did the amputation affect your pain, if at all.
For those of you who read this soon after your own accident don't be to upset by reading this, as I was when I read the Dutch guys posting, as most people regain much more function than Jacko and I had/have so stick in there.
Cheers Les
I am giving serious thought to amputation and have been referred to my orthopaedic surgeon to look into what kind of prosthesis are available.
Your posting has more or less helped me make up my mind, thanks for that. Have you came across any others who have gone down a similar route ? I can only recall one I read from a Dutch guy saying exactly the same as you i.e. he felt as though he had been liberated.
I to am pretty active but find running etc to painful even with the arm strapped up. I would hope to get back to regular jogging post op. I still Ski and do pretty much all DIY etc, a lot more than most of my friends anyway they are all pretty useless with two good arms.
I think that losing the lower arm would make life so much easier with or without a prosthesis as I could use the upper arm to push against things as I have pretty good shoulder movement following surgery in the fist couple of weeks post accident at Stanmore. Who knows might even be able to rig up an attachment allowing me to ride the VFR sitting in the garage, left hand throttle of course.
My only reservation is the chance of the pain getting worse, as if my BP arm is out of sight for a while the pain gets pretty bad, I spoke with another patient at Stanmore a few months after the accident and we reckoned it was an instinctive thing where the brain was telling me to locate my arm cause I didn't know what harm could be happening to it, a bit concerning if it was gone for good, mind you I could always ask to keep the metalwork holding it together ! Anyway sorry for rambling on but how did the amputation affect your pain, if at all.
For those of you who read this soon after your own accident don't be to upset by reading this, as I was when I read the Dutch guys posting, as most people regain much more function than Jacko and I had/have so stick in there.
Cheers Les
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: Amputation
Jacko
How about you physical balance?
How about you physical balance?
Re: Amputation
Hi folks.
Re the last 2 questions: Having my arm taken off has made no difference to the pain. I had pretty much overcome that anyway, and there is just some occasionally. I rarely have really bad pain now, but I do have enough on a bad day to keep me from sleeping properly. (oops, that should be a bad night - I do not get much chance to sleep during the day :0
My balance actually improved when the arm came off, contrary to popular belief. I think that is (a) because the arm had never hung right in the first place, and (b) I actually felt more liberated so I walked straighter and with more confidence, and didn't even think about balance.
The only slight downside is that I cannot carry heavy bags one handed, as it puts a huge strain on my spine. If I ever need to carry stuff, I use a bag with a shoulder strap, or use a trolly where possible.
Re the last 2 questions: Having my arm taken off has made no difference to the pain. I had pretty much overcome that anyway, and there is just some occasionally. I rarely have really bad pain now, but I do have enough on a bad day to keep me from sleeping properly. (oops, that should be a bad night - I do not get much chance to sleep during the day :0
My balance actually improved when the arm came off, contrary to popular belief. I think that is (a) because the arm had never hung right in the first place, and (b) I actually felt more liberated so I walked straighter and with more confidence, and didn't even think about balance.
The only slight downside is that I cannot carry heavy bags one handed, as it puts a huge strain on my spine. If I ever need to carry stuff, I use a bag with a shoulder strap, or use a trolly where possible.
Re: Amputation
Yup I've been thinking about it Jack. 4 and a half years on. I hadn't seen my surgeon for almost 2 years and the second word out of his mouth was " have you ever thought of amping your lower arm ".
They did a great job of strengthing my upper arm and elbow but the hand and wrist just wouldn't come back. That was no suprise as I'd avulsed C8 - T1. My hand and wrist will clench and or flex out but it's not like real intristic movement. The bicept and such try to mimic real hand movement.
I've adapted quite well, to the point that my affected arm is learning to help alot. I can clench objects and manipulate them by bringing them to my chest. For me all movement is upper arm, below the elbow (distal ) is nil.
Still I'm not ready for the chop just yet. I thought about the amp early on but I'm still not convinced it's the right thing for me.
I see all the advantages of having the amp. But it all depends on the prosthetic and what you want to do with it. For me there won't be any weight savings, the orthotic would weigh at least as much as my hand/ lower limb, so it won't help my shoulder skirt in carrying the weight ? ( read back pain )
I'm due to see the the orthotics guy just to see what he has to say. We shall see how it goes.
Mikey
They did a great job of strengthing my upper arm and elbow but the hand and wrist just wouldn't come back. That was no suprise as I'd avulsed C8 - T1. My hand and wrist will clench and or flex out but it's not like real intristic movement. The bicept and such try to mimic real hand movement.
I've adapted quite well, to the point that my affected arm is learning to help alot. I can clench objects and manipulate them by bringing them to my chest. For me all movement is upper arm, below the elbow (distal ) is nil.
Still I'm not ready for the chop just yet. I thought about the amp early on but I'm still not convinced it's the right thing for me.
I see all the advantages of having the amp. But it all depends on the prosthetic and what you want to do with it. For me there won't be any weight savings, the orthotic would weigh at least as much as my hand/ lower limb, so it won't help my shoulder skirt in carrying the weight ? ( read back pain )
I'm due to see the the orthotics guy just to see what he has to say. We shall see how it goes.
Mikey
Re: Amputation
Just a thought,
Chopping yer arm off won't stop central nervous pain.
If yer hand has the buzz, burn, clamp, thingy going amping it won't make much difference.
Your brain is still sending signals...
Mikey
Chopping yer arm off won't stop central nervous pain.
If yer hand has the buzz, burn, clamp, thingy going amping it won't make much difference.
Your brain is still sending signals...
Mikey
Re: Amputation
Mikey, you'd be really surprised how light prostheses are these days. The cosmetic one that I have hardly weighs anything, and is really comfortable once it's strapped up. The fibreglass shoulder piece protects my shoulder from whacks as well, but that wouldn't be needed in your case. Obviously I don't know what it's like in Canada, but here our health service uses a company called R.L. Steeper, whose products are really good. If weight is a consideration, speak to the prosthetics consultant and ask to see the merchandise.
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Susie Kaye
Re: Amputation
I am thinking about amputation of my arm since suffering tbpi. I had a car accident in May/2000. My phrenic nerve is also dead. My right arm is totally flaccid, my right diaphragm is paralized. I have been considering amputation at the shoulder. Is that what you have? I realize that you are a very active person, while I am just the opposite. I was and still am obese. I am on oxygen due to the paralized diaphragm. This web site is the only one I have found for adult tbpi's. Usually any mention of that brings info on baby's that are injured at birth. Do you know anyone else I can talk to? The Orthopod I spoke with about the amputation said he would have to research it as he has never done anything like this. I would appreciate any info you can give me. Thank you!
Re: Amputation
Hi Susie,
I can relate to your problems with the phrenic nerve damage...I have the same and a paralysed diaphragm. I am not on oxygen but have been for many tests where it was suggested that if things didn't inprove for me, this would be what I would be facing in the future. At one time they thought that I would have to have oxygen thru the night since my SATS tests showed that my oxygen levels dropped dramatically every night leaving me with severe headaches and lethargy for the rest of the day.
This was just over a year ago and like you, I was overweight. Since then, I have lost a lot of weight. It was suggested to me that this would help a lot because there would be less strain on the 'good' side diaphragm and lung. I recently went back to the specialist for my annual check up and have improved my peak flow rates by around 40% and have been feeling a lot better over this past year. I can only put this down to losing the weight and taking more excercise, since nothing else really has changed for me.
We started another website for adults with a TBPI over a year ago and there is also a messageboard attached to the site. The link to the website is http://www.tbpi-group.org and the messageboard can be found from a link on the home page there. There are many people there who have been thru the same as you are going thru. The atmosphere on that board is more relaxed than here, so if you want to email me privately, please do; I am very happy to help any way I can; click on my name above and my email address will come up.
Liz B :0)
I can relate to your problems with the phrenic nerve damage...I have the same and a paralysed diaphragm. I am not on oxygen but have been for many tests where it was suggested that if things didn't inprove for me, this would be what I would be facing in the future. At one time they thought that I would have to have oxygen thru the night since my SATS tests showed that my oxygen levels dropped dramatically every night leaving me with severe headaches and lethargy for the rest of the day.
This was just over a year ago and like you, I was overweight. Since then, I have lost a lot of weight. It was suggested to me that this would help a lot because there would be less strain on the 'good' side diaphragm and lung. I recently went back to the specialist for my annual check up and have improved my peak flow rates by around 40% and have been feeling a lot better over this past year. I can only put this down to losing the weight and taking more excercise, since nothing else really has changed for me.
We started another website for adults with a TBPI over a year ago and there is also a messageboard attached to the site. The link to the website is http://www.tbpi-group.org and the messageboard can be found from a link on the home page there. There are many people there who have been thru the same as you are going thru. The atmosphere on that board is more relaxed than here, so if you want to email me privately, please do; I am very happy to help any way I can; click on my name above and my email address will come up.
Liz B :0)
Re: Amputation
I am late to this discussion having just found the group, but want to add my two cents. I had a TBPI 21 yesrs ago, and amputed the arm one year after the event. I too felt free, and aside from the expected situations I face as a one-armed man, I have never regretted the decision.
It became the reminder of what I couldn't do and it was a relief to get rid of it. Now If I could get rid of the pain . . .
It became the reminder of what I couldn't do and it was a relief to get rid of it. Now If I could get rid of the pain . . .