United Brachial Plexus Network

Hello everyone,

Well it has been a while since I have posted on here - it has been over 10 years since my accident. Wow how times flys! Anyways just a bit about myself first if you havent come across me yet me. I have a complete RTBPI that was suffered as a result of a snowmobile accident when i was 15 (2001). I did have reinnervation surgery which gave me the supraspinatus and bicep muscle back but other than that my arm is completely paralysed.
Since the accident life has actually been really good for me. I found the lady of my dreams, got married, completed a bachelors degree in chemistry and am now just about to complete a degree in Pharmacy. All in all I would say that I have adapted pretty well and have very few functional problems with having one arm. Phantom limb pain was probably the biggest hurdle but over the past 3-4 years it has really settled down (to the point where there is virtually no stabbing or jabbing just a dull ache). So to you unlucky ones who have joined us BPIers I can say in my experience the pain does get better! Take this from a person who was once on a cocktail of Gabapentin, Amitriptyline, and Oxycontin. I no longer take any medicine other than the odd paracetamol.
Right, so despite these great gains I have made I feel my arm is holding me back. I'm a bit tired to be honest of baby sitting this thing. Because of the profession I will be entering I will likely be standing 8 hours a day and currently I just put my hand in my pocket. The problem with this is that it causes a great deal of pain in my arm/shoulder at the end of the day. Further, if I decide to work in community pharmacy (the pharmacists most people think of) it is very customer service orientated and I've found some people to not realise that my arm does not work and question why I have my hand in my pocket. I also find that having the arm limits me in the sports/outdoor activities. I strapped my arm up and played intramural soccer during my chemistry degree and ended up breaking my arm. I played for 10 minutes until I noticed something floppy ! It would be great to be able to go hiking and not worry about my arm temperature (where I am originally from gets very cold) or possibly injuring my arm. Also I want to sleep on my stomach again ! If I do get it amputated I know I am not losing anything in terms of function and I am more than happy to have the level of function I have for the rest of my life.
Is there anyone around who has had their arm amputated? Did you notice any big differences? How did people perceive you differently? Do you regret it? Did you experience more pain? less pain? or about the same?

Cheers,
Andrew

There are.. post I have seen like this
So i will try to help???
First you are Doing GREAT by your Trys !!!! But you ran into a wall by trying
Please ask yourself would not you be OFF balance more if your arm was gone???

If you latter in life find there was treatment or a surgery Then, But you could not get treatment or surgery because you did not have a arm

You may fined a med that may work at School ???

Learning to use your limitation as a tool to adapt or assist your good side is a Quest ! What movement do you have, Maybe I can TRY to explain how you might adapt, I put my hand in my pocket but then its easy to tuck in between that arm a folder or clip board.( There is Tricks Working nights at Ups Loading Semis later, driving a semi for 25 years For 2 common Carrier s. The only Time I am Pain free is being 50 underwater on a dive. My pain is less because I focus on my activity Like being on a Shark Feeding DIVE!! You have to consider the source I am CRAZY I just finding ALL the time I am interest to See what I can still end up adapting to with 2 limited use arm now.
There Is a Lot of ways to use limited use-age as a Tool to adapt or assist your good side- For Sure Birth Erbs, Semi injury on good side, I love driving a Semi, That Hurts
Man I hope this HELLPS or can help!!!????
Tom

Thanks for your response Tom, actually I was waiting for your reply. I have noticed you have been rather active on this topic in the past. I understand what you are saying, however, I think you miss where I am coming from. I dont wish to gain any further function by having my arm amputated, in fact I doubt I would use a prosthesis as all. I just want to free myself of the burden of having it. If in 10-20 years they come out with a miraculous cure where they could even restore 50% of my arm/hand function I still would not regret it. I have accepted that I will have one functioning arm and I am happy to live my life out this way.

Thanks for understanding Me, I TRY to help from my experience and what I could adapt, and Try to share how TO"S??? Than it is a needed choice for you. Good news we are here If you Need us No matter your choice , then in the end its is the right choice for you. I have to Respect others to, we are alike To a Point but limitation are not the same- Fore Sure I think the best you can do is post from your heart in life Which we All share

Best wishes,
Tom

andrew, you are the perfect example of this poem i wrote. it is wonderful that this injury did not define who you are and what you can do. GREAT JOB on your success. hope your amputation surgery goes very well. for a while after my injury, i kept saying i need a hacksaw to get rid of this thing, but now i have some function back and i am glad no one got me a hacksaw. lol i just have enough function to have a "helper" for my other hand.

accept yourself

accept yourself as you are
appreciate yourself as you
you are not perfect
your body may be injured
but dont let that be who you are
your attitude may not be perfect
but you can change it
it is your decision to
continue being your best self
or being less than your best
it is your job now to learn
how to live a different life
than you had before
it is hard but you can do it
with a lot of hard work and determination
it will get frustrating, annoying, and
feeling like life aint worth it that is normal
and fine to feel that way
but it is not fine to keep feeling that way
so put you head up, smile, and say
I WILL BE MY BEST SELF NO MATTER
WHAT HAPPENS TO ME

written by Joyce Clemons

when I want to sleep on my stomach, I place my arm at my side, or place my arm behind my back or place my arm in a position so that my arm is in a sort of chicken wing position. I've always kept my arm in a sling of of some type across my chest when I run, cycle or ski. when I'm swimming the water supports it. For the 30 + years I worked I sat at a desk but I know how an unsupported arm can ache after hanging at your side. If it improves the quality of life, then removing it is what you should do. I've considered removing my arm but never reached the point where I thought it would improve my quality of life.

Hi GUYS
Talking about a HUGE SUBJECT I really Try to Think about a arm That is so Sever Torn up A doctor would even offer to take OFF?????? REALLY
I know the worse thing is OUR DI-SPARE when finding ourself with a Lack of Direction with these injury : or you try and it does not work- out.
There is a lack of finding That Doctor in Time Its a life long Quest I wonder if you wanted to have a amputation ,Or Not seeing the right BPI doctor that May of help the limitation???? or did a doctor say you need to consider having your arm taken off?????? . Who Knows Is there really cases ware amputation is the only answer or is it being in Depression base on the real lack of Direction, We are about doing with limitation adapting by post , You Guys Find DOCTORS, Building a tool out of your limitation and getting past and over and adapting to your losses by your trys!!!! This is our post to inspire by experience .:
This subject DRIVE ME CRAZY!!! This injury can be so SEVER??? AMPUTATION Is a OPTION?????
REALLY??????
CONFUSED!!!
In Our world There are GREAT outcomes BY POST But yet seeing that right Doctor for your injuries Is a Quest CURRENTLY OFFERD IN TIME????
Trying to Find ways to adapt THAT WORK
We are like passing out flash lights in the dark, We just Try to give direction base on OUR experiences that may help??? AMPUTATION , REALLY?????
PAIN is a life long Quest and a Huge PROBLEM I have Torn nerves and stretch nerves from my Birth Erbs But my Deltoid on my good side needed to be reattached from my Semi injury IT has always been my Quest to find a MED that works ??? Pain Has BEEN HUGE WITH POST, I would settle on a med for My Stretch NEVRES that work??????
Confused you BET WILL a doctor offer amputation as a OPTION??? REALLY??? or is it a person not finding the right direction to find a doctor RELIEF for the limitation and PAIN. SO MANY POST Like that part ???? I JUST DONT KNOW???
MAN, I HOPE THIS HELPS???????????
Tom

Andrew wrote:Hello everyone,
Is there anyone around who has had their arm amputated? Did you notice any big differences? How did people perceive you differently? Do you regret it? Did you experience more pain? less pain? or about the same?

Cheers,
Andrew

Hi Andrew,

I know there are threads on this site that deal with this question, but there is another site that I think has had more dialog on this subject and actually has more people that have had their arm amputated. I did a quick search for threads on it and came up with this link for you, might help you get some answers to your question above: http://adultswithbrachialplexusinjuries ... ion?page=1

I completely understand where you are currently with your arm, career and sports. If it was only about sports and getting the arm out of the way, that can be resolved with the right sports sling. But I think the bigger issue for you will be the daily issues and your career. I am almost to 26 years with my injury and I like you, only have the bicep. In my daily life, I don't wear a sling and put my arm in my pocket, but I am able to rest the arm on my desk or in my car while driving, so the weight of it pulling all day is not something I have to deal with too often. I do tradeshows from time to time and on those days, I am standing almost all day and experience the same arm/shoulder pain you described, which I am very glad it isn’t a regular thing for me.

I think this is one of those questions you have to work through, do I get enough use out of the arm with the bicep that it makes my daily life easier or would my daily life be easier without it? For me, I have always said, the added use of the bicep helps me in my daily life but the arm is a negative for me in my sports. When I consider those two issues, I have made the choice to keep my arm as I see it as a net gain for my overall life. What that means for me is the added gain I get daily outweighs the negative of the impact on my sports, which for me isn’t that negative. If you want to have a sports conversation with the arm, that is a subject for another thread, but always happy to talk about it.

I also believe you make your decisions in life based on the facts you have today and you live your life like what you have is what you will get, as it relates to my arm. I decided early on I was great just the way I was and I was going to find Joy in my life “Today”! That meant I focused on living my life like there wasn’t ever going to be some medical breakthrough and I was not going to put my life on hold till it happened. Glad I did as that was 25 years ago and I would still be waiting for something that has never happened, at least not anything life changing. I think you said something similar or were trying to convey the same thought in that you are “more than happy to have the level of function I have for the rest of my life” Which takes me back to an earlier point, you have to decide what will make your life better today based on the facts you have today!

My Best to you as you work through this difficult decision,
Dan

Andrew, our situation is extremely similar except for one issue, I do have full use of my left hand now. I can't lift my arm up but I do have bicep (as you do) and very limited use of my arm. I have lived with TBPI for 4 years now. I know where you're coming from as far as saying you get used to it. I could never amputate as long as my hand works as well as it does. If I did not have hand use I would, as you are, consider it.

As far as pain goes, I have done away with everything narcotic and only take Lyrica 2 times each day. It knocks the edge off and enables me to live with the constant burning pain that I always feel. I am used to it but I don't like it. I can say that it has not limited me from living a very fulfilling life. It is my understanding that the phantom pain does not go away even after amputation. I would have to let someone who has actually experienced their arm being amputated answer that particular question.

I do jog three or four times a week. I wear a sling when I jog. I do not use a sling any other time though. I have experienced fatigue in my shoulder on days that are extremely active though.

I congratulate you on finishing college, marrying and establishing yourself in a career.

Good luck in your decision. I am confident you will make the right decision for you.

Keep on keeping on!

I'm almost 2 years post injury and I think about this alot,I have limited hand function and no arm function and it is extremely uncomfortable,I ask myself do I want to carry this arm around for the rest of my life?.I think whatever you decide you will be just fine,sounds like you've handled this situation well and have moved on with your life good luck Andrew and continued success.