United Brachial Plexus Network, Inc.

Hi Mary Ellen, I'm so sorry to hear you've joined our club. I also considered an amputation to relieve the pain but my neurologists explained that even with the arm gone, I would still feel the pain becuase the nerves that exit the neck would remain. I was very disappointd at the time but several months later, I'm glad I didn't do it. My thoughts and prayers are with you.

By amputating it will never relieve us of pain but for some its very heavy dead weight and a hanging useless arm gets in the way. Unless wearing a sling all day doesn't bother you?? BUT it IS a very personal decision and I would never tell anyone to do it or not to do it. I have read many posts (I have been on this sights for MANY years (6 yrs) and I have met a ton of people) and I have yet to read or met a person that regretted amputation and I also have met people that were thankful that they didn't do it. It is a very personal and permanent decision that needs to be made by the individual. Good luck and my thoughts are with you.

Kathleen
TLBPI-87'
40 yrs old

To each his own. Period.
The only thing you can possibly hope to get from a loaded question like that are two distinctly different opinions and maybe lots of support telling you to be true to yourself and use tact, poise and reason and a sprinkling of logic. I've been boarding for nigh on three years and what I get is this: those who have amputated wish they had done so earlier and those who haven't wish those who are contemplating it their very best wishes. Nobody who has had the amputation has said I did it because of the pain or that now they are pain free. Mostly say they did it because it was in the way, it was hindering their daily activities or it was causing unnecessary problems to their 'good side'.
If they had taken my arm whilst I was 'out' it may have been okay. Now however, I can not go into my doctors office, lay my arm on his desk and declare "whack it off doc." So I live with it and all it has to offer? or take away...
I might take up wheat harvesting and accidentally have an accident harvesting with the whacker???
I don't know what I'm going to do actually. Other than hope for science and technology, I guess. Read everything from Christopher and see the hopes of the future.
Meantime...Pills, pain, pain, pain, pills, pain, sleep ahhh what a wonderful escape...pain, pills, etc..
As Kath said we are all here for support and thank God for that. This place is a God send to which nobody can deny.
I'd like to know who started ubpn.org.
Somebody must know this surely. I don't mean Shirley, I mean surely and I'm not mean I just mean. Sure-ly.
Peace out,
Scott
Edit: Removed ref. to mud slinging


Message was edited by: swhite1

Hi Mary Ellen...

Just a few thoughts...

Better to Laugh than to cry...
Better to have loved & lost , than to have never loved at all..
Better to love yourself for who you are and who you are not...
In the end...the raw wolverine (my pain)that claws from within, that is relentless and unforgiving, trying to wear us down in spirit, mind, flesh...I for one will not let it happen...
I will drink my tears and laugh them back out...I will snap and then give a hug or expression of my animal raw side...and show my true self...the loving woman I really am...For I only know the shoes I walk in...no others.

For those that know me, either love me or fear me and run like heck as far and as fast...because they fear they might catch what afflicts my arm, body...loll

Have fun...play and enjoy the journey...
Pain needs to take a back seat as often as we can get rid of it... Throw your prostesis on or your sling or let your elbow hang out...no matter...it's all good. We are all beautiful people...worthy of so much and deserving.

This is my wish on this Full Moon night for you and everyone who walks our similar paths with this TBPI.

Polish up those dancing boots and get going...
Laugh, Sing, Feast and Share...in the end we have each other...in Brotherhood and Sisterhood.

With Peace, Love & Light
Mardelle

Mary Ellen,

I copied part of a posting I made in Dec 2008. I had my left arm amputated just above the elbow Nov. 21, 2008

"I had my amputation on 11/21/08. It is just over a month. The only regret I have is that it was not done sooner. My pain is greatly decreased. I'm on the long slow process of getting off all the drugs I've been on since my accident on 1/2/07. It will probably be May to accomplish this.

My violent spasms are gone. I have occasional spasms. They are minor and shorter in time.

I feel like I have a real shot of getting my life back. I no longer spend every minute of every day dealing with my arm.

I don't miss it. There is nothing to miss. I had no movement or feeling from my elbow down since the accident. I don't have to carry dead weight any longer. My right shoulder is not carrying the weight of my left arm in a sling. That was causing pain in my right shoulder. I lost nothing having it amputated. I gained plenty by having it finally gone.

I had all the surgeries and therapies that could be done. I know every effort was put forth be me and my doctors. I can honestly say I wished they hadn't tried so hard. The muscle transfer attempt from my right leg to my left arm is the one surgery I wish had not been tried. The severe cold in NH bothers where the incision in my leg is. That surgery is my biggest regret. However, I know that was the one that made it clear to everyone that movement was never going to return."

Oct. 12, 2009
I still know I did the right thing having my left arm amputated. I am learning to use a prosthesis. I got delayed because I tried to get off Lyrica. My spasms and pain levels increased dramatically. I back on 50 mg 3 x's daily. The severe spasms and outrageous pain has improved.

Amputation WILL NOT change your pain issues. It will make it so you are not babysitting a dead arm. I no longer have right shoulder problems from a sling causing constant pressure and strain. I don't have to worry about hurting myself and not knowing about it.

The prosthesis will make it so I can hold things in place while I use my right hand to do the work.

I know there was zero chance of my gaining use of my left arm. I know new developments occur all the time with prosthesis. My chances of function is only available with a prosthesis.

Do what you feel comfortable with. Don't allow other opinions to influence you. Listen to what they have to say but make your own decision.

Sorry for the long post.

Take care,
Janelle

Hi...
Read your post. I did not know you already amputated your arm, I thought you were simply contemplating it.
Each to his own..I am the flip side...I love my body and my injured & healing arm of 22 years...I have function returning ever so slowly from an all 5 completly avulsion of nerves. I had early intervention highly experiimental then operation, within 3 months of accident and it was a long shot, glad I took it...it worked.
There are never any right or wrong answers to our questions in our forum, only shared experiences, offers of inspiration and healthy offerings of hope and support.

I wish you all of them and hope all things go really well for you.

With Peace & Light
Mardelle

FYI-The orginal post was from Mary Ellen, Mardelle, not Janelle...........Mary Ellen was looking for support in her decision.

Thanks Heff for steadfast catch on my post...I thought I saw it was Mary Ellen......

With Peace...
Mardelle

I have heard this subject before, My best guess is she was injured latter in life, There fore it is harder for her to deal with? I wish she would take what all of you said to heart but she may not. If she choose to read on the adult messages hopefuly she we can help to that there is a life with this injury. In the end We can only help the best we can for sure. I am proud of you guys big time for trying and her reaching out to us for sure!

Tom

Thank you all for your views, I realize I wasn't the original poster, but I'm in a similar situation; quadruple evulsions leaving no real probability for biceps/triceps and lower. I'm hoping that an elbow-down amputation will remove the necessity of a sling, and allow my shoulder to become stronger and the residual limb to become useful rather than a burden.
100% of my pain is below my elbow, so who knows what a partial amputation could do; I'm hoping help, but nothing can be guaranteed. The fact that somebody can manipulate my hand with my eyes closed and tangibly increase my pain makes me hopeful...
Anyhow, this thread- and the views presented in it- has been very helpful while I weigh options, pros and cons.
I really appreciate all of your openness and thoughts.
Take care,
~Alex