United Brachial Plexus Network, Inc.

Hello, I'm a new-b. I'm hoping you can help? My Ques. is I'm looking into having my arm amputated.
Has anyone had this done and what brought u to this decision and are glad u did?

Mary Ellen

Don't do it...please read all of my posts...
Then seek out remedies...
Those are my serious recommendations to you...
I will keep you in my thoughts on this day...
With Peace , Love & Light
Mardelle

Please don't give up. I was told on numerous occassions that I would be happier with it out of the way. My intial diagnoses was complete avulsion/total loss. I had one surgery 6 months post to clean up scar tissue and that is it. But to everyones amazement especially my own when things started to return. As of today four years post accident, I had an exam in which dr. nath believe that with a succesful muscle transfer I could get the use of my hand back. I've already regained shoulder and bicep, and with the possibilty of a surgery I had to get an up to date emg. Well when I went to the Dr. on tuesday she was floored. I have nerve function all the way down to my hand. Not just a single nerve but 2 of the three and the radial nerve couldn't be tested. So keep the Faith
Ciao
Brandon

Mary Ellen - God bless you for coming this far with hope.
Four and a half years? Wow. Good for you. I don't know the nature of your other injuries but to be saddled with this after all is said and done sucks. People don't realize just how much pain fits in all those years, months, weeks, days, hours, minutes and seconds. Of course I'm only guessing that the pain is your reason???
I've no idea how 'it' is after 10 or 20 years. Not a clue. I will tell you this though, I just passed three years and I am seriously considering the same thing.
I don't know if I can take it any longer.
I don't know if I even want to take it any longer.
Pills, pain, pain, pain, pills, pain, sleep ahhh what a wonderful escape...pain, pills, etc..
Janelle is a friend from back home and for me is the standard of courage and committment. She endured multiple injuries as well and decided to have hers removed last Thanksgiving.
I'll pass along your email address.
Scott

Dear Scott and Mary Ellen...
approaching my 23 year with my TBPI somewhat qualifies me to share my thoughts on this injury. I know that speaking from my own discoveriesw on pain, this is what I know. I use this word know, because I understand pain from the inside out. Every single person in the World has pain, at some level. Emotional, Spiritual, Intellectual, Socialogical,Physical...it matters now the type of pain, but what you do about it. My findinds are these. What you focus on expands. Look for your root cause of your pain. Many of the times in my research there are a multi layered situation pain that crosses over one another. Spirtual, Emotional/ mixed with physical. Next is your support system in your pain. Do you have one at all? Are you feeling all alone? Are you using your med's as a crutch? Are you addicted to your drugs and this is the cause of your dispare? Unless you get real with answering some of these questions privately to yourself, you are chasing your tail in circles. Looking for cures outside of yourself can be a dangerous business sometimes. The truth about amputations...they don't take away the pain, just the limb. Fantom pain is waiting...so the sooner the better you look for alternative ways to cope with your pain, the better. All of us at some point have either openly or secretly have considered amputation, some of us including myself had considered death an opition, in thought about 100X. It is natural to some degree to have all of these thoughts and feelings. Every so often. I give myself permission to cry about my pain/loss and the fleeting defeat I feel at times, but the other 99.9% of the time. I wake up grateful. I'm alive. I have survived. Why? I know my purpose. For me it is a creative balance between completely embracing my pain/recycling it's energy into positive actions, deeds, thoughts, etc. For me there is no other way! I have a rich and very full life. The rreason for this is because I asked for it. I ask our Creator every moment of everyday to walk with me, encourage me, inspire me to be the very best I can be, for my family, friends, community. I start my day on the edge of my bed, saying Thanks for this new day. I accept the state of my body, no matter what it feels like. I get up...I take 10 deep cleansing breathes through my nose out through my mouth. I nourish my body with fresh oxygen. This helps kicks start my own endorphines, that manange my chroonic pain. I feel a little heady...rest a moment, because I just got a natural injection of my own pain medicine, our bodies creates naturally. I do not need the heavy drugs the Dr's prescribe. I do take tylenol arthritis, because the rest of the body is ravaged with pain in my joins, but that has nothing to do with the TBPI.
My next step is to take a 10oz glass of fresh water. This hydrates my brain, which will help me think better, it also assists me in the Summer especially with the when the sympathetic nervous system from the injury causes over sweating and it is easy to dehydrate. If you are low on water, it can cause pain too for your nerves. Watch the coffee/tea intake...all things that can aggrivate. Then my focus is on working my schedule in with my familes. All their needs, my own, my dog, my family 81 yr. old mom, my service. I volunteer as a Lay Pastor in Palliative Care Unit. Find your gifts that you have stored away within yourselves. Know you are good and worthy people. Give yourself a chance to do things outside of yourself for others. This is why we are all here. Keep busy with hobbies, try everything that you thought you could never do, you once did. Get busy with that. At least you can say you tried it. Stop having unrealistic expectations and accept this life change.
For the TBPI is something that happened to you, it is not who you are. Live, Love, Laugh, Get Silly. Know there is always someone out there in worse shape than you. When you start changing how you think and move through this World, and start looking at the root causes for all pain, is when the real healing begins, and you are free. Remember also you are not your pain, use this for gain, to take your personal power back, and take charge of your life in a positive new way. Only living in the positive, for there is no other way to live.
I hope my words have aided you both in some small way. I am a walking resourse of information, ask and I will do what I can to help you succeed in your journey to conquer your chronic pain. The training starts today, for it can be done. I am living proof.

With Prayers & Wishing You Both Light & Love
Mardelle

Mary Ellen,

When did your injury occur? You should never even consider amputation until you have checked all the Doctors that are experts on this injury. If after a few years you have exhausted every suggested treatment that the experts have suggested, I will be glad to talk to you about the positives and negatives of having it amputated. I have never been sorry I did it. I'll keep you in my prayers.

Susie Kaye

My thoughts and experiences of nearly 23 years say...don't do it...I don't know how old you are, or what you do for a living...but I know one thing...the doctors still cannot make anything remotely close to your own arm's design. If they did...I would try it myself...maybe...or maybe not...I just learned to love myself for who I am and who I am not...For me that was my final decision...your journey is one for yourself to explore. Although I appreciate the older person now 70 that had an amputation...I personally cannot endorse an amputation...based on personal reasons and scientific data where chronic pain removed...too much of a risk overall...

I disagree. having heard many people talk, and our levels of injury are all different, some people are dealing with the weight of dead arm with no possible regain of movement. "To each's its own".
We are here to support each other. No one ever has amputated their arm, on these boards anyway, to "rid themselves" of pain.
I have met a very good friend here from these boards that is contemplating amputation. I support her. Her arm is completely dead. Nerves do not grow back into the spine on their own, they are dead forever.

With all due respect...you cannot know any of what will occur with the healing of another person...nor do I or the Doctors...
We will always agree to disagree on this matter...
As people we are here to share experiences and thoughts...not make decisions or assist others in making serious life altering choices...
My arm was dead weight in all respects...they wanted to remove it many times...I refused...with my level of pain...I knew something was alive in my arm...
I went with that inner wisdom...not with what the otter appeared to be...
For me...it was well worth keeping and working with..
My recovery is astounding and medical history made 2X...I am living proof that our bodies are nothing short of miraculous healing vessels and I am not an advocate of amputation.
It all boils down to personal choices...
For me, I chose to fight to keep my arm and Thank God I did..
For you...it was an amputation...
Very different ends of the spectrum.

Here are two very different stories I'm sure...and two very different people, offering up their thoughts, on amputation...nothing more...nothing less...It's not a competition to see how many people we can find for or against...only to share ourselves...our own personal stories. It does not make one or the other better..

I hope that no matter the choice for anyone...that in the end everyone is in a better place and experiencing all that life has to offer in a good way...after they have found their own personal place of acceptance with ultimately their own personal choice to amputate their limb, or not.


With Peace, Light & Love
Mardelle

When I first became injured 4 years ago, I contemplated amputation because my arm was completely dead with 1 nerve severed from my spine and the rest stretched beyond healing. The pain was also unreal. I could easily say it was worse than having a child without an epideral but I knew that I could never go through with it. It is absolutely permanent. Before my accident I was really pretty so I think that was a deciding factor for me. I figured it would look more attractive with an arm (even a disfigured arm) than without. I had some slings custom made to look pretty. I just sucked it up. It wasn't easy though and it still is very hard after 4 years. By the way I was single and 29 at the time of my injury so I really wanted to find a husband and I eventually did. I even had another child and breast fed with one arm. Anything is possible!