I am looking for some advice about surgery.


Since the last note, I have dropped out of university where I tried to persue my old love of music but apply it to something I could still do, like teaching.

I would write about this, if anyone cared.

I have also developed great pain in my stump. Debilitating iron hot pain. Pain like a blow torch, like a hot nail.

This was initially thought to be phantom pain, but after two years after my accident, I had an intensive medical workup of the pain.

The result is that the pain is caused by injuries to the bone, muscles, tissues and nerves in my stump as a result of the crushing of my arm in the accident.

My right arm wasn't just cut off, you see. It was slowly crushed under the weight of the car I was in. As the movement of the car ended after the crash, I watched it settle on my arm. I was fully awake and aware. I watched the metal settle on my arm. It hurt. My arm got flatter and flatter as I watched. The elbow seemed to squish, then my arm hung limp from a spot a few inches from my shoulder.


When I had the origional traumatic amputation, the goal was to leave as long a stump as possible This is the usual practice, and makes good sense.

However, since after two years the pain didn't get better, different drugs and therapies have been tried without result.

What happens is that every time I reach out with my right arm, which is not there, the bone moves and this causes pain. Since this is my dominent side, the hope was that as time passed and I moved my left arm more, the movements of my right arm would come into more conscious control. This has not happened so far.

When I left the hospital last month, they tightly bound my stump, then bound it to my body.
I was told to wear my clothes over this, which I have.

After a month, the total immobility has not helped

Last week I tripped, and thrust out my right arm to stop my fall. Of course, the arm wasn't there, but the bone moved hard against the bandages binding it to me!!

The pain was worst yet. I lost control of my bladder. I lay on the floor and howled in agony.

Less than two years ago, I was a fluffy dainty pretty girl.

On re examination of my arm, here is the result.

I can wait another year and hope it better...This is what my docs recommend. Two years is not that long a time, there is an excellent chance I will be able to learn to supress the movement or control it; and at the same time, the pain might dimimish on its own.


But, I could also have further surgery. This further operation is now considered a reasonable elective for me because of the pain, but is not recommended.

The operation is
called a shoulder disarticulation..Without cutting any bones, the remaining part of my arm is removed at the shoulder. This removes all the damage and there is a good chance that ends all the pain.


My surgeon called this operation a 'needlessly permanent solution to a temporary problem' but admitted that she agreed that it would be a solution.

My therapist agrees with this, that it is a 'permanent
solution to a temporary problem'.


I have had a peer visitor with a recent amputation and the same length stump as mine, but no pain. I am very excited at all he was able to do. He was able to use his stump to hold things against his chin or body, even papers and books!

He had a prosthesis which was amazingly useful. He could position it precisely with his shoulder and open and close it with great skill. He used the prosthesis when he needs it and just didn't wear it if he didn't need it.

I went to a prosthetist. He admitted that the usefullness of prosthesis for high AE was not spectatular, but thought that in the next decade, great strides would be made.

He said that having my small stump and an intact and functional shoulder would be the difference between a functional prosthesis and a bad one in ten years.

He agreed that the operation to remove my arm through the shoulder was not a good idea.

Balanced against this clamor of advice is the fact that it hurts, that the pain
prevents any normal life, and that unlike many suffers of chronic pain who have no options, I do have an option. I have it in my power to eliminate this pain.


If this operation was not reasonable and legitimate, no surgeon would perform it.
Yet I have gotten second and a third opinion that not only is it medically reasonable, it would solve the problem.

And after all, it may not get better.

The next step is casting it. Or even a body cast over the area, This is not a happy thought.

Meanwhile, even with mediications and tight bandages, my stump pain won't let me sleep, and if I rub it even gently against a wall or even a sofa cushion or a chair arm, the pain doubles over.

I am wearing a product designed for old ladies who can't control themselves because I sat down last week, made unanticipated contact with the arm of the chair, and peed all over myself and the chair.

So against the good--- but in no way guaranteed---
chance that it will get better, and the near certainty that the operation forecloses many prosthetic options, is the simple fact of this pain.

I dread the thought of deforming my body even more by losing my shoulder. I know that, as revolting and ugly as my abreviated arm is now, having nothing at all will be far worse,

Yet I can walk into a hosital next week and walk out a few days later with the nightmare of pain over. I can take control of my life. Mornings can again herald a new day rich in possibilities.

After much thought, I think that this decision is pretty much a " no-brainer".

It seems, after considering everything, an obvious choice.

But before I make it, I want to get all possible input.

I know everyone is busy, yada, yada, yada...but you all could really help me here.