Jill asks advice

[Deleted]

I really want some opinions on this.

The result of the extensive pain medical workup I had last month 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.

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.






 

[snowyh]

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 wonder on what basis your medical professionals think that involuntary stump movement is temporary. Having been an arm amputee for 40+ years, I can report that, even though I don't even have a shoulder (shoulder blade & collar bone gone as well as arm), the muscles in my "stump" area flex involuntarily all the time. I don't really feel as though I'm using my arm so much as just balancing my movements (near-constant). A somewhat famous short-stump traumatic arm amputee and professional surfer, Bethany Hamilton, has several videos of herself surfing on YouTube. Check them out and see whether she has trained herself not to instinctively use her missing arm after all these years as an amputee. My limited personal experience being around other arm amps is that they gesticulate their stump just like they used to move their arm, and for the rest of their lives.

But before you make any permanent changes to your body, I would recommend that you get advice from other arm amps that have a stump more like your own. Where to find them? If you can wait until the weekend after Labor Day you could attend the One Arm Dove Hunt in Olney, Texas (it's not just for hunters) www.onearmdovehunt.com, where you will find 60-80 arm amputees in attendance in any given year. Can't wait? There used to be a website, www.arm-amp.com, but I see it's not working today--maybe it's gone? It's a mailing list for arm amps (instead of a blog), where you can send out a question and it's emailed to everyone on the distribution list. If you're interested let me know and I'll put you in touch with the fellow who runs it (or used to, anyway).

Oh, as a side-note... if you think you may EVER be interested in osseo-integration, you'll need at least a short piece of humerus for them to work with. I can also put you in touch with a fellow in the US who had the procedure several years ago and is very pleased with the result. His humerus after amputation was quite short--I believe less than 2", so conventional prostheses did not work for him. He did have to go to Switzerland for the procedure because it's not yet approved in the US, however. I don't know how long your current stump is, but if they can shorten it and resolve your pain issue without having to do a shoulder disarticulation that would leave you with more options down the road.

BTW, life without a stump is actually not that bad. The world at large, medical professionals and amputees alike, seem to think we need two arms to get along in this world, so they go about inventing ways to put Humpty back together again exactly the way he was before the fall. But the truth is, there are one-armed ways to do things that most people feel they need two arms to do. It just requires some thinking outside of the box.

Helen

I guess I didn't really give you any actual advice...

[stonecutter]

I'm so sorry to hear that your struggle is continuing.

Unfortunately, I am likely not going to have advice for you either.

Not being an arm amputee I can't really comment on the specifics. I was lucky that my pain went away after a while and aside form phantom pains every now and then that drive me crazy and keep me awake for days, I'm am relatively pain free.

But there's something in your post that you were told that I question. Such as the thought of casting to immobilize won't really immobilize your muscles. They'll still try to move and will feel restricted, so I wonder if that'll solve much of the problem other than providing you with an armour of sorts that will protect you from bumps.

I'm sure the professionals you've been seeing have considered this if it was possible but I'm thinking of a friend of the family who had a heart condition where his heart would fire drastically without warning sending his pulse into the 180-200 bpm range (they used an angiogram-type catheter to go in and 'zap' problem nerves that were firing uncontrollably), and the ability of my revision surgeon to administer a 'nerve block' - a kind of epidural to specific nerves in soldiers in a war related traumatic injuries, can they not isolate and either permanently (or temporarily) shut down the nerve(s) causing you the hassle? I wonder what that would do for the viability of wearing a prosthetic. (I could be completely off base here - I'm not a medical professional).

In my experience, I found that *some* surgeons see amputation as a failure and that it's a last resort solution. By doing so, they might overlook the quality of life aspect, or forget that you are living this life while the extremely slow wheel of the medical world turns for you. If you're two years on and it's not getting better for you - will it? You seem to have gotten 2nd and 3rd opinions... how many opinions does your surgeon need to hear before she agrees?

If it's truly not getting better, why do they (both your surgeon and your therapist) think that it's a temporary problem?

Sorry that I seem to have more questions than anything for you.

I hope today is a good day...

[Deleted]

the latest installment in this never ending horror is another surgeon who wants to leave the existing stump for future prosethetic purposes but to paralyze it and sever all the pain nerves.  This "solves the problem" , quite cleverly in his opinion, leaving me with a totally deeply numb stump that I cannot move.


I asked if he thought I might  be able to use it a little, like to hold a book against my body or carry something, and he said no.  It would just hang there, and if 
i manually moved it, it would just flop back.


I feel very tired and excruciatingly sad

[Deleted]

And now, very recently, I had another well intentioned peer visitor, a guy my age, who had had sepsis from some sort of melingitis.  He had two long AE stumps and no legs.

  He was in a power chair.  He was proud to deminstrate how he  could so some thinhs with the hooks that hung on his arms.

This is, I guess, supposed to make me feel  better but it just made me much more sad.

[stonecutter]

I remember the peer visit while I was still in the hospital. It was a couple of days before my amputation and they weren't sure that I would even need to lose my leg yet. That visit scared the crap out of me.

I seriously hope that they determine a good and workable course of action for you, and soon.

[journeyhome]

Hi Jill. I don't know if I can help but have you tried pitting one doc against the other? Tell one that the other said he could fix your problem. Sounds like your getting the run around. I'm so sorry that you are going through this. I wish I could take it all away from you. Nobody should have to endure that much. It's not the stone age for crying out loud. There should be something they can do. Your gonna have to get mad. Raise hell and fight with them.

[Deleted]

I have now met the most recent peer  counselor my community has provided.


She was beautiiful.  A little tall, and very blond.  Curly hair, but hard to tell if it was a natural curl.  Amazing what one notices first,

I was caught by suprise because she was early. I just, all of a sudden, noticed that she held her arm a little funny.

I thought these exact words, an interesting vestige from my days of being able bodied ..." gee, she's crippled". Then I realized that the word is " disabled" and that I  was too!  Very wierd feeling,

She was very nice and patient. She had no pain and complete stump movement, so she had what I would have if I chose to wait on the surgery and the pain improved.

The bottom line is that she could manipulate a hook, or move the thumb and forefinger of a cosmetic hand. 

This was the first time I had a chance to examine closely a prosthetic on a girl my age, although I had seen them on guys, mostly war  injuries.


The only really useful thing is the hook, and it is so strange to look at.  The thought of having this hanging on my body is chilling.

The only good news in all of this is that she also had a totally cosmetic arm and hand that was comfortable and lightweight.  It was made by a company called 'living skin'.  The elbow and fingers could be positioned maually but there was no movement.  It was very realistic, and would avoid alot of stares in public.

But I cannot wear anything like this unless I can get rid of the pain.

Another surgical opinion came in last week, which is similar to a previous idea.  It is to permanently paralyze the stump, rather than remove it. All pain, and all movement and feeling, is lost but the stump is still there to anchor a prosthesis and there would be much less disfiguring of my body. This doctor said that I should think of the result of this type of surgery like having a "permanent prosthetic base", that even if the stump was totally inert it would be better than nothing from a prosthetic viewpoint.

This is still a last resort, with all four docs still recommending just waiting and doing nothing.

What I have learned so far is that surgery, like life, is just a calculation of odds, which little guaranteed.

[Ann]

Hi Jill, I am sorry I haven't replied to you so far, hesitated on this because am not an arm amputee and really dont know very much about your levels of surgery but can empathize with much of what you say.

I am not sure where you are located but I do think this has been an area of medicine which has long been neglected, though think things are changing now regards this and do hope that you can get the input you need to get the 'pain'  sorted.  I  understand that arm/hand amps experience is sometimes particularly painful because of the amount of nerves and nerve endings, but from my own experiences can say that it is still really early days for you at the moment and that nerves take a long time to heal, even though the limbs might look to all intents and purposes healed on the outside, there is still a lot of healing going on inside particularly with the nerves. From a leg amputee perspective, its not  unusual for the legs to jump involuntarily,especially in the months following surgeries. For me its something that does settle down as time goes on, but they will occasionally 'jump' for no apparent reason, also,that though there are sometimes other reasons, would say that,stress, especially concerns about my legs can affect the nerves and pain levels.

I too was a younger amputee, it was many years ago now and things were very different but my first legs were not very cosmetic, more functional (I suppose like the hooks you have seen) and when I first saw them on someone else, it took me a while to get my head around what they were asking me to use too, so can totally understand what you are saying about the" hook being strange to look at, and hanging on your body". To begin with I don't think I much liked mine very much, they were heavy and itchy and took some getting used to, but soon came to realize that they were my ticket back to independence and a normal life and over the years the designs etc have changed a lot and they now come to be pretty much normal for me.

I think being an amputee can be quite difficult for us women, partly because often prosthetics seems geared around men, media images of prosthetics are often quite masculine or advertised by men, although this gradually changing, there are a lot of us female amps around though and things are changing Jill, particularly with arm prostheses etc., so the future is very positive for you.  Though as others have said "its not stone age" they should be able to help you with the current pain you are getting and hopefully that will settle down for you, but I know it can be hard though there are specialists now in this field, along with different medications or therapies that can help, so hope things improve for you soon.

[Deleted]

Thanks for this thoughtful answer.

I am surrounded by friends and family, but all I get from them is : "we'll love and suppport you no matter what you want to do" , which is great but non specific..

Other amputees and groups seem to say, essentially, " tough it  out, it could be worse"  or, in one case "" look at me, I lost both hands and I have written a book, had a baby and motorcycles across China".  This is all great but not too much help.


The smörgåsbord of medical choices is a result of the modern idea of informed consent.  Years ago, the doc would have made a decision and that would be that. 
Now society has changed.

I have had four opinions, four complete exams. All docs agree that waiting is  best, all agree that surgery to  turn the stump into a "permanent but numb prosthesis anchor" is also not a bad idea, and all four agree that disarticulation is the worst choice, but still a reasonable one, and all four would do a disarticulation if I wanted it.

All four also agree, somewhat unhappily, that the disarticulation would offer the best chance for immediate and permanent relief from pain.

Disarticulation is also the only choice which cannot be evaluated afterward.

Anything else, I can look back on in two years and say " it worked, I am glad I waited" or " it didn't work".  If I have it removed now, that is it and I will never know what other treatments might have done.  So disarticulation is a self-proving and no regrets  choice.


If a anyone else is going to write back to help me with my problem, now is the time.

My surgery is tentatively scheduled for March 3.  I am on the last of about ten different pain pills, and today I am getting a cast that will hold my arm stump out perpendicular to my body to see if that helps.

Later this week, I am re taking the SAT test to try to get into a real good school with a scholarship next year, and persue an entirely new area.

I know everyone has their own pains and problems, but if you could post or write to me, it would help me much.  

I am  very very young.  I should be picking out prom dresses, not deciding if I want  my arm removed. Surrounded by people who care and doctors who are doing their best, I am still alone.   You more experienced amputees are, or should be, like family.  So if you can help me to deal with this, please take the time to do it

thanks








 

[journeyhome]

We all care here in some form of compassion or another. Please don't forget that. My heart goes out to you. I can't be there sitting in a chair next to you. None of us can. But isn't it good to know that there are strangers you will never know that care. I will pray for you tonight. I don't usually pray anymore. But I will for you. Don't give up. I know that's easy for me to say as I only have one stump to deal with but just don't give up girl.

[cherylm]

Jill, I'm not sure that I have advice to give...you know all my usual caveats: not an arm amp, no major pain issues post-amputation, no longer a young woman, etc., etc....... But I do feel for you and ¥our situation. It definitely sounds overwhelming.

Which is why I think my own choice would be to try and wait this out a little longer. I don't know ¥our level or frequency of pain, and that might make a major difference to you. But I do know what it is like to live with pain, as I spent the better part of two ¥ears in pain while we were trying to sort out the state of m¥ feet and legs. It's not uncommon for pain to subside with time. It's also not a guarantee, of course, but the possibility of being able to develop some degree of functionality, be it with or without a prosthesis, seems like a big thing to give up if it's possible for you to hold on a little longer and see if the pain will decrease.

Right now, it sounds like there is still some part of you that does not want to consider the possibility of a prosthesis "hanging off you." I think it might be possible that the combination of pain and problems of envisioning yourself with a functional prosthetic are making you want to find a "quick way out" of the entire situation. If you think that resonates with you, try to consider that, at some point in the not-too-distant future, you might find yourself regretting not waiting longer.

Now, all of the above is just my personal opinion. If your pain is constant and severe, if the involuntary motions in your residual limb are frequent and persistent, if you are sure that you can accept the limitations that a shoulder disartic. would create in your future, you might do fine having the surgery now. It's quite possible to live life one-armed...Helen is excellent proof of that. But please try to make sure that you're not just putting yourself in another overwhelming situation in order to try and escape your original overwhelming situation. Sometimes, just trying to reach a point where you can step back a bit and--dare I say "relax" or "distract" yourself?--can help your body cope with pain. I hope that might be possible for you.............

Please do know that we do care...

[Deleted]

Thanks for taking the time to write that. This is exactly the kind of advice I am looking for and is very
valuable to me.

As you know. elective surgery is scheduled well in advance, and mine is the first week in March.
Nothing is written in stone, the details and extent of the surgery remains undetermined, and it all can be
easily completely cancelled.

However, as I said, if anyone is willing to help me with this, now is the time.

I need objective opinions like this one. Please.

[penny]

Jill, I don't know anything about the surgery you're considering. I just wanted you to know that even though it sounds as if your world changed two years ago, I'm sure you're still a dainty pretty girl. You may not be fluffy anymore, but most likely you would have eventually outgrown fluffy no matter what had happened to you. I'm sorry you've had to go through all this, but it most likely will help you to become more. I wish you all the best. Just remember that you haven't lost who you are as a person and you're still a dainty pretty girl.

[Deleted]

Why thank you, Penny! I'll post an update soon

[Deleted]

Here is a brief update.

Two weeks ago, what was left of my right arm, and my right shoulder, were completely removed.

So far, the operation has been a complete success.

I learned much about elective amputations, and I will write more later so that others can share this knowledge.

jill

[Deleted]

I have decided there is no real benefit to a detailed note about my sucessful elective amputation. Everyone is different.

I will continue to moniter this board and be available to help anyone;  by posting, privately  any way I can.

Feel free to contact me for help.

[tedatrowercpo]

Jill-

I'm very pleased that your surgery has eliminated your pain. Can you please tell us if they utilized nerve blocks in the days prior to surgery?

[cherylm]

Jill, I'm glad that you reached a decision that was right for you...and that it looks like it's been successful. May this set you on the path to a good life!

[Deleted]

No, no nerve blocks.

I do know a great deal about this. Ask a specific question or write me privately so I can help