Amputees Support Group
Amputation is the removal of a body extremity by trauma or surgery. Many have undergone amputation or have been living with a missing limb since birth. In either case, life as an amputee can be challenging. This is the place to find others going through the same experiences as an amputee. Share your thoughts, troubles, and solutions with the community.
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.
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 smrgsbord 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.
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
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.
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 smrgsbord 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.
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
Pretty obviously, you'll need to make the final decision yourself. The most important thing is that you're comfortable with your own choice.
My bias would be in line with your doctors. Wait longer if you can. Pick a less drastic surgery if you must have surgery.
I have to say, it's not clear to me that disarticulation would be guaranteed to eliminate the pain. I'd be fearful that might be trading your current pattern of pain for phantom pain. It seems odd to me that tissues that have had so much time to heal should still be exquisitely painful to slight movement, unless you had reflex sympathetic dystrophy. I have no idea whether an amputation could treat RSD pain, that kind of question is for a real specialist. My bottom line would be to encourage caution and careful thinking.
Although no guarantee is possible, it is a reasonable certainty that disarticulation will solve problem.
The chance that this pain will clear up with time, and the vastly imcreased chance of prosthetic use if I have a movable shoulder stump, balance against the operation.
Anyone's opinions would be very valuable to me at this difficult point in my life.
http://www.boneandjoint.org.uk/highwire/filestream/15464/field_highwire_article_pdf/0/270.full-text.pdf
and here:
http://oandplibrary.com/poi/pdf/1994_02_109.pdf
Althouh I have made a thorough search, I did not find the first article, which is the most important information for me. Thank you deeply for is.
Check my thinking on this:
On close reading, this information supports disarticluation, complete removal, over modification.
Recurrence in the opposite limb is rare. Recurrence in the stump of the amputated limb is common.
Since my stump is short anyway, I am inclined to interpret the information that if I do the operation at all, a revision is a mistake, .i am better off removing the entire arm or not doing anything.
And the information in the article, taken objectively, would be to wait and do nothing for the time being.
On the other hand, I am the one on pain, not the author of the article and I am assured that this is not RSD. And we all know that doctors are never on error!
Here is another line of thought I want your opinion on,
Let's say that best case outcome is that after two years, I am free of pain. I then have a access to prosthetic options for a very high AE.
Is this worth the two years of immobilizing pain? What I feel is like someone drilling into a tooth without novicane. How much such pain would people take before pulling the tooth? Not two minutes, let alone two years.
So there remains somethingnto be said for getting it removed, if only I could be guaranteed that that would be a cure, which of course I cannot.
Some the entire thingnis a horse race, a crap shoot, a backgammom game.
Do I wait of roll the dice?
If I have it removed, there is no way to know what would have happened if I had kept it. Thus, the decision to remove it is one thay can't be second-guessed.
If I keep it, I will know in a year or so if keeping it was the right choice.
Very few decisions are unilateral in this way.
But I still suspect further amputation might not be your best option. See, for example, RSD case reports (and I'm still suspicious of that Dx, despite your doctors' assessments):
http://www.painphysicianjournal.com/2008/may/2008;11;339-342.pdf
But they're in Houston, and I think your profile says CO. So maybe see one of these docs?:
http://www.asipp.org/Colorado.htm
the cure rate for amputation for RSD is small, only about 3%.
Not much, though.
RSD is a dismal diagnosis.
If it was, that would tip the balamce firmly away from any operation.
This choice is just a gamble. based in insufficient information, like most everything in life.
Most cases don't get diagnosed until the sufferer has been to quite a few doctors -- thus my skepticism about your physicians' statements.
Few doctors of any specialty are real experts in this. Most are anesthesiologists (but only those who specialize in chronic pain).
Some are neurologists, some are physiatrists (physical medicine + rehabilitation specialists). I'd be skeptical of any orthopedist either making the diagnosis or ruling it out.
It occurred to me that even if you don't have RSD, virtually all the treatment options for RSD have some likelihood of helping pain of other causes. In other words, I see no downsides to pursuing RSD treatment, even if something else is the cause. An interventional pain physician (like the list I gave -- usually these are anesthesiologists) might be your best option. Common options include stellate ganglion block, TENS unit, whirlpool, other physical therapy, anti-depressants and opioids. All of these are far less drastic than amputation. And surely, trying SOMETHING is going to be easier for you than just passively waiting for the pain to improve.
I have talked with docs about RSD and along with the assurances that it is not RSD, always been additionally told that even if it is, the disarticulation will " cure" it.
My understanding is that generally amputation does not work, the pain returns in the stump.
But that with complete removal of the entire limb, RSD will not return.
This militates first towards doing no surgery at all and trying alternative treatments, but if I do surgery, it strongly suggests that fusion and nerve block type treatments that retain the stump are far riskier than the disarticulation.
is my thinking clear here? why or why not?
again so many thanks for your help in this sad time.
I wouldn't think a stellate ganglion block would be terribly risky. Any intervention carries some risk, of course. But I'd think retaining some arm function would be worth some significant risk.
Fusion? I don't know, I'd think fusing the humerus to the scapula would be a dreadful thing.
I think the only thing I can confidently recommend is seeing an interventional pain specialist before doing an amputation.
I will be admited for a full workup tomorrow and then make an informed decision based on all available information.
You were very kind.