Jump to content
Heather Mills - Amputee Forum
Sign in to follow this  
lynnieb

to amputate or not?

Recommended Posts

I lost the use of my right arm, (I was right handed) nearly four years ago. I have neurofibromatosis, a genetic disease which means I have tumours all over my nervous system.

I qhave been told I will never get the use of my arm back, and at the moment, I'm in a sling 24/7. I'm starting to get problems in my other shoulder cos of the constant weight on it, and the useless arm causes me a lot of pain. Because I can't feel much, I keep burning it, and getting dressed is really hard because my shoulder is fused.

The thing is, I've been considering getting it amputated. It is a very hard decision and I just don't know what to do. Once its been done I obviously can't change my mind, but until I havre it done, I'll never know if it helps. How on earth do I make a decision like this?

I'm in a lot of pain all the time because I'm only 34 but also have osteoporosis, and scoliosis and iother problems. I just think uit'll be one less thing to worry about. Can anyone help me please?? :blink:

Share this post


Link to post
Share on other sites

Hi, its a hard decision for you to make. I had a similar decision to make this time last year, only about my leg.

The way I looked at it was, I would get rid of the terrible pain I was in, and what use to me was it really, I couldn't walk without crutches, I had a really bad limp, so nothing could be worse. I now have my new limb, two weeks old, and I am trying to start over. It will be slow but I will get there in the end.

I met a man at the limb centre who had an artificial arm, he showed me how it worked, through his muscles. It was very impressive. Are you able to get any advice or meet someone in the same position, it often helps to 'swap notes'.

I hope someone here will be able to give you some better advice.

Good Luck.

Share this post


Link to post
Share on other sites

Sorry, i'm a bit confused here. You mentioned in a past post (16Jun2004) that your arm has already been amputated and then in the same post that it hasn't been. Excuse me if i read that wrong but it is very confusing. Are you talking about your other arm?

QUOTE '' I have no yuse at all in my arm, so for all ibtenbts and purposes it has been amputated. It is very heavy, and I have to wear a skling 24 hours a day which pulls on my neck. Some days I feel like asking to have the asrm amputated, but I just don't know. I've been told a nerve transfer/transplant is out of the question. '' QUOTE

It is also very difficult for someone here to advise you whether you should have your arm amputated or not. That shouldn't realy be expected. The best thing is to get at least two opinions from doctors.

This discomfort you are going through has been going on for quite a while now. Better get it checked soon.

Good luck!

Share this post


Link to post
Share on other sites

As Kaz says no one on here can give you an answere here it is such a personal decision.

You really seem to need to speak to some professionals for some expert advice. One thing is certain you should not go ahead with the amputation unless your mind is 100% positive it is the right thing to do.

Good luck and take care.

Share this post


Link to post
Share on other sites

Kaz,

Silly me, I thought I might get a symapathetic ear on this website. You obviously trawled through all my other mesages to seeif you could catch me out?

When I said for all intents it is amputated, what I meant was, because there is no use in it AT ALL, it is like living with only one arm.

What you need to understand is I live in constant pain. I have tumours in my spine, head neck and aorta. I have a curved spine. I have osteoporosis, and I now have problems in my other shoulder because of wearing a sling constantly. I'm sorry if you don't think I'm being fair, but I'm imn a state or turmoil not knowing what to do. I though likeminded people might be able to be empathetic and offer some advice from first-hand experience, not argue about semantics.

Kaz, you have really upset me. I thought this site might offer me a refuge. With friends like you though, who needs enemies?

I'd still be really grateful for an opiniom from anyone else in a similar situation. Although I've been told I'll never get the usde of my arm back. I'm finding it hard to make the decision. Thanks.

Share this post


Link to post
Share on other sites

I don't think Kaz was trying to catch you out deliberately. She just wanted clarification about what you had said. I too looked back at your previous posts and eventually worked out what you meant. I also noticed that you've been asking this question for quite sometime. So the quick answer is that if you're still unsure whether you should have an amputation that answer has to be no.

Now the long answer is that you should check all sources of information both about your condition and about amputation and its affects, both long and short term. By all means ask us for information (I believe there are others on this site suffering from the same condition as yourself) but don't expect us to tell you to do something that you're unsure about yourself. We can only tell you about things that we know from our own experience and that may not be suitable for you but only you can judge that.

Share this post


Link to post
Share on other sites

Yep, if you reread my post i just asked for a clarification of your situation. You also have as membership type: amputee. It was confusing.

There's no need to become offensive.

You did ask the direct question in the title ‘to amputate or not ?’. I believe noone here is qualified to answer that question for you. Ofcourse, there may be members in similar situations who can offer you advise to a certain degree, that would be great. But a decision is best left to the professionals.

I’m sure you agree that this is the correct approach for your best interests.

Share this post


Link to post
Share on other sites

Kaz, I'm sorry you think I was offensive, but that is exactly how you came across to me. You made me very upset, when all I did was asked people in a similar situation for their opinions. it is a very difficult for me making this decision, (especially in between other surgery for numerous tumours thast I have). Why did you bring up an old message and question me? It made made feel you were doubting my sincerity.

I know no-one else can make this decision for me, but I assumed that others who've been through the trauma of amputation, (and just because the surgery I had didn't physically remove my arm, didn't make it any less traumatic - before operation I had almost full movement, after it, I had none in the arm or shoulder at all) may have had some empathy.

It's taken since last July for me to get an appointment with my surgeon, and that length of time is more to do with the shortfalls of the NHS than the difficulty I have making my decision.

This is a very hard decision to make. I just wanted was some thoughts and advice from others in a similar situation.

Share this post


Link to post
Share on other sites

Hello lynnieb I am really sorry to hear that you have been upset by the comments made by Zaz I do think that she was being rather insensitive but some people can be rather blunt. Anyway I can sort of understand what you are going through I lost my right left below the knee in June 2004 but like you the decision to amputate or not was mine alone. The consultants and a saw many all agreed that my foot and ankle could not be repaired (I could only walk in considerable pain) but obviously even though the doctors told me that things would be better if i had the amputation i could not imagine life with part of my leg missing especially as i was signing the consent form for them to chop it off like you it would have been easier if the decision was taken out of my hands. I continued in terrible pain for 2 years not knowing what to do, I was on so many pain killers by consultant did not know how i managed to continue but still i limped on because i could not be 100 percent sure that i was doing the right thing. I do not really know what made me make up my mind to have the amputation (i even tried to get off the bed when they where taking me up to the operating theatre) so what anybody else may say i do not think you can ever be 100 percent sure but anyway 7 nearly 8 months down the road i am walking again and almost pain free i only wish i had gone ahead with the operation years earlier but if we all had hindsight what a wonderful world we would live in. I realise things for you are different obviously being your arm but all i will say is that once again i do not think you will ever be 100percent sure but if you are in that much pain it must be the best thing possible and the sooner you go ahead with the operation the sooner you will get a new arm and start a new way of life, look at it like that your arm is never going to get better and not being in all that pain must be better.

Tricia

p.s. if i can be of any more help please let me know and i will give you my e-mail address.

Share this post


Link to post
Share on other sites

I must say, I too am a bit confused with your answers in your Membership Type

'Amputee' plus adding the Amputee Date- 'June 2001'. What I don't understand is, if you've already had this done, why now do you need someone to help you make the decision, as in your 'topic'?

I'm really sorry you seem to be having so many problems in your young life, but when you put down as an 'Amputee', that is what we go by, not that you might as well be. How we may offer our opinions on different things, depends on how a person/amputee goes about explaining his/her situation.

I don't believe anyone is saying that b/c you didn't have your arm physically removed, makes it any less traumatic, of course anything like that is traumatic. But from what I see on your Membership Status is that you 'ARE' an amputee. If one becomes a parapalegic and has no use of his/her legs, it is definitely just as traumatic and devastating to them, but that does not make them an Amputee. I don't mean to sound harsh and certainly not trying to offend anyone here, if so my apologizes, but Please try and be clearer with your intent and we'll do all we can to help you out. Good Luck :)

Sheila lbk

Maine USA

Keep Smiling :)

Share this post


Link to post
Share on other sites

Hello Shelia

I have just read your reply to lynnieb and yes she may be wrong in what she had put in her membership but surely we can all read her posting and be a bit more sensitive to her problems and not be so nit-picking about what is in her membership details so she got it wrong but now she is asking for help and advice can we not be just NICE AND HELPFUL or is that too much to ask for.

Tricia :(

Share this post


Link to post
Share on other sites

Of course I would offer to help her or anyone all I can, but would just like to know, is it for an amputation or about to be an amputee? Also, I would not give advice to anyone, as to what they should or should not do, in my opinion, that should be her's and the professional's decision. So please don't assume that I or anyone feels it's to much to ask, to be HELPFUL!! :(

Sheila

Share this post


Link to post
Share on other sites

In order for progress to take place and eventually (hopefully) a solution, questions need to be asked to be able to assess the situation in the first place.

You asked the same question half a year ago and i hope for you you get the information you need this time. It's just a long time to be carrying such a burden around with you. I'm not (nor is anyone else who has posted here) being insensitive or unfriendly in suggesting you get the right help you need by now in the right place. We are here to support you the best way we can.

Share this post


Link to post
Share on other sites

I have just allowed my two daughter to be logged onto a Uk to New Zealand web site and I have gone through anumber of things with them. One of which have been highlighted in this thread.

Some people can be offended a lot easier than others, so especially on a site like this I concentrate on every word I write and try to view the posts I read from every angle, including ones in which a person may have not written a message exactly the way they want it to be portrade.

I am not in anyway choosing sides but for the sake of a person who is asking for help when she is in great pain and distress PLEASE forget the misunderstandings life is too short and painful enough for us all as it is. Lets concentrate on trying to point her in the right direction.

I know nothing about your condition Lynnie, have you contacted associations that deal with your condition so you can talk to people who have had to make the same decision as yourself? There are so many help groups out therefore for (it seems) every condition. Hopefully over the next few days someone on this site maybe able to help you more.

Please try to put this little upset behind you, in the great scheme of things it is nothing and by my own experiences on this site the people are all very lovely and keen to help.

I wish you all the best.

June

Share this post


Link to post
Share on other sites

Shelia

I think it is pretty obviously by reading her first posting what her situation is regarding wether or not she is an amputee, about giving her advice obviously everybody has different opinions about this, but going from my own experience any advice from people that have been there is a help.

She has obviously chose to come onto this web site hoping to get some help and looking at some of the replies she has got I only hope she is not too upset.

Regarding making a decision like hers should only be down to her and the professionals, when I was sort of in a similar situation I found the 'professionals' not that much help.

Tricia :rolleyes:

P.S. what June has said is definitely right, life is too short and most people on this web site are lovely.

Share this post


Link to post
Share on other sites
Guest

I am in a vaguely simliar situation, in that I could opt for an amputation and am unsure what would be for the best, will it help or hinder etc

Shortly after I joined this forum they brought in the categories. I wasnt sure what category I should come under and Amputee seemed the only choice at the time, until Johnny pointed me in the right direction. It can be rather confusing when you dont fall neatly into the right hole as it were. (its why I put my details in my signature! ;) )

Id say talk it over with your doctor and maybe get some counselling too (I am seeing a clinical psychologist atm and i find it very helpful). If there really is nothing else they can do and its essentially a "dead weight" I personally would opt for the amputation. Its a very personal decision though - good luck :)

Share this post


Link to post
Share on other sites

Yes Tricia, Sheila is a lovely person and a great asset to this forum. :)

I would like to think i am too, but alas we can't win 'em all! :rolleyes:

So people, let's move forward !

Share this post


Link to post
Share on other sites

Thank you Kaz, I hope that I am and I agree, lets move forward!

Sheila

Share this post


Link to post
Share on other sites

Hi LynnieB,

We don't really have many arm amputees who post here. If you are looking for some reassurance that you will be okay if you do decide to have the surgery, it will be different but no one can know just how things will play out. There are many good people here and if they could give you more information they would. I gather you are in pain and are conflicted about which way to proceed. You might try going to Bethany Hamilton's website, BethanyHamilton websiteshe is an arm amputee and probably has more people on her site who could help answer your questions. You should be doing as much research as possible before you move ahead. Good luck.

Share this post


Link to post
Share on other sites

Lynnie,

Is your arm completely dead? ie can you feel nothing with your arm or hands? If this is the case then probably amputation is for you as you are likely to damage your arm without realising it and then risk infection if you have a lose limb swinging around.

Just remember though that very few of us on this site are medically trained or qualified and that any thing we tell you is just an opinion or comes from things that we've experienced ourselves. None of us want to put you on a course of action that you may later regret.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×