First post. Amputation a good option?

ThePendulum

First of all I'd like to say that I have been reading through this forum for a couple months now. Everyone here seems incredibly nice and I wish the best for everyone here. I see quite a bit of sadness here from time to time but also alot of happiness and support as well.

I have mostly kept my problems to myself because it's hard for me to find anyone that comes even close to understanding what it's like to have constant pain and stiffness but here goes. I had an injury to my right right finger about 8 years ago (I'm 32 now). My bones/joint never quite healed correctly and over the years arthritis/pain was getting worse and my finger kept getting more disfigured. I haven't ever been able to properly make a fist because of this pretty much since. I've had three surgeries on it in the past year (stem cells in a joint to help with movement and pain), tenolysis and this year I received an experimental prosthetic joint in my finger with a NEW doctor. It worked!.... Kinda. My PIP/middle joint is moving very well but the tip of my finger isn't moving at all. On top of my finger being twice the size of my other fingers.

The thing is... I don't have the same pain in my finger anymore but now I have new pain. It feels like my tendons and pulleys are just completely shot and I'm still unable to make a fist. Opening and bending my finger is tight and still hurts. I've been doing physical therapy for a good year. I'm just completely fed up with dealing with my finger. I asked about amputation and my doctor said I should wait 6 months to consider it. I don't really want to wait anymore because I can see the disappointment coming. My family and especially my mother have been screaming and crying because I'm even considering it but I don't think they understand how it actually feels and it depresses me even more.

I'm tired of being in pain and crying half my days. I'm tired of my brain telling me I can move something but my body won't. I want to be able to focus on life more than the pain I have in my hand and I'd like to be able to make a fist even with one finger missing. I can't seem to find much info online about amputations as an option and the after effects of them. Supposedly pain can actually be worse after? Has anyone here have had the option to amputate a limb which causes problems? Or if you went through with an amputation do you think it was worth it?

I'd really appreciate some light on my predicament. Thank you.

[Deleted User]

Hi the pendulum. Welcome to the forum,sorry to hear you are in a lot of pain at the moment,it must be very tiring for you.
The forum is a very good place to chat and full of lovely understanding and encouraging people who will understand what you are going through. We have a contact number if you wish to talk to an actual person,it is. 08088004050.or you can talk on the forums Living with Arthritis and Chit Chat being the most popular forums
All the best Christine

stickywicket

Hi there, Thependulum, and, first of all, thank you for a lovely, kind first paragraph.

I'm afraid it's not at all unusual for arthritis to set in at the site of a former trauma and, unfortunately, we all understand on here how painful arthritis can be whether in one joint or many. I can also understand how difficult it is when you are only quite young as your contemporaries don't really understand even when they try. I was diagnosed with RA at 15. That was practically a lifetime ago. Living with it has got easier as the disease has got worse because one does get used to pain and also now my contemporaries are starting to feel less invincible.

The trouble with hands (and feet) is that they contain so many bones anything that happens to one can impact on others. This holds for amputation also. I knew one lady who had her arthritic finger removed because it was leaning onto others but the finger next to it simply moved over to fill the gap. Also, people who have joints amputated can still experience phantom pain. It's not just a matter of cutting out the bad bit and getting back to normal as you seem to have discovered with your surgeries.

Personally, I can't remember when I last was able to make a fist but, until recently, I rode horses (with specially adapted reins), I can type, do housework (unfortunately ) and a whole host of other stuff.

My gut feeling, to be frank, is that you'd be better off accepting where you're at and putting your dedicated efforts into learning how to live with this. It's not easy but we are amazingly able to adapt and change. Many of us find that the best way to ease our pain is distraction - anything that really grabs our attention and absorbs us. Concentrating on it makes it all much worse.

Have you tried giving our lovely Helpline people a call to talk things over? A problem shared.....as they say.

ThePendulum

Thank you stickywicket for the response. I'm still considering calling someone but I'm still not sure yet. I'm not sure how I would feel about it and most people don't want to talk to somebody that's miserable.

I understand what you mean when you say it might be best to keep my mind off of what's bothering me but I've been doing that for so long and there is always a deep resounding sadness in the back of my mind because of my little situation.

I looked up alot of problems and complications that may occur as a result of amputation but I don't feel like I have too much choice anymore. Also, because of the size of my finger I barely have any room for my other fingers on my hand. If I keep continuing the way I am I'm going to end up very unhappy and alone (or worse). Though, being here I feel better knowing I'm not alone in this and in fact makes me appreciate how generally healthy I am. I can't imagine going through what some people seem to be going through.

I'm going to leave an image of my hand in question so you can see what I mean. It may look swollen but it actually isn't very swollen at all.... it's just what my finger has finally come to after all these years.

https://imgur.com/i0kPoA2

dreamdaisy

Hello, it's nice to finally meet you but it is a shame you have had to find us.

I dimly recall the days of many moons ago when I had one affected area and the impact it made on my life; it was a knee as opposed to a finger but it made a difference to what I could do and how I did it. My hands are affected but luckily only by my psoriatic arthritis which is usually controlled by the meds. First thing I can usually make a fist with both hands but at other times no (possibly the onset of OA which is elsewhere) so I gently work at stretching and flexing my fingers to get them moving, soaking them in warm water if required. Harking back to my teaching days (I was a private tutor for dyslexics many of whom, unlike me, were left-handed) I have taught myself to be as ampidextrous as I can so if one hand is having a poor day I can employ the other, maybe not as skilfully as before but enough to get things done.

I have experienced times when I would have been more than happy for my spouse to take me to the garage, throw me across his Black and Decker workbench and let rip with the boy toys but a) he always refused (wimp ) and b) I am aware that amputation can bring more troubles than I think it might solve. I have long-forgotten the days when pain was so localised, it cannot be easy. DD

stickywicket

I apologise for not replying before now. I managed to miss your reply. I have rather a lot going on right now in addition to the arthritis.

I'm sorry but I did have to smile when I read that you have not called the Helplines because 'most people don't want to talk to somebody that's miserable' That's exactly why they are there. People who are not 'miserable' don't need to ring. Please give them a try. They are very understanding.

You write 'there is always a deep resounding sadness in the back of my mind because of my little situation'. I think that probably means you have not accepted your situation. Until / unless you accept it you will be unable to move on and see just how many great things are still open to you.

Many people come on here seeking a 'cure' though I think you're the first who saw a 'cure' in terms of amputation. Usually it's herbal remedies, supplements, weird diets and suchlike and, to be honest, I think we've all had a go at one time or another. I know I did in my early years.

If you got really lucky I guess amputation might work where your other surgeries haven't but usually, even where arthritis comes as a result of trauma to one joint, it doesn't restrict itself to that joint and moves in elsewhere too.

What medication(s) are you taking and how does your finger impact on your work?

Your finger does look very swollen but, if your latest surgery was only this year, you can't be very long post-op and you say you've also had two more lots of surgery on it. Is your latest surgeon happy with how it's going? Is he suggesting more exercise or more rest or more icing for the swelling? Surely, with the right treatment, it will resolve in time?

Whether or not to go for amputation is, of course, your decision. If it were me I'd want to ask the surgeon about the success rate of putting an end to arthritis. (I'd guess he won't/ can't answer) I'd want to know how many fingers he'd amputated and what constitutes 'success' both in general amputations and in those for arthritis. I'd want to ask my GP's advice. I'd want to know what I could do first to try to get the finger more usable.

You seem to have concentrated on the surgical route all along. Personally, I prefer medical. My surgery has always been a last resort and, although I regard both my hips and knees as great successes, maybe I'm not expecting quite so much of surgery as you are. None of us is perfect. For me, arthritis is all about accepting where I have to be and finding all the best bits, never looking back to some perceived lost Eden. Fifty seven years of arthritis have not prevented me from living a happy, fulfilled life. I wish you the same whatever choices you make.