Need op on foot

Hi all I have been told that I may need a operation on my right ankle but the surgeon as told me that he can not do the operation he also said he thinks that other surgeons will say the same, he says it's because of my CRPS so I spoke to my pain specialist and he thinks the same and he also told me that if a surgeon did do the op I have 90% chance of getting the CRPS in my foot. So I told my pain specialist too tell the surgeon to amputate my foot too match my left arm that I had amputated or I will go and see my GP and get some sleeping tabs and just end it that's how I feel.

[Bananas5]

I can't imagine what you are going through - only empathise.

You don#t say why you thought you might have needed an op on your foot. Neither do you say why have had the other amputated?

Surgeons don't remove them without very good reason.

You seem to have a pain consultant - have you talked through your fears with him?

2 men in my life. Nephew paralysed and in wheelchair at the ahe of 28 with 1 useless lumps of legs. No pain but neither will he ever walk again. My David - broke his back at 36 and confined to a life of chronic pain every minute of every day.

Both have challenges in their lives and both meet them head on. Plenty of bad days and depression at what might have been. We can't change what's past but we can make a future.

I won't say pull yourself together - that doesn't happen. But do talk to your family if you have one. Here if you like. We all have bad days when nothing will work.

Take care

Pat x

[Hidden in reply to Bananas5]

Hi pat I had my arm amputated because of the CRPS my arm was dead from the elbow down and my hand was deformed, and as for my foot the joint between the leg and foot is no longer their so it's bone rubbing bone. My meds are high I am on 80mgs OxyContin, 900mgs pregabalin, 200mgs amitriptyline,

160mgs gliciazide, 5mgs saxagliptin, 30mgs mirtazapine, 60mgs fluoxetine.

And as for my partner she dose not help me my 14 year old son dose what he can I try and do what I can but it's hard I have no family on my side, I know there are people worse off than me and I should be greatful for that but I don't, with the way it is with my foot Is i can hardly stand on it and when I try I full over last week I fell over three times and there was no one to help me that's I dont what to carry on

[Bananas5 in reply to Hidden]

That is some list of meds.

I didn't men to imply there are others worse of than you. That is unimportant and sorry i should not have mentioned.

If your foot won't carry you and you fall over - then surely OT can help? You should not be left to 'cope' on your own. Is there a CPRS society? Or amputee? I know there are for ex servicemen.

Someone somewhere can help you it is just finding that organisation who will advise and support you.

I can almost understand why the surgeons don't want to remove your other foot but then they don't have the pain you do.

Have you tried googling any of this support? I can#t do links otherwise U would.

Sorry I'm no more help but please stay with us.

Pat x

[Hidden in reply to Bananas5]

Thanks pat I have tried to get in touch with some of the organisations I still waiting for them to get back to me it's been about six or seven months when I got in touch with them. My GP has sent a e-mail to the fulls team but I'm still waiting to here from them, my pain specialist has told me that they will not amputate my right arm when it go's it Gould be two to three years he just don't know yes I have CRPS in my right arm and hand.

I have no mates they have got their problems, I just don't no what to do any more I have work all my life and it's been four since I have work it started when I had the operation on my hand for carpool tunnel the doctors at the hospital did not pick up about the CRPS till it was to late. And now I have a stump and a arm in witch I dont know how long before it go's and foot that no good

[Bananas5]

Right young man. Do you want to message me and we can chat away there?

I have to go out now to visit David in hospital but be back later.

We'll give these groups you contacted a kick up the btm to shift them. Me not you - not having you fall over on my watch!!

Pat x

[Hidden in reply to Bananas5]

Thanks pat x

[Hidden in reply to Bananas5]

Hi pat sorry not been in touch the groups that I have been waiting for are now in place it's only because I had a bad fall and that I needed 44 staples in my head, I am so mad about it that it took a bad fall for them to do anything I been told that when I go home on Friday that some one from the fall team will be there to meet me. I was told that i was lucky to be a live

[Bananas5 in reply to Hidden]

That IS great news. Not the bit about having 44 staples i your head but that something has been done at last.

Hope it all works for you and you get that help and support.

Take care

Pat x

[Hidden in reply to Hidden]

Hi all came out of hospital on Friday I was told that some one will be out to see me on that day but no one came I waited all day for nothing so I went and seen my GP yesterday and I told him what had happened he was not happy about it he also said that he is sending me to see a surgeon about my ankle my GP thinks I got to have the operation on my foot but I said about the CRPS, but he said it's a risk I must take. I just don't no what to do so if I have the op and I get CRPS which I know that I will get it how do I know that I will get it my pain specialist has told me any more op's and I have a 99.9% of getting it. I think the best thing I could do, I have a good life apart from this 4 years

[CarolineC57]

Hi Yogibe - I don't have CRPS myself but another pain condition, but I wanted to respond to you as you sound in such a bad way. Pat sounds like she's giving you some great advice and support here. I looked around the forum here and found another thread about this problem, and found this link on there:

rnhrd.nhs.uk/page/79

It seems it's a specialist unit to help people with this problem - and it looks like you can get referred on the NHS from anywhere in the UK. It might be worth having a word with your pain doctor about this?

I hope you can find some relief soon. It sounds awful.

[Hidden in reply to CarolineC57]

Thanks carolinec57 x

[Curlygirl54]

Hi Yogibe,

Just wanted to echo - you are not alone here, sounds like Pat is giving some brilliant support and I agree totally with the link Caroline has given you, the Bath hospital has an excellent CRPS service and anyone in the country can access it. They do an inpatient programme which may support you in all sorts of ways.

Please come share on here whenever you feel low, I ( and I'm sure others) care and will do whatever we can to share your heavy load and support you.

Take very good care of you,

Thinking of you,

Shirley

[Hidden in reply to Curlygirl54]

Hi curlylgirl54

I been to the Walton centre in Liverpool to see doctor andras goble he is one of the top specallist in liverpool and Europe to do with CRPS.

He has tried a lot off things like spinel cord stimulates on, meds, and nerve blocks, I'm on the max of tablets I just come to the end of it all

[Curlygirl54 in reply to Hidden]

Am very concerned about you Yogibe, I see your reply was very late - I guess the wee small hours are the worst? I'm wondering what sort of support you have and if your docs are helping you with the psychological aspects of how you are feeling.

Hoping the daylight has brought a chink of hope for you.

Take very good care of you,

Shirley

[Hidden in reply to Curlygirl54]

Hi curlygirl54 yes I only get one or two hours a night if I'm lucky then I am up for the rest of the time, I have no support in place and my doctor dose Notting for my psychological side off it I have to fight for everything I need that why I am tied off it all.