When is it OK to give up?

[UK Girl !]

Hi Laura 

Good to see they are finally getting something done !
How will the TKR if needed effect the RDS? I know I have asked this before - but seems a bit scary...........

I cannot believe you have to wait so long for the result of your MRI - seems like you got lost in the system there !

I have an mri on my shoulder 2/6 and should get back to see the OS 2 weeks later. They are trying to decide if it is a trapped nerve/torn rotator /frozen shoulder ! - has been going on for 2 yrs !

take care
anje x

[Doc79316]

Hi Anje,

Hope you get your results quicker than I have.

The good thing is that being under another OS also at the Royal Orthopaedic means I already know what can be doone. So if my OS tmorow says he's out of options I'll ask to be discharged. There's no point in me goin gback to see him if he won't fix anything.

The RSD will most likely flare up with any surgery. Solong as it's managed well and they're aware of it, it souldn't be too much of a problem. I have the RSD pain anyway. Hopefully the TKR (or any other surgery I have) will at least relieve the mechanical pain from the dislocations and arthritis etc.

Laura xx

[Doc79316]

Hi,

My OS appointment was cancelled - and they didn't call to tell me 

So I now have the appoinmtent with my original OS on 27th July. This is the week AFTER I have the laser acupuncture at hte ROH and they'll decide then whether they're going to try to move cartilage about (although they did say it was unlikely as it can cause as many problems as it solves with the amount I have left) or perform a PKR or TKR.

This has all happened since being referred to them a few months ago whereas at Solihull, I've been under the same OS since 2004 and he still hasn't fixed the problem. He also told me before Christmas that he'd deal with the pain management issue too since my pain consultant discharged me - but agani I've heard nothing.

I think I'll call his secretary and ask if there's really any point in him seeing me. After all, he tells me he CAN do a TKR but won't because of my age but never comes up with anything else. At least the new set of doctors at the ROH are making an effort to fix it.

Laura xx

[opie]

Is there any reason why the nerves can't be severed completely? If I already have nerve damage then they can take it one step further and destroy them altogether. Problem solved.

L.x

It's not that easy.
My mother in law has rsd from the removal of a heel spur. I did a considerable amount of research and it seems that there is no cure. It can be alleviated but they need to catch it early in order to help.
 My mother in law was in so much pain that she asked the doctor to amputate the leg. It seems that even if the leg was amputated the pain would still be there, since it is a phantom pain. The nerves are telling the brain that there is pain and doctors don't really know how.

I started a support group in this area so that my mil would have someone to talk to about it. The local newspaper ran an article on the group and in the next 7 day I had over 100 about a disease that I had never heard of before my mil.

[Doc79316]

Hi,

Well done for starting the support group.

With RSD the pain comes about as a result of the sympathetic nervous system going haywire and doing it's own thing. I've also been in the position of asking my OS to amputate - and if he couldn't, to put me in touch with a surgeon who could and would. Of course he didn't and members here spent a long time trying to talk me out of it.

Even today (I was diagnosed early 2006 with RSD and it was never properly treated) I would accept full amputation above the knee. At the end of the day,as my pain starts at a point which could be below the amputation site, I don't see how it can continue afterwards.

With regard to phantom pain, there are plenty of people who deal with it and that in itse;f isn't going to be too noticeable with the pain of the RSD.

Nothing to do with this but I have a friend who lost the lower part of his right leg in a motocycle crash. He now has a prosthetic limb (not the flesh coloured one, the one where you can see all the metal and working parts) and he goes horse riding, plays squash, goes jogging and goes to the gym. Now, if someone without a leg that is useless can do all of that, then I don't see why I can't. He has over half of one leg missing and he is so much more mobile than I am!

Now I also have the problem of my left leg swelling to such a size that it looks as though I have attached an extremely tight elastic band around my ankle. My foot is the correct size and shape byt my leg from the ankle up looks like a reddish/purple tree trunk. A nightmare when trying to wear trousers (on the occasional days I'm able to).

Anyway, I wish your MIL luck with her treatment and hope she's able to overcome the RSD better than I have.

Take care,

Laura xx

[The KNEEguru]

Have just done some housekeeping on this section, so this is a dummy post to bring the thread to the top of the 'moved posts'.

KNEEguru

[Brambledog]

Hi guys,

I know this thread has been dormant for a while, but I've had CRPS in my knee since an arthroscopy a year ago and I'd really like to know how you're all doing now alsmot two years on from these posts!

Hope everyone is doing ok.

Brams 

[Nettan]

Brams, I do know Laura. We were in contact a while ago and she has spreading to here other leg also.
There are a lot of groups on Facebook with RSD/CRPS. If you want any help please let me know.
Sorry I have been away so much and not responded, but there has been so much last weeks since my fracture so I have had enough to update there.
/Nettan

[Brambledog]

Hi Nettan, how are you doing these days? Sorry to hear about the fracture - what happened? Hope you're not too badly hurt. Sorry to hear that Laura's got spreading of her CRPS to the other leg, it's one of my big fears with the damn thing. Mine has spread to a larger area around my left knee (where it started), and to my left foot. I sometimes get some of the symptoms on my right foot as well, but nowhere near as often as my left, which is pretty much every day!

I'll check in on your other thread and see how you're doing, but take care of yourself now!

Brams 

[Nettan]

Hi Brams !

I have spreading to my other leg too but partly and to my tummy. Tummy is difficult. Sometimes I can't eat any or keep any.
I'm not doing that well. You find updates in my other thread.
Have to be up early tomorrow to surgeon and for fitting braces and cast.
Take care of you !/nettan

[Brambledog]

Crumbs Nettan, you poor guy, that sounds grim  Horrible that it affects eating and everything that goes with it. Hope today is a better day all round.

Take care and keep 

Brams