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Author Topic: When is it OK to give up?  (Read 238286 times)

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Offline UK Girl !

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Re: When is it OK to give up?
« Reply #1155 on: May 09, 2009, 09:22:54 AM »
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
1978 - ruptured acl and all cartalidge removed.
several debridements over years
TKR 10TH JULY 2006 http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=28257.0  Aug 07 patellar maltracking - more physio! Still pain - but so much better !
BIOMET AGC  TKR  (with 10 yr warranty !)

Offline Doc79316

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Re: When is it OK to give up?
« Reply #1156 on: May 10, 2009, 03:58:51 AM »
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
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline Doc79316

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Re: When is it OK to give up?
« Reply #1157 on: June 20, 2009, 12:14:00 PM »
Hi,

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

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
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline opie

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Re: When is it OK to give up?
« Reply #1158 on: July 13, 2009, 08:27:06 PM »
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.


Offline Doc79316

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Re: When is it OK to give up?
« Reply #1159 on: February 02, 2010, 01:20:57 AM »
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
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline The KNEEguru

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Re: When is it OK to give up?
« Reply #1160 on: March 12, 2010, 05:46:42 PM »
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
--
KNEEguru

Offline Brambledog

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Re: When is it OK to give up?
« Reply #1161 on: September 14, 2012, 11:59:57 AM »
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  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline Nettan

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Re: When is it OK to give up?
« Reply #1162 on: September 17, 2012, 04:35:31 PM »
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
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline Brambledog

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Re: When is it OK to give up?
« Reply #1163 on: September 17, 2012, 08:55:49 PM »
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  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline Nettan

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Re: When is it OK to give up?
« Reply #1164 on: September 18, 2012, 12:15:21 AM »
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
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline Brambledog

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Re: When is it OK to give up?
« Reply #1165 on: September 18, 2012, 09:19:39 AM »
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  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline beccaja

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Re: When is it OK to give up?
« Reply #1166 on: December 02, 2013, 09:29:26 PM »
Hi all - I posted this in a new thread but might get more feedback from here! When is OK to give up is not the best topic line because I'm not giving up, but somewhat suitable for me...
 I recently had my ACL re-reconstructed in February of '13. My first ACL repair failed - I used a cadaver. I waited about 3 years and then decided to have it repaired again due to instability and pain using autograft, using my patellar tendon from the same knee. I just had an MRI done and was told that it has completely re-torn again. I am not sure why it has failed twice, I refrained from going back to sport since my 2nd surgery...just normal everyday things plus running/gym/hiking.
 I did extensive physiotherapy for 4 months. I did however backpack around Asia for 3 months this summer which was only 5-6 months after my operation...too soon? A pair of heels and a weird twist was what did it the third time (I think). I'm so devastated. The worst part is that if I choose to have a third surgery I need to have a bone graft done first as there is no room left for tunnels (risk of fracture/failure too high).
Does anyone have a similar situation? I'm feeling very stuck with what to do.  I am only 24 years old and I live an active lifestyle... I have given up soccer and hockey but would like someday to be able to play recreationally, I love to ski, run, go on long hikes/treks... Is not having the surgery going to prevent me from being very active? Will I have a greater risk of osteoarthritis / TKR eventually??  Is it worth ~15 months of being laid up and rehabilitation? I have a lot of plans for the following year and post-poning them could be detrimental to my education/career right now...
Having a very difficult time deciding what to do. Any feedback would be great.
-b

Offline Doc79316

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Re: When is it OK to give up?
« Reply #1167 on: May 30, 2015, 04:53:41 PM »
Hi All,

I thought that as I've been off the board for a long time and still having major knee problems, I'd come back and share.

The RSD is as it was previously and fortunately once it spred tot he bottom half of my right calf it never went any further.

Having sid that, the risk of it worsening is always there not leat because it would seem I'm always going to need further surgery.

I never did get my PKR or TKA. I've had a fw arthroscopies, the most reent being yesterday. I don't really know why I had it done this time as there ws nothing to see, no bit of cartilage to clean out etc. The joint is now "functioning" with no cartilage at all.

I would still accept an amputation above my left knee. as far as I am concerned, it would relieve the need for future surgery on that leg in terms of treating my knee.

Anyway, I'll fill in more details another time. I'm not feeling too great since yesterday's surgry but it's no different to usual so I know thre's nothing else going on with my leg atm.

Take care all,

Laura xx
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline Doc79316

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Re: When is it OK to give up?
« Reply #1168 on: August 25, 2015, 03:57:43 PM »
Hi All,

Just a quick update.........

Yesterday I saw my original OS, Mr. Ved Goswami at SSolihull Hospital. He is of the opinion that Ineed at TKA sooner rather than later. He then wwent on to say I should go back to him after iI'm 50!

Because of this (I'm 41 now) I'm arranging a private consultation with a different surgeon. The 2 I have in mind are Mr. Pedro Cavadas (Valencia, Spain) or Mr. Steve Mannion (Blackpool, UK). If anyone has seen either of these surgeons could I have your oopinions please.

I'm only paying for the initial consultation. I can't afford the surgery and follow up so it would then have to be back on the NHS from that point.

Laura xx
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline Doc79316

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Re: When is it OK to give up?
« Reply #1169 on: March 19, 2016, 12:41:46 PM »
Hi Everyone,

WEll, I did eventually decide upon seeing Mr. Mannion in Blackpool. I had a consultation with him on 12th. February of this year. We discussed a knee replacement and also an above the knee amputation.

Nothing is as yet set in stone and it is still very much my decision as to what I want him to do and how to go about getting NHS funding to have him do the surgery as I live in Birmingham and he works in Blackpool!

He dictated a letter to my GP (who I'll be speaking with this week) asking for an NHS referral to the local prosthetics workshops and for the psychological testing I have to have before such a surgery can go ahead.

I know it's a risk and one hell of a challenge both for Mr. Mannion and for me but it's better than attempting to exist with a leg that doesn't work and causes unnecessary pain relentlessly.

Happy days to you all.

Laura xx   :)
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation















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