Any Advice Appreciated

elnafinn

Hi again Elaine, you will be sick of me replying soon, but I do love to delve and google and find out things. I have just fallen on a kneeguru forum archive, think it is posts from peeps in the us and I must say, the postings are not positive. I seem to get the impression that the pain goes but mobility if not good ie that one would walk with a cane.

One person expressed a negative point of view about a patellectomy to a surgeon and he said that some of his happiest patents had had this op. This person then asked two questions, where the patients under 55 and could they walk without a cane. The answer was no on both accounts. This was too scary for the 34 year old concerned to consider.

I am going to have a shower so will shut up for a while. I really do feel for you and sympathise. You do have such a lot to think about and take on board.

Please keep in touch.

Luv
Elna x

speedalong

Hi Elaine, I have not been a regular visitor on the forum for a bit and have read your post and but not the replies - so I'm sorry if am repeating what others have said ...

But you are not too young for replacement that is rubbish!!!

The only reason consultants dont like doing op on young folks is because it can wear out quicker and then needs revision - which is trickier to perform ( and ops are expensive!!) Materials used and techniques are improving all the time and now last longer than ever.

I had my first hip replacement at 30 - that is considered young - but these days even children have replacements if there is no way forward.

Persistance and being a thorn in their side is how to get it done. They do like to exhaust every other avenue first - physio, hydro, controlling pain with meds etc etc BUT if nothing works they will operate - but you have to let them know that nothing is relieving the pain and that your mobility is suffering.

Is your GP any good? He can back you up. Do you work? Occy health can help with this too.

Good luck and keep us posted.

Speedalong

elainebadknee

Hi Elna

Dont be daft about mailing me, apreciate all comments!!! Well you know thats very interesting those two questions that was asked......I think its more and more likely i wont get my kneecap taken out....Even the one mail have had on here from someone who had it done didnt inspire me....I think its a very risky op and wonder why on earth they still do it???

Its sunny here today..... :-)

Elaine

elnafinn wrote:

Hi again Elaine, you will be sick of me replying soon, but I do love to delve and google and find out things. I have just fallen on a kneeguru forum archive, think it is posts from peeps in the us and I must say, the postings are not positive. I seem to get the impression that the pain goes but mobility if not good ie that one would walk with a cane.

One person expressed a negative point of view about a patellectomy to a surgeon and he said that some of his happiest patents had had this op. This person then asked two questions, where the patients under 55 and could they walk without a cane. The answer was no on both accounts. This was too scary for the 34 year old concerned to consider.

I am going to have a shower so will shut up for a while. I really do feel for you and sympathise. You do have such a lot to think about and take on board.

Please keep in touch.

Luv
Elna x

elainebadknee

Hello Speedalong

Well i dont feel im too young either, i think thats just a cop out......I also know that when my dad had his tkr last june a fellow in his ward had a hip replacement and he was late 40's/early 50's but apparently he had to push his point.......I also know that im gonna have to be the thorn in their side/pain in their ***!!!I had an op when i was in my early 30's and before i had it my surgeon as me was a 100% sure i wanted it, i replied no i was 150%!!!

I dont work at present and am appealing against and ESA claim (thats another saga in itself)......I worked last for lakeland as a data entry assistant which is only seasonal work sept -jan each year.......Im good at it and want to apply again in august....What can occ health do then???

Maybe i gotta sob like hell in the consulting room that cant go on like this??? Anything???

Elaine

speedalong wrote:

Hi Elaine, I have not been a regular visitor on the forum for a bit and have read your post and but not the replies - so I'm sorry if am repeating what others have said ...

But you are not too young for replacement that is rubbish!!!

The only reason consultants dont like doing op on young folks is because it can wear out quicker and then needs revision - which is trickier to perform ( and ops are expensive!!) Materials used and techniques are improving all the time and now last longer than ever.

I had my first hip replacement at 30 - that is considered young - but these days even children have replacements if there is no way forward.

Persistance and being a thorn in their side is how to get it done. They do like to exhaust every other avenue first - physio, hydro, controlling pain with meds etc etc BUT if nothing works they will operate - but you have to let them know that nothing is relieving the pain and that your mobility is suffering.

Is your GP any good? He can back you up. Do you work? Occy health can help with this too.

Good luck and keep us posted.

Speedalong

speedalong

Maybe i gotta sob like hell in the consulting room that cant go on like this??? Anything???

Hi Elaine - try it!!

Speedalong

tweedie

speedalong wrote:

Maybe i gotta sob like hell in the consulting room that cant go on like this??? Anything???

Hi Elaine - try it!!

Speedalong

Hi Elaine,
Tweedie again, one thing i did not say is that the first op to remove my kneecap was when I was 41 , yes I know some people have TKR younger but still there is a limit to how many succesful TKR can be done on each knee , due to my particular arthritic problems I was told that I was looking at being permanatly in a wheel chair from my mid 60's if I demanded TKR , you may find that one kneecap removal will give you the pain release you are after , the pain is greatly reduced by this op and quite a few folk manage with only having the one knee done , may I suggest you say to your surgeon that you want him to explain WHY this op is better for you in his judgement , why not TKR ? , explain that you feel short changed by his descision, try to remain calm and listen , the problem will be unfortunatly your age , I think he will be trying to look after your very long term mobility and pain management , I doubt very much that the descision is money based or he isn't listening to you but between you he is not explaining everything in a way that you can see or understand his view, like you in my 40's 60 in a wheelchair didn't seem that bad , but boy does time pass quickley and now I do not regret having the ops , arthritis is not as yet curable , its a nasty sneecky disease that attacks your body in so many ways , if a new joint was a certain fix for all arthritic problems then we would not need to poison our bodies with the drugs that we have to take, so get the surgeon to explain to you , if after that you still think the TKR is the only way then fair enough demand a second opinion ,
Please don't think I am not on your side BUT I did listen and think very carefully when I was in your position AND made the surgeon explain things simply , your bones may be stronger than mine were at that point , is it one knee or both for you ? I knew it would be both , I cried , I ranted , it wasn't the surgeons fault, he only tried to help me and now 15 yrs later I do not regret my decsion , if it is only one knee at the moment then it could be the answer you are looking for, you may not need a stick and you may be able to return to your work --- ask him what he thinks and he expects to be the results from this op, ask him to explain, this is your body not his and remember this -- TKR are not perfect , they help loads and loads of people yes but not everyone , you are angry and, frightened but its not the surgeon who is causing this problem its the arthritis , I wish I could help you , but you are grieving for what arthritis has taken from you and left you only the pain and frustration , you need your surgeons information to make this descision -- if you demand a TKR and it dosen't work out for you what then ? he may well turn around and say I didn't recommend this for you .
I fully understand your exasperartion , I wish I could make it all go away , but as a young friend of mine says --- life is a bitch and then we die !!!
Don't forget YOU NEED information so make him explain !!!!!!!!!!!!!
Love
Joanna
xxxxxxxx

elainebadknee

Hi Joanna

Thanks very much for your mail. Im afraid having a bad day today, it was red hot I couldnt get parked in m & s diasbled spaces so had to park on main street in town, i was knackered, hot and basically didnt have the energy for nothing but needed to get stuff........This plus i keep thinking about my conversation with the so called top dog surgeon - ive come to the conclusion he didnt treat me as well as he could have and im unhappy about that.......My ocd is just in left knee but feel my other knee plus hip is gonna pay for the strain theyre taking from my bad leg.......I want to discard the walking stick and get back to my lfe a year ago when i could walk for an hour by the lake on a sunny day, where i could walk to the supermarket if i wanted to, when i could dance and change gear in the car without worrying about if i was not going to be able to do so......I dont think he gets that my surgeon, he sees me as a person who carries weight, always have done since was a teenager but isnt every human being a weight bearing person? my gp says so and if i cant exercise as much as i can stands o reason am gonna weigh more....I also got told when 1st diagnosed not to work in an environment where had to stand all day - which i ignored until age of 35...........But no all he sees is me with weight, rules me out and uses the age card as a total cop out....I know he hasnt tried his hardest and im annoyed, my life's on hold, for 1st time in life been sick for most of year and trying to claim ESA which in itself is a total farce!!!!!
I dont feel like im winning.....

Elaine

tweedie wrote:

speedalong wrote:

Maybe i gotta sob like hell in the consulting room that cant go on like this??? Anything???

Hi Elaine - try it!!

Speedalong

Hi Elaine,
Tweedie again, one thing i did not say is that the first op to remove my kneecap was when I was 41 , yes I know some people have TKR younger but still there is a limit to how many succesful TKR can be done on each knee , due to my particular arthritic problems I was told that I was looking at being permanatly in a wheel chair from my mid 60's if I demanded TKR , you may find that one kneecap removal will give you the pain release you are after , the pain is greatly reduced by this op and quite a few folk manage with only having the one knee done , may I suggest you say to your surgeon that you want him to explain WHY this op is better for you in his judgement , why not TKR ? , explain that you feel short changed by his descision, try to remain calm and listen , the problem will be unfortunatly your age , I think he will be trying to look after your very long term mobility and pain management , I doubt very much that the descision is money based or he isn't listening to you but between you he is not explaining everything in a way that you can see or understand his view, like you in my 40's 60 in a wheelchair didn't seem that bad , but boy does time pass quickley and now I do not regret having the ops , arthritis is not as yet curable , its a nasty sneecky disease that attacks your body in so many ways , if a new joint was a certain fix for all arthritic problems then we would not need to poison our bodies with the drugs that we have to take, so get the surgeon to explain to you , if after that you still think the TKR is the only way then fair enough demand a second opinion ,
Please don't think I am not on your side BUT I did listen and think very carefully when I was in your position AND made the surgeon explain things simply , your bones may be stronger than mine were at that point , is it one knee or both for you ? I knew it would be both , I cried , I ranted , it wasn't the surgeons fault, he only tried to help me and now 15 yrs later I do not regret my decsion , if it is only one knee at the moment then it could be the answer you are looking for, you may not need a stick and you may be able to return to your work --- ask him what he thinks and he expects to be the results from this op, ask him to explain, this is your body not his and remember this -- TKR are not perfect , they help loads and loads of people yes but not everyone , you are angry and, frightened but its not the surgeon who is causing this problem its the arthritis , I wish I could help you , but you are grieving for what arthritis has taken from you and left you only the pain and frustration , you need your surgeons information to make this descision -- if you demand a TKR and it dosen't work out for you what then ? he may well turn around and say I didn't recommend this for you .
I fully understand your exasperartion , I wish I could make it all go away , but as a young friend of mine says --- life is a bitch and then we die !!!
Don't forget YOU NEED information so make him explain !!!!!!!!!!!!!
Love
Joanna
xxxxxxxx