help please!!

[tanyap]

Hi Faye,
wow you are doing a LOT!!!!
I didnt realise you were getting out and about so much - thats great!!
I hate the horrible towel rolled up exercise too.

My bloody sinus infection that I had two weeks ago is back, Ive to go to my GP at lunchtime today - urrrrggghhh!!!!

[friendsfan]

I thought i would post a pic of a cross stitch I finished yesterday.

Sorry about your sinus infection, i hate sinus problems....that is a easy going day somedays I can walk up to as much as 3 miles 

[friendsfan]

ive had physio today made no improvement, got even more exercises though YIPPEE...

she is really hung up on this weight bearing problem, its been really bad today..pain anytime my foot touches the floor. a shooting pain right up my leg

[tanyap]

Hi faye,
Ive been grumpy and not posting much this week with my sinus infection. Just feel worn out!
loved your cross stitch pic!!!

Where exactly is the shooting pain when you weight bear and on a scale of 1 to 10 how bad is it?

[friendsfan]

I hope u are feeling a bit better today tanya...

the shooting pain is all the way up my shin boone to my knee, I do know that this is coz of the op, but its just different pains all the time, its probably a 4on the pain scale...enough to make me pull faces.

how is your knee?

[helsbels]

hi all, so sorry i have not been on line for so long i have been really down and fed up n just wasnt in right frame of mind to do anything never mind go on computer or speak to ppl. so sorry if that sounds awful i dont mean to be . i cant explain or understand why i felt way did. it was horrible

im so glad you are all doing well after you ops

heres a little up date of my stupid f*ckin knee:

after i first saw my new os in oswestry when he said he was going to go into knee, i had another appointment with his anestetic/pain specialist. so i saw him in aug (i fink) just b4 i stopped coming onto site.

he checked knee out, did some funny test on knee like rubbing brush over both knees to see if i could feel it which i couldnt on bad knee, put a spiky fing across knees to c if i could feel that which i couldnt on bad knee and then he banged both knees whith 1 of those hammer fings. my good knee swung out like it should do but my bad knee didnt move at all (does that make sense etc on wot i saying on wot he used etc?)

so after all that and talking to me etc (he didint mention anything about the test he did on knee with those 3 fings just said mmm ok!!!) he said he thinks it is due to nerve damage so he put me on nerve blockers and said i will not be having surgery. i have to c him again in january for him  to reasses everythin  n c wot tabs have done. he told me i should b able to walk on it. i told him I CANT but he didnt seem to wanna know.

after that appoinment i became realy down n fed up. it felt horrrible because i had finally got some news with the 3rd os saying he finks he knows wots wrong so he will open it up check it all and remove a lump that is on front of knee which could be causing problem and shave knee cap etc and i will have op within next 6 months (this was in april) to then be told no i have to take more tablets and no op and im making it all up. although they never told me in so many ways im making it up it feels like they have.

they did say there is a 50% chance an op would make fings worse but how much worse could it get!!!

after that appointment i felt id been kicked in chest coz of way i felt. i get a bit of good news followed by big bad news or at least thats way felt. i know an op is last fing to do but i feel all i ever do is fill myself up wiv loads of medication for it not to do anything.

ive been on these nerve blockers for nearly 2 1/2 months and it aint doing feck all. i still cant walk at all still on 2 crutches unable to put weight on leg, cant sleep cant do anyfing for self. there just seems it going to be never ending and never get fixed and just fill me up wiv drugs.

so again im so sorry for not speaking to all but im back  if u still wanna speak to me that is

helsxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[allie]

Hi
I will certainly speak to you- maybe in a similar position at the moment. Just more medication and waiting for them to do something else!! (maybe surgery referral in 6 weeks) I hate being told I should be able to walk on my knee- of course I know I should but I cant!!!

Hope you are feeling a bit better soon, the kicked in the chest feeling soon goes and you can get back to being positive again

Allie

[friendsfan]

Welcome back Helen... Im really so sorry that you have had such a rubbish time,  I really wish I could help you...but after being told it was all in my head, I had a TTT in June and found my knee is full of arthritis... never give up, I know I felt like it but the sense of relief that came over me when the surgeon admitted the problem was great..   

At the moment Im being told by my PTS that I should be weight bearing but I just cant, I know it'll come though.. but the surgery has done nothing for me anyway the only thing is now it does resemble a knee in a fashion.

Anyway Helen we are here for you, and you can text anythime you wanna

[tanyap]

Hi Hels and Faye,
Faye - Im sorry I havent been online much lately, actually woke up this morning thinking 'I have to check in with Faye!!!' so here I am and I want to know how your knee is going for you, and what the physio is saying etc... Is it less painful, are you able to do anything more with it yet? Its does take ages after a TTT, and as well it takes ages when you werent able to use it so long, so double ages - but you will get there!!!! Thank god it resembles a knee again anyway eh

Hels - I had a feeling you were just sick of your knee and not wanting to talk to people. Im glad you came back though cos I have been wondering how youve been.
Thats terrible all that you have had to go through. I wish I could come over and give you a hug and beat the head off your doctors with your crutches. Its not fair that they are not dealing with you faster and just leaving you to continue to suffer.
Can you phone the fella who prescribed the medications and tell him that they are not doing anything? I know with the NHS its very hard to get hold of your doctors but you could even write to him and say that there is no change at all. It just seems barbaric to leave you there til Jan and nothing is changing for you.
Faye is right, you have to hang in there, they will eventually figure out whats up and sort it, its just that it seems like they like to leave people festering for ages before they do that! Remember I was 3 years waiting to get fixed and Id only such a small thing wrong, but it stopped me using my whole leg - and Faye had to wait for bloody years as well, but now she is on the road to recovery. So they will get you on the right road - its just a waiting game with them, doing the stuff they ask with no changes til they accept they need to do something else.

Hels have you talked to your GP about depression? It sounds like thats what youve been goin through recently - no surprise, you wouldnt be human if you werent depressed about the situation. But you should talk to your doc about it cos they can help it and make you feel a bit better in yourself at least.

like Faye says - we are here for you and you can text me anytime as well.
Its nice to see you back, sorry you dont have better news this time round, but you will at some point, I totally believe that.
xx

[friendsfan]

tanya its fine  I havent been on much lately either, coz Ive been sick again, it all started with a cold, thought I might end up in hospital again as I was being sick every 15 mins, for hours, but it passed and i feel a little better now...

My knee is still really struggling, I cant touch it and weight bearing is still a issue, and Ive had one of my physios telling me on facebook to do my exercises, which is touch the knee and try to weight bear, sometimes im able to weight bear and other times im not, dont know why this is ... I knew rehab would be hard but not like this, but I know I'll get there in the end, i have to.. 
It isnt as painful now, its just when i knock it or been doing too much
I have 2 physios, mandy and jenny and they are going to gang up on me on tuesday, god knows what they are going to do, probably attack me with my crutches.
it doesnt resemble a good knee, but it looks better...

how is your knee tanya?? hope it is well

[helsbels]

hi guys

faye - im so sorry u r still having problems after everything, it feels like theres no end from it all doesnt it
how is everything regarding your sickness? last time i spoke to you you were in hospital and they found something wrong with your back or sumthing wasnt it, any more news etc on what was causing you to be so bad?

tanya - i am so happy that you are getting better - who'd have fort this time last year that you wud be walking miles without subluxing! that brill! (had a quick luk at your other post)

my pain/anaestetic guy who perscribed me the nerve blockers phones me every 2 weeks to see how the tablets are doing. i started on 100mg and every 2 weeks he phones and i tell him there doing feck all and he ups it another 100mg. i am on 400mg 3 times day at mo and he said he wants to get me up to 600mg. i dont know whether its because i was so anoyed that i was being put on more medication that my brain is not allowing them to work if that makes sense or if they just are not working.
i agree with him that there probably is nerve damage in my knee due to the coldness of the knee and numbness of it to but there is defernatly something wrong mechanincally inside because of the bruising i get when it locks and the not able to weight bare and the crunching etc but it seems that i know that and everyone else but the medical profesion doesnt. but then again the 3rd os i saw also agree'd thats was why he was operating on it but it seems its because of this pain/anaestitec guy. if only the os didnt want his opinion as well i could have been on the road to recovery by now. i know having an op may not work and at worst make it worse than it is but i dont see how it could get worse!!!! i feel that an op is my only other chioce to try although i dont want an op if that makes sense but wot else is there to try!!

i havnt been docs bout depression, i know i probably am but i dont wanna take more tablets for something that when they sort my knee out i wont be depressed. thats prob me bein silly but i dont know wot else to do. maybe i dont want the docs to know im depressed because of it incase it changes way they see my knee. does that make sense?

does anybody feel they are wishing there life away till the next appoinment etc!!! how awful is that. we should be wishing life to slow down not speed up.

evil knee's!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


helsxxxxxxxxxxxxx

[tanyap]

Hi faye and hels,
Faye, I was thinking back to my own TTT this morning, it took me a LONG time to be able to weight bear as well, it was just too sore. Id say it took me 6 months, I remember I was on crutches for nearly 7 months, I had a term off school (september to xmas), then I went back to school on crutches, stayed on them til easter (bout march/april) then I think I still brought 1 crutch to school the rest of that year, but honestly I didnt need it as long as I brought it, I just kept bringing it cos it was a visible sign something was wrong and it stopped people bumping into me etc - school was a bit of a nightmare after TTT cos youd be getting bumped and pushed by kids in crowds all the time. It just takes a long time.
My knee is coming along grand, for the first month after the op it was still totally bandy, then the next 2 months it really flew along and changed loads, the past month its just been slowly getting more better. I did an hours hike in the mountains yesterday and it was fine. Even a month ago that hike would have been sore at the end.

Hels, I hear where youre coming from bout depression, I was exactly the same as you, knew i was depressed, but also knew if they fixed my knee id be ok!!! You have to see it like a journey, they will try stuff til they find what works. Its not an easy journey to be on though and if you do feel you need a bit of help to keep your spirits up go for it, the doctors would understand that its normal to get depressed with all that is going on. You wouldnt be human if it wasnt getting you down.

So this fella is saying now that its just nerve block medicine til things get less painful? Is he saying anything about there being a mechanical problem? At least he is ringing you every 2 weeks. If he gets up to his maximum dose and you have no change he will have to accept that and come up with a new plan. Is there no difference whatsoever?
I think you must have a mechanical problem, you wouldnt be locking and crunching if you didnt - and the bruises as well.
I was always wishing my life away til my next appointment as well, but eventually you have an appointment where they DO something practical instead of just pushing you off til next time.
The only thing you can do is keep making as much noise as possible at each appointment, tell them whatever they are trying is not working, ask them what else should be tried etc...
But dont give up cos there is an answer out there somewhere.
Next time the pain fella rings maybe ask him why he thinks there isnt a mechanical problem? Or has he already said?

Big Hugs Hels!!!
xx

[helsbels]

hi guys

how r  u all this morning?

i havent been a sleep at all to much pain etc but so tired. i just gave up in bed and came down stairs n watched tv but still awake!!!!!

the pain guy thinks it will get better with the nerve blockers as he thinks that is the main problem. he did say that maybe there is a mechanical problem but that is not wot he does! but he only said that when i reminded him about the locking and bruising and crunching and grinding. it sounded like he ignorde me at the begining as i told him all that but when he said bout he thinks its nerves i told him again and then thats when he said that. he then said to be on nerve blockers till my next app in jan and it can take up to 4 months to take effect properly.this is my 3rd month so still got a month to go anyway. that tablets are making no difference wot so ever its just as if i am taking a sweet!!! i wish lol! i suppose if come jan n nothing has changed he will then say it is mechanical unless he puts me on summut else i realy dont know as he wouldnt say when i asked him wot happens if they dont work!

i am so happy for you that you did a hours hike in the mountains and all was fine! thats brilliant. how is it today are you suffering a bit or is it just same as any other day after no hiking.

i am just so happy for you that you have finally got your knee back to maybe not completly normal yet but good enough for you to be able to do  things like hiking. i bet a few years back you wouldnt have even thought you'd ever be able to do something like that. you are prove that there is light at the end of the tunel just might be a very long tunnel


helsxxxxxxxx

[tanyap]

Hiya Hels,
It is just a very long tunnel, I was wandering around in the dark in it for years!!!
My knee is grand today - like no hike. It never really bothers me much now after doing stuff, except maybe after a lot of standing - it still gets tired easy standing around (like in queues). I do still get some aches and pains - but nothing like before and the big thing is that it doesnt keep feeling unstable all the time. I dont know if Id ever be able to run on it after all this time, but maybe some day I could do a little dash?

Did the doctor say that it is normal to feel absolutely no difference at all for 4 months though? Im trying to think of the best way forward for you, if this guy is saying 4 months to take effect and youre 3 months in, I suppose you can only keep taking them for the next month and then if no change tell him he better think of something else? And keep on and on reminding him about the locking, crunching, grinding. Also ask him why the OS would say there was something necrotic in there and he is saying its all just nerves?

Are you on anything for the pain besides the nerve blockers?
How is everyday life for you - still the same or do you think you have gotten worse or any better at all?

Can you do anything with your leg or is it just a big painful useless thing at the moment?
How often is it locking/crunching/grinding?

Is there anything else at all that could be looked into to help you out? It must be incredibly stressful for you. How are things with your BF? Is he standing by you and helping you like he was before? It must be hard for him as well.

I wish I could win the lotto and send you to the best doctors.
x

[friendsfan]

Helen, my sickness eases off alot its not very often im sick now..i have a cyst on spinal cord thats the problem they found with my back.....
i used to be on gabapentin then they changed me to pre gabalin, its when I tried coming off these that the sickness first started, can you remember?? but they did nothing for me either. I know when i was started on these they told me it could take up to 6 months before i felt any difference, I never stuck with them.

Tanya thats great about going hiking. who'd have thought it??  I have physio today, not looking forward to it..then next tuesday i have my cousins funeral, he was killed last thursday after being hit by a car when he was biking home from work..
are you still doing your exercises? or is just using it enough?