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Revision TKR Loosening, RA ?Second Revision

Well I have been to see OS!!!

He said he still can't find anything wrong with my knee (even though it won't bend, is very painful in various places when walking/sleeping/doing anything and very painful in on palpating in other areas) despite there being bits on bone scan (I only saw the pictures but will be asking for a copy of the report) so..

He said he could do an MUA and inject the medial collateral ligament to see if it helps

OR possibly replace the patella (not done with original TKR)

but both of them he thinks probably won't work or at best a 40%chance of making any difference - not 40% chance of sorting it but of making a difference.

Ahhhhhhhhhhhhhhhhhhhhhhhhhhhh!

He did himself suggest a second opinion 'because I can't find anything wrong with it' which I have very happily accepted to the OS I want to see - except it will take a while for him to write to my GP and then the GP to make referral as he says he can't make the second opinion himself ??? then I am not sure if I have to do the whole 18 week NHS wait again (however I will be on the phone so much to get appt ASAP!) but the alternative for someone who doesn't think anything is wrong with it doing more surgery is a worse prospect than another long wait.

So I will keep on with my sedentary life, keep taking all the analgesia when I want to do anything but also have to hope that someone can sort me out!


A bit confused about how I feel at the moment.

Shortie x
 
I would be mad!! Imagine the nerve of telling you nothing is wrong when you are sitting there with a knee that does not function!!! I hope you have better luck with the second opinion--that first one was worthless.
 
Shortie,
Sorry you are not any closer to a real answer :sad:.
I agree proceeding to get a second opinion from a revisionist is the right thing.
I had 3 opinions before my flexion instability was identified as the problem. Keep looking until you get the right answer.
Wishing you all the best,
 
skigirl said:
I hope you have better luck with the second opinion--that first one was worthless.
Click to expand...

I agree all my appointments since October have been worthless! I do feel in limbo at the moment I am just looking forward to seeing someone else and hope for some answers of some sort.

I am sort of angry at the moment I'm just a bit too tired of it all to be really cross (not sure that makes sense!) and don't know how long the wait will be or how I will cope in the meantime but I'm sure I will put my happy head on and get on with what I can.

Shortie x
 
Shortie, I understand the depression that accompanies disappointment. You don't need to put on a happy face for us here---we understand the frustration you are facing. Of course you are angry---that man just denied your pain to your face---nothing is wrong with you!!!

I think I would beg, cry, plead with the nurse at the next appt for an early one---but, I am going to tag @Josephine to see if she has advice at how to negotiate the NHS.
 
Darn...double darn:gaah:well one thing... a least your OS recognizes you definitely need a second opinion...and that's a positive. I 'm hoping Josephine will be able to offer some advice about how to proceed within the system so it moves a bit faster for you.

Many hugs:friends::flwrysmile:
Gami
 
So off to GP today to see what the lowdown is on how long I am going to have to wait to see new OS!

Fingers crossed I'm not back on the NHS 18 week wait (or longer!)

Shortie x
 
DO NOT stop until you get answers. I am so sorry you are going through this.....I can't imagine! I am only 7 weeks out and I can't imagine a year of this....I see we are almost the same age....we have LOTS of living to do! Please update us!
 
So here is the next instalment of my nightmare journey.

As I said before my OS recommended a second opinion but he said he couldn't refer me directly so go to the GP. Went to the GP today, GP has two letters on file one to him the GP saying please refer me onto new OS and another from OS to new OS referring me!!!!!!! So GP says if I've altready been refereed then he can as it will go back onto the MSK pathway with physios deciding best course of action (really??) so we should just wait a could of weeks to see if an appointment comes through!!!!!

So I have come home and phoned new OS's secretary to see if I am really refereed or not - unfortunately it was an answer phone so I have overcome my dread of answer phones and left a message. I WILL be trying again on Monday if I haven't heard anything by Monday lunchtime.

My GP has also prescribed me some amitriptyline to try to see if I can get a decent nights sleep from my knee so I will try it but not tonight as I have to take my daughter out first thing in the morning. And don't want to risk feeling too sleepy for that. But will try it Saturday night.

Shortie x
 
Sounds like the OS and your primary have done what they can with referrals, keep calling. They will get you in for your second opinion just to get you to quit calling.:heehee:
A good physio may be able to help with the pain, the key word here is a good physio.

Shortie said:
My GP has also prescribed me some amitriptyline to try to see if I can get a decent nights sleep from my knee so I will try it but not tonight as I have to take my daughter out first thing in the morning. And don't want to risk feeling too sleepy for that. But will try it Saturday night.
Click to expand...
I agree, if you have to drive, you put up with the pain.:gaah:
 
Shortie said:
He did himself suggest a second opinion 'because I can't find anything wrong with it' which I have very happily accepted to the OS I want to see - except it will take a while for him to write to my GP and then the GP to make referral as he says he can't make the second opinion himself ??? then I am not sure if I have to do the whole 18 week NHS wait again (however I will be on the phone so much to get appt ASAP!) but the alternative for someone who doesn't think anything is wrong with it doing more surgery is a worse prospect than another long wait.
Click to expand...
I quite agree with you not letting him touch you again! The very idea! :skep:

Honey, obviously I don't know how you are financially but this is an option - you could request a private consultation from this other surgeon, possible cost around £150-200, and then ring his private secretary (number can be obtained from his NHS secretary) and get an appointment within a matter of weeks!

BTW, what surgeon operated on you and to whom has he 'referred' you? I can check them out for you if you wish. The name of the hospital would help as well.
 
Shortie said:
He did himself suggest a second opinion 'because I can't find anything wrong with it'
Click to expand...

My OS decently said the same thing. With the insurance we have, and in the US, I could've gone to many second opinons and set them all up myself. Which can be wasteful, but it's painful to hear your story . . . and your thread title seems to fit your situation perfectly.

You don't know how to feel because I bet it changes day to day. It's a roller coaster, sorting out a medical issue that doesn't sort itself out in a timely way. It's torture, and sometimes more torturous for our loved ones.

I do hope you feel free to name the doctors involved (your surgeon and the one you will see). Josephine is pretty familiar with all of them, and sometimes these details are useful when we are trying to help forum members find good doctors (or steer clear of others).

I like the private pay option Josephine mentioned. Seems well worth it.

Amitryptilline works well. Take it an hour or even two before bedtime. You will probably feel sleepy in the morning.
 
Thanks everyone.

My surgeon situation is slightly strange as my original surgeon Mr Tim Vaughn-Lane retired approximately 3 months after my TKR in fact apart from the day after surgery I haven't seen him again as it was 'one of his team' who saw me at my 6 week check. As Mr Vaughn-Lane retired the hospital (Hinchingbrooke Hospital) reassigned me a surgeon Mr. Rakesh Choudhary - I had no input or choice in this. It is this consultant Mr. Choudhary (or someone in his 'team') who has seen me since I asked for an SOS appointment at 6 months post op. It is this team who can't identify why I am having so many problems.

My referral is to (who I have been trying to get referred to for months) is Mr.Denis Edwards at Addenbrookes hospital. He also works in private practice and someone did mention paying to see him but I am worried that if I see him privately for a consultation (which I could just afford once) I would then have to have any treatment privately which I cannot afford (I don't have any health insurance as I work for the NHS!) I am not sure how this works but don't want to jeopardise any NHS treatment.

Shortie x
 
No you won't. Just let him and his secretary know you want to continue NHS treatment but need an opinion first. I've done this heaps of times. The consultants never have a problem with it as they all work in the NHS as well as doing private practice. Just be up front with him from the start and you won't have a problem. They deal with this all the time.
 
Thank you @Josephine I will look into this on Monday - I really think that if I have a plan it won't seem so bad than being in limbo.

Thanks

Shortie x
 
Well a bit of better news!

On Monday I phoned the new hospital to see if they had my referral yet - they didn't and on discussion I was back on the NHS 18 week pathway to say I was despondant was a bit of an understatement and several times I went to write what I was feeling/what was happening but I didn't think I could write anything constructive so didn't. Combined with the fact that the first two nights I took the amitriptyline it seemed to help a little with sleep but since then I don't really know as not had good nights sleep and knee is really painful all the time.

So today I have phoned the hospital again and they received my referral yesterday and the chap said did I want to book my appointment now, I said yes and he says ummm the first available appointment is...... Now I was expecting him to say August but I'm so pleased because it is on 1st May. It is such a relief to know I don't have to wait months and I know I don't have any plans yet but just going to see the new OS gives me hope that a plan may actually be in place soon - fingers crossed.

Shortie x
 
Hi @Shortie I hope that you don't mind but Ive been reading through your lists with great interest and taking on board the advice you have been given. My GP referred me back two weeks ago to see my OS because I'm still having problems and pain after all this time. I am paying out for a private physio which I can Ill afford but need to do something. I am still waiting for the appointment.

I desperately want to drive and go back to work. I've had enough being stuck and relying on others for lifts etc. Don't get me wrong, I'm extremely grateful but I want my life back. I'm still in pain tonight despite having taken 40 mg Morphine and 1000 mg paracetamol. It's ridiculous. I could take more Morphine but that means I get awful nightmares and like a sleep paralysis, which I've been told is a panic attack in your sleep. Its terrifying.

After reading this list I am most certainly going to contact them tomorrow and see what is going on.

Thank you everyone who has contributed their ideas and information on this list. I know which way to go now. Wonderful.

Thank you once again Nana moon 27 x
 
You are more than welcome @Nana moon 27 if anything I have written is of any help to anyone I am very glad as I have had so much help from what others have written even if it is positive or negative experiences and yes I have been given soooooooo much fantastic advice over the last year or so of which I am beyond grateful and don't know what state (my knee and mentally) I would be in without BoneSmart. Although I have times when I appear quiet on BS I am still here just reading but not in a place where I can put anything down that is constructive for myself or anyone else.

I do know exactly what you mean by being extremely grateful but want your life back - we had a day out today and I so wanted to join in with my kids on the big play stuff but wasn't able to, I also yearn for a day out cycling as we have in the past but still can't (yet).

I have been very patient through my journey but the only way to go with our lovely NHS it seems is to keep on phoning secretary's and appointments clerks until someone listens - as my title says this road is so bloomin long but with BS although I can't see the end of my road yet I know there will be an end to the road, so keep going and keep with this fantastic BS family through thick and thin they are always here.

Shortie x
 
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