Revision TKR Would like advice please, I think knee has moved
- Thread starter busylizzie
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United States
OP
OP
busylizzie
post-grad
Well I eventually got in touch with my consultant's secretary at lunch time yesterday after trying all morning. She is getting in touch with the scheduler again and is going to get her to ring me. I asked whether it would be today (yesterday) but she didn't know. Still waiting ....... I'll give her until this afternoon and then start chasing again. It seems never ending. I can't e-mail the consultant as I don't have his e-mail address.
OP
OP
busylizzie
post-grad
I chased the appointment again, persistence has paid off this time. I've got a date of Thursday 10 th October. I don't hold much out for the first stage of the revision being 4 to 6 weeks after that, I reckon it will probably be 2 months or so. I will have to wait and see. Hopefully I can have some antibiotics after the aspiration to keep me going. My glands are swollen at the moment and I don't feel well. I am a little happier now I have the first date.
Let the countdown begin.... the start of hopefully a brighter painfree future with regards to my knee.
Let the countdown begin.... the start of hopefully a brighter painfree future with regards to my knee.
OP
OP
busylizzie
post-grad
I'm sitting at home with tears streaming down my face after coming back from the aspiration. I waited at the hospital for 4.5 hours for the theatre slot today. The aspiration went well, the sample looked the same as last time. It takes about 2 weeks for the results to come back. Mr Kay's Fellow did the aspiration. Mr Kay wasn't there which I was OK with.
The Fellow told be I would have an appointment in 3 weeks to discuss the results. On discharge, I got the appointment for 20 November - 6 weeks away. I questioned it and was told it was the first appointment available. I have really struggled to keep going until today, the pain, inflammation and not feeling well has been awful. Now I have to wait ANOTHER 6 weeks. The aspiration wait was 4 weeks not the 2 to3 weeks as i was told it would be and it was only then because I chased it. Mr Kay mentioned doing the first stage of the revision 4 to 6 weeks after the aspiration -this is not going to happen.
This guy today mentioned possibly taking some tissue samples I think by arthroscopy, if the aspiration does not show anything, before doing the first stage . Doesn't look as though anything is going to happen before 2014. I keep hanging on and hanging on but don't know how much more I can take. I am really low now. The two years are up from the original TKR on the 4 November and I'm now no further forward. I have had daily pain for the last 3.5 years and haven't walked without crutches in that time. Yet to find any painkillers that I can tolerate that work. I've tried everything.
I'm allowed antibiotics at last now and have an appointment tomorrow with my GP. The antibiotics reduce the pain and inflammation let's hope I can have some tomorrow. I also have to have the dreaded flu jab as I'm in a high risk group.
Sorry for the rant.
The Fellow told be I would have an appointment in 3 weeks to discuss the results. On discharge, I got the appointment for 20 November - 6 weeks away. I questioned it and was told it was the first appointment available. I have really struggled to keep going until today, the pain, inflammation and not feeling well has been awful. Now I have to wait ANOTHER 6 weeks. The aspiration wait was 4 weeks not the 2 to3 weeks as i was told it would be and it was only then because I chased it. Mr Kay mentioned doing the first stage of the revision 4 to 6 weeks after the aspiration -this is not going to happen.
This guy today mentioned possibly taking some tissue samples I think by arthroscopy, if the aspiration does not show anything, before doing the first stage . Doesn't look as though anything is going to happen before 2014. I keep hanging on and hanging on but don't know how much more I can take. I am really low now. The two years are up from the original TKR on the 4 November and I'm now no further forward. I have had daily pain for the last 3.5 years and haven't walked without crutches in that time. Yet to find any painkillers that I can tolerate that work. I've tried everything.
I'm allowed antibiotics at last now and have an appointment tomorrow with my GP. The antibiotics reduce the pain and inflammation let's hope I can have some tomorrow. I also have to have the dreaded flu jab as I'm in a high risk group.
Sorry for the rant.
OP
OP
busylizzie
post-grad
The tears continued overnight and I had a melt down. I went to the GP Friday afternoon and was still struggling. I burst into tears in her room and said I can't continue like this. She listened and is going to try and get the appointment moved up. She is going to ask for the results of the aspiration as soon as they are available and if appropriate start me on antibiotics then. She even said that she will write the letter at home this weekend if she ran out of time on Friday. We went through all the pain medications again and decided to try the Fentanyl patches again. It is quite a few years since I last tried them.
This time they are working I feel much better today, the pain has gone from a 7 - 8 down to about a 5. I can cope with that. They haven't made me itchy yet but have affected my colon. I'll have to wait and see. I am feeling really tired. I went back to bed yesterday afternoon and it was the first time in years I felt relaxed warm and cosy and not uncomfortable. Husband has noticed the improvement. I am beginning to take interest in things again. I have to be careful not to overdo it and still rest as the pain level goes back up again.
I have a red, hot, swollen painful arm from the flu jab as usual, but thought it was best to have it. I always react to it.
This time they are working I feel much better today, the pain has gone from a 7 - 8 down to about a 5. I can cope with that. They haven't made me itchy yet but have affected my colon. I'll have to wait and see. I am feeling really tired. I went back to bed yesterday afternoon and it was the first time in years I felt relaxed warm and cosy and not uncomfortable. Husband has noticed the improvement. I am beginning to take interest in things again. I have to be careful not to overdo it and still rest as the pain level goes back up again.
I have a red, hot, swollen painful arm from the flu jab as usual, but thought it was best to have it. I always react to it.
Josephine
NURSE DIRECTOR EMERITA
With whom did you challenge the appointment? If it was a clerk in appointments, that's no good. They have no authority to do anything. I suggest you phone Peter Kay's secretary and have a word with her. She has direct access to Peter Kay and together, if anything can be done, they can do it. Appointments people can't. I'm sure Peter Kay will be proactive on it when he learns you're being given the run around.
OP
OP
busylizzie
post-grad
Thanks maryo52 and Josephine
I got in touch twice with Peter Kay's secretary whilst trying to get a date for the aspiration. She said that she couldn't book an appointment for me. Twice she got in touch with the admissions' lady asking her to get in touch with me. It did not happen. The secretary told me that they book theatre 6 weeks ahead for surgery but aspirations were fitted in quickly. I was repeatedly ringing admissisions myself until somebody answered the phone and it wasn't on answerphone. I got a date then.
This time at the end of the aspiration, Peter Kay's Fellow said that they should get the results in 2 weeks but he would leave it to 3 weeks before I came back to clinic to be on the safe side that the report would be back. Half an hour later when the paper work was done for me to be discharged, the nurse gave me the paper which said the 20 November. I questioned it straight away that it was 6 weeks not 3. She said that they were fully booked until then and that the Fellow had OK'd that date. I said I would go and see my GP and try and get it moved forward. She said that would only move somebody else down the queue and wasn't at all helpful. I explained that when I met Peter Kay in clinic he said 2 to 3 weeks for the aspiration and 4 to 6 weeks from then until the 1st stage of the revision.
I went to see my GP on Friday afternoon. A letter should be on its way today to Peter Kay to try and speed things up. She is pro-active when needed. This Fellow (sorry I can't remember his name) started talking to me before the aspiration about maybe taking tissue samples before the 1st stage. Peter Kay did not mention this at all.
6 weeks from the next clinic appointment (20 Nov) takes us to the New Year so that, at the moment, will be the very earliest date that the 1st stage op will be carried out. March being the earliest if they do tissue samples. On Mr Kay's original forecast the 1st stage would have been completed by the middle of November and the 2nd stage over by the end of February.
I've calmed down and I'm not so upset now. The Fentanyl patch is making me dopy but I don't mind as it is reducing the pain to a manageable level. It is affecting my colon though so I'll have to decide at what stage I can cope with it. I can't take much more laxative. I already take well over the recommended maximum dose daily with the agreement of my gastro.
I will wait and see what reply the GP gets. As it is addressed to Peter Kay he can't ignore it. I just wish that when target dates are given out that they are realistic and don't get hopes up. I never imagined 2 years down the line from a TKR I would be in so much pain and my knee hot and swollen. Some days I can hardly weight bear on it. When I was in for the aspiration I was on the same ward as patients waiting for new knees and hips. They could do so much more than I could! I am going to make sure that Mr Kay is going to do my ops. That was the whole point of chnaging hospitals and surgeon. Some of the patients on Thursday thought that their surgeon was going to do their op and it turns out that he wasn't doing it.
I got in touch twice with Peter Kay's secretary whilst trying to get a date for the aspiration. She said that she couldn't book an appointment for me. Twice she got in touch with the admissions' lady asking her to get in touch with me. It did not happen. The secretary told me that they book theatre 6 weeks ahead for surgery but aspirations were fitted in quickly. I was repeatedly ringing admissisions myself until somebody answered the phone and it wasn't on answerphone. I got a date then.
This time at the end of the aspiration, Peter Kay's Fellow said that they should get the results in 2 weeks but he would leave it to 3 weeks before I came back to clinic to be on the safe side that the report would be back. Half an hour later when the paper work was done for me to be discharged, the nurse gave me the paper which said the 20 November. I questioned it straight away that it was 6 weeks not 3. She said that they were fully booked until then and that the Fellow had OK'd that date. I said I would go and see my GP and try and get it moved forward. She said that would only move somebody else down the queue and wasn't at all helpful. I explained that when I met Peter Kay in clinic he said 2 to 3 weeks for the aspiration and 4 to 6 weeks from then until the 1st stage of the revision.
I went to see my GP on Friday afternoon. A letter should be on its way today to Peter Kay to try and speed things up. She is pro-active when needed. This Fellow (sorry I can't remember his name) started talking to me before the aspiration about maybe taking tissue samples before the 1st stage. Peter Kay did not mention this at all.
6 weeks from the next clinic appointment (20 Nov) takes us to the New Year so that, at the moment, will be the very earliest date that the 1st stage op will be carried out. March being the earliest if they do tissue samples. On Mr Kay's original forecast the 1st stage would have been completed by the middle of November and the 2nd stage over by the end of February.
I've calmed down and I'm not so upset now. The Fentanyl patch is making me dopy but I don't mind as it is reducing the pain to a manageable level. It is affecting my colon though so I'll have to decide at what stage I can cope with it. I can't take much more laxative. I already take well over the recommended maximum dose daily with the agreement of my gastro.
I will wait and see what reply the GP gets. As it is addressed to Peter Kay he can't ignore it. I just wish that when target dates are given out that they are realistic and don't get hopes up. I never imagined 2 years down the line from a TKR I would be in so much pain and my knee hot and swollen. Some days I can hardly weight bear on it. When I was in for the aspiration I was on the same ward as patients waiting for new knees and hips. They could do so much more than I could! I am going to make sure that Mr Kay is going to do my ops. That was the whole point of chnaging hospitals and surgeon. Some of the patients on Thursday thought that their surgeon was going to do their op and it turns out that he wasn't doing it.
Josephine
NURSE DIRECTOR EMERITA
Oh dear - you have been given the run around and no mistake. I do hope PK will get things sorted for you but sometimes (quite often actually) a man in his position gets called away to meetings, lectures and such and that's part of his job too so he can't say no.
I assume you have tried adding a fiber product to your intake for bowel function - ?? I know Josephine likes another product than I do, but I rely on metamucil.
OP
OP
busylizzie
post-grad
maryo52 I wish it was as simple as increasing the fibre content of my diet. Too much fibre actually makes me worse. It is the peristalsis function that does not work. Twice during corrective surgery for adhesions my sigmoid colon (the one that is supposed to be on the left) was twisted and attached to my vagina and the right side of my pelvic wall. It was z shaped. Twice they freed it. I had a colonoscopy last year and the adhesions are back (or never gone). I have idiopathicinflammation on the inside of my colon. I suspect that certain sections of my bowel now have limited peristalsis. The laxative they have me on is Sodium Picosulfate. I have nerve damage around my colon as well. The delights of gynae surgery when it goes wrong.
I'm putting off an elective stoma with my luck on surgeries. That would improve bowel function but not get rid of the pain from the nerve damage. They have tried denervation a few years ago but it didn't work. I really struggle with oral meds in particular pain killers.
I'm putting off an elective stoma with my luck on surgeries. That would improve bowel function but not get rid of the pain from the nerve damage. They have tried denervation a few years ago but it didn't work. I really struggle with oral meds in particular pain killers.
Wow. I've known people with similar issues. It really does complicate your already complicated knee situation. I'm so sorry you have to go through this, and to wait so long for the much needed surgeries.
RestAssured
alpha
busylizzie,
I am so sorry to read of all your troubles! The antibiotics brought my pain under control and I hope they can move quickly in order to save you from further colon problems!
I am so sorry to read of all your troubles! The antibiotics brought my pain under control and I hope they can move quickly in order to save you from further colon problems!
OP
OP
busylizzie
post-grad
Thanks for the replies. To complicatate things further I've just had a flair up of the back pain and sciatica. I've been awake most of the night. It has been building up the last few days, I don't know want I've done to set it off. The patch keeps coming loose. It is a generic one, I haven't had one of those before. Perhaps the adhesive isn't as good. Next prescrition I'll ask for a different one.
I have to go to the hairdressers this afternoon, I've been putting it off and putting it off. I have to sit for 2 hrs I need my highlights doing again they are well outgrown. My hairdresser is on maternity leave so I have to go to a new one. I do not like going, but it is a necessity now with my multicoloured hair. The grey is showing down the front. The back is my natural brown colour. The highlights make it tone together.
I have to go to the hairdressers this afternoon, I've been putting it off and putting it off. I have to sit for 2 hrs I need my highlights doing again they are well outgrown. My hairdresser is on maternity leave so I have to go to a new one. I do not like going, but it is a necessity now with my multicoloured hair. The grey is showing down the front. The back is my natural brown colour. The highlights make it tone together.
OP
OP
busylizzie
post-grad
Got a date now for the first stage of the revision - Monday December 9th.
It has been quite a journey getting the date. First I've been having real trouble with the Fentanyl patches. They kept coming loose and falling off some just a few hours after being stuck on. I've been cycling up and down with the medication getting horrible side affects and feeling quite ill with it and not controlling the pain. I've got some more now that aren't generic and they are better. Still not doing that much for the pain and I still feel dopy but better than nothing. It hasn't helped that my GP has been on vacation for the last fortnight.
Back to my knee. I rang Mr Kay's secretary to try and get the aspiration results last week. I was feeling very low and burst into tears on the phone. I couldn't have the results over the phone but arranged for them to be faxed to the GP - negative for infection. I explained about the delays and she said it was even worse now with a 10 to 12 week wait for an urgent operation, 28 weeks for a routine. I got very upset. I also mentioned that my follow up appointment to discuss the aspiration results had come through with Mr Kay's Fellow not Mr Kay and I really wanted to see Mr Kay to discuss them.On my first visit to see Mr Kay the aspiration was a 2 to 3 week wait and then 4 to 6 weeks to the 1st stage of the revision. She was very nice. She looked up the letter and agreed that is what he had said. She was surprised that I hadn't been scheduled for the surgery. She tried to get me in the see Mr Kay and the first appointment could possibly be the middle of December if not it would be January. I explained I was in a lot of pain and haven't been able to control it. She said that she would get in touch with Mr Kay and get back to me.
She was a star and came back to me the next day. I had an appointment to see Mr Kay yesterday. He saw me in a break between operations as Monday is his theatre day. We had a lengthy discussion and the outcome was he is going to do the first stage of a revision on the 9th of December using a spacer. He is doing it as a two stage to see how I get on without a prosthesis, whether the pain decreases and to get lots of samples for analysis and check for allergy. He still thinks it is most likely to be an infection because of the amount of pain I'm in and the length of time I have been in pain.
We also discussed my problems with medications and the fact antibiotics have always improved my stomach issues as well as my knee and whether there could be a link. This is the first time the link wasn't dismissed although i've discussed this with other consultants many times. Whether I could have a low grade infection constantly in my body and this is giving me problems with my knee.
He also mentioned using a hinged knee . But the hinged knees are all made from cobalt chrome alloy and an oxinium one isn't available. He hasn't decided what he is going to put in at the 2nd stage it depends on the outcome of the 1st.
I'm still in a lot of pain but there maybe some light at the end of the tunnel now. I think I have to just sit/lay it out to the 1st stage now. I'm not quite as low now. Antidepressants are a no no I have far too many side effects from them.
It has been quite a journey getting the date. First I've been having real trouble with the Fentanyl patches. They kept coming loose and falling off some just a few hours after being stuck on. I've been cycling up and down with the medication getting horrible side affects and feeling quite ill with it and not controlling the pain. I've got some more now that aren't generic and they are better. Still not doing that much for the pain and I still feel dopy but better than nothing. It hasn't helped that my GP has been on vacation for the last fortnight.
Back to my knee. I rang Mr Kay's secretary to try and get the aspiration results last week. I was feeling very low and burst into tears on the phone. I couldn't have the results over the phone but arranged for them to be faxed to the GP - negative for infection. I explained about the delays and she said it was even worse now with a 10 to 12 week wait for an urgent operation, 28 weeks for a routine. I got very upset. I also mentioned that my follow up appointment to discuss the aspiration results had come through with Mr Kay's Fellow not Mr Kay and I really wanted to see Mr Kay to discuss them.On my first visit to see Mr Kay the aspiration was a 2 to 3 week wait and then 4 to 6 weeks to the 1st stage of the revision. She was very nice. She looked up the letter and agreed that is what he had said. She was surprised that I hadn't been scheduled for the surgery. She tried to get me in the see Mr Kay and the first appointment could possibly be the middle of December if not it would be January. I explained I was in a lot of pain and haven't been able to control it. She said that she would get in touch with Mr Kay and get back to me.
She was a star and came back to me the next day. I had an appointment to see Mr Kay yesterday. He saw me in a break between operations as Monday is his theatre day. We had a lengthy discussion and the outcome was he is going to do the first stage of a revision on the 9th of December using a spacer. He is doing it as a two stage to see how I get on without a prosthesis, whether the pain decreases and to get lots of samples for analysis and check for allergy. He still thinks it is most likely to be an infection because of the amount of pain I'm in and the length of time I have been in pain.
We also discussed my problems with medications and the fact antibiotics have always improved my stomach issues as well as my knee and whether there could be a link. This is the first time the link wasn't dismissed although i've discussed this with other consultants many times. Whether I could have a low grade infection constantly in my body and this is giving me problems with my knee.
He also mentioned using a hinged knee . But the hinged knees are all made from cobalt chrome alloy and an oxinium one isn't available. He hasn't decided what he is going to put in at the 2nd stage it depends on the outcome of the 1st.
I'm still in a lot of pain but there maybe some light at the end of the tunnel now. I think I have to just sit/lay it out to the 1st stage now. I'm not quite as low now. Antidepressants are a no no I have far too many side effects from them.
Oh, such good news. What a long rough road you've been on, and all those waits.
Well, antidepressants I guess are helpful for certain people and in certain situations. But you have been feeling down with good reason, not because your brain chemicals are out of sorts. You need for things to move forward correctly, and fingers crossed that this new good trend continues.
Well, antidepressants I guess are helpful for certain people and in certain situations. But you have been feeling down with good reason, not because your brain chemicals are out of sorts. You need for things to move forward correctly, and fingers crossed that this new good trend continues.
OP
OP
busylizzie
post-grad
Wow. I guess I better be more careful using tools lest I injure these magical fingers!
So, that's a little over two weeks. I bet you're getting real good at "one day at a time" living.
So, that's a little over two weeks. I bet you're getting real good at "one day at a time" living.
OP
OP
busylizzie
post-grad
Well I'm getting there. First stage of the revision is this Monday. I have to be at the hospital at 7 am and I'm supposed to be first on the list. I'm having a spinal again, this time with an epidural. Anyone had this? This is so that they can top it up if necessary. The original TKR spinal started running out about 1/4 hour before the end of the op. Hopefully I will skip the sedation again and be totally awake as the last two ops. I have my mp3 player ready. Definitely having a catheter I have had real trouble with my bladder for the last two ops, but was refused one. This anethetist said yes I really need one.
Just hope that they find out where all the pain is coming from. These last two years have been a long haul. It has been a long wait. Don't know what to expect. Possibly have to stay in bed for 2 days this time, possiblly (likely) have brace. Mr Kay is putting in an antibiotic spacer. 7 to 10 day stay. IV antibiotics a certainty. I have to wait for culture to find out about infection and won't be released until results are back. Doing many tissue samples to find out if an allergy as well.
Spirit wise I feel positive, better than I've felt for a long time. I'm hoping for light at the end of the tunnel. I hope that they can control the pain this time in hospital and the bad experiences are a thing of the past.
Just hope that they find out where all the pain is coming from. These last two years have been a long haul. It has been a long wait. Don't know what to expect. Possibly have to stay in bed for 2 days this time, possiblly (likely) have brace. Mr Kay is putting in an antibiotic spacer. 7 to 10 day stay. IV antibiotics a certainty. I have to wait for culture to find out about infection and won't be released until results are back. Doing many tissue samples to find out if an allergy as well.
Spirit wise I feel positive, better than I've felt for a long time. I'm hoping for light at the end of the tunnel. I hope that they can control the pain this time in hospital and the bad experiences are a thing of the past.
OP
OP
busylizzie
post-grad
Just wrote a long post and lost it. Will try again soon now I'm home
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