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The verdict is in - I need BTKR :-(

Discussion in 'Knee Replacement Pre-Op Area' started by Phoenixx29, Mar 29, 2012.

  1. Phoenixx29

    Phoenixx29 Senior

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    So I have finally had my appointment with the OS, and he took one look at my X-rays, one look at my knees, and put me on the waiting list for surgery straight away - BTKR required.

    Part of me had hoped he might come up with a temporary fix (lose more weight, try some PT), but mainly I know I was fooling myself...
    As far as the "consultation" goes - what a let down that was! I was in there for less than 15 min. Part of the time he spent on dictating notes into his dictaphone! Most of the info I took away came from that...I had a list of questions I wanted to ask and never got the chance. He didn't really tell me anything apart that I need surgery, there was some mention about outcome can't be 100% guaranteed (I'm sure that must be a cop out clause), there's risk of infection, blah blah blah - but NOTHING about the surgery itself. No info to take away, nothing. Honestly - if I hadn't found this website I don't know what I would do.... Now, this consultant is supposed to have been voted one of the top 10 in the UK, and I really don't know what to think. If I have been apprehensive before, I am in a state of complete and utter panic now. He couldn't even tell me how long the wait might be or how much notice prior to surgery I would get.

    My main worry is that I have had allergies to nickel jewelry in the past - and I have no idea if that would matter. I have severe rheumatoid arthritis, and could have done with a chat about how a flare up would affect a joint replacement. And I will most certainly get a flare up as I will have to come off my medication before surgery. But I never got to ask any questions.

    My knees would be done 6-8 weeks apart. I am in two minds on whether to get them both done - and therefore over and done with it, or wait a year or so for the second one. Realistically I think it's probably better to have both knees done (I can't straighten both my legs - so having one done will make one leg shorter I think and will then cause more stress on the hips and the new knee? Another question I didn't get answered).

    Well, back to more reading (have bought the TKR & Rehabilitation book which is very informative), try to lose some more weight (counting my Weight Watchers points should help me have something else to focus on) and try to get some exercise in. I could do with strengthening my leg muscles and hamstrings.

    And I have some shopping to do to get ready....
    • Agree Agree x 1
  2. GrandyGirl

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    Hello Phoenixx29,

    I understand how you might feel like you and the OS were two ships passing in the night. It sounded like you were treated rather impersonally. Physicians have a way of doing that. I have learned to just MAKE them focus and answer my questions by not being dismissed. I just sit right there and take my time and ask the questions and even if they seem exasperated, I don't care.....anymore than they OS and his staff cares when I sit in the "waiting" room for hours.

    You will get the answers you need from other BoneSmarties on this forum and that will make you feel better. I'm sorry your visit with the OS was so unsatisfactory. Just because they do this procedure hundreds of times a year doesn't mean that it's all very new and very unnerving for the patient.

    Dori
    aka GrandyGirl
  3. referee54

    referee54 Moderator

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    I am sorry to read the way your surgeon treated you. Many times, surgeons are renown for what they do in the surgical arena and not necessarily for their "people skills."
    That being said, perhaps you can seek another opinion---not necessarily as to what is wrong with your knees, but somebody who will take the time to answer your questions.

    I would write the questions down, and I would take somebody with you. I would also have the answers to the questions asked written down, not just by you, but also by the person you choose to go into the session with you.

    I had a BTKR, but mine were done during the same surgery---sort of a "buy one, get one free" deal (I wish!)

    While the recovery was, at times, challenging and frustrating, I would not, in retrospect,have done it any other way. I am happier now, more active now, and in better shape now---than I was more than five years ago.
  4. Jamie

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    I agree with Tim. You deserve to have your questions and concerns addressed. And, since you have RA and a nickel allergy, those issues especially need to be discussed.

    I'm not as familiar with the British medical system as Jo or Jaycey, so I'm going to tag them to advise you on whether to make another appointment with this surgeon or seek out one who will answer your questions. @Josephine: @Jaycey:

    If you wouldn't mind, could you tell them what doctor you have seen and what hospital you had planned to use?
  5. Jaycey

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    Unfortunately top surgeons aren't always "tops" in bed side manner. Sorry you had that experience Phoenixx29. I always go with a list of questions and if the OS has a problem with answering them all then he/she is not for me.

    Having said that - if you don't feel comfortable forcing the issue please don't worry. What I have found is that all the information will be available for you at the pre-op assessment. You will meet with every area (anaesthetist, theatre nurse and OS) and there you will have an opportunity to get those questions answered. Be sure and take that list and don't be shy about writing down and answers while staff are talking to you. These appointments can be stressful so having the answers written down when you get home can be a blessing.

    I wouldn't worry about the nickel allergy. I have experienced the same thing but your new knees are very high tech and very rarely cause any allergic reaction.

    Please do come back and discuss your concerns here. There are plenty of Smarties here who can help!
  6. Phoenixx29

    Phoenixx29 Senior

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    Thanks all - I really do appreciate your comments. The thing is that I was really well prepared, but once he got into his obviously well practised speech it was quite hard to get a word in. I've always had a problem with being assertive when it comes to looking after my own interests - but I'm learning! I think I was more angry with myself for not standing up for myself than anything else.

    But now for an interesting turn of events: I actually got a letter from the hospital yesterday (that's 3 days after my appointment - which is record speed in terms of the NHS) to tell me that the waiting list for Mr Allum is quite long, but that they can fit me in with another surgeon sooner - on the 13th June.

    Now I have a different dilemma - although I was a bit disappointed about the consultation, the fact is that my rheumatologist specifically arranged the referral to see Mr Allum. He is also voted as one of the top ten in the UK (by 40 leading knee surgeons in the UK) so I had high hopes.

    The surgeon they have booked me with is a Mr Raza; he is not listed on the Trust's website - so might have recently transferred. I found something on a Mr Syed Raza - but he is a specialist in knee and ankle surgery. That has me really worried!

    I think what I will do is to wait until Monday and call the office (I now have a phone number, which is reassuring!) and find out what the waiting time for Mr Allum would be and just who this Mr Raza might be. My gut feeling is to trust my rheumatologist on this. I can also try the rheumatology helpline for advice.

    Since I'm not in a lot of pain at the moment (as long as I don't overdo it) I can probably hang on for an extra month or so.

    I think Jamie was asking about what hospital it is - it would be Heatherwood Hospital in Ascot (it's not as posh as it sounds!).

  7. Roy Gardiner

    Roy Gardiner Forum Advisor

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    The single most important thing is the expertise of your surgeon, IMO. No doubt you can research these two geezers, and a very good way is to try to visit the hospital and ask the nurses. They know.

    A knee specialist who does many, perhaps hundreds, of TKRs each year is what you want.
  8. Organist

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    Phoenixx29,

    Welcome to the group. It REALLY helps to have something go with you to the appointments. My hubby went with me, and I had my list of questions IN MY HAND. It also helps to have another person (your support person) there to ask questions (maybe give him or her a copy of your list of questions) and listen to the answers. It's overwhelming trying to remember it all. We have a wonderful group of new friends here who have been through knee and/or hip surgery and can help with questions, suggestions, etc.

    Is it possible for you can ask for references (people who have had the surgery with the 2 doctors) to find out what their experience was like. In my case, we have a couple of members of our church who have been to various specialists and who have been great with recommendations for specialists -- from the point of view of 2 people who have had the surgeries.

    THIS is definitely a good support group for helping each other, and it will be better "on the other side" of the surgery -- as is said here. There's great suggestions and advice about the recuperation period too.

    Be sure to take some time every day (even a few minutes) to do something relaxing that you enjoy - something to help you de-stress.

    Becky
    (organist)
  9. Jamie

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    Have you found out anything about the other surgeon??? I'm going to tag Josephine so that she can provide some input. She may know him. @Josephine:
  10. Josephine

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    That's a legal requirement coming under the heading of "informed consent"!
    He certainly is on the Daily Mail Top Ten Surgeons. What's more ironic is that one of the comments about him in that article is that he is "also a good communicator so his patients are well-informed"!! :DOH:

    But I would really urge you not to be put off by his brusque manner. That is not in indicator of his surgical expertise. Exactly the same thing happened to my sister when she went for her hip replacement. The surgeon behaved exactly like Allum and Jean was seriously anti him for ages. We searched around for other surgeons and so on but in the end she a) couldn't manage to travel and b) found the whole of East Anglia was a corporate orthopaedic department and they didn't allow patients to swap from one surgeon to another! But, when she finally went in, she found he was just the opposite to her first impression: caring, informative, willing to give oodles of time despite being obviously horrendously busy. She was very quickly a great fan and won't hear a word against him!
    Well, I suggest you write a letter to Mr Allum detailing all your concerns - in bullet points would be good! - and saying something like "it was regretful we didn't have time to discuss these when we met on *insert date*". I've found that these chaps respond well to such enquiries and since he will be able to dash off a reply on his dictaphone (don't they all love their dictaphones!) you should get a half decent reply. Include everything: your nickel allergy, is it possible to have them done together and if not why not, what about the RA and anything else you have.

    Though you need to remember that every joint replacement surgeon living has a fair percentage of RA patients so to them, it's not a big deal.
    I wouldn't accept the alternative. You don't know who this other chap is and I can assure you it's not Syed as he works in Southend! This one's probably a newly appointed surgeon and they are trying to build up his patient list. Say NO!
  11. Phoenixx29

    Phoenixx29 Senior

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    Thanks for your comments Jo,

    I did call the waiting list office earlier this week to check on what time scale I would be looking at if I chose to wait for Mr Allum. Well, he is fully booked until the autumn, but he is also getting ready for retirement, so if I choose to be put on his list, then they still can't guarantee that I will get a date with him.

    Mr Raza supposedly has been at Heatherwood working alongside Mr Allum for about 20 years. It's still strange that I can't find anything on him though.

    Now, I could put up with waiting for an extra 2-3 months, but the fact that they can't even guarantee that I can get an operation date with him concerns me - as I could end up on the waiting list for ever!

    So what I think I will do is attend the pre-op on the 24th April; I can then arrange to meet the other surgeon - if I don't like the look of him, I can always rethink....You never know - he might be more communicative. I am also due to see my rheumatologist in May, so I should be able to discuss some of my concerns with him.

    In the meantime - I must try to build up some muscle tone and at least loosen up those hamstrings a little...

    I just don't like the uncertainties in all this - I have enough else to worry about :sigh:.
  12. Jamie

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    That sounds like an excellent plan!
  13. Josephine

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    Ah, he must be a clinical assistant then. This is a full-time employed doctor who isn't quite a consultant. I don't know .... see what you think of him when you meet him.
  14. Phoenixx29

    Phoenixx29 Senior

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    If I'm honest, I'm not really convinced about this OS who is supposed to do my operation. I have now found some kind of listing for him - he is described as "Associate Specialist - Orthopaedics - Consultant". Which got me worried again, as I have no idea what level an associate specialist would be at.

    Anyways, I will at least be going through the motions with this as I don't want to end up on the bottom of the waiting list - I really hope I will find out more during my pre-op on the 24th. Then it will be make my mind up time....






  15. Josephine

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    Ah - that's the current term for what was once a clinical assistant! He's not a consultant. Personally I wouldn't accept one of those.
  16. Phoenixx29

    Phoenixx29 Senior

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    So, my pre-op is coming up fast (Tuesday 24th) and I've been stressing and doing a lot of thinking these last couple of weeks. I hope there will be proper time for discussion rather than the hasty 15 min I had with the consultant.

    I have decided on the following plan (obviously to discuss with the surgeon). I want the right knee done first. My left one is the more painful one, but going up stairs, I have to lead with the left, going down with the right. Also, as I drive to work, I figure it's probably better to let the right one heal up first. I then plan to have the left one done after 8 weeks (surgeon told me they would leave 6-8 weeks between operations), which hopefully means I will have a somewhat stable right knee by that time.

    My shopping list of things to get is ready and I have started getting a few bits and pieces to keep me occupied. Internet shopping is great!

    My work place has agreed to allow me to work from home once I feel up to it and told me yesterday a laptop is on order and should be set up by the end of next month. I didn't realise up until then how much stress the thought of not being able to work was given me. I have not been sleeping properly and had loads of stress headaches. To be told I could work from home was such a load of my mind - I felt better straight away. They will also arrange for transport for me once I feel up to coming into work - even if it's only for a couple of hours or so. I had finally come to terms with the fact of the operation and what it involves - but being off work was actually causing me more stress than facing up to the BTKRs. You'd think I'd be grateful to have a break :th_heehee:!

    They had actually given the working from home scenario some thought but didn't want to approach the subject themselves as they didn't want to put me under pressure. They know me too well:hysterical:.

    So now I have this vision of working comfortably from my sofa with my legs up, on the laptop, radio or TV on. I'll probably have to get a timer to remind me to try to get up and moving every hour or so.

    Now I'm getting my list ready of questions to ask - and will actually have it in front of me this time - not just in my head. I'm hoping I will meet this surgeon they've booked me in with soon so I can finally make my mind up about whether to go ahead with him and get this thing over and done with.
  17. Organist

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    Phoenixx29,
    It's great that your work-place situation and the people there are supportive of your surgery and recuperation period. You'll probably need the 1st week or 2 (if you're like me) just to nod off frequently without any notice. I'm doing better now that I'm a little more then 2 weeks post-op -- more awake, but still not much energy. Working at home will be good for resting when you need to do so.

    Positive thoughts and prayers coming your way for your pre-op appts, the OS, etc.
  18. Phoenixx29

    Phoenixx29 Senior

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    Thanks Becky,

    I hope you're doing OK with your recovery - and that you'll be back at church playing that organ soon :).

    My pre-op was yesterday and all went OK - X-rays, blood test, ECG and the whole shebang all over and done. Met a lot of the staff from the orthopedic department: nurses, sister (scary woman LOL), PT guy, etc. All were very nice. Got my appointment with the OS on the 14th May, so I can meet him, rheumatologist on the 21st, so I can ask him for his opinion and potentially change my mind.....The nurse was very complimentary about the surgeon they have booked for me - so that is somewhat reassuring. But my head was spinning yesterday. It's really hit me that the 13th of June is only 7 weeks away - so much to do before then to get ready - time will just fly I'm sure.

    I have been rethinking my strategy a little after having a chat with the nurse about the timing of the operations, and am coming round to think that it might be sensible to have the second one done after 12 weeks to give the first knee time to heal. Reason being that both my legs are weak and I will really struggle to get up and down stairs if I don't have at least one reasonably good knee. I have permanent flex of around 20 deg in both knees and very weak leg muscles - so I think it might work better for me. It will prolong the whole process somewhat but it also means I could get back to work for a few weeks in between operations (assuming no complications - but who wants to think about that!).

    I don't expect to be able to do anything at all for the first couple of weeks - work that is - I WILL concentrate on recovery and doing the right thing for my knee, but after that I'm hoping to do a few hours every day. I don't expect to do a full days work for a good few weeks:th_heehee:.

    Our QC Manager will do a risk assessment on my house next week to check if I might need anything and then I'm good to go to work from home. Once I'm happy sitting at a desk for a few hours at a time I hope to go back to work - won't have to worry about driving as work will arrange transport and I also have a colleague who lives nearby who volunteered his taxi service. I can probably get set up in the office so I can elevate my leg during the day....And then it will be time for the second one....

    Now I'm rambling again - should really get myself to bed as I have an early start tomorrow.

    xx
  19. TheHistorian

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    Little late getting in here, but my consultation with my surgeon was also short and sweet, running a quarter hour. But that was because all he had to do was look at me and see I was in bad shape. Just because the meeting is short and businesslike doesn't mean the surgeon is unskilled or unfeeling. My surgeon made a list of top doctors in the Philadelphia suburbs, and he has tons of experience, like your guy, so it could be that he could quickly review your case.
  20. Phoenixx29

    Phoenixx29 Senior

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    Thanks - I've got over the "I can't believe I was only in there for 10 min" phase LOL. I had my pre-op on Tuesday and during my session with the nurse and got to have a proper look at the X-rays. Even I could see I'm bone on bone. That first meeting was effectively only a formality. Will get to meet the surgeon who is scheduled to actually do the surgery on 14 May, so hopefully that will go well. Surgeon number one although in charge has 6 months min. waiting list and is getting ready for retirement (and is reducing his work load).

    Got my work laptop today so I'm all set up to work from home once our H&S manager has done his risk assessment - so I can really take my time on getting better after surgery and not worry about getting to work and sitting at a desk all day.

    I can't believe my first op will over in 7 weeks' time (probably)!

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