It's been an interesting couple of weeks. Shunted from an arthroscopy specialist to his colleague the knee replacement surgeon, I now know the following:
-My right knee, specifically the inside or medial area, is shot. Combined with osteoarthritis, this knee is effectively almost seventy since it is twenty years older than my almost-fifty-year-old self.
-The proposed partial replacement surgery should be done while my lateral side is still free of arthritis. However, there is no data from the medical literature suggesting that this surgery will be successful in patients like me. The surgeon says, based on the MRI and recent x-rays, that I have a window of time (from one to five years) before surgical intervention will be necessary.
-I am not a good candidate for a total knee replacement, so a partial is really the only option, and since there is no data on its use amongst ambulatory cerebral palsy patients, the likelihood of failure or needing future replacement surgeries over the rest of my life span is quite high. This is because I walk and move differently than those for whom the joints are designed and knee surgeons know that I and others like me are poor risks. They don't do surgery on patients like me often and rarely do they study us or publish any findings.
-When I queried this specialist about conserving the joint once replaced by using the chair I'm getting, his response was astounding. He said that his was more a Sports Medicine focus and that he believed all joints should be used up, regardless of the frequency of future surgeries, the cost to the patient or the emotional toll of eventually having so-called revision surgery (switching from a partial knee replacement to a new total knee). He followed this with, "If you end up with a total knee replacement and in a wheelchair full time at 70, so what?"
-He is on the faculty of the medical school in this community, and highly thought of. Given the uniqueness of my situation, I find his responses entirely too cavalier. He is exactly the type another renowned total knee specialist warned me away from months ago. I have six months before returning to him or finding an orthopod I can talk to. The odds are not great on either score, given my life-long experiences with orthopedic specialists. He did tell me that I understood my situation quite well (surprised that I've a brain perhaps?).
-Meanwhile, I see the Adaptive Seating Specialist yet again on Friday to finalise the chair. Once that is done, I will be taught how to use it to minimize injury and strain. I am continuing research on pain control. Someone inquired about acupuncture. That hasn't worked well in the past and isn't a covered expense here, so I am looking into other things.
-Someone suggested looking at the literature on cancer and pain control, just to see if I can find anything interesting or useful to me. If anyone has read anything in that area, kindly let me know.
-My insurer is keeping me on the phone trying to unravel claims that have been processed incorrectly by them, coded wrongly by harried docs or otherwise screwed up...A never-ending morass...
-I am continiung the anti-inflammatories and ice packs and so far, things are okay. Small mercies.
Thanks to everyone who wrote in, sent postcards and shared their time.
I am tending two cats now on antibiotic therapy following another outbreak of their feline upper respiratory, and hoping for rain.
As Passover concludes, I wish you all a belated Happy Easter, Joyous Passover and Wonderful Spring!
13 comments:
Hi e!Welcome back! Sorry to hear your knee isn't holding up. And not surprised to hear there's not much data to support( pardon that )
a proper replacement. There must be something.
And isn't that just like some doctors to shove you over to some-one else. Mom's PCP hasn't seen her since before her hospital stay; he's using an underling as a go-between. And her specialist is pushing for a kidney transplant. Uh-huh.
This other doc you speak of sounds like he's got a reeeeaaal nice bed-side manner( read that as heavy sarcasm ). Sports medicine? What, you're thinking about a career in football? It's further surprising to see that your condition is being grouped in with sports injuries( at least by this mook ). Your friend was right. Shoulda seen some-one else. Keep searching 'til you find a doctor that will actually listen to you, the patient( preferably one who's not preoccupied ).
Mom's going through a similar debacle, only with catheters. And there's no guarantee the 3rd one( when she does get it ) will work well enough or fail. I know 'tis not the same as a shot knee, but the pain and mental anguish are still there. But if you've a window that wide, no sense in repeated operations that may not work. Some times you're in a better position by doing your own research( which I can tell you have ).
And the medical billing snafu; can relate to that...a lot!
Will check into some things on my end, to see if I can find out anything further. I'll let you know, regardless. and as always my prayers are with you. And the kitties, miaow, miaow! :)
Can I just say that it's terrible that they rarely study or publish findings on walking/ knee problems connected with CP?
and that cavalier doctor--I've met those (!@#&!) and your other doctor was spot on telling you to avoid that sort of person.
as for the multiple surgery idea, i-- it makes me think of all the heart surgeries a young cousin of mine went through as well as older relatives. Although they recovered quickly each time, it is frustrating to think of more than one procedure.
You mention the failure rate of these surgeries --something to consider. Have you spoken with other CP knee surgery patients? Are you still looking for the perfect knee specialist? What about the renowned guy? I'd want him.
I admire you for saying ... it's been an interesting couple of weeks. I know I wouldn't handle it anywhere near as well as you have.
I wish I could take you off that merry go round. Oh, how I wish!
Considering my (reasonably healthy) father was walking around with a serious problem for almost eight months before he could get anyone to approve him for surgery, I can only imagine what hoops you have and will have to jump through.
If you need an advocate with the insurance company, let me know. My aunt worked for Blue Cross for years and knows a lot of ways to get through the red tape. I'm sure she'd be only too glad to offer some advice if needed.
Hugs.
Hi E, so sorry to hear about the medical not-so-merry go round that you (and the cats) are on at the moment.. Not sure what else I can say of any use, other than I'm sending you some love and supportive wishes from here x
God you're in the wars. I wondered why you thought you weren't a good candidate for a total knee, I didn't realise you had CP so didn't understand that perhaps your balance or bone alignment might be a little wobbly but maybe the partial surgery will do the trick. It is very, very hard to find a specialist who has any more than a mechanical or fiscal interest in their patients but you keep up the search there has to be one out there somewhere? As someone with a variable dicky knee, I feel your pain . .not as intensely but empathy to you.
HEY E!
I saw a knee guy on Charlie Rose a while back...lets see....yes!
http://www.charlierose.com/view/interview/9322
I can't really remmember much about the interview except that this guy was very optimistic about what they will be able to do with knees in the near future.
And I can't watch it at work...
but you might find it interesting if not helpful....I have prettyknees and i still remember enjoying the interview.
And I'm sending your link to my sister, she is having foot problems and she may be inspiresd by your courage.
Did you know how courageous you seem? I think we should start calling you Braveheart!
My surgeon is one of these cavalier doctors you would like to punch in the mouth. It's quite obvious they have never experienced what either of us has or they would think twice before being so cocky. You are being a wonderful advocate for yourself. That's the best thing you can do. I hope you get all this sorted out and can make some real progress and perhaps some informed decisions soon. I know you are anxious to get back to more than just Blogging. Happy belated Possover!
Don't know if you can get it where you are, but Shiatsu massage is fantastic for helping with whole body issues. I haven't had a bad back or my tennis elbow for years as a result of having it.
xx
Thanks for the update. I wish things were going more smoothly. Are there any specialists who work exclusively with ambulatory patients who have CP or similar issues? You just can't be the only person out there who's ever confronted these issues, e. There have to be more of you. I hope you can find someone who's a little better at assessing your individual needs and options, without being so cavalier.
I have doctors who genuinely care ... but one who shifted me over because his 'new life' as a counseling pastor gave him no time to stay up to date on mood disorders. My family doctor is sweet and nurturing and completely ignored my warning that I metabolize meds like a child - ergo, please give me a third of a normal adult dose.
Yep, once again for the second time since february I became the victim of 'overdosing' symptoms. I'm now longing for the weeks I was depressed and spending all day in bed. At least I didn't feel like I was 70 years old already !!
I'm throwing you a life jacket and hoping you are able to enjoy simple pleasures. If anyone deserves a medical break, it's you 'e.' If you find a specialist in Houston, TX - you have a place to stay for free!
xxx
rdm
hello, sorry I've not been here much lately.
Its so hard when the "experts" offer different opinions and some so - as you say - cavalier.
I do hope you find someone good who you can have confidence in.
It sounds as though there might be some useful ideas and offers in these comments? I hope so - I'm afraid I have nothing to offer but lots of sympathy
HI, just found your blog and I am so sorry for the trouble you are going through. I used to do classical ballett and my knee are simular to yours so much older than I am. Ober the lst 24 years I had alltogether 13 times some sort of knee surgery. Diagnozed with Chrondropathia patellae last stage I have no cartolage left and for mayn years the suergeon suggested a replacement. I grit my teeth for years hoping there would be a different solution to it. Finllay, a very few years ago science started to grow cartilage in vitro. Yesterday I got my own cartilage grown in vitro placed into my knee and the next few weeks will show if I am finally pain free - first time in about 10 years. The knee is such a big and complicated joint and I am aware that my story is differnt to yours. Maybe it is a bit encouraging to you that was isnt possible today might be there tomorrow for you. I wish you the very best and will check back on you. Paula xx
This is just me, checking in...
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