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TKR My Journey as of 12/16/13 - Over 1 Year and Still Trying

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OMG...I'm so sorry Ellen! There is no vindication in knowing you are right and your knee is screwed up if they can't do anything about it...and who wants them to do THAT?

Big hugs!
 
Oh Ellen, there are absolutely no words that I can say that will give you any comfort. We always say we are here for each other, and we are, but of course, we are not really 'here', if I was I'd give you such a big hug. I can only imagine how you are feeling now. Most of us rejoice, and say this was the best thing we ever had done, and the doctors always tell us it doesn't work for everyone, but it is so unfair for it not to have worked for you. You are the youngest amongst us, you needed this to continue working, to get your life back again. And once again you are sent off to wait........
All I can say is that the biggest virtual hug is winging it's way across the Atlantic, and such loving thoughts, I just hope they help a tinsy bit xxxxx Lyn
 
Much love to you Ellen - just lots and lots of love, thoughts and wishes winging their way to you. XXXX

Really hope with everything I have got that it wont be worst case scenario, and so sorry that you have to put up with more pain and angst and the not knowing for some time yet.

Look after yourself - talk soon
XXXXXXX
 
@Doglover. Seems I missed a lot of what's going on with you. Sorry you're having so much trouble with your knee. That was me with my hip replacement. Pseudo tumor metal running thru blood!! Just a thought about your veins. My bf who has no veins left after all the surgery and bloods drawn for so long but last drs office the head nurse had him turn his outer arm out (behind the elbow area) and wham a gigantic vein. Worth a shot ( no pun) to look on the out side of arm. Wishing you lots of luck you poor thing. Love susanne


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Thank you everyone for your kind words of support. Tomorrow is my 1 year anniversary. Not the happiest of occasions, but what can ya' do? We play the hand we're dealt to the best of our abilities. While I am more than thrilled to always hear about your successes and recoveries, it's kind of unfair that I haven't been as fortunate, but I'm doing my best to keep my self pitying moaning at bay. ;-)

I am interviewing/being assessed by a new PT on Wednesday. As loosening is the suspected cause of my continued issues, I am unclear on what, exactly would be the best route for me physical therapy wise in order to try and bide my time. Specifically, what should I be avoiding (leg press? knee machines? squats?) and what should I be looking to work on? I would guess that quad strength would be the thing I'm looking for, but again, I know there are things I should probably be trying to avoid (resistance bands? wall slides? ankle weights?). I really just have no idea and don't want to end up doing anything to make matters worse.

Any advice would be much appreciated. @Pumpkln and anyone else..... can you offer me some advice/tips/warnings so that I can try to not be a complete moron regarding this? Thanks so much for any help or advice that is offered.
 
DogLoverx3 said:
leg press? knee machines? squats?
Click to expand...
I would stay away from these.
DogLoverx3 said:
(resistance bands? wall slides? ankle weights?
Click to expand...
Use of any of these will depend on where you are at in your recovery, your PT can best advise, with you asking lots of questions. I think you will need to work up to these.
What ever you are given, they should never hurt. Go back and read the mantras, they are probably on page one of your thread.
Be sure the PT goes over your evaluation before doing any exercises, and that they have a slow and gentle approach, in your case less is more.
DogLoverx3 said:
loosening is the suspected cause of my continued issues
Click to expand...
Why aren't the OS's looking into this? If your implant is loose, no amount of exercise is going to help?
Good Luck, take it slow and easy,

https://bonesmart.org/forum/threads...rself-exercises-from-basic-to-advanced.14390/
 
Thanks for the responses @Pumpkln. I reported in a previous post that the results from my 3 part bone scan came back inconclusive (other than something is absolutely going on - duh), yet not ruling out loosening or infection. Although my bloods have come back fine, he would have to send a tissue sample down to pathology during the revision. I will not go through a revision (and potential 2 part revision) unless I/they are 100% certain of what is causing it, and I apparently need to wait 6 months to get another bone scan for comparison sake. He had suggested that going back to PT 'might' help and as I'm willing to try anything non surgical, that is what I'm doing. My ROM is still great, my knee just still hurts like well, you know what and is swollen. I'm guessing the thought process is to build up surrounding muscles/whatevers to help take some pressure off the knee itself? You're saying that mindset is incorrect?

I've pretty much memorized the mantras and where I'm at in recovery is pretty much 1 year out with pain, swelling and questionable balance. I can 'do' probably anything (other than walk well on uneven ground), it's just that everything hurts to do.

What are good quad exercises to do in order to build them up while not doing any more potential damage to my knee? Sorry to sound like a doofus, I just have no idea and tend to just trust the people that they know what they're doing (which hasn't actually worked well for me to this point regarding my knee)
 
Ellen....I'm sorry that you have received this "diagnosis" of sorts. Have you considered seeing another surgeon for a second opinion? Waiting 6 more months when you're in constant pain seems a bit much to me. I know you don't relish the idea of a revision, but a good revision specialist ought to be able to look at your xrays and these test results and give you something better than "maybe."

As far as the exercises go, Pumpkln has given you excellent guidance. Basically you want to avoid anything that stresses your knees or causes you pain when you do it. The more you push when you hurt, the more potential you have for hastening any loosening (if that is what's going on). This really is a time to take things more slowly....and I know that's difficult for your fast-paced life.

Give some thought to the second opinion. Maybe I can help you locate someone to talk with if you like.
 
Hi @Jamie . He is actually my 4th opinion. I've only seen surgeons that are well versed in revisions and he's the 1st one that has been willing to delve further into trying to find out the reasons for my underlying issues. My original surgeon (Siverhus), to this day, tells me everything is 'fine' and that it's all in my head and just take more pain meds (uhm, really?). The 2nd surgeon, that I had such high hopes for (Camaratta) told me everything was 'fine' and sent me to a pain specialist. The 3rd (can't even remember his name as although he has an amazing reputation, was a total a$$) did the same. This one, #4 (Ahmed), is the one that actually listened to me, told me that what I am experiencing is not 'normal' and sent me for further testing and scans. I'm sadly running out of revision surgeons in my area that I trust or have any faith in. If you have any suggestions for me regarding another surgeon, I'd be more than grateful.
 
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Wow.....sorry but I guess I'd forgotten you'd been so thorough in your search to find out the problem!!! If you give me your zip code I can take a look. This latest guy does sound like he's certainly better than the others, but I'm kind of confused as to why he would want to wait two years.

Do you happen to have the xrays so you could post them for Jo to take a look? She's really good a reading them and maybe could see something this doctor has missed.

In the meantime, if I have your zip code, I can do a little searching for you.
 
Sorry Jamie, I live in 85022, but there are a bazillion zip codes in town so anywhere near Phoenix, Scottsdale, Glendale, Peoria, Cave Creek would work. :) Yes, although I'm the quintessential ODIC member, I've known, with some certainty, that something wasn't 'right' since early on so have done a lot of research on my own. You've got a lot of people to keep track of on here, I wouldn't expect you to remember everyone's details. ;-)

I do not have any x-rays to post (aside from 2 weeks post op). Everyone has said that the implant looks stable from the x-rays that have been taken, so didn't think to ask for copies (my bad). It's not until this 3 part bone scan that lit up like a Christmas tree that anything has been confirmed as being wrong with my knee. I don't have any stills of the scan, but do have a CD of it as well as a copy of the radiology report.

Oh, and as for waiting, he says that within 2 years of TKR, the (nuclear medicine) 3 part bone scan can result in a false positive? That's why he's suggested trying to wait it out for another 6 months so the scan can be redone for comparison sake and hopefully be more conclusive. He left it up to me which direction I wanted to go right now (surgical or not) and I don't want to have another surgery based on a 'maybe' (and am terrified of going through this again), so opted to try and wait. He did say that if things got too bad, to come back in any time before the 6 months is up.
 
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I'll tag @Josephine and see if she could tell anything from the scan or the report. In the meantime I'll take a look around your zip code.
 
DogLoverx3 said:
I'm guessing the thought process is to build up surrounding muscles/whatevers to help take some pressure off the knee itself
Click to expand...
Building up the muscles can help to take the pressure off your knee. If it is loose eventually you will need a revision, one operation, as long as there is no infection.
Let us know how it goes with the PT.
 
How disappointing about Camarata....he sounded good from the information I found.

Here are some other possibilities. A couple are a bit of a drive.

Dr. Mark Spangehl, Mayo Clinic
broken link removed: https://www.mayoclinic.org/biographies/beauchamp-christopher-p-m-d/bio-20053097
Dr. Eral Feng
broken link removed: https://northazortho.com/physician/mark-b-davis-d-o/
broken link removed: https://www.flagstaffboneandjoint.com/amber-randall-profile.html
 
Thanks Jamie! I'll start my research on your suggestions. I was disappointed in Camarata as well. I wonder if I just didn't explain myself properly or if he somehow got ahold of the notes from my original surgeon who, as I've seen the notes for myself, wrote whatever he felt like instead of what I was actually saying... I've thought about going back to Camarata with the CD and report from my scan. I just have a hard time getting past the fact that he didn't want to search for an underlying cause for my pain and just sent me to a pain specialist in order to cover it up.

I appreciate your hard work on my behalf!
 
You're most welcome. There wouldn't be anything wrong with taking the results of your scan back to him for review. It's always possible that he just didn't "connect" with you that day. He actually sounded pretty good from the information online. 'Course.....personal experience is always better. I just don't have that many knees and enough airplane tickets to make that happen! :rotfl:
 
Appreciate your insight (and humor). I may actually go back to Camarata. He was nice and did listen, just didn't seem to 'get it'. As you know *ahem*, I sometimes don't express myself well though. ;-) You did find some good revisionists for me to consider though! I'm partial to younger surgeons as I know that I'll need a revision (hopefully later than sooner) due to my age anyway. I was just hoping to put that off for 20 or so years.
 
Well, whatever you decide....let me know how a meeting goes with any of these folks. I do keep a listing of surgeons who have been proven to treat our BoneSmarties well, so I'll certainly add any of these to that elite list if they turn out to be a good option for you.
 
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