Update -- just not a good one

[emphatic]

Well, I haven't been back to visit this board in quite some time. I wish I were coming back to say things are great, but...

As some might remember from past threads, I had lateral uni in my right knee, along with OBI plugs in the trochlea, a year ago April (2006). It went very well and I was cleared to skate in July -- 11 weeks post-op. Recovery went well, and I was playing hockey (albeit gingerly) in late Aug. Back to game play in late Sept -- PAIN FREE. By early August, I thought I'd gotten past the worst of it and I was totally thrilled.

Sometime around mid-August, I started getting sick. Non-specific and weird stuff at first -- profuse sweating, feeling really hot or really cold, and a fine, jittery tremor in my hands and head. I just sort of soldiered on for a while, hoping it would just go away.

By early Oct, I was pretty sick -- a tremor in my upper body, significant tachycardia, and I was starting to lose my balance a lot (falling). By late Dec, my speech was affected. I can't walk or talk, but otherwise, I'm just ducky.

Fast forward to April 07. Months later, doctors still haven't figured it out (most just gave up right away) and I'm not doing well. I'm trying to continue to work (mostly from home) and keep some semblance of a life, but my quality of life is total crap. To say that this is a medical nightmare is an understatement. (And this wouldn't be my FIRST medical nightmare, either... it's the THIRD.)

Anway, because this isn't enough to deal with, starting sometime around last Nov., the right knee started hurting again. A bone scan showed too much uptake for that stage of healing. A flurry of appointments, scans and flouroscopy exams later, my ortho is pretty sure the tibial component is loose. (He's relatively certain it's not infected, but one can never say for absolutely sure until they biopsy tissue.) He's pretty darn puzzled about how it could possibly be loose at this point. He wants to do a revision -- my preference is to another uni, but if there isn't enough bone left, he'll have to revise to a total. I'm very upset about that possibility.

Still, that's not enough to deal with... let's slop on something else! My left knee starting catching and locking in my sleep a few months ago. Nothing like waking bolt upright in bed with a locked knee -- frickin' hurts. MRI shows the left lateral meniscus has another complex tear. Since the last complex tear couldn't be completely resected and there's almost no meniscus left, my left knee ortho (different from my right knee ortho) is suggesting a meniscus transplant. The MRI is already showing new chondral changes.

So, I'm looking at two big knee surgeries, on top of the other major medical issues. At this point, I'm trying to find the best way through this mess. Since the arthroplasty doc isn't fond of the idea of me doing both surgeries at once, I might have to just scope the left knee at the same time the right knee is revised, then do the transplant later. I am hoping, though, to talk them into doing both at once. Either way, I'm hoping my insurance will cover an inpatient stay at an acute care physical rehab hospital, so I can get complete, integrated therapy for everything that's going on.

Sometimes, life just doesn't go like we'd hope, eh?

Meg

{Edited to add:}
Holy Crikey! It just dawned on me that a replying poster apparently believes I'm getting my just deserts because I returned to ice hockey post-op. As best as I can tell, this person believes there is a direct correlation between my new neuro/endocrine/autoimmune illness plus new knee problems and my return to skating post-op.

For the record: My doctor does not believe, in any way, that my brief return to skating has anything to do with these new problems.

I have a short memory. I didn't even remember the hullabaloo my original post on this forum raised. I came back to this forum because I enjoyed the exchanges I had with some wonderful people. If you disagreed with my original post asking about returning to sports, that's fine. I had no idea it meant that much to you.
{end edit}

[Nettan]

Just thinking..has anyone checked the Uni knee, so you aren't allergic or that the body is rejecting something that is in that knee ?
That is really the first I am thinking of.
And I am also thinking of this..a friend of mine had that..was totally paralyzed and got back to normal...
http://www.mayoclinic.com/health/guillain-barre-syndrome/DS00413
Just some thoughts.

[UofRSpider]

Good luck and I wish you well, I really do.  Reviewing the other threads however, you were told numerous times about the risks and potential problems associated with knee replacements.  One can "doctor shop" all day long in an attempt to find a doctor that will say what you want to hear....this does not mean that what they are telling you is in your best interest.  I avoided replying (with negative comments) to your other thread because unless I said what you wanted to hear you would have criticized my posting.

A knee replacement surgery, if it goes bad, can leave you with a fused leg or possibly an amputation. I pray that you get your knee issues resolved but I think you now see the reality of what everyone was trying to tell you...

Please consider the possible negative consequences before jumping into more surgeries (unless you have no options).  I am 36 years old, former runner, biker, heavy trainer, and currently have a medial PKR that is failing (tibial plate that is loose). I admit...I did too much in an attempt to save my job.  No matter what any doctor tells you, these implants are made for elderly people and are not meant for impact or additional stress.  In a nutshell....the more you do the less longer it will last.

I can walk and the surgeons (2 different ones) do not want to risk another surgery for fear of getting worse.  I am in a bad situation because without pain meds I can hardly walk.   But I learned my lesson...there are no guarantees with these types of surgeries.

I am not trying to flame you so please do not think that. I just want to caution you about jumping into more surgeries without thinking about the possibilities that your situation could become worse.

[emphatic]

Just thinking..has anyone checked the Uni knee, so you aren't allergic or that the body is rejecting something that is in that knee ?
That is really the first I am thinking of.
And I am also thinking of this..a friend of mine had that..was totally paralyzed and got back to normal...
http://www.mayoclinic.com/health/guillain-barre-syndrome/DS00413
Just some thoughts.

Thanks for the thoughts, Nettan. I appreciate it.

We've been thinking about some sort of autoimmune reaction to the knee implant. At this point, Smith & Nephew (mfr of my knee -- the Oxinium Accuris) have no reports of any allergy or autoimmune problems. That doesn't mean I couldn't be the first, it just means it's hard to figure out and harder to prove. We did try a skin patch test with a titanium disc, but that didn't react. There is very little literature (medical journal articles) about titanium sensitivity, and nothing about autoimmune responses. I do have a history of autoimmune problems, so it does remain high on my "suspicions" list. The doctors seem to feel it's unlikely, but mostly because they have no idea what an autoimmune response would look like -- in other words, if they've never seen it before, how do they know what to look for.

Guillain Barre has been ruled out. That presents as a post-infection ascending weakness (legs first), over a short period of time (a few days to about 2 weeks).

Meg

[Nettan]

Have you problems with any allergies at all ? If you have that they shouldn't be surprised if you react though noone has before.
The issue though is that I believe that all reactions isn't reported. And that makes this to a bigger problem to solve.
I have a very weird allergy to meds and other stuff and noone can really say that this is common.
So I know this with docs not believing.

[emphatic]

Alrighty then... guess I should have seen this coming. 

Good luck and I wish you well, I really do.

Thanks.

Reviewing the other threads however, you were told numerous times about the risks and potential problems associated with knee replacements.  One can "doctor shop" all day long in an attempt to find a doctor that will say what you want to hear....this does not mean that what they are telling you is in your best interest.

Facts:
1. No "doctor shopping" involved whatsoever. I saw one doctor. He recommended a total knee arthroplasty. He's a meniscus and cartilage resurfacing specialist, so he referred me to his partner, an arthroplasty specialist. Due to my age (39 at the time) and high activity level, they agreed to try an alternative approach that would allow me to maintain a reasonable activity level. They did the surgery together -- the uni and trochlea plugs -- and they both thought that a return to non-checking, adult hockey was fine. To say that either of these physicians were merely saying what I wanted to hear is an outright insult to two very fine doctors.

2. I was quite clear on the "risks and potential problems associated with knee replacements." Both doctors were quite thorough in that regard and I did a tremendous amount of medical (not layperson) research on my own. Would you please point out anything I've written which does not indicate a clear understanding of these risks?

I avoided replying (with negative comments) to your other thread because unless I said what you wanted to hear you would have criticized my posting.

Funny you should say that -- from my perspective, it seems that I am the one who is blatantly criticized around here for having differing opinions and ideas. I thanked everyone for their opinions. I appreciate your, and others, thoughts very much. I politely disagreed with those who demeaned my character, or insulted my intelligence, or wrote incorrect facts.

Words, in the absence of body language to soften or frame them, carry a lot of weight.

A knee replacement surgery, if it goes bad, can leave you with a fused leg or possibly an amputation. I pray that you get your knee issues resolved but I think you now see the reality of what everyone was trying to tell you...

No, I don't see the connection. Would you care to expand on this?

I had a uni replacement. I had a good recovery and a very brief return to activity. I got very sick with some sort of neuro/endocrine/autoimmune problem. Some months into the illness, my tibial component appears to have loosened (roughly 3 months after ceasing all activity). My left knee meniscus apparently tore in my sleep (not the first time this has happened).

Please consider the possible negative consequences before jumping into more surgeries (unless you have no options).

Again, words carry a lot of weight here.

"Jumping"?? A very perjorative choice of words.

The uni surgery was hardly "jumped" into. My doctor would burst into a hearty guffaw at that one.... I'll have to tell him.

No matter what any doctor tells you, these implants are made for elderly people and are not meant for impact or additional stress.  In a nutshell....the more you do the less longer it will last.

My doctor does not see any connection between my very brief return to activity and the current loosening situation... it's one of the reasons he's very puzzled.

Thanks, though, for the very heavy implication that I brought this on myself. Anyone who's seriously ill and has additional ortho problems on top of that really feels great when someone says that.

But I learned my lesson...there are no guarantees with these types of surgeries.

Is this a paraphrase for "I told you so?" Doesn't "saying so" require a presumptive link -- a cause and effect?

I am not trying to flame you so please do not think that. I just want to caution you about jumping into more surgeries without thinking about the possibilities that your situation could become worse.

Oy... there's that "jumping" word again. Implying that I do not think carefully about the consequences of my choices. If that's not a direct insult, what is it?

Again, I have to ask -- do my opinions and my choices impact you badly in some way? Why?

Meg

[UofRSpider]

I need not reply...I got my point across.  You are obviously one of those people that believes they are always right and refuses to listen to others (who have been there) or take any form of criticism (from people who have been there). Any form of negative comment you view as an attack on your intelligence level.  Frankly I could care less if you tell your doctor what I posted...that makes me laugh. 

[emphatic]

What was your point?

[Dan150]

Okay, so two more months have passed.  As I posted earlier today regarding the possible loosening of my tibial component, my interest is in knowing if your condition has continued to worsen or are you seeing any improvement. 

For what it is worth, I am a weekend athlete and was given the hope that I would be back on the court and course, running and jumping.  (I now know that was probably a bit optimistic)  I read with great interest your entire thread as you tried to get back to the sports you love.  We are all different with different drives, motivations and skill levels.  My motto has always been....never say never and don't give in to convention.  People forget that Bo Jackson (pro baseball and football player) came back and played for the Chicago White Sox AFTER hip replacement surgery and this was probably over 6 years ago.  I would imagine that techniques are improved from then until now.  I doubt DR.'s are telling their patients that they can be professional athletes.....but he did it.

So thanks for letting us know how you're doing as of July 1, 2007

[stgiles16]

Meg, how are you doing now? have the doctors figured out your autoimmune problems?

I TOTALLY understand having autoimmune problems along with the ortho stuff. having fibro and now RA along with 2 bad knees and a bad ankle just keeps life interesting. trying to keep life as normal as possible can be a challenge in itself.
hoping that you are doing better.
hugs
missy

[kreitler7]

Emphatic,

Hang in there bud.  Life sure throws a pile of sh*t at us sometimes.

As for the return to sports, I would say forget it.  Just accept that you can't play hockey anymore.  After your surgeries, just go to the gym and do controlled exercises for your knee (biking, swimming, horizontal leg presses, ect.)  Sports require movements that are too erratic and unpredictable for our damaged knees to handle.  You may damage your knee to the point where you cannot walk.  And wallking is far more important than sports right?

As far as the transplant goes...well...let's just say they aren't very successful.  In my experience, I would say you should get one if you have pain when you walk in the lateral side.  If you don't have pain in your lateral side, I would say to hold off on the transplant.  They require a long-term PT committment (one year or more), but they have a short lifespan ( 5 years).

[rottenkid]

 I can understand your wanting to return to hockey. I myself am trying to return to softball and volleyball. I have already given up the idea of skateboarding again. I don't know if you know it or not but the company that makes OBI plugs no longer makes them. There were a lot of problems with the plugs falling apart. I elected to go with the arthro surface hemi-caps instead of the obi plugs. I am only two month post op and doing great so far.
 The biggest thing right now should be living pain free. If sports do return to your life look at that as an added bonus. Ihope to see good news on your post in the future good luck.