Knee Appointment

Well it's almost been a week.  I still end up so pissed off even thinking of the encounter I had with the doctor (and then after with my dad) but figure I should get this written out before I start forgetting important things.

So I was very hopeful of this appointment, as was my mom and we had already minorly talked over some issues that might come up with more knee surgery (sleeping arrangements and whatnot).  We had to get up really early as it was one of the first appointments of the day and we live a little over an hour away.  Got up and got dressed and packed (book for the trip, shorts for the appt etc) and headed off to Timmy's to get an Ice Cap before getting on the high way to the clinic.

So we get there and have to wait for a while (this is a busy clinic at a teaching hospital that also houses a physiotherapy center) before getting called back to the room.  The nurse recognized me (not sure if from my first round of surgeries there or just this last month) and we got talking about my old OS Dr. F and how much crap he ended up going through and with her telling us that he isn't the Dr. F that we would remember anymore sadly.  Dad left the room while I got in to shorts and comes in and says I am on the board as 'Stacey new knee', it took him a moment to realize it was just that it was a new knee case and not a new knee operation!  I went through a pile of paperwork filling things out, what happened, what treatments have been used, surgeries etc.  It took quite a long time to fill it out and to get all the details.  Even had to ask dad a few questions as to what has been done.

Finally the fellow comes in.  He asks what is going on and getting my history (note: he never picked up the questionaire I filled out).  Three times he did an exam on my knee, have me lie down and played around with both legs would have me sit up and then think of something else and have my lie down again for him to check something.  He also wanted to see the 'tricks' when he found out about the EDS.  I kept it to the elbow, and the thumb to wrist trick and told him to what degree my knees hyperextended.  I tell him that surprisingly I have lost a great deal of ROM since the injury and he then wants to see that so I have to lie down again.  (note: going up and down like that just killed my lower back as I couldnt shift around to realign the lower spine).  He kept asking me which was worse: 1) instability or 2) pain.  However I could not get him to understand that yes the pain is bad but that I deal with chronic pain on a daily basis and that the most pressing issues is the instablitiy becuase it is messing up other joints.  I tell him that I am still having to take breakthrough pain meds daily and that a prevously 3 month supply of breakthrough meds is only lasting for a month now (How else do you describe the severity of pain when you are in pain daily???).  He goes over the bracing and physio route and even my dad spoke up at this point stating that they were both useless in my situation and that it was actually Dr. F that told me bracing was futile with my knee.  It took a lot of time for him to get that my knee went out to the medial side and not the lateral side.  That the instablity is the knee feeling like it is going out to the medial side.  From out of no where he comes up with this 'would you rather' game.  He finds a spot on my knee at the bottom to the lateral side and pushes down on it hard.  He then goes would you rather this pain be gone or your knee stable???  I had no clue what he was even talking about!  Again I had to state that I can handle pain, I do it daily it is the instablity that is the main problem.  After a good 20 minutes he then leaves to go get the actually doctor.

A few minutes later I hear the fellow and Dr. L outside the door.  First thing Dr. L says... "How long ago was the car accident?"  I had to think for a minute as I was wondering if he was talking about the one I got into in 2003 (the clinic knew of this accident) until dad said that I hadn't been in a car accident.  Then we realized that I said I dislocated while reaching to the backseat of the truck (no clue how they took that to be a car accident!).  We get that settled then he asks again about what is going on (note: He didn't look at any of the paper work I had just filled out either).  We went through everything again and then he did his own playing around with my legs and checking out the hypermobility in other joints then sits down.  He kept asking if I was back to my 'normal' and not what a normal knee should feel like.  I kept telling him no that I wasn't and that I was still in a lot of pain.  I won't go in to detail about all he said as honestly after one specific comment I just about lost it.  He then states that since I had already had three operations on the lateral side of my right knee that it was pointless to do any more work in there and that nothing else would work.  He kept stating 'with your condition' things are just going to get loose again anyways so what was the point.  Here are a few of the "statments" that stand out to me - and my reaction outloud and (what I thought in my head):

"You just need to strengthen the muscles of your knee" - I have been assessed and told that my muscles are all as strong as they need to be and that too much strengthening actually leads to the same problems of instability because the muscles are trying too hard (I refuse to go down the physio route again unless it is post-op!) "Well who said that" - two physiotherapists and my rheumatologist

"Have you tried bracing?" - Yes, bought the one suggested last time and can not wear it as it causes more problems than it's worth.  I have been told that for my knee, braces just won't work. (Do you really think I would be going this far down the surgeon path if bracing fixed it?) "Who told you that?" - Dr. F (Dr. F is my old OS and who the entire knee clinic is named after)

"You need to stop the mindset that you are disabled" - (didn't answer this one but was pissed and just about left the office.  I wish I had of said my family doctor, rheumatologist, genticist, physiotherapist and 4 different government agencies have all told me I am disabled.  It takes a long time to accept that fact and I don't appreciate being told that my belief that I am disabled is affecting my health in a negatice way)

"You have to think like an abled body person" - *eye roll* (If I was an abled body person I wouldn't be in this office, I would be out riding my bike with my nephew or taking him to the park to kick a ball around etc)

"What do you want me to do?" - Dr. F had told me that surgery to re-align my MCL, LCL and patellar tendon would be the most helpful to work at getting that balance to keep my knee properly alligned (You are the surgeon, not me, I just want you to do something!) "Well Dr. F isn't a surgeon" (note: Dr. F in this statement is the one I saw a few weeks ago, not my old OS that I loved!)

He then basically just stopped, said nothing could be done, I need to strengthen my muscles and that surgery wouldn't be done as too much has been done laterally already that he doesnt want to mess around with it anymore (note: Me and everyone I have asked all agree that the fact that so much has already been done to the lateral side is more of a reason to go in and do a clean out and check that everything is working).  Then he goes "Okay?" and I say "No" and he goes "Well I can't do anything" and leaves the room.  At this point I am already in tears (and again now just writing this up) and I look at dad and he just says we will talk in the truck and then leaves so I can get my pants back on.  I get dressed and go out to find dad and the nurse / receptionist asks if I need to make another appointment and I said "No I will not be seeing him again, I don't appreciate being insulted at a doctors appointment."  Then came something that was almost just as bad.

I finally find my dad and we go back to the truck.  He then comes up with this brilliant plan about how we are going to fix my knee - He is going to wrap it up real good and then him and I are going to go on a walk each night, even if only to the end of the driveway, we are going to go walking each night.  I just blew up at him at this point.  It was just like a huge slap in the face.  So I aksed him what about both hips, the left knee and the left ankle?  He just goes we need to build up strength so I say for the millionth time that day that I refuse to sacrifice 4 otherwise good joints for one that is beyond screwed up anyways and that it would make more sense to start looking into wheelchairs.  And that is when I get the wall of silence.  We had a few stops to make before heading home but on the way home I ask where do you go after the clinic I just went to (in terms of finding treatment) and he goes 'Nowhere, we're done they can't help you' which caused another wonderful bout of crying.

Well that's the appointment finally written up.  I have a bunch more of stuff to get up but will put them in seperate posts.