June 29th - Serious Knee Injury and Family Stuff

Yet again it has been way to long between posts.  Not much has been going on medically wise since starting the thyroid medications and things have just been pretty quiet.  My nephew finished grade six with very good marks for him, he amazingly got his junior black belt in kenpo karate at only 11 and things were nice and settled with no word from my brother and I was even able to help out a neighbour by tutoring her grandson so he can get his high school diploma.  We are going to the cottage at the end of August but that was the only thing we had planned for the entire summer so mom and I figured that we would take K and head up to my grandma's house for a week once he was out of school.  We got there, got unpacked and settled in and things seemed to be going well... until that Saturday (29th).

We (me, mom, grandma and cousin) went to go and do some grocery shopping.  After a long (and sweaty!) trip to the store we got groceries for two different family's week of shopping and headed home.  We got home and I was on the back bench seat so was kinda stuck until most of the groceries had been unloaded.  When it was done to only a few items, I went to push a case of water forward with my right leg and ended up dislocating my knee laterally and pushed it up out of the joint.  Mom and my cousin continued to empty the van and then mom noticed that I was pale white, sweaty and grabbing my knee so helped me out of the van, rolled her eyes at how I dislocated it and I went in to the living room with an ice pack and mom went to get me my medications and a drink.  It sucked and I was very grumpy about it.  No one else seemed to really understand what happened (or didn't believe that I could do that much serious damage just from pushing something with my foot).  Basically stayed off it the rest of the day and kept it elevated, wrapped and iced (thankfully I always bring my own ice packs).  Went to bed that night with a pillow under my knee, iced strapped to it and loaded up on pain meds.

On Sunday we headed out to the beach to my aunt's house for Canada Day celebrations.  Spent most of the day just sitting with my knee straight and staying off it as much as I could.  Lost out on fun time though as I couldn't go to mini golf with the kids, to get snacks with my cousins or do a bit of shopping on the strip.  Wasn't very happy.  We headed to the beach to watch the fireworks and all my cousins and the kids wanted to go to the strip to get treats and go to an arcade.  No thought to the fact that I wouldn't be able to go of course but then mom remembered that we do keep a crutch in the van so I was able to hobble along behind them. Thankfully the kids seemed to stay back a bit and stay with me.  Went back for the fireworks then back to my grandma's house.

All hell broke loose on the Wednesday when my cousin had an 'incident' that through everything out of place and added a LOT of stress to the house.  The fact that my knee was injured didn't seem to matter anymore as I had been 'replaced' and was then getting asked to do favours for my grandma and my mom.  Don't even want to get into what happened but it was typical drama for the person and the rest of the entire visit was all about my poor cousin.

I was feeling a bit better the following Sunday and thought I was okay to go with my two cousins, their two kids and my nephew to his work's summer party.  I thought that it was a place with a lot of places to sit down, I wouldn't have to do too much walking and my nephew could just go off and be with his cousins while I sat.  I had even packed a book into the car so if I could find a place I could read.  That's a laugh! Like always the 'adults' wanted to do what they wanted to do (eat lunch) and then the kids wanted to do what they wanted to do (a scavenger hunt that ended in 30 minutes that they could win good prizes with).  Well the 'adults' just said fine and headed to get lunch leaving me standing with three kids (15, 12, and 11) which I were not going to let go on their own!  So I did an entire circuit of this park not once but twice while the other 'adults' ate lunch.  Then I needed a drink so they told me to go get one in the gazebo, well there was nothing so I said I needed to get to the front to get a drink.  Well it was 'let the kids ride this ride first', 'oh they like this ride', 'you guys should do that', 'look at the cute baby animals' and finally 'let's play our round of mini golf cause it's pretty empty right now'. Then I had to go back out to the car to get the kids swim stuff and I didn't have a handicap spot because they had been late getting ready to leave (and I had been up long before we left!). We saw an opening then at the handicap spot so I moved the van closer.  The kids wanted to look in the store so I left my backpack with my cousin to watch, looked in the store and came out to find my bag sitting all alone where I left it with my cousin quite a ways away.  Then I finally got a drink!!!  After a few yards of me limping and being lopsided because I had a full back pack on my shoulder the oldest cousin finally took it from me.  The kids did the water park thing while we sat at the patio and then my cousin had an 'episode' that was embarrassing her husband so we had to leave.  I had told my nephew that he couldn't get fries because that wasn't fair to the other kids, well I go to the bathroom and find the oldest cousin eating fries and gravy so I gave in and got my nephew fries to eat.  I apparently looked really bad at this point because the oldest kid looked at me, got up from the picnic table, bought me a bottle of water and told me to drink it. I was very thankfully as the pop I got early was done in two seconds as I was so thirsty and I would finally be able to take my pain meds. We finally got home and I was glad the day was over!

The next day I literally did not get out of bed.  I was so dehydrated that I couldn't stand up without passing out and my pain levels were so high that I knew I was going to be in a horrible mood if anyone said anything. And I was right when I went out to get a drink and mom goes 'Well isn't it miss. anti-social', so I just got my drink and went back to bed.

Thankfully after one month from when I injured it my knee is feeling somewhat better.  I still think that I did some damage to the tendon but I have no doctor to go to in order to see if I did any damage.  Going to wait until my next appointment (three months from now) and ask for a new MRI done on it to see if anything is messed up. Unfortunately even if it is, no doctor will touch me.  Because of the injury, sleeping on a hard bed and all the stress (which makes pain worse for me as I tense up more) I went through three months worth of pain medications in only two months.  Thankfully when I explained it to the nurse at my doctor's office she didn't hesitate and had my doctor write me a new three months worth of meds.  I am still taking more than I normally would because of it but down from what I was taking.

Bad Week

Well I have two entries to write out but I just haven't got to them yet. The first is about having a bone scan and then a recap of my appointment with my cardio / GI / internist that went well. Basically we came up with something that is giving me a LOT more energy. However that has it's down fall too. This last week has been hectic:

Friday - Working at nephew's book fair then over to a friend's place for 'Girl's Night'
Saturday & Sunday - Not feeling well, mom tells me I should stop working the book fairs as they always end up with me getting sick and maybe we shouldn't keep pressing my luck and get me real sick.
Monday - Working at nephew's book fair
Tuesday - Getting some things done around the house
Wednesday - Tutoring for 2 hours, out for supper, some shopping and a movie with mom
Thursday - Went shopping in the states until 2, had a nap then my friend came over for a few hours in the evening
Friday - A small amount of shopping with mom (had to pick up some things at a store that is going out of business)
(Plus tomorrow I am going to my friend's house for "Girl's Night" and Sunday to her parents house for her family birthday dinner)

It's amazing to have energy but the problem was that before I would always end up exhausted before the pain set in so I had to rest before hurting myself. Now I have energy so I just keep going and it's leading to a lot of pain problems. Wednesday night at the theatre I was so close to crying in the theatre I was in so much pain, even after a double dose of breakthrough meds!

Then today mom and I had to go to the store to get some towels (One of my Christmas presents from my parents was that they are going to redo my bathroom in a zebra pattern) but the store closes in a week so wanted to get it while I could. Then mom informs me that she has some grocery shopping to do as well. By the time she was ready to check out I had to go sit on the bench and wait for her. Got home and crawled back into bed. Was in too much pain to sleep but it was the only way I could be bearable. Lying in my warm waterbed was the only way to get comfortable.  Then tonight I don't know what was going on but I had my pain meds and had a heating pad on my lower back, up to my mid back then shoulders than neck and now back down to my lower back.

I am getting very down about the amount of pain. I finally have energy but I am in so much pain I can't enjoy it :( My breakthrough meds are useless, I might as well be eating tic-tac's and unfortunately my doctor will not prescribe the other breakthrough meds that I usually rotate with so I am taking at least one pill a day now with it doing barely anything and advil only helps slightly with some of the muscle pain. I don't want to increase the dosage of my long acting meds but I don't know what else I can do :(

Mad at EDS

Well I am officially mad at EDS.  I have always always took pride in the fact that I never (and would never) let it interupt my time with my nephew. (I also realized I have never really mentioned important things about my nephew which I will at the bottom).  Even if I was sick, I still went to his activites.  I have never missed a grading for his karate, even though one time I had the flu and couldnt keep anything down (stayed near the bathroom for that one!) and have also been on crutches during one and many various other minor health issues.  That was all until today.

A week or so ago, K brough home a permission form to go to see the new Disney movie 'Chimpanzee' with a bunch of the intermediate and senior classes at the theatre in town.  They wanted some parent volunteers so I asked K if he wanted me to go and he definitly did so I signed up.  Yesterday mom went in and talked to the teacher about it and found out that I could ride on the bus and go as a chaperone instead of just a 'parent'.  Kyler was excited and I was so happy to have a field trip that I could actually do (can't do the outdoors type of trips or anything physical so am limited to what trips I can go on).

Last night we were at his karate class (he got a stripe :) ) and I went to move over on the chairs to get a better view of him and my right knee shifted at the same time as a muscle spasm and subluxed pretty badly.  Mom was very worried and I apparently went white.  Of course I didnt bring my purse so even if I wanted to go to the ER to get it looked at (and documented), I didn't have my health card to do so.  I also didn't have any of my pain medications or even some advil to counteract the swelling.  Once class was over I managed to get up and get to the van so we could go home.  I got that lovely trifecta of pain - nausea, cold and sweating for the entire ride home.  We got home and I got changed and headed for the couch where I put ice on and off it for the rest of the night.  Mom looked at me before I went to bed and 'told me' that I was not going on the trip as I couldnt sit in the theatre seats that long and being on the bus (with steps) wasn't a good idea. I reluctantly agreed.

So today mom went in and told K's teacher about what happened and she was slightly shocked at home much damage I could do without actually doing anything.  Mom told her that this was why I couldn't normally volunteer for things as I never knew what was going to happen and always hated to have to cancel.  K's teacher was sympathetic and told mom to tell me to not worry as there would be enough parents at the show so she wasn't going to be short on volunteers.  I still felt horrible, not because I wasn't there to help the class, but becasue it was something I told K that I was going to do.  Mom talked with him this morning about it and he seemed okay with it (he knows the basics of EDS and also lives with me day to day to see the actual living with EDS) but it still bugs me.  I was almost in tears when he got home and I apologized to him.

This was one aspect of my life that I refused to let EDS take over.  He had a pretty crappy beginning to life and I was never going to let EDS define anything about our relationship.  To those that don't know the breif story is that when K was born he lived with his mom until he was 6 months old and she had a nervous breakdown (she has schizophrenia and now lives in an assisted living complex as far as we know) so K lived at my parents house with my brother for a few months that summer (I was also at home because it was school break as well as I had just had major knee surgery) and after a few months children's aid thought he could handle K alone so my brother got custody of him when he was around 8 months.  I never liked this set-up and knew from day one that at some point my parents would have custody of him (during the time at our house my brother was stealing my pain meds so I knew something was up).  I went back to school and things seemed 'okay'.  I got a call the next march from my mom letting me know that everything was okay but K had been removed from my brother's custody and thankfully was now in my parents custody for the time being (we had discussed this outcome before and my parents said that the main goal was we never wanted K to go to foster care and that my parents would do anything they had to do so they could get K).  K has never left our care since.  Both parents gave up their rights and were glad that my parents had custody so thankfully it was an easy case with no disagreements.  When I finished school and my health declined so fast I was fortunate enough that my parents had no hesitations about me moving back in full time, it was just expected and actually made things a lot easier as at that time both parents worked full time (both are retired now) and they had K to look after so I stepped in and did what I could to help out.  So that is where we are now, my parents house and they have custody of K and I live there as I could not manage on my own.

As I learned of the EDS I immediatley knew I wasn't going to be having kids but realized I lucked out and get to have the same experience and love with helping to raise my nephew.  Just sucks that after fighting so hard EDS finally won out today.  I will be doing everything I can to make sure that it never happens again!!!

Journey to Becoming a Zebra - Part Two

So in early August of 2000 I went in and let Dr. S (Orthapedic Surgeon) perform a Lateral Release on my right knee.  He actually proposed that he do both knees at the same time because they would both eventually need to be done.  I refused that because of, well common sense really.  It was basically decided that I would get my right knee done then as it was the worst one and then go back the next summer and have the left knee done.

The actually surgery went okay and it was expected that I would make a full recovery and get rid of most of the tracking issues.  He had to do a clean up of under the knee cap and said that my knee was very 'soft' (Chondromalasia Patella) and could be dislocated easily.  I was on bed rest for a while but was up on crutches pretty quickly and didn't have to wear any type of brace.  I was in physiotherapy immediatly after and got my strength and ROM back almost instantly.  Only down side - No pain relief at all.  Over the next year I would drive back home (2.5 hours from school) to see the doctor only to have him tell me "once you can straight leg lift 10lbs you'll be fine", then "once you can lift 15lbs" etc and kept upping that by 5lbs each time (which later in retrospect a new physiotherapist was disgusted at that as that type of weight could have seriously affected my hip).  I was also told many times that I had 'ugly' scars and that I should get a plastic surgeon to sew me up 'next time'.

The last appointment I went to of that surgeon was when he suggested I drive the 2.5 hours home, during final exams, have a cortisone shot in my knee then drive the 2.5 hours back to school that day.  I reluctantly agreed and when I went to the appointment he looked at me like I had two heads and said that he would never give a cortisone shot to someone so young (19 at the time).  I was livid!  I later got all the reports from him and apparetnly every appointment was my last, as he concluded at the end of every report "I have discharged her from my care".

After this I went to the specialist sport medicine center in the closest teaching hospital near by (which happened to be half way between were my parents lived and where I was going to school).  The doctor (Dr. F) was amazing and right away realized that the lateral release was the worst thing that could have been done because my ligaments were too lax and not too tight.  He told us that instead of the surgery stopping my knee from subluxing to the lateral side, it was now subluxing both laterally AND medially.  He thought he knew what would work but wanted to go in for a scope first to look around and decide which to do.  I had the scope done on March 22nd, 2002 and went in for a full repair of the lateral release (later retinacular repair). I did pretty well with that one.  The only thing that didn't go well is that I had to wear the immobalizer brace longer than expected because I was actully getting my range of motion back too quickly.  Things went well until I aggrevated the knee and ended up with tendonitis and bursitis in the joint that I had to go back to Dr. F to find out what I could do then.  This proved to be a great thing!

I went in and of course, because it was a teaching hospital, I saw a few different level's of students before I actually saw Dr. F.  Well I was being examined the fellow noticed that I had hypermobile knees and asked me to do a few 'tricks'.  Then when Dr. F came into the room, the fellow said that he thought I might have a connective tissue disorder, but Dr. F said that no I probably didn't because I was so short.  We finished the appointment and we decided we would try a cortisone shot (Couldn't get it then because I had drove myself to the appointment so would have to drive an hour back at that point).  That litle thought stuck right in my head though. 

I got home and started looking into it and it was just so eye-opening.  All those things that we blamed on the prematurity, all those things that we just never had a clue as to why they happened - they finally all fit into the description of EDS.  I became almost obsessed about it and researching all I could about it.  In retrospect my mom thought I was just trying to make something fit to explain things and that it was so rare and there was no family history it just didn't make sense.  I didn't drop it though and did some researching and found about a geneticist that was very knowledgeable about EDS about an hour and a half away from my univserity town.  I went in and basically told my GP to refer me to her (Dr. M) and he did.  Dr. M's office contacted me with things that I had to do (family history, family tree etc) and said that they would contact me in a little to go over these things.  Generally you call and talk to a student and then that student will go and talk with Dr M, and if Dr. M thought she needed to see you, someone would call and set up an appointment for you.  Well I skipped steps.  I did the phone interview and given an appointment date a few weeks later.

Obviously, I saw this Dr and she told me that I basicaly had a textbook case of EDS, except for the fact that it didn't seem to be in my family.  My dad had some hypermobility and a few joint problems but also a lot of 'anti-EDS' situations.  His issues could also have been because he had polio as a child.  We found out at this appointment that I was premature because I had EDS, that I would need to get into a pain clinic, get into a good doctor to monitor my condition and that I would need to research my condition a lot because most doctors wouldn't have a clue as to how to treat me.

At this point we started the trial - and - error part of the post - EDS diagnosis that we all go through.  But it is late here, and I have typed up a lot so there will be a part three to all this.

Starting to get depressed..

I know it has been a while, yet again, since I posted.  Last week my family went away to a gorgeous cottage about 3 hours north of us and it was a very nice, quiet and pretty relaxing vacation.  Until wednesday...  Anyways I will write about that a little later (I wrote up a 'diary' of each day we were away and will get posted up here as soon as I get it off of my iPod Touch).  The main thing right now though is I can feel myself starting to get depressed again but there is nothing I can really do.  There are a few reasons for feeling like this:

1) After a couple of months in limbo waiting to see when my rheumatologist would be coming back from his absence, we read in the paper just before we went away that he was in fact retiring and that we had until August 5th to contact the office about getting copies of your files.  I really honestly have absolutely no clue what to do about all this.  This is the ONLY doctor that actually appears to give a crap about my quality of life and not just into drugging me up.  He is the one that has listened to me, done all my referals, order all my tests, given me all my cortisone in my shoulder.  The only one who has done anything really productive in my health and actually understands the concept of preventative medicine before we have a major problem.  This comes when we were in the middle of a lot of different ongoing issues - my knee and the OS's at the clinic not wanting to operate and claiming my knee is stable (the dislocation last week says otherwise), the strong feeling that something autoimmune was going on (which now I have blood tests to show that he was right but can't go over them with him), the ongoing shoulder issue, the osteoporosis and wrist injuries issue and just keeping up on new treatments and medications and keeping my life having some quality to it.  He is (was) the only rheumy in my town, the best in the next town (1 hour drive) already told me she wouldn't take me way back when I was diagnosed and my parents don't want to drive the 4+ hours to the other medically large towns.  My GP just doesn't get EDS so that isnt an option either so it's going to be a lot of trial and error until we find a doctor that will a) take me as a patient, b) listen to me and treat me as an equal in knowledge on EDS c) willing to keep up to date on all things EDS, d) willing to try things to make things better and e) interested enough to have me as a full time patient in many different areas.  Which leads me to:

2) When am I going to get something medically to help me?  My right knee is messed up even though the knee clinic deemed it stable and not needing surgery yet I am still in considerable pain and not able to fully use the knee.  Having to baby it or end up in severe pain.  At the cottage last week I had to be driven to the beach even though it was only a 5 - 10 minute walk from our cottage as my knee just wouldn't make it.  Right now my entire left arm is in trouble.  I made a grab to catch a big beach umbrella / sun shade and managed to hurt the fingers, thumb and wrist initially but am up to the shoulder even being in bad enough pain to take a breakthrough med because.  My left ankle just gets weaker and weaker as the days go by and I am seriously considering asking for cortisone in my hips.  So many things that I would love to get fixed, through surgery, procedures or whatever but there are no doctor's willing to even attempt this as they will most likely not succeed 100% so they don't want that on their record.  Even if I had a 50-50 chance of improvement in some areas, I am willing to risk it at this point.  It is so heartbreaking to read of all these people going in for surgery, or having a doctor suggest a procedure etc knowing that there is no doctor that I have found that will do a damn for me.

I am just getting so sick of going to new doctor after new doctor only for those doctors to declare I am too risky and they don't want to try something because it could make it worse.  I am sick of the doctor game and am being thrown right back into it at this point when I just don't want to do it anymore.  I don't even know what to do anymore.

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.

OS Appointment - Not Happy

I saw the OS at the knee clinic today and things could not have gone worse.  At this point even thinking about it ends in me crying my eyes out.  Also I have taken 6 of my pain killers today while I normally only take one or two max.  And I still will need a dose before I go to bed.  This was one of the worst appointments I have had and to top it off I even had the guy insult me!  Top it off dad figures that nothing can be done so we should go out on walks every night to help build my strength up (even though I have had my rheumy and a physiotherapist tell me that my muscles are strong enough and much more strengthening can actually cause just as many problems and my mom just isn't saying or suggesting anything.  Will post more, probably when the sadness and depression move on to become anger so it can become a rant and not a depressing whine.

Weekend

So friday went well, K got his Blue belt with no problems, he was in a very very big grading class (20 kids!) so it was pretty late by the time we got home (for him at least) so we watched some TV as he was wide awake and then we all headed off to bed.

Saturday he had lots of fun!  He went to his first sparring class where they are now actually teaching them the point system and how to actually spar (before it was just get your gear on and go at it to get them used to the gear and stuff) and he stuck around to watch the adult's spar as well which he enjoyed.

At around 5, mom, K and I headed into Sarnia for a night out.  We went and bought our tickets for "Hop" and then went out to supper at Harvey's.  While there they actually were handing out free samples of their chocolate milkshakes so we got dessert too ;)  We got to the theatre early as it would be a packed show so we all got our drinks (and I got popcorn, you can't go to the movies without popcorn!) and got good seats (I have to sit on an aisle so I can stretch my legs out).  The movie was really good and really funny for both adults and kids.  The only annoying thing was that after the lights went down there were at least 3 familes of 5 coming in to try and find seats together, well that didn't happen as it was packed.  I mean it's the second day the show is open, it's the 7pm showing and you figured you could just waltz in when it started and get great seats?  We went to walmart after as K needed some new rubber boots.  We did some looking around and I picked up some items I needed as well before coming home and watching the last episode of season 4 of buffy.

Today, sunday, sucks!!!  I am in so much pain it's not even funny.  My right knee is all swollen up again and I can't bend it, my back from midway down all feels ''off" like all the vertebreas are dislocated or something, my legs are still feeling very weak and my fingers and hands are so swollen I can't even make a fist.  Add to that that my brother's girlfriend and her daughter are out (my brother is out west working) so I couldn't really nap or anything because we have a 4 year old and 9 year old upstairs.  And I believe they are staying for supper which really bugs me as I feel horrible, look horrible and was just hoping to ignore it all.

OS Appointment

It was weird going to the clinic today to have my follow-up after the CT scan.  Exactly 9 years earlier I had been there having my second knee operation so it was just kinda strange.  Not too much to report though.  She showed us the report (and gave me a copy to take on thursday to my rheumy) and the scans.  Weird thing is that if you just had the scans and nothing else, you would think I was being seen for my left knee.  On the scans it shows that when my quad's were constricted my right knee subluxed laterally 10% while my left knee subluxed laterally 30%.  Apparently I dont really have a 'grove' for my knee cap to sit in, it's almost like a flat surface and that plus the ligament laxity plus the hypermobility plus 'me' is what causes the problem.  Dad kind of joked at one point that it was too bad we didn't have a good knee to compare it to and she said that no, neither of my knees were good.  So I asked if in reality my left knee was a lot worse off than my right knee she kinda just said well we are going on symptoms for now.  Becasue I go see the top Doctor in two months (which she was shocked about as it usually takes around a year to get in to him) she said she will just leave things and it will be up to Dr. L to decide if I am a surgical candidate and for which procedure.

That's about it, nothing really happened except I have a copy of the report to take to my rheumy on thursday.  It's going to be a busy week!  Had my OS appt today, go to the dentist tomorrow for a very probably nasty infection going on, rheumy on thursday and then my parents are going away for the weekend leaving K with me so that means not much sleep!  At least I have the weekend planned (basically) with things for us to do :)

Knee CT Scan

Okay, I will now write about what actually happened.  Knee is still sore but I manged to get a few decent hours of sleep.

Dad and I left the house at 7:30, stopped at Timmy's and then headed off.  We took the highway this time as dad wanted to give the truck a 'good run'.  We got to the hospital around 9 and headed in.  We almost missed the place where we were supposed to go first as we entered the hospital through a 'staff only' entrance.  We found the registration, they made me up a blue card (they hospital and clinic uses other cards for easier access to files) and told us where to go.  We though we were going the right way but then ended up seeing the ER and figured it wasn't right so we backtracked.  We got to the CT area around 9:10 and I had just sat down and a lady came out to get me.  Dad waited in the waiting area and I went back.

The best news?  No contrast!  So no injections or IV's.  I was so relieved when I realized that.  The bad news? It hurt a lot!  She took the following views:
1) Both legs straight out (realized that it hurts a lot to put my bad knee straight)
2) Both legs bent slightly (less than 45 degrees)
3) Both legs with my toes pointed and thigh muscles constricted
4) Multiple views of my bad leg twisted many different ways to get images of where the knee cap sits (other leg out of shot)
5) Image of my left leg straight out while my right leg was up in the air
6) Image of my right leg straight out while my left leg was up in the air
Those are the basic ones.  #4 hurt a lot but was also interesting.  In order for her to get a picture straight on of my kneecap, I had to have my foot pointing outwards laterally.  I guess that shows so pretty messed up tracking right there.  And that was it.  I was in and out in around 20 minutes!

We got back to the truck and I instantly took a dose of painkillers and advil and we were off again.  We stopped at Timmy's just on the outskirts of town so we could both use the bathroom and then we headed off.  About halfway home I started to feel really really bad.  I got all clammy, felt lightheaded, nauseaus, headache and just so wrong.  When we were about 20 minutes away dad asked if I wanted to get out and maybe stretching my leg might help but I just wanted to get home.  I reclined the seat and just closed my eyes until we got home.

We get home and I still feel just weird.  I felt wired like I couldn't sleep and kept trying to talk to mom but she kept thinking I was done and leaving.  I go upstairs and mom takes one look at me and tells me to go to bed.   I was white as a ghost, sweating badly and just 'jittery'.  It was like my POTS when nuts and didn't know what to do with my body.  I came down to bed but couldn't sleep so I played on my DS for a bit and then finally was able to get a few hours of sleep.  I got up as my parents were going out and K and I just got some pizza and sat on the couch in our jammies and watched 4 hours of 'The Simpsons' (he loves the show, mom hates it so he only gets to really watch it with me so it makes it a nice treat for him.) and chowed down on chocolate lol.  After they got home mom and I watched an episode of 'Buffy The Vampire Slayer' (I bought all the seasons in the fall for us to watch) and then I came down to bed. I checked my email, wrote a small post on here and then headed for bed.  Didn't wake up until shortly after noon today.  Still feeling a bit 'off', still having sweating episodes and still in a lot of pain.  But they are done and I go back to the clinic on March 22nd to find out the results.

Knee CT Scan

Well we survived the trip to get the CT Scan and back.  Thankfully no contrast was used but a lot of knee and leg manipulation went on.  Slept most of this afternoon, 'babysat' K tonight and now going back to bed.  Pain levels are so high that I just want to take my next dose of breakthrough pain killer and get to sleep before it wears off.  Will try to post more tomorrow.

Anesthesiest Consult and Knee Date

First off, I went to see the anesthesiologist (I have no clue whatsoever as how to spell that!) and everything went fine.  Made sure to remind him of the no locals and that was about it.  I have seen this guy before and he remembered the EDS part of my care which was nice.  He said that there should be no problems and it should go just as smoothly as the last one.  I asked if there was anything I could do to get a good vein for that day (heat pads, water etc) but he said nothing could really be done and then asked where my good vein was (I told him, it's on my hand) and he says just make sure to tell them where your best vein is and not let them tell you otherwise (which I learned a long time ago with IV's).

Secondly yesterday I had three pretty nerve wracking calls all within about 15 minutes of each other.

Call # 1 (Knee Clinic -> Me)
I get on the phone and she tells me that they have a date for my Dynamic CT Scan.  I ask her to wait a minute until I get upstairs near the calendar then ask for the date.  It is for this sunday.  The 20th.  The Daytona 500.  Dad's one and only date that he has a bunch of guys over to watch this race.  Not only that but the time they give me is for 1pm.  The race starts at noon.  It takes 1 hour to get there and  1 hour to get back.  All of our hearts just drop.  I ask if that was a cancellation date or if I rescheduled how soon it would be.  She told me to call the imaging department and ask when there next date would be but to not say you need to reschedule until you know when the next date would be.  And then call the clinic back to make a follow-up about 10 days from the scan.

Call #2 (Me -> Hospital)
I get through to the imaging depatrtment and say that I was just called with a date that wasn't going to work.  They knew my name before I even told them lol.  I told them that as we were so far away that we couldn't rearrange things to get there.  She said that was fine and asked me if saturday would be better.  I thought she meant if a saturday date would be better but no, she was asking if this saturday, Feb 19th would work.  I looked at my dad and he nodded (glad that it wouldnt be on sunday lol) and she gave me a choice of 9ish or 2ish.  Well tomorrow (saturday) night they have plans to go out to supper with a bunch of friends so he wanted the 9ish appointment (when my parents are doing the driving they get to pick the times, I would have prefered the later one).  So we get that all planned out and find out where I should be going.

Call #3 (Me ->Knee Clinic)
I call them back and get to a scheduling secretary to make a follow-up appointment with Dr. F.  She tells me that Dr. F is out of the office next week so she had to check.  Well that is when my heart dropped into my stomach as the first two weeks of March I already have 2 doctor's appointments and dental surgery!  Anesthetics and me don't get along too well and it takes me a lot longer to recover from it than the surgery I will be having.  Then the next week is March Break and I am hoping to be able to do some stuff with K.  She comes back on and asks if the 22nd of March will be okay and I gladly took that date!  Ironically, 9 years prior to that date I was at the hospital attached to the clinic for my knee scope.

So that's about it.  This mornings appointment went well, have to get a good nights sleep to get up really early (probably leave here no later than 7:45ish) and see what this test consists of.  I googled the name and haven't found anything.  Apparently it's a "Dynamic CT scan" to see what the inside of my knee is doing when I bend it and to really see the tracking of the knee cap.  I have no clue about contrast and that is what is bothering me right now.  I have put up a message on facebook to see if anyone knows (BTW please no one mention this blog on facebook as I want this to be non-family seeing it, it's my place to vent and I would feel I had to censor myself if family was reading this!)

Stupidity + Stuborness = Bad Night!

As I still can not drive I can only get into town when my mom is wanting to go.  Well we went in today to pick up a few things and check out the cheap valentines stuff on sale ;).  First off we realized that my crutch was in the truck and not the van so we had to go in to the house dad was at (helping a friend doing some renovations) to get the crutch.  We then had to figure out our 'game plan'

First stop - Walmart:  We got there and I didn't take my crutch as I figured I would just push the cart.  Well we did our rounds, I got the few things that I needed and then saw a nice storage ottoman that seemed to be very similar in colour to my couch (or they had black) and I went back and forth about whether I wanted to get it or not.  See I payed off the last of my credit line this month by putting on three times the amount I usually do so was concerned about running short at the end of the month.  Mom then says that she will get a cheque on friday so if I needed she could lend me some then so we figured that it was such a deal that we went in and got the ottoman.  It's nice, a bit darker in colour than the couch and has a nice size compartment to put things in and was on sale for $20 instead of $30.

Second Stop - Bulk Barn: I just had to run in and get some rawhides for the dogs so mom dropped me off right at the door and I went in without my crutch but got in and out pretty quickly.

Third Stop - Harvey's: We got there and I figured I didn't need my crutch here either as we were just going in to eat.  However, I didn't do too much eating as I was tired, in pain and having issues swollowing food.

Fourth Stop - Shoppers: The had nothing in the way of valenties sales so we left and headed to the other Shoppers store.  There I got one box of 1/2 off Lindt chocolate as well as some normal chocolate as it was on sale and a few other small items.

Fifth Stop - Food Basics: I took my crutch into this store as I was getting tired and there were no real close spots.  We needed to get some more of my flavoured water and thought that it was a presidents choice store but it wasn't (I get presidents choice flavoured water that are 0 calories and sweetened with sucralose and not aspertame - which gives me instant migraines.  Unfortunatly the last batch we got at our local store tasted off so we were hoping to get more bottles that didn't have the expirey date the bad batch had.

Sixth Stop - Back in Corunna, Shoppers: Went in because I saw a really pretty like black iron-y butterfly that I had thought would look good above my couch originally.  Then I had a different idea that mom and I think will look very very cool so I wanted to double check that one at shoppers to see if it could go somewhere else but it will be too big anywhere else.

Seventh Stop - No Frills: I took my crutch into this store as well because my leg was getting really sore and tired feeling.  Did some basic shopping done just in time to get to the school to get K.

Now my leg is just killing me!  The pain is all around my knee, front /back, lateral / medial /, top/bottom etc. I am also getting stabbing pain on the lower medial side of my knee and real 'achey' (doesn't seem like a strong enough word for the feeling) all the way from the knee and half way up the thigh on the lateral side.  I have iced it, taken a few doses of pain meds, took some advil but it is still very sore.  Apparently next time I should use the crutch everywhere so I don't stretch or hurt anything :S

My thoughts on my knee appointment

Well this has been a very tricky issue and has completly divided our house up.  As I value my parents opinion (and they will be the ones taking care of me if I have surgery) this has made things difficult.

My Dad:
Thinks I am crazy to even consider surgery again.  As soon as the fellow mentioned surgery and then had to leave the room, dad says to me 'Your not going to go through all of that again are you?', this was before I had even said anything as to what I wanted to do.  He was asking the doctor's what else could be done and the fellow suggested bracing and physio but when the OS came in and looked at the trackin she said that we could try bracing and physio while we waited but made it sound like she doubted it would help.  She and I also discussed how long term bracing is not a solution and is made even more trickier with the EDS.  Dad figures whats the point in having a surgery that may only last 2 years when 6 months of that is recovery?  Well the last one lasted a little over 8 years and recover was about 2 months.  Dad asked for a script for a knee brace and took me right into the brace shop there before we left.  I tried on the two that were suggested and the first one hurt like crazy!  When I said this he got all down looking like I told him we were going to have to chop off one of his arms!  The second one didn't hurt as much so I agreed to try it.  He paid for it while I was getting changed and has been at me to wear it all the time.  Well it also hurts quite a bit and also moves around which is why my old OS figured braces would never do me any good.  Physio hasn't been discussed but I am sure it will come up just before my rheumy appointment.

My Mom:
She is a little more on my side and sees my point of view.  She doesnt want me to have surgery but who really wants to have surgery?  She actually listens to my point of view and agrees that even if I get a few years out of surgery that is a good thing.  However she keeps asking once this surgery is done and fails is there anything else that can be done?  Should I wait until it is absolutly necessary to have this surgery done?  Well I try telling her that the longer the knee is tracking improperly the more damage that is being done, which means the more that will have to be fixed at that later date.  She more understands why I would choose this route, but doesnt like it and would be happy to put it off until my knee gets worse.  At this point I can walk around the house fine, doing the two step method up the stairs but need my crutch or to grip the cart if we go out at all and am still needing pain meds daily and pillows to prop my leg up with.  So it's not like its better, its just that I can get around the house okay and she doesnt notice the pills I take so she thinks its getting better.

K:
He just want's his nini to get better so I can play with him and take him to movies. (I love this kid!)

Me:
This is the tricky one.  I don't want to go into surgery again but I also dont want to live with a messed up knee.  I think what my parents forget about is that I am only 29 years old, to just 'suck it up and live with it' is going to take a lot of years if I live a normal life (knock on wood).  If I was my parents age then no I probably wouldn't go through with it as it's a pretty invasive and risky procedure.  I want my knee to feel better and right now that is the goal.  Because of the bad right knee, my left ankle, and both hips are feeling more pain, also my wrist and shoulder are painful when I use the crutch.  I don't want to sacrifice all those joints just becasue I don't want surgery.  The brace is painful to use, physio has never done me any good and has only made me worse, plus the last time I went to physio for an assesment they said that I had perfect strength and not to push it because having muscles that are too strong is just as bad as having weak muscles (which mom confirmed with her physiotherapist last week and it was also a point in one of the lectures in baltimore).  If Dr F (my old amazing OS) was doing it or suggesting it I would have no problem in going through it.  I dont know my new OS, have never met him. I don't even know if he is going to want to do the sugery!  I just know that the OS I saw there did the one tracking test, ordered a pile of xrays then said she wanted this other test run and that there was one surgery that could be done and that she was sending me to another OS in that clinic.  So all this worrying could be for nothing at all.

OS Appointment Outcome

Well we made it down there and back with no problems, didn't see a single snowflake until about an hour after we got home!  We left real early, went to a few stores, had some lunch then headed to the hospital pretty early for my 2:45 appointment.  We get there and I go to register and they thought I was a new patient.  She pulled up my old file but still had me fill out a new patient questionnaire as it would be easier to get the new information that way.  Dad asks me if I want him to come back into the exam room with him and I very quickly said yes!  I did not want to go through that appointment by myself and want his opinion on things as well.

We get called back and I get to see Dr. K first, he is a fellow working there (it's a teaching hospital).  One of the first things he says is that my doctor has horrible handwriting lol.  He goes all I can read is 'syndrome' and I tell him that it is Ehlers Danlos Syndrome and he says that is what he thought it said.  He didn't even flinch when he read it!  He goes over my history then asks what the problem I was having.  The only thing that bothered me is that he kept referring to when I subluxed my knee, instead of dislocated my knee as the as the 'injury'.  He did a very thourough physical exam even though he was unable to do a few of the tests as I just couldn't relax my knee enough for him to manipulate it.  It is something I do subconsiously to keep the joints in place, I tried my best to relax and was getting so frustrated that my dad even spoke up and told me not to worry and to just relax it as much as I could.  He examined me for a good 10 minutes then had me sit up and asked my to put my arms out which I couldn't figure out.  He then takes my arm and I think 'ah-ha', he was checking the hypermobility in my elbow!  He then asked about the thumb to wrist thing and both dad and I do it no problem.  He just shakes his head and I said you should see what I can do with my knee, he got this confused look so I showed him the hyperextension of my good knee, then laugh and say the right knee isn't that mobile right now.

He then starts in on how I have a very unstable knee which is hard to treat.  He states that there are three things to do 1) Physiotherapy, 2) Bracing and then 3) Surgery.  We go through how physio always seems to make issues worse and that I had seen a PTist last year who told me that all my joints were as strong as needed if not stronger in some.  Bracing was an issue as I tend to dislocate more frequently in certain braces but that I was willing to try another type.  He tried to bring up the xrays I had done at home but the disc wouldn't work so he was going to go try it on another computer and to talk with Dr. F.  They come back in not to long after and Dr. F says she is only going to do one test on me.  She had me sit on the edge of the bed and have my legs hang down.  She put one finger on each side of my knee cap and had me go from sitting (90 degress) to straight out (180 degrees) and immediatly looked up at the fellow and asked if he saw that. Apparently my knee tracks diagonally and not vertically.  She started talking about how she would like to get a 'special test' done to see the inside of my knee while I moved my leg.  She tells me that one doctor there used to do them but she would have to talk to him to find out.  She then tells me that since the xrays I brought didn't work, she wanted to re-do them and get some extra views (they have an zray center right in the building).  We get those done and then go back to the exam room.

Dr. K and Dr. F both came back in and looked at the xrays and said that it didn't look like too much bone damage, it shows osteoarthritis but not as bad as they figured it would be.  She then tells me that there is no easy fix and the extent of damage coupled with the EDS makes it even worse.  She did mention that there is a surgery that they rarely do but might be able to help stabalize the joint.  I think she is talking about a Tibial Tuberosity Transfer.  She said that there are two different braces that might help it but that for my issues I would need to wear it 24/7 and that is a recipe for disaster for an EDSer.  She goes on to tell me that she wants to order a dynamic CT scan of my knee.  Apparently it can get images of the knee in motion so they can see how the 'internal' tracking looks like.  She also is now sending me to a Dr. L who is, I believe, the top knee guy at the clinic.  I will get a phone call about a date for the CT scan, a letter in the mail about my appointment with Dr. L and they gave me a perscription for a knee brace for me to try (they have a store right there as well where you can go in and try them on).  She told me that I could try physio and bracing until the appointment but it didn't really sound as if she thought they would make that much difference.

On our way out we stopped at the store that is right there and I tried on two different braces.  The first had a Y butress that just felt horrible when I put it on.  It was a pull up type of brace that I could already feel slipping when I stood up and felt like it was putting my knee and the worst place it could be.  I tried the second one on and it felt better.  It has an open back as well which is a plus (I used to get cuts in the crease behind my knee from braces) and very adjustable which is good for swelling issues and such.  She even let me go out of the store and try it on a flight of stairs (well I did two stairs lol).  I could feel more stability on the stairs and I will get used to the feeling of it while walking soon.  So we got that one and will have to see about insurance coverage later.

Well that is what all happened.  I will post with my feelings and my parents reaction tomorrow (or in a few days, not sure what this horrid storm is going to bring).  Definitly ready for another dose of pain killers and an ice pack before crawling in bed!!!  My knee is killing me!
Dr's Exam + Massive Storm = Absolute Agony!

Knee Saga - Part Three

This all happened in the span of about a month, a really really bad month - November 2004.  This will be in point form as I am getting the details off of my old blog instead of going into all the crap again.

Oct 22nd - Find out Dr. F will not be doing the surgery, it will be Dr. G, decide to make an appointment to see Dr. G before he operates on me.

Nov 9th - Appointment with Dr. G, decides that he doesnt think the surgery is needed and that my issues are the tendon and not the bursa.  Tells me he will get me in within the week for an emergent MRI and that I might have surgery in 3 - 4 weeks to repair the tendon.

Nov 13th - Find out Dr. G didn't write a referal for an urgent MRI, just to have one within 3 - 4 weeks, even though he told me surgery would be in 3 - 4 weeks.  Had to call around to the receptionist and MRI place to get anything figured out as I was going away for the weekend and wanted things figured out. Told me to call first thing on the monday as they had openings next week.

Nov 15th - Find out that Dr. G has to call MRI place to get an urgent MRI as he had not marked the request as a pre-surgical MRI.  Get a lot of attitude from Dr. G's secretary

Nov 16th - Scheudled surgery date.

Nov 18th - MRI date scheduled - decided that I do not go to major doctor appointments alone anymore as they do not take me seriously.

Nov 19th - Went to get painkillers from my GP to take during the MRI, got tylenol based pills which because of my allergy, the pharmacy could not fill.

Nov 21st - MRI done

Nov 22nd - Told I have an appointment in a week to see Dr. G, get mad at that as he wanted an urgent MRI but wants me to wait a week for an appointment.  Receptionist tells me that they got me in within a week for the MRI so I shouldn't complain and then another secretary tells me 'This is why Dr. G likes to see new patients before operating on them' to which I told them that I was the one who wanted the appointment.

Nov 31st - Follow-up appointment with Dr. G.  Says I harrassed his secretary (I called twice), told the MRI department he was a liar (he basically was), refused to let me speak and when I did get a chance to talk and state that I trust Dr. F so why was he saying that Dr. F was wrong and he accused me of manipulating him, that I should be lucky the surgery just wasn't cancelled instead of getting transfered to a new OS, he told me surgery was not needed and walked out of the room.  My dad was able to ask two questions.  1) What is the visible lump on my knee (yup it's bursitis) and 2) What treatment we should be seeking (he would send us a list of alternate OS's).

It took my GP months to get a copy of the actual MRI report that stated that I had bursitis and a tear in my patellar tendon.  This was just a very bad time as I had planned on going back to school for a fifth year (I graduated in April of '04, was going back for a second degree but ended up having to stop because of health issues), had put off looking for a job, had moved back home to have it done and just put my life on hold to have this surgery done.  Then I got an arrogant jackass of an OS who made my life hell for a month!

That is about all I want to write about this part of my saga.  It was a very bad time and I got very depressed becasue of it.

Knee Saga - Part Two

These were the 'good' years *sigh* This will be from summer of 2001 until the fall of 2004.

This continues basically exactly where part one left off.  I was doing physio during the summer and mentioning how frustrated I was getting and one of the physiotherapists suggested I contact this clinic that was in the teaching hospital about an hour away from here (from here on out it will be mentioned as the 3FK).  This place will see you even without a doctor's referal.  It is a teaching hospital so generaly you go and see the bottom run of doctors, they asses you and then determine if you area a surgical cause or if things can be done and sent to the next level of doctors.  Finally, you get to the orthapedic surgeon (OS) to discuss your problems.  This first time through I saw the first level doctor and got sent straight up to the leading surgeon of 3FK (the place is named by him, he brought the scope to Canada), instead of having going through the second phase, I just went straight to the head surgeon.

I believe it wasn't until around November that I saw Dr F for the first time.  He did a very in depth physical and kept pointing things out to the student in the room.  I was wearing a sweatshirt from the University I attended and it just so happened that the clinic was on the campus of our rival University.  He was always making jokes about that, like that I seemed so smart, why did  I go to 'my university'.  He would always have to check my chart to see my history but could always remember the school I went to. During the first visit we even found out that the doctor who did my dad's neck fusions actually trained under Dr. F so that really put us all at ease.  He did the physical, ordered xrays (they have an xray clinic right there to do them) and declared that a Lateral Release was the absolute worse thing that could have been done as it made my knee more unstable both medially and laterally instead of just laterally like it was before surgery.  He definitly wanted to do surgery but he wasn't sure what he would be doing until he got in and saw the knee so he booked surgery for the spring and we would have a consultation shortly after that.

I had the first surgery on March 22nd, 2002.  Dr Fowler was great, and the hospital was much nicer and more compassionate than our local one.  My parents were allowed to stay with me up until 30 minutes before the operation.  They let us stay just outside the pre-op room until I had to be taken in and prepared for it.  I will always remember that for this operation I had to go to the bathroom constantly!  The nurses were even joking about it with me.  Everything went according to plan and we found out later that just a basic scope with some debridment was done.  When I was coming round I was shocked as they allowed family into the post-op area to be there while you were waking up. As it was just a basic surgery there wasn't much to do post-op as I already had crutches, was shown proper crutch use pre-op (they had physiotherapy students come to patients pre-op to discuss the use of crutches) and was not wearing any type of brace, just had a few steri-strips covering the 2 small holes that were made.  There was to be no discharge instructions as the gave me a few painkillers in case I needed them ( I didn't after the first night) and I didn't have to go to physiotherapy for anything.  I was drugged up really well and sent on my way 'home'.  I was living at my aunt's house while going to University so my mom and dad came for the weekend and then dad had to go home to work but mom stayed with me for the following week to get me too and from school and just help me out as my aunt was away on vacation that week.

We had the follow-up appointment that was very short and simple.  He could dislocate my right knee both laterally and medially with just his pinkie applying minimal pressure.  What surprised him was that he could also dislocate my LEFT knee medially and laterally with just slightly more pressure.  I told him that Dr. S wanted to do both knees at once and he just gave me a look and told me it was good that I didn't and that he had never heard of an OS doing fairly major surgery on both knees at the same time unless absolutly necessary!  He told us that another surgery was necessary and although it would help, it would only get my back to the place I was before all the operations were done.  At that point that sounded great to me.  So we scheduled another operation.  I gave him some 'suggestions' as to when it would be best to be done (IE after the first of may and with enough time left of summer that I could recover) so I wouldn't hvae to miss out on any school which he was more than fine with and agreed.  We got a call shortly after stating that my surgery date would be June 13th.

We get there on the 13th pretty confident as we already knew all the procedures with this hospital. One thing that I remember the most is that we were done in a room in the basement waiting for staff to show up (they did mine first in the morning as they knew we were traveling) and the phone rang so dad picked it up and gave the person on the other end instructions on how to get there!!  Mom and I were just mortified!  Just after he hung up a nurse came in and all three of us just started laughing.  Anyways, they get me set up in the pre-op area, had the pysiotherapist come down to go over crutches and the braces I would have.  The nurses recognized me from last time and one came over to apologize!  Apparently the last time I had to go to the bathroom so much was becasue they had the IV full open instead of dripping!  They realized it after everything had been disconnected.  Again nothing big happened, my parents were allowed to stay in the pre-op room then I was taken in.  I find out later that my parents had gone down to the cafeteria to get some coffee (they didn't drink anything in front of me because it didn't seem fair) and ran in to Dr. F getting some breakfast!  Dad and Dr. F got along really well so they exchanged a few jokes then dad told him to get going so we could go home soon lol. 

I woke up in the post-op area and Dr. F was there talking to another patient.  He came over to me and asked how I was doing and I said that it hurt.  I will never forget this!  His reply?  "It will stop hurting when the pain goes away".  Said all seriously and I took it seriously and thought it made sense, until the drugs left my system lol.  This surgery was a lot different than the last and we had a lot more to discuss in the post-op area before we could go home.  I found out that he performed a Lateral Repair, which basically just undid the Lateral Release that was done previously.  I was in an immobolizer (that looked something like that picture) completely with blood stains on it as it is put on right after surgery, still in the operating room.  I was given a perscription for pain medications, follow-up appointment dates and they talked a lot to my parents.  I was in a great deal of pain so they loaded me up with pain killers and let us go home.  It was an hour drive home and I honestly don't even remember how we got home. I know we took the van so I could stretch out but I was basically gone.  We got home and my parents had rearranged things so that our pull-out couch was brought upstairs for me to sleep on (I have a waterbed and was in the basemenet, my parents wanted me closer) so I crawled into the bed and fell asleep.

The next day was pure hell!!  My parents were giving me pain killers every 4 hours, took turns sleeping on the recliner in the living room with me and kept ice on it.  About a week later I was getting really itchy and just 'yucky' with the immoblizer and was supposed to go back to the city (an hour away) just to get the stitches cut!  My dad called and talked with the receptionist first and asked if he could do the stitches himself.  She didn't know about that so had Dr. F call dad back later.  Dad explained that he had taken many first aid and first responder courses through his job and that he felt confident just snipping the stitches and that I was okay with letting him do so.  Dr. F agreed that it was silly to drive an hour to have something so simple done and gave dad the go ahead to take the immobolizer off, clean the skin and do the stitches.  Dad took me in the back in the sun (I hadn't been outside since the surgery) and very carefully cut the stiches so they could work their way out, cleaned all the iodine off my skin (the reason it was done outside is that he cleaned it with rubbing alcohol, the pure stuff, not the stuff in drugstores!) and just let my leg get some air.

We went back to the clinic to get it looked at and I was then allowed to move into my post-op brace. I was to keep it at around 30 degrees for 4 weeks and then move to 90 degrees for 4 weeks then I could be out of it.  Well ROM was never a problem.  As soon as I got the brace allowing for 30 degrees, I was bending my leg 30 degress, same with the 90.  I was given the option at the end of an extra two weeks in the brace without crutches, or two weeks without the brace with crutches.  I took the crutches!! The brace was very uncomfortable and kept slipping down my leg making it even worse.  Eventually everthing healed up pretty good and we were all very happy with the results.  I was back at school in September with no crutches and could get around as well as everyone else.  I did have to stay in physio for a good long time but it wasn't too bad.

Well my knee didn't like being 'good'.  Around the fall of 2003 I developed both Tendonitis and Bursitits in my right knee.  I did physio, wore a knee strap and tried everything.  Went back to Dr. F and he did a cortisone shot in the tendon and that helped a bit but I did have a small reaction to it.  Eventually it was decided that I would need a fourth operation, a bursectomy.  It was a very uncommon procedure, there was no guarantee that it would work but it was something he thought might help which was all I needed to hear.  However, life got in the way...

Knee Saga - Part One

I will start this where the official treatment and such starts.  I was in grade 9 (fall 1995) when I first went to my family doctor about my knee hurting.  It felt unstable, weak and significant pain while doing gym.  He sent me to my first orthopedic surgeon (more on him later) Dr. S.  He looked at it, played around with it and diagnosed me with 'chondromalacia patella'. He decided that as a treatment I should be going to physiotherapy for the issue and that is what would help the knee.  I also got a note to get out of gym class for the rest of the semester as the sports we were doing would be too hard on my knee.  I went to physiotherapy for around three months.  After this time it seemed to be better so I was discharged with positive reports from the physiotherapist and the orthopedic surgeon.

Fast forward 4 years later (spring 2000) to the next stop on our knee journey.  I was having the same issues as before so my GP sent me to physio and wrote me a letter for school so I would get an elevator key so I did not have to use the stairs (the school was 3 stories and I had my locker on the second floor, lunchroom on the first and most classes on the first or third floor).  At the end of the year we asked my GP to send me back to Dr. S to look at my knee.   This was probably one of the biggest mistakes of my life!  Also, what dad and I remember about the story is nowhere near the same as Dr. S's reports back to my family doctor.

What really happened:

Dad and I went to see Dr. S in July.  He did a physical exam, asked about my symptoms and we talked about the physiotherapy.  He stated that my knees were not tracking (Patellofemoral Syndrome) properly and surgery would probably be likely to get the knee cap to become aligned again in the groove.  He wanted to start me on medications (NSAIDS) for a month and see where we were at.  Well I was heading to my first year of university around the beginning of september so that wasn't really going to work.  Dad asked if there was something else we could try first and then try the medication route if needed in the future.  He agreed to that and went about setting me up for a surgery date for him to perform a lateral release as he felt that would be our only option.  At first he wanted to do both knees simultaniously but with my starting school shortly dad and I felt that that would not be a good idea so we picked my worst knee (the right) to do first and then once it was healed up we would proced with the other knee the following summer.

Surgery was done the first week of August and seemed to go well.  Dr. S mentioned that my knees were very unstable (he could dislocate the knee easily) but that everything went perfectly and I should have no problems.  After about three weeks of physiotherapy I was off to university and ready to go.  However my knee wasn't so happy.  I had to take a few friday's off first semester to go home and get Dr. S to look at my knee.  He kept telling me "Once you can life 'x' pounds in a straight leg raise you will be great".  Well 'x' kept getting bigger with each appointment and I was getting pretty frustrated.  I had to apply at the special needs office at my school to get a parking permit (not handicap yet, just so that I would be able to park on campus and not on the roads surronding it).  Around the end of second semester I went to see him and he decided that he was going to do a cortisone injection in it.  As exams were coming up I asked that we do it at a later date.  I had a week off between exams so I made a special trip home to get the shot.  When I get there however, he decides that he does not want to do a cortisone shot in someone so young (19 at the time) and thinks I should go back into physiotherapy and that we would re-evaluate my knee at the end of the summer. Well, it's kind of hard to go the summer doing something you know won't help only to be told just before going back to school, that another operation may be needed.  That was the last appointment that I ever had with that surgeon about my knee.

What we found out after:

For some reason, it was not until I went to see another orthopedic surgeon, did I even think to look at the reports that Dr. S had wrote up for my GP.  Here are a list of the things that we found out:

• Dad and I 'forced' him into doing surgery before trying conservative therapy
• During surgery they found bone fragments that had to be sent to pathology
• The surgery report stated that another, more involved, tracking surgery would most likely be needed
• After every office visit to him he states that he discharged me from his practice
• Each report stated basically that I was back 'again' complaining about my knee
• I tried to pressure him into giving me a cortisone injection, which he refused based on age
• That I was not following his physiotherapy plan

And a bunch more but those are the ones that really stick in my head the most.  My parents and I (as well as my GP) were very upest about these reports and that basically he saw a hard case and once he tried waving his magic scalpel at my knee and it didn't heal perfectly, that I was doing something wrong to sabatoge it.  We did actually think of a malpractice suit but decided that it just wasn't worth it. I continued doing physio through the summer and then we took the next step in the knee saga.....

(Coming soon)