Tuesday, March 20, 2012

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.

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