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.

Tuesday, March 13, 2012

Journey to Becoming a Zebra - Part One

As this is my 100th post I deceided to do something special for the post.  I realized that I never wrote about how I was diagnosed.  It was a bit of a struggle but not as bad as some people.  I am going to split this into three parts - "Before EDS", "Getting the EDS Diagnosis" and "Post Diagnosis".

Before EDS

It all started on a late winter night, literally.  I was due to be born on March 17th, however I apparently could not wait and I was born at 29 weeks on December 27th (which is kinda creepy as the family has a strong 27th theme with birthdays - will post that another time).  My dad's side of the family had left earlier in the day to go home as they were down to our place that Christmas.  Mom ended up having spotting and then her water broke. My parents were very worried as they never thought that they would be able to have children (and adopted my brother 9 years previous) and mom had suffered a miscarrige.  My parents got their friend (close friend, my brother and their son grew up together) to come and stay with my brother and rushed to the hospital.  We live about an hour from the nearest Children's hospital with a NICU but one my mom got to our hospital the doctor's realized that even though they wished they could send my mom by ambulance to the Children's hospital, they knew that there just wasn't going to be enough time to do so safely and I would have been born in the back of the ambulance which was even more risky.  The doctor's instantly took my mom to have a c-section and a special neo-natal ambulance with incubator and all the needed tools was dispatched to our hospital to wait for me.  I was born at 11:46pm and weighed only 2 lbs 8 oz.  The doctors were doubtfull that I would survive and my mom was never even allowed to really see me before the sent me off to the children's hospital.  My dad was distraught (and had only been sober for a year and a half) and did not know what to do but ended up staying with my mom (and brother) to wait for news from the other hospital.  My nan and poppa on my dad's side found out what happened when they called to tell my parents that they got home safely and when they heard the news they immediatly packed up and came back down.  That was it for that night.

Over the next week or so my dad finally got down to see me and was able to hold my entire body just in his hand.  Of course living an hour away and having a son at home, and my mom being in the hospital still (recovering from the c-section and shock) they had to rely a lot on the nurses in the NICU for updates.  It scared them when they would call down and the nurse would tell them that I only had 6 apnea attacks that night, dad would ask what an apnea attack was and the nurse non-chalantly told him that it meant I had stopped breathing!  It also took a good few days before I had a name and the NICU nurses told my parents that they needed a name so they could talk to me.  I dropped down to under 2lbs that first week but amazingly survived with very very few health problems.  The doctors were all shocked that at 29 weeks I was born with fingernails and hair.  They did many many tests but could never find out why I was premature.  I was moved to our hometown hospital after about a month and finally released home on February 5th to very scared parents lol.  More and more tests were done with still no reason for me being a micro-preemie.  My parents had thought about having another child soon after me so I would have someone close in age to me since there was such a age difference between my brother and I.  The doctors told them that it was definitly not advisable as they had no clue why I was so early and couldn't do anything to prevent it happening again, which was also likely.

As a toddler, my parents had to stop me from walking.  I had to get special shoes with a lot of support and was put in a 'jolly jumper' to help build up muscle.  Doctor's were still confused over me as even being so early, I was hitting all of my developement milestones on time (preemie's should hit their milestones according to their due date, not their birthdate - at least that was done 30 years ago).  Once I was getting mobile the doctor's sent me to the 'rotary center'.  It was a place in town that dealt with all types of disabilities and developement problems (ironicly my nephew ened up at the same center 20 years later).  My dad was very hesitant about it as he was very very protective of me.  As fate would have it though the first appointment they took me to, the receptionist was a long-time friend that dad didn't even know worked there who assured my dad that I was in the best hands possible.  Obviously I do not remember any of this but I stayed with the center for a significant time (walking through to kindergarten).  I was done there when they did pre-school testing to determine if I was 'ready' to start school (because of my birthdate I could start at 4 or 5), they deemed it was better for me to go to school early as I was intellectually ready but socially immature - which would just get worse not being in school.

I had the normal childhood issues growing up but times ten.  I had my tonsils and adenoids out, tubes in my ears (twice), a concussion and bilateral pneumonia so I was in the hospital quite a bit when I was younger, like up until the age of 8.  I did have chronic sinus infection so was on a pile of antibiotics and did miss quite a bit of school all the way through high school (and still have at least two infections during the colder months). It just seemed like I had a weakened immune system, which the doctors always just associated with the prematurity. I had to be formula feed as a baby because I was lactose intolerant so that was used as a reason too.  One thing that was quite clear though was that I was a massive klutz!  Sports were just torture for me as I was always twisting my ankles or falling over.  The only 'sport' I did was swimming lessons, and that was mainly because we had a swimming pool in the backyard and my parents wanted to make sure that I could swim and handle myself in water.

Things did start to change in high school, which is typical for EDSers as hormone changes really affect us.  I remember being 'diagnosed' with tendonitis in my right hand in grade 9, sent to physio for my knee in grade 9 and just more minor injuries.  I also started right back up with the sinus infections and would get run down really easy.  In my school not all subjects had mandatory finals.  If your mark was below a certain grade, or if you missed 10 or more classes a term you would have to write the final.  I had to write every final that was given in high school.  I also suffered with really bad acne all through school and in grade 12 or OAC (Ontario Academic Credit - grade 13 if you wanted to go to university, college and university is quite different in Canada unlike the US) was re-diagnsed with asthma and chronic sinusitis. 

However it was in my last year that things started getting iffy.  I was suffering with more and more joint pain (wrists, knees and one ankle) and more infections.  First semester of my last year I was sent back to the physiotherapist for treatment on my right knee.  And after there was no improvement (and slightly making it worse) I was refered to an Orthatpedic Surgeon.  I was able to get in to see him near the end of the year and after a very breif appointment he decided that he knew what the problem was and that surgery would fix it.  So I was set up for a surgery date of early August.  This was scarey as I was due to start university 2.5 hours away at the beginning of September.  It also ended up being the worst decision of my life!

What happened after surgery was ....... Part Two ;)