Monday, February 28, 2011

Blog Layout

I am going to do a blog roll of other EDSer blogs but just not sure where I want it placed. 
I am thinking of either down the left side or create a seperate 'page' for it so it's in the tabs at the top. 
If anyone has suggestions or comments in general about the layour or colours let me know!

Got a date!

I got a letter in the mail yesterday (well it was picked up yesterday) from the clinic that I go to for my knee.  I jokingly asked if people wanted to take bets on what month my appointment would be in.  I opened it up and was pretty shocked, the appointment date is...... May 11th.   Brother and his GF were here at the time and remarked that it was a long wait to get in but for the quality of care at that clinic I don't mind the wait at all!  I would rather wait a few months and get top-notch quality of care than play russion roulette at getting a doctor to treat me quicker!  It will make the next few months quite busy though!!  Mom has been joking that all we do is go to dr's appointments, which this february and march seem like it! 

For March:
1st - Family Doctor to get okayed for surgery
1st - Pre-op appointment to get okayed for and ready for surgery
3rd - Appt with Rheumy - deciding about asking him about something (more on that later) but just routine
9th - Dental Surgery
??? - Follow up appointment for dental surgery
22nd - Current OS appointment at the clinic to go over CT Scan

Sometime in March or early April I also need to get to my internist to talk to her about a few different options.  I think one of my autonomic dysfunction meds needs to be changed but we arent 100% sure which one (and what makes it even harder is she handles one of the meds and my GP handles another). Plus want to ask her about the thing I am wondering about (more on that later).  I have to go get ready for a meeting at K's school.

Friday, February 25, 2011

Kinda ticked off

This isn't really important but it is bugging me so I figure a good vent should get it out of my system so I can move on from it.  I have already wrote that my dad is not in favour of me having more surgery on my knee (we don't even know if it will be suggested yet) and really wants me to go the bracing and physio route.  He had the OS at the clinic write me up a perscription for one and had me go right then and there to their small orthopedic store to try some on. Here is where the annoyance comes in:

Before even entering the store I told my dad that I didn't think it would be covered through ODSP as I would have to submit a claim first and then see if and what would be covered.  We went in and the first brace was horrible.  When I said this my dad's face just dropped as if I had told him the most disappointing news in the world.  It was and felt horrible!  The second brace didn't feel to bad and I walked around and tried it on and when I said it wasn't too bad and that it might help dad perked up big time.  I took it off and went to get changed.  When I come back into the store I find that my dad has bought it and when I made mention of this fact he said "Don't worry about it, it's worth it if it might help".

On the way home I come to find out (while going through the stack of papers that we left with) that the brace that was bought cost $120!!  Now if I had of known that fact I would never have agreed to it. First off that amount is just ridiculus and I could have gone online to get it cheaper. Second I have very very little faith that it will help and fear it is just going to do more harm to my knee.  Third I just can't afford that!  We get home and I have worn it around a few times and it hurts like hell.  I should have known better I guess and not even tried that route as I knew the likelyhood of it helping was very small.  What really pisses me off is when mom asks if I have put it through ODSP yet as dad was getting low on money so mom paid him back for the brace and wanted to know when I would find out and be able to pay her back!  I was just stunned!  So the other day I got in touch with my caseworker as I had a pile of questions to ask her and I asked about the brace and she said that nothing could be done about it because I didn't submit to a pre-approval type of thing and that I paid out of pocket right up front for it.  So I tell mom this and she tells me not to worry and that I can pay her back just small amounts at a time (plus I owe her half of the $120 vet visit from when she stepped on and hurt my dog which I am also not too pleased about). 

So to sum it up:
  • I only got the stupid thing because my dad wanted me to try it
  • Even the doctor (not the fellow, the dr) told us that it was something that we could try but would not be a long term solution
  • I told him that I was pretty sure that you had to submit an estimate first before ODSP would cover it
  • Dad didn't even tell me the price and let me make a decision
  • Dad bought the brace while I was not even in the room so I have no clue about if there is anything like a return policy or the like
  • When I asked about him getting it I was told 'Don't worry about it' which lead me to assume he knew I was short on money and could not afford a brace like that and that he was going to buy it for me
  • I hate that brace so much as it hurts so bad and makes things hurt so much worse
  • When I asked dad if they had a return policy he says he doesn't know and 'isn't the brace helping?'! Hello have you seen my wear it? When I do the pain is horrible and I am laid up all night so I barely wear it.
Okay, vent over.  I am just really annoyed with my dad as I feel he lead me on as I would have never paid $120 for a brace that I knew would most likely not work.  And now the good feeling of my paying of one chunk of debt is gone because I now owe my mom $180 (which is a lot considering the amount I get per month for ODSP)

Sunday, February 20, 2011

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.

Saturday, February 19, 2011

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.

Friday, February 18, 2011

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!)

Wednesday, February 16, 2011

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

Sunday, February 13, 2011

Weird and scarey event

Today was odd.  Stupidly I had a nice relaxing bath last night.  Why stupid?  Well first of all it made my knee swell up and actually getting out of the tub was like watching a circus act, secondly for some reason my body hates baths.  I have to shower instead now.  I get out of the tub and absolutely everything hurts.  Even if it didn't hurt before the bath, it hurts after the bath.  Oh and epsom salts just magnify that pain for some reason.  So I had my late night bath, stayed up a bit on the computer than actually went to bed at an early time for me.

I get up this afternoon (lovely sleep patterns from the dysautonomia and chronic fatigue syndrome) and feel okay.  Go to the bathroom, do a few things on the computer than I was going to go upstairs as my brother, his girlfriend and her daughter (J) were out and we were 'doing' valentines today.  Well I first go into the bathroom to make sure I am mostly presentable, go to the bathroom and when I went to stand up I ended up slamming myself into the wall (thankfully I have a tiny bathroom so no injuries).  I didn't think much of it but then I went upstairs, gave J her valentine, said hi to them and went to ask mom about Shaggy's pill.  She stops me instantly and asks why I am shaking so much.  I look down and my hands are shaking like crazy!  Mom tells me to come and sit down, she checks if I am fevered and asks me what is causing it and I have no clue.  A few moments later I break out in the sweats that I thought we had under control with medications.  I was drenched in no time and still shaking like crazy!

She took them home and when she came back she had me drink one of my electrolyte mixes and just stay quiet for a while.  This evening the sweats have mostly stopped, my hands aren't shaking but I still just feel 'off'.  Mom uttered the dreaded 'maybe the medications aren't working anymore' but I don't think that is the problem as this came on very suddenly with no warning signs at all.  Figure I will just lay low for a few days and hope it all just goes away.

Saturday, February 12, 2011

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.

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

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.

Tuesday, February 8, 2011

My Furbaby

Well I know that I still haven't posted about my thoughts to the appointment I had last week, but something more important (at least to me) has come up.  My dog has an injury that has taken my attention away from my pain and more focused on keeping him okay.  First off I should breifly tell you about my furbaby (if you don't know, lots of people who can't or don't want to have kids for medical reasons usually call their pets their furbabies as they really are children to us).

I got Shaggy when he was 9 months old back in April of 2006, he is my first dog (we have had family dog's but Shaggy is my dog, even though he is treated as a family dog).  I was told that he was a Lhaso-Apso & Terrier mix which we could never figure out as he had no terrier traits.  After some looking around I did actually find out that he is most likely a Tibetan Terrier crossed with Lhaso-Apso.  Unfortunatly it didn't take us too long to realize that he was most likely abused by the oldest male in the family as he has many phobias and things that he is scared of.  My family and I have worked very hard with him and have got his phobia's down to a few manageable ones and turned him into a true family dog.  Shaggy has been my protector from day one.  He seemed to 'get me' instantly and step in to be my guard dog.  The first time I dislocated my wrist after I got him, my dad came over to wrap it up with an ace bandage and Shaggy got in the way and wouldn't let him near me, or if I was hurt he wouldn't let K get up on the couch with me.  He is also very very protective of me and keeps bigger dogs away from me and will stop any play fighting instantly as he gets so worked up wanting to protect me.  Thankfully he does not have many heatlh problems, he gets ear infections if I don't keep his ears clean, he has seasonal allergies and has dry skin.  All in all pretty healthy, except he could do to lose 5lbs (even though he hasn't gained any weight in 3 years).  This isn't Shaggy but it's a picture of what he looks like.  So on to the story:

Sunday night my mom came in to the living room and went to step over Shaggy, Shaggy for some reason moved and mom ended up stepping on his leg partially and almost tripping over him.  He let out a horrible yelp and ran away from her.  I quickly jumped up and went over to him and he just 'fell' right into me.  Now he isn't an overly cuddly dog so this was odd for him.  He let me and mom both feel his leg to see if we could feel any breaks and to try and figure out where he was hurt.  After about 10 minutes of this he had had enough and he bit my mom and drew blood.  My dad came up to look at him and we all realized he was barely putting any weight through his right leg.  As it was late we figured it would just be best to take him down to bed and let him get a good's night rest and see how he was doing the next day.  Dad carried him downstairs to my room and I rearranged some things to make it easier for him, got him some water and a few treats.  I even got down on the floor with him so he had someone near by.  Once I got to go to bed he wanted up on the bed with me and he stayed there the entire night (He never sleeps on my bed for any length of time as it's a water bed and he gets too hot).

I woke up when I felt him moving around so got up and helped him off the bed.  He took two steps and then layed back down.  I called my parents down and mom came down to see him and then called dad down.  This was when I just about wanted to throttle my dad.  Mom asked him if we should take him to the vet and he goes "Yeah, if you have a few thousand dollars to fix him"!!! So not impressed!!!  It was still to early to call the vet and mom had to get K off to school.  I was crying for a bit about what dad said and seeing my dog in so much pain and I just layed down beside him and petted him for a while.  I tried everything to get him to walk: 5 different types of dog treats, a cheese slice, a piece from a block of cheese, and nothing worked.  We wanted to get him up so we could see what was going on as he would not let anyone even attempt to pick him up.  Dad left to do some shopping (wasn't impressed about that either as Shaggy is a heavy dog that I can not pick up) and mom and I finally got him moving when she asked if he wanted to go for a walk.  He got up and we carried him up the half flight of stairs to go out into the front yard where he did his business and limped around a bit, he seemed to like the cold.  He was only 3 legging it and not putting any weight through the hurt leg so mom decided to call the vet and they told us that we could come and bring him in at any time.  So we packed him up and we were off.

Got to the vet and they managed to weight him.  He was very very nervous and even drooling and shaking.  Got into the back room and they took his temperature and the tech did the history and asked what happened.  The vet came in and because mom said that he had bit her the vet wanted a muzzle on him.  Well remember how I said we think he was abused?  He is terrified of a muzzle!  She got one on him that was too big so had to go get a smaller one.  As she was trying to put this one on he burried his head in my arm and was literally having a panic attack.  I must have been close to tears and told both of them (the vet and mom) to stop and just let him calm down for a minute and I just held him and talked to him.  She eventually got the muzzle on and examined his leg.  She said that she didn't feel any obvious fractures and that she thought it was in the paw / wrist area.  She said we could go and get xrays done as it might be a hairline fracture buat at $180 for them we decided to watch him for a few days first.  She did give us some doggy anti-inflamatories for him to take and we wer off ($120 later!  Mom paid for it and I told her I would pay her back next month but she felt guilty that she caused it so we agreed on 50-50ing it).

Got home, he took the pill instantly (apparently they are beef and chewables) and I kept him resting in my room downstairs.  They are miracle pills as he is doing so much better now (2 pills in) which is such a relief!  He is still limping but he is putting weight through it, he 'trips' occasionally when he puts weight through it but is doing really well.  The neat thing to watch is how our other dog (Tazzy - 1.5 year old 'jug'-jack russel and pug) is acting near him.  When I brought Shaggy upstairs last night it was the first time Tazzy got to see Shaggy since he got hurt.  Tazzy went right up to him and started nuzzling in his ears which Shags loves!  He was just so gentle with him, no fighting, no barking, no biting, no begging for baths etc.  He stayed near Shaggy but was very quiet and gentle with him.  He is now two days in, starting to be more playfull but it is easy to get him settled down.

So that is where I have been, I have been looking after the person who looks after me.  It nearly broke my heart that first night / next morning looking in his eyes as they were so sad. Thankfully he has a happy look in his eyes now.

Wednesday, February 2, 2011

OS Appointment feelings

Well I had wrote that I would write tonight about all the different feelings in the house about how the appointment with the orthopedic surgeons went.  Well, I honestly don't even know how I feel right now.  Have had a bad day pain wise and emotion wise just going over what the dr's said again and again.  Just a lot on my mind tonight.  I will update in a few days.

Tuesday, February 1, 2011

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!