Tuesday, August 17, 2010

Balancing Act

Well, it's been 2 weeks since my liberation procedure and I don't feel that much different, although I am noticing some subtle changes, especially in my balance.  What's weird about my balance is that I seem to be more inclined to be off-balance than before?? but I also seem to be better able to balance myself when I try.  I know, it sounds a bit confusing...I'll try to explain...

When I am walking around the house, I seem to be more off balance.  Now... is that because I am walking more quickly, or because I seem to be taking longer, smoother strides than before and this somehow tests my balance more??  At any rate, I seem to be catching myself a bit more often.   The strange thing is, that when I do catch myself losing my balance, if I try, I can hold the balance better!?  For example...I was turning from the sink in the washroom to go out the door, and as I was turning, I noticed that I was starting to tilt a bit as I stepped forward.  As I teetered on one foot, I managed to hold myself upright for a few seconds before placing my other foot on the ground.  I have not been able to do that for the past year and a half.  I also noticed this morning, as I was putting on shorts, that I can stand on one foot fractionally longer than I previously could.

So, I thought to myself, "Hmmm...wonder if I should try the heel-to-toe test?".  Down to the hallway I go.  And very slowly and carefully I place one foot in front of the other.  I wobbled a bit, had to put my hand out to the wall once or twice, but instead of looking like I was on a tight rope, it now looked like I was walking along a balance beam.  Am I imagining it?...I don't think so. 

I don't understand how I am able to do that test better, as the numbness in my hands and feet has not changed and the numbness is a huge factor in my propioception or lack thereof.  I probably shouldn't over-analyze it...as I often do...and just accept that maybe, just maybe, I AM improving.  Wonder of wonders!

Tuesday, August 10, 2010

Keeping the Faith

It has been exactly one week since I had my balloon angioplasty and I have been a bit reluctant to post this blog because it isn't full of all the wondrous improvements I'd like to report.  But since I'm doing this as an accounting of everything (good and bad) .......

I'm afraid I may have done something that I shouldn't have.  On Sunday I took a gondola to the top of the Zugspitze (tallest mountain in Germany at 2622m).  I knew this was not a good idea as soon as I felt the pressure in my ears increase as we ascended the peak.  I didn't feel too bad while we were walking around on the top of the mountain, but as we were preparing to take another gondola ride down, the left side of my neck started to feel funny and I was having some difficulty breathing.   This scared me!  What if the change in pressure caused my newly opened vein to close up again???  Needless to say I was not a happy camper the rest of the day....actually I have worried about it ever since! 

There have been no improvements since and I would say that I have backslid a bit.  Am I just imagining that because of the gondola ride??? All I know is that I will now always be wondering if I've done something to my veins, and I'm trying to come to terms with that. 

As much as I enjoy being in Germany, I am ready to come home, where I won't have to face the gastronomical challenges that have plagued me and I can go back to my familiar routine.  OK, I also really, really miss my dog, Tucker!

I truly hope that once I am back at home and can concentrate on doing everything I need to do to help myself heal, that I will see improvements in my symptoms.  I need to stay positive.

Friday, August 6, 2010

Post Liberation Day 2 and 3

Day 2

We are leaving today for Garmisch-Partenkirchen.  I don't feel any different than I did yesterday, but was surprised that the 3 glasses of red wine I drank last night did not have my legs doing their 'spasm dance', which is what usually happens when I consume something with sugar in it...bonus!

Walking the 500m or so from the hotel to the train station was MUCH, MUCH  easier today then it was when we arrived...and I walked it without feeling like I needed to hold onto Brad's arm.  We had 2 1/2 hours to spare, so we decided to walk around the station for 1/2 hour  before we stopped to have lunch.  I wanted to make sure that the track the train was arriving on was the same, so we watched the big timetable board for about an hour!!....standing, until our train popped up.  By this time, I'm beginning to think this is not placebo effect OR my iron will that I am able to be this mobile without feeling tired in the legs?  Brad also comments that I seem to be walking smoother...taking longer strides.  "You're not just saying that, right?", I ask.

Train arrives, we embark and get to relax in first class until we arrive in Munchen where we get a connecting train to Garmisch.  Now it gets interesting because the train arrives on Track 11 and we have 15 minutes to get to Track 28 and we are on the last car.  We have to 'hoof it' to make our connecting train.  I am aware of this and start to "hoof it".  Now, I have not been able to do this for the past year - year and a half...but to my utter delight, not only am I able to speed walk, I'm actually in front of Brad and he has to catch up to me.  Granted he's pulling the carry on, but I'm carrying my laptop bag.  Halfway there, I start slowing down as my legs begin to tire a bit and I don't want to stumble.  Brad passes me and now I have to try to keep up with him!...darn!! I was so hoping to lead the entire way!

Thoroughly impressed with my performance, I try to get my breathing back to normal, as that was probably the most cardio I have done in a few years! As we settle down for the final leg of our return trip, I think about what my family's reaction in Garmisch will be when they see me?  I had secretly hoped for a more dramatic improvement, but I think I look and move exactly as I did before, with maybe more energy.  Brad reassures me that he notices the different, but he's supposed to say those kinds of things, right?!

My brother picks us up at the station and asks how things went.  "OK", I sheepishly reply and quickly begin to head for the car.  "Hey, you're walking better" he says, as he follows me out the door.  Beaming (because this is what I needed to hear) I plant myself in the back seat, feeling much better about facing the family...because if Brad and Pete can see the difference in my walking, then others can too!

We arrive home to hugs and "how are you's" and I spend the next hour replaying everything that happened in Frankfurt.  I'm getting tired and so is Brad, so off to bed we go.

Day 3

Brad took the train in to Munich with Pete, Tony, and Cherie to visit the Deutsches Museum.  I am listening to my body (for a change) and have decided to take it easy today.  Plus, I've already seen the museum, so it's not like I'll be missing something. 

So, after 3 days here's where I am at as far as symptoms go:

  1. Fatigue - no change, except when it comes to leg fatigue...I seem to be able to walk farther before my legs start getting tired and weak
  2. Legs are still stiff and numb but maybe slightly less stiff?? Not sure
  3. Bladder - Not sure about this one because with travelling and being out and about, I haven't been drinking as much as I normally would...but last night, I did not have to get up once during the night!
  4. Numbness - the only change I have noticed is that my hands are not as stiff...is this due to slightly less numbness...not sure?? But, like Sandra, I am hoping to be able to touch type with all ten fingers> LOL
  5. Hands/Feet remain warm when they should be.  That's a change, as my hands were always on the cold side
  6. Had some spasms in my foot then first day, but nothing since, even when I have eaten questionable foods.  Will be monitoring this one closely.
  7. Balance - no real difference
I tried to do the heel to toe walk but still felt like I was on a tight rope...only difference was that the movement was not as jerky.

**I took my bandage off where the incision was made...couldn't find where the incision was!?!?...just a small dot of blood??  will get Brad to take a look **

Post Liberation Day 1

 My apologies that my posts have not appeared in a timely manner...finding wireless (or wired) internet has not been easy!

It's now the first day since my procedure.  The headache I had from the angioplasty subsided a few hours after the procedure, but the base of my skull/top of my neck is a bit sore.  I really don't feel any different although Brad says that my hands and legs don't feel like they are stuffed with cotton balls.  Apparently, I felt a bit like a mannequin?...who knew!?!

I did attempt to do the "walk a straight line" test and I thought I was able to do it a bit better...not as jerky, but still losing my balance.

Today, we are planning to use the tram to see as much of Frankfurt as we can.  An all day pass for two cost 9.50 euros.  We decided to revisit the "Altstadt" which is the old part of town...typical Tudor style buildings surrounding a large cobblestoned plaza with a number of old churches scattered about.  Although my legs were as stiff as they normally are, I was able to walk around the square for 1/2 hr. without too much difficult. (Normally, I am able to walk 500m before I feel my legs getting wobbly)  Brad also thought my walk was a lot smoother and when I thought about it, I realized my stride was a bit longer...it had been getting shorter over the past 6 months as I was not as confident about my walk.

After having lunch, we decided to walk the 3 blocks to the old Jewish cemetary.  I had wanted to visit Dachau because I have an interest in the Holocaust (having taught about it for the past 3 years as a unit for my gr 6/7 classes) and it didn't look like we would make it to Dachau, so this was a compromise.  No problems walking...I did hang on to Brad's arm as my balance is still off and the sidewalk was narrow.

We hopped on the tram to take us to the Frankfurt zoo, where we spent the rest of the afternoon.  Now normally I would be 'petering' out by now and my legs would have already been wobbling...but today, I was still pretty good.

I did have to sit down throughout the afternoon for short (5 min) breaks but I was quite pleased with the fact that I was able to see the entire park on foot...something that I did not think would be possible 2 days ago!  Is this placebo effect and am I willing myself to walk further than I should??

Wednesday, August 4, 2010

Liberation Day

It's 8:15 am and I am trying to calm the butterflies that threaten to overtake my stomache.  My procedure was scheduled for 8:00 am and I really need to pee, but I'm afraid that the nurse will call me while I'm in the toilette, so I try not to think about my bladder OR the butterflies.

Aside from having my wisdom teeth removed (which required a hospital visit) I have never been on the receiving end of surgery, so had no idea what to expect.  I had read that Dr. Vogl didn't use anesthetic..."but that's a little  masochistic, isn't it?" I ask Brad, who tries to calm me down by saying that the scalpel he probably uses is so sharp I would hardly even feel it and besides...the incision is probably just a cm or two long. "So it probably feels like getting a paper cut???" I ask. "Yeah...a paper cut".  Yeah...right!?  I'm thinking he's just trying to keep me from freaking out, but I don't have time to ponder the paper cut theory as the nurse is calling for "Frau Braun"...wait...that's me!!!  I get up and go to the nurse who leads me to the angioplasty change room...Brad has to wait in the waiting room.  Amazingly I am not anxious about the procedure...just worried that the nurse will come back and I will be buck naked, having taken too long to change into the dressing gown she's given me.  I shouldn't have worried, as my modesty was about to be put to the test!!

As I try to keep the back end of the gown from flapping loosely about, which would expose my very naked backside, I am escorted to a very narrow operating table, which I get up on, trying hard not to expose myself.  (Little did I know that this was a pointless effort on my part).  So I am prepped by a doctor from Libya who inserts an IV...ouch!, and by a nurse who preps my groin area...so much for the modesty!

Dr. Vogl comes in (it is now 8:45am), asks me how I am doing and begins.  No anesthetic people!! The actual incision wasn't bad...to start... but he presses against the vein and THAT is extremely uncomfortable...I don't want to say painful...but it's close.  The uncomfortable feeling in my groin area subsides and I try not to focus on what the Dr. is doing.  (I should mention there are three other doctors in the room, monitoring the machines and assisting Dr. Vogl) "Breathe, focus, think of horses" I command myself"  Horses aren't working, so I switch to picturing Julie Andrews in the alpine meadow singing the "Sound of Music".  Hey, it's one of my favourite musicals and...it works!

I know I should be looking at the monitors...you can watch as they fish the catheter through the veins to their destination...but that would probably accelerate my breathing and I'm trying to stay calm!  Dr. Vogl does my left side first.  How do I know that,  if I'm not looking at the monitor?...I hear a loud pop near my left ear...it's kind of like when you have water in your ear and then it quickly drains out, but 50x louder.  He ask me to hold my breath.........still holding.......can I breathe now??? Didn't bother to tell me to resume breathing which I do, of course.

I feel the catheter, as a pressure, in my chest.  And then he tells me to hold my breath again, and I feel a tremendous POP! accompanied by a very sharp pain that radiates from the base of the skull, all the way to the front of my skull, just above my right eye.  Holy Hannah, do I have one heck of a headache!!  Dr. Vogl must have sensed my discomfort, because he asks if I have pain?...Uh huh!

I should mention that after every pop, the other Drs. are calling out numbers (I'm thinking they have something to do with the blood flow).  Anyway, a second pop and then I feel as if the catheter is being withdrawn.  Dr. Vogl informs me that it is done and everything looks good!  I thank him and look at the clock...9:15am.  Just 30 minutes!

After being transferred to a hospital bed I am wheeled out of the Interventional Radiology ward to the Day Ward.  Brad comes upon me with a very concerned look on his face. (he later tells me that when he saw me in the hospital bed, he thought something went wrong, as he was expecting me to walk out of the ward) I proceed into the bowels of the hospital...really, all I see are water and electrical lines as I am being moved to god knows where!?

I end up in a totally different building.  Geez, I hope Brad can find me?! The nurses were very nice, informing me that I would be staying here until 12:15, and offering water, tea, biscuits or a sandwich.  I opt for water and tea and patiently wait for Brad to show up.  While I was waiting I was evaluating how I feel.  I don't feel any different...no sudden improvement in numbness or clarity...darn! I was kinda hoping I would feel something different...oh, well that wasn;t very realistic. 

It's been about an hour and Brad still hasn't shown up...I'm sure his lack of German isn't helping.  In the meantime another woman is being rolled into the room...I recognize (what I am guessing is) her husband from the waiting room this morning.  I was curious if she was here for CCSVI as they spoke English and she was in a wheelchair.   He asks me if I got the angioplasty and I say "yes".  Turns out they are from Vancouver Island!!  Best wishes for a successful procedure Diane!!  Hard to believe I travelled to German to meet someone from VI.

Brad finally shows up...there was a bit of a miscommunication. :)  He asks how I am feeling.  It's a loaded question, but I am honest and say good, but the same... because I really don't feel any different except that I think my right hand is a little less stiffer...but maybe I'm just imagining things?

At 12:15 the IV comes out and I can get dressed.  I am transported by wheelchair this time, again through the bowels of the hospital...at least I can see where I went...back to the IR ward where I await an MRI followup.   Brad notices I am still wiggling my right hand, grabs it and notices that it is very warm??  He grabs the left hand...warm as well.  Well, that's a change...my hands are usually cold!?

Over an hour later, and I am finally called in for the MRI...I can keep my clothes on this time because it will only take 5 minutes.  And then we wait in Dr. Vogl's office for at least another hour!  I'm getting tired...tired of waiting!  Eventually I get to see Dr. Vogl for a final consultation where he shows me the newly ballooned veins, tells me I need to take baby aspirin once a day for the next year, and then hands me a weekly log that he would like me to fill out (its part of his study).  He wishes me well and then sends me on my way.

I have been liberated!

Monday, August 2, 2010

D Day...aka Diagnostic Day

I have never been so happy to discover that there is something wrong with me!  I have CCSVI!! How did I get to this wondrous conclusion??  Here's what happened:

Sunday (yesterday) Brad and I took the train from Garmisch-Partenkirchen to Frankfurt.  We rode first class from Munich to Frankfurt in a compartment we had all to ourselves.  I think I am hooked on train travel...it's a very comfortable and relaxing way to get from city to city.
We arrived in Frankfurt in the afternoon and then proceeded to walk the approximately 500m to our hotel...which is 2 blocks from the Red Light District, but I didn't know that when I booked it.  I decided not to bring my 'transporter' because I didn't think I would be walking long distances but I was struggling by the time we got to the hotel (partially due to the fact that I had eaten trail mix (raisins have too much sugar, ergo bad for Monica) so spent the rest of the evening in a prone position on the bed.  I had an apple for dinner because the restaurant in this hotel is only open for breakfast (the one meal that is included in the price) and I wasn't about to hobble the four (big) blocks to the Greek restaurant that Brad found...'just down the road'.

Did not sleep well because the hotel room faces the street and there is a pub kitty-corner from us that is open until 4am...oh joy.  With the window and door shut (we have a balcony) its okay, but it was muggy (and we discovered there is no A/C) so we opted for an open window and tried our best to sleep through the noise.  It's cloudy today so I'm sure it will be better...sleeping anyways!

The alarm went off at 7am but we snoozed until 7:40 and then got ready to go.  My appointment wasn't until noon but I wasn't sure how long it would take with the tram and how easy it would be to find the part of the university hospital I needed to get to, so I wanted to give us enough time.  It couldn't have been easier!  The location of our hotel is along the tram route to the hospital.  So it was just a matter of going back to the train station, buying a group day pass, and waiting for the tram.  The tram stops at the university hospital.  It was then just a matter of going through the front doors to the information counter, where we were directed to the Interventional Radiology clinic.  After being directed to Dr. Vogl's secretary, where we had to pay for the diagnostic tests (1200 Euros), we had an hour and a half to kill.  We walked to the restaurant which was in a different building and I had a salad...I wanted to eat now, because I had read that many people spent a good 7 hours at the hospital...waiting...

At 12:10 pm I get called by the nurse who tells Brad to wait in Dr. Vogl's waiting room (which is very large and has a huge flat screen TV, water, magazines, etc.)  while I'm escorted to a very small cubicle to change into the obligatory hospital gown in preparation for my MRV.

5 minutes later, I'm being placed in the MRI machine and am being poked not once (because the first time the vein was too small for a good 'flush'??) but twice.  It didn't exactly tickle but, once the needle was in it was ok.  I was given a panic button and my finger had one of those things that tracks your heart rate.  They then proceeded to fit a cage-like visor over my head which made me feel like Hannibal Lechter from the movie, Silence of the Lambs and I had to stifle a giggle because I'm sure I looked like Hannibal Lechter..."Do you want a nice Chianti with that?"

Aside from the noise, it was quite comfortable...I think I could have fallen asleep...if it wasn't for the noise!  I think the whole procedure from the cubicle to walking to the waiting room took about an hour.  My biggest concern through the whole entire process was whether I was going to have to pee while I was in the machine!  thankfully, I managed until AFTER the process.

Waited another 45 minutes to an hour before I was ushered in to Dr. Vogl's office where he proceeded to show me the images of my MRV which showed 3 stenoses - 1 on the right jugular and 2 on the left.  I asked him what % blockage I had and he said only 25% for all three.  There was a part of me that kind of hoped I had a higher % blocked (like 50% or more) but he thought the % probably correct for the amount of disability I presented???  He also asked me if I knew I had many lesions on my brain (I did) and he commented that he was a bit surprised I presented as well as I did...considering the amount of lesions.  However he isn't a neurologist so...   but it made me feel good, anyways! :)

I did not have a Doppler Ultrasound.  I asked why...and Dr. Vogel said, it was obvious I had stenoses so why bother with ultrasound?  which kind of makes sense.  I don't think he checked the Azygous vein and I forgot to ask him...??? I think I was just so happy to learn I had stenoses, however small!  At any rate, I am scheduled for balloon angioplasty tomorrow morning at 8am!!!!!...the journey continues...