Sunday, September 26, 2010

Better late than never!

I've been getting some pretty regular trouble for not blogging and keeping you all updated. So here goes. I am recovering well, all has healed and I have still noticed changes. I am still migraine free, I can still tolerate heat, my right hand still tingles like I have just come in from the cold. I have not noticed any difference in my balance, coordination or endurance. I am still hopeful that if I work on the physical strength then these things will improve. Over all I feel as though having the procedure done was 100% worth it. At the very least I got to go on a wonderful girls trip with my Mom and that is no small thing. I renewed my hope and I have improved my daily quality of life even if just the lack of headaches. At the most I took a step that has changed my future path. If CCSVI does turn out to be an answer in the fight against MS I will know that I took the plunge early and prevented further damage.
I thank you all again for following me on this blog through my adventure.



Saturday, August 14, 2010

The little things

Blog disclaimer....todays blog is being typed from my new ipad so it will contain even more typos than normal ;)

Each and every day when I have a shower I turn on the fan in the bathroom that is on a timer. It runs for 30 minutes. Previously I could almost always count on the fact that if I turned on the fan right before I stepped into the shower I could know that by the time the fan turned off I would have my shower done, hair dried and makeup on. The speed of this is not due to my overwhelming efficiency but rather to my heat intolerance. Tonight something strange occured.

I set the timer then jumped in the shower and washed my hair. Then I washed myself, shaved my legs and scrubbed my feet...all with the shower on HOT. Then I stood there with the hot water streaming over me thinking about how wonderful a hot shower was. Long story short I spent over 45 minutes in the shower tonight and loved enery minute of it. Heat was no problem, no balance issues, no fatigue, no dizziness or blurred vision.

So I guess we can now add heat tolerance to the list of things that my "procedure" has changed in my life placebo or not!

Wednesday, August 11, 2010

Home safe and sound

I arrived home yesterday evening and have had 2 little sweetie pies attached to me ever since. It is wonderful to be back in my own bed and settling into the couch to take it easy for a few more days. The plane ride home went smoothly, I was sore when I arrived home which is no big surprise considering how much pressure was put on my veins.

All is well....and to answer all the questions on whether or not it worked I don't know. Dr Vogl was very firm  that this is NOT a cure for MS but an experimental procedure that is being used to treat the symptoms of MS. He hopes that looking forward it may help with slowing or halting the progression but as of now we know nothing.

What I do know is that just as many others have claimed after having the procedure done my "fuzziness" is gone and I am no longer popping Advil like candy for my constant headaches. So this is a good step in the right direction and I will continue to hope to see more improvements!


Saturday, August 7, 2010

The Day After

After almost 8 hours in the hospital last night I made it home with just enough energy to eat a quick dinner and then collapse into bed. I sleep for a solid 12 hours and am now awake just enough for sitting on the couch curled up in a blanket drinking coffee and playing on the computer. Nothing different to report today, I have a major headache and the lovely bandage wrapped around my hips to prevent bleeding from the site they went in is ever so comfy ;)  but now for the part you are all wondering about, the actual "procedure"

As all of you know I do not always stay calm cool and collected and this proved to be one of those times. The day went something like this.

1pm arrive at hospital wait in hallway waiting room for nearly 4 hours

445pm get called back to "cabin" aka room done long white hallway to wait in a little room with doors on either side, one door from hallway to cabin, the other from Cabin to OR

(here time gets fuzzy)

My Mom and I waited for about half an hour in the Cabin then they called me into the OR. I was laid on the bed and then watched as the room was set up for my procedure. The placed an IV with just saline in my left arm, inserted the whatchmathingy for the catheter in my upper right hip and then in walked Professor Vogl.

They strapped on his plastic mask, asked me a few medical questions and then he said "So lets see how your veins behave" In he went and all was good, I could not feel a thing until he releases the contrast dye into my left the exact same moment I made the mistake of looking at the screens that displayed what was happening. BIG MISTAKE  a panic attack...a true one...with sweating racing heart, nearly vomiting and hyper-ventilating began. Professor Vogl asked what was wrong, I told him I felt sick and panicky and his response was "No panic allowed you are fine" A very kind nurse, or another Dr ( I have ano idea they all spoke to one another in German only ;)) came over put a cloth on my head and rubbed my hair and started explaining what they were doing in English. Knowing what was happening calmed me down almost instantly. I felt them insert the dye into my right IJV, it feels much like when you have water shot into your ears to clean out excess wax (gross I know) then explained that they were going back in to balloon the vein. It too him a few tries and he remarked to the others in the room (there were 6 people) that there was lots of pressure in the vein and it may have been their best example yet. He pulled everything out and told me I had ballooned, I was done and had to remain lying doen for an hour to prevent bleeding from the artery in the leg. After an hour I was sent for a CAT scan, a BREEZE after MRI's and then told I could get dressed and go wait in the waiting room again for the Professor. We waiting about 15 minutes before we went to talk to him to be told all was good and to please fill out the following forms, Immediately after, 1 week, 4 weeks and 3 months after the procedure so that they can compile data for the "experiment"We then went back to the hotel

So here I am the morning after, with an open IJV rather than a 70% closed one feeling tired and with a headache. I will take it easy for today and check-in aging tomorrow

Thank you all again

Jess xoxox

Thursday, August 5, 2010

Tomorrows the big day

I went to the University Hospital today in Frankfurt to meet the wonderful Dr. Thomas Vogl. After a night with no sleep and plenty of worry I arrives at the hospital for yet another MRI and more Contrast dye. 3 hours later I sat across from one of the most honest and intelligent people I have even met. Within minutes my mind was at ease and I knew that I was doing the right thing. My surgery tomorrow has a 50/50 chance of working for me, a 50/50 chance of making symptoms such as my fatigue, numbness and visual disturbances go away. It has a completely unknown chance of preventing the progession of my MS. As most of you know I am a planner, an organizer and a calculated risk taker. Tomorrow has no guarentees, no promises and no know future effect. The Jessica from 8 months ago would never have walked into this situation because it requires faith and belief. I have always argued that just believing in something is not enough, that there has to be proof and facts to back it up. Yet tomorrow I walk in having faith that I will be ok and believing that the proof that the procedure works will come. So if nothing else comes from my surgery then I have still grown and allowed myself to trust my gut that little bit more

Wednesday, August 4, 2010

A drive-by

  The 3 days in Heidelburg were amazing. The town was beautiful, stunning architecture, friendly people and great accommodations. We wondered the cobblestone streets until we couldn't walk any further and stopped for breaks at various cafes alternating between beer and coffee. I would LOVE to go back again one day with Jeff and the girls under different circumstances. We had a final wander this morning and then lunch at the hotel before we took a car back to Frankfurt.
  I knew my nerves were kicking in this AM when I woke up at 5 and could not coax myself back to sleep but I did not realize jut how anxious I was becoming until after we arrived in Frankfurt. In the car ride here I was calm and sleepy, taking in the scenery and thinking about how it was really not that different from driving through BC or Alberta. When we arrived on the outskirts of Frankfurt I could not help but notice a similarity to Calgary's streets and building. All seemed well until we drove past the Gothe University Hospital.  All at once I was forced to remember that we are not just her for coffee, beer and sightseeing. I was shaken and rattled, ready to pack my bags and go home. A little rest, some fantastic coffee and beer later I am again feeling more confident and ready for tomorrow.

  I have my initial meeting with the Dr tomorrow afternoon, he will run some tests including another MRI to make sure that I am indeed a candidate and if all is well I will be scheduled for the surgery on Friday. For now I am getting ready to go to bed and then taking it a day at a time hoping that tommorow goes smoothly.

Thank you all again for your support


Tuesday, August 3, 2010

A quick check-in

I have made it to Germany safe and sound. My Mom and I are in Heidelburg and have spent our time so far pretending that we are here just to see the sights and relax. I spoke with a fellow Canadian last night who was also treated by Dr Vogl, the same surgeon I will be seeing. She sang his praises and that managed to put my nerves to ease.

This is a quick update...I am using the free hotel internet in the business centre and there are others waiting to get online.

Thank you all for your contued support and I will post again soon