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) it's 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-wise 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 MRI.
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 to hold it 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 MRI 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...
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