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Okay, my daughter and I are back from my two month visit with Dr. Dake. Sorry it took me so long to post this. Really, the computer at the Sheraton 'ate' my first post. Anyway... everything went great, super great. We got to visit with Alex beforehand. She is really terrific. She is still very excited about helping all of us, but it has really turned into a big job. She seems to just keep moving forward.
Dr. Dake thought my MRI looked better, although he was hesitant, like he didn’t want to get my hopes up, and wanted to see what the neurologist (?) said.
We talked about my improvements that I have shared here already. I have had one more improvement that I don’t have in the tracking thread yet though. It is one of those that really crept up on me. For probably 15 years or so my feet have been stiff in the morning. They didn’t really hurt, but they needed to loosen up for five minutes or so before I could walk normally. I just noticed last week this is gone! I didn’t even know this had anything to do with my MS.
I got to see the films Dr. Dake has of my procedure. This was super interesting and it is nice to know more. He had told me that I had a very large collateral vein routing the flow around the abnormal valve on the left, over to the right side, but I had no idea. That thing was huge! The pressure gradient had been 4. He showed me the new MRV. I could see my stent, 12x28, right where it should be, and the flow was all good. So, I am off the warfarin and will continue on the Plavix and aspirin daily. I think the Plavix is for six months and the asprin is for life.
Okay, the rest of the trip. My daughter and I got to visit with Skydog and his friend. That was really fun. It was raining pretty much the whole time we were there, but it wasn’t too bad. I had bought rain coats for us… really, we live in Arizona, so we don’t even own real raincoats! Since we just use the Caltrain and the Stanford buses when we are there, we spent a good amount of time walking around in the rain. It was nice to spend the time with her doing something different than we usually do, although you can be sure she found the time to get to Palo Alto Mall. If you go, that place is amazing. It isn’t the fanciest mall building-wise, but the merchandise is really something. Dr. Dake had said he would like another update in a year, but maybe we could get it taken care of close to home and send him the information. My daughter let him know we would be back. She loves that place!
Okay one more thing happened today. I had cancelled my six month visit to my neurologist before my trip to Palo Alto. At that time the office assistant had told me that more patients had been inquiring about CCSVI. Anyway, the normal wait to get an appointment is many months. I called today and left a message that I had my scans and would like to come in. Guess what??? I got a call this afternoon and they scheduled me in a cancelation spot for Wednesday morning. I think they are interested, don’t you?
Take good care everyone!
Beth
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dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back. Placebo schmebo.
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