I had my 3 month follow up appointment with Dr. Tornatore today. I learned a lot, and not all of it was to my liking.
1. He could clearly see that my walking and balance have deteriorated since the procedure. My wonderful husband and I are convinced that it has been deteriorating at a faster pace than before the procedure. He allowed that opening the two internal jugular veins, but not the azygos may be having a negative effect on the azygos vein.
It is clear from my experience and that of hundreds of others, that the IJVs seem to have a great impact on the autonomic nervous system, and cognitive functioning. Thus my improved temperature in my extremities, swallowing, fatigue, and thinking. Dr. T is also sure that it is the azygos that is responsible for my walking and balance problems, especially since Dr. Neville saw reflux in that vein during my venogram but could not find a cause.
I made contact with Dr. Sclafani a while ago about treating me. He has agreed to see me when he gets his IRB approval. Hopefully it will come through on Monday. Unfortunately, there is a looooong list of worthy patients ahead of me in his queue. I cannot say enough wonderful things about this man.
2. While I wait... I am going to go back on Tysabri. It worked miracles once before. I don't need it to perform miracles, just stop this thing while I wait for a second trip to the cath lab!
3. I am also trying 2 new drugs to hopefully manage some symptoms better.
4. This is SO not over. As soon as I can find an IR to treat my azygos, I believe (and so does Dr. T) that things will begin to change for the better. It makes me feel so good that my neuro is still a firm believer in the procedure, and it's ability to help me. I really am not making this stuff up.
So that's the truth today. It's not too pretty, but it is real.
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2 comments:
Nicole
I just read all your blog from the begining. Thank you so much for sharing your experience and thoughts.
I live outside Boston and will be visiting my neuro soon. I was all gung ho about CCSVI but now I am not sure. My issue is mobility which has slowly gone downhill over the last 1 1/2 years- diagnosed 6 yrs ago. She prescribed the new Ampyra which has done absolutely nothing. I am going to research your other protocols including Tysabri..am a bit of afraid of it..but you have had great results... with your mobility?
I am trying to learn to make my "to do" list shorter so that I don't get so disappointed with myself.
I also signed up for TIMS. Thanks again KDGO
KDGO,
I am STILL gung ho about treating my CCSVI! It is just so important to have a doctor who is well educated (or better yet, very experienced) about treating it. Those docs are hard to find, but it will get easier and easier, I'm sure of it.
Hang in there!
Nicole
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