Sunday, May 2, 2010

Day 5 post CCSVI

Hello Again,
I just wanted to write about how lucky I was to receive CCSVI in the US.
How it happened.... My brother in law (PHILL who may have saved me) emailed me info about CCSVI. I had never even heard about it. I immediately googled it and found even more studies and research on it. I got so excited. I forwarded the emails to my MS Dr.s, they were advising against as I knew they would. I talked to my mom, who then said," your Dad has had 3 angioplasties for his heart, (because of this she went on the board at the heart hospital and raised a ton of money for them. She also had become great friends with the chief of cardio surgery) she emailed him my findings on ccsvi, and said Tisa, "If anyone will do it, he will. He does angioplasties everyday. He became very interested. He started making calls to all the Dr.s he could find that were doing the treatment. Turns out he went to school with Dr. Zamboni's best friend. He also spoke with Dr. Dake at Standford. Then he said to my mom, "bring her in, the least I can do is scan her veins for this." As I live in CA and my mother in AZ I drove in the very next weekend. As I said in my last blog it was clear as day that both jugular veins were clogged. He had never seen anything like it before as he usually deals with clogged arteries near the heart not the jugular veins. However it is the exact same procedure minus stints. He began to call in fellow Dr.s. They even made me come back the next day and do another ultra sound, because they wanted to make sure I wasn't just tilting my head the wrong way. But then again clear as day, so they sent me immediately to am MRV with contrast, saw it again and then I went straight into the O.R. Where I had about 7 Dr.s in the room and another 8 or 9 observing in the theatre.

After it was all said and done, I am not going to lie I have had some pain. Nothing that has kept me bed ridden but my leg is super sore as well as my neck. I realize that I was so lucky to have a DR friend of the family to do this for me. But I must say it makes me feel terrible for all you who are worse off than I. And can't find you treatment. So I have dedicated, so much time and energy with this Dr as well as an MS specialist. I have got them all on board to start treating people. They go into the first meeting with their lawyers on Monday to see if they can make it happen some how some way. I will not stop until all those who want to be liberated have the option to. I am keeping in close contact with both the MS specialist and Cardio to find out the progress. If they can get this done I will soon post their info on my blog as well as facebook to help as many as possible. If they can not find approval, I plan on going to the media. I will stop at nothing to help you all.

11 comments:

  1. Keep up the good work Tisa!

    ReplyDelete
  2. Thanks for helping to spread the word. You could have walked away after your procedure, but instead you continue to help the rest of us. I've seen several other people who keep pushing for the procedure to become available to everyone. You and the rest are keeping the hope alive and it feels good after 18 years. thanks

    ReplyDelete
  3. Thank you so much Tisa, I'm having little luck in Illinois finding someone to do anything to help me!

    ReplyDelete
  4. Tisa what is your fb name?

    ReplyDelete
  5. Tisa- My heart is so filled with joy at this miraculous turn of events... I am so very proud of you for enduring this challenge with such grace and courage. The miracle of your life can now help to bring hope and healing to others. Your story must be told and I pray that your voice would be heard loud and clear.

    ReplyDelete
  6. Hi Tisa! Julie passed this on to me and I am jumping for joy for you!!! I am so proud of you and that you have taken this and you are doing all that you can to share it with others! I have sent your link to Ian's best friend in Sacramento who has a sister with MS and I am hoping that this information is helpful and encouraging to them. You remain in our hearts and prayers! xoxo Chris Salibo

    ReplyDelete
  7. Hi Tisa! I am soooo happy to hear about your treatment. I just knew there had to be some compasionate docs out there that would cut thru the crap!!Please let me know when things get rolling with this group as I am in Tucson. I had an MRV done on 4-15-10 and have sent copies to 2 FSIR's in Phoenix--Dr. Romano and Dr. Thorpe. tusaz-xcargrl@usa.net

    ReplyDelete
  8. Great story Tisa!

    Maybe your docs should show the following series of videos to their lawyers so they understand that this is not about Multiple Sclerosis, but Multiple Stenosis. No one can argue that impaired cerebrospinal blood flow is a good thing!

    Before treatment:
    http://www.youtube.com/watch?v=lvwCuPXrKgI

    Less than 24 hours after treatment:
    http://www.youtube.com/watch?v=KYNhYtVojSQ

    And finally, I can jump!
    http://www.youtube.com/watch?v=eNQnMsXxUg4

    Who cares if this is related to MS? Clearly CCSVI is not good and clearly, treatment has immediate benefits. The risks are very low. We've been doing angioplasty for decades. Every cath lab in the country is probably putting stents in other veins once a day. This is a minimally invasive procedure done under local anesthesia. Unless someone wants to argue that poor blood circulaton in the brain is a good thing, there really should be no reason that this isn't widely available, soon!

    ReplyDelete
  9. Thank you all for your kind comments. My facebook is Tisa Mccay ONeill. I promise to keep you all posted when the Dr.s hopefully get their approval. Thank you again for all your support. Tisa

    ReplyDelete
  10. Thank you from the bottom of my heart Tisa. I have not felt so emotional (in a positive way!) for a long time. I am happy for you, for your liberation, for having such a great and supporting family!

    We too live in California, so if the doctor will receive the "clearance" (super smart of him to label this "strictly VASCULAR" problem) - I will be among the first to jump (matter of speech, for I can not jump) on the plane.

    Was the "Monday" referring yesterday, as in "May 3rd"? If so, how did it go? I am so very hopeful…

    ReplyDelete
  11. My heartfelt thanks to you for your service to all of us!!

    ReplyDelete