Wednesday, May 19, 2010

Im Back, and ready to keep helping.

Hello Again,
Just a Note to begin: You can now leave comments without following my blog!! YEAH so leave some!! I always want feedback and or questions.

More Exciting news: I spoke with my MS specialist today, and he said that because of me his neurology department here in Phoenix is also looking into setting up to treat CCSVI.. Now they were totally opposed when I first asked them, And now that they have seen and heard all about what my Cardiologist did for me and will soon be doing for all of you. They have opened their eyes. My MS Dr. has always been on board and even began teaming up with my cardiologist so that he could be a part of treating and researching CCSVI. So when his hospital full of neurologists heard that he was going else where to be a part of it. They now want to be a part of it too.

That being said they are not as far along as my Dr. who treated me and who I am referring all of you to. However it is still exciting news that there MAY be one more place in the US and in AZ that can treat CCSVI.

On another note as I am sure most of you have heard Montell Williams has recently started to investigate CCSVI. It would be great if he could get us some more press. As I know lots of you in Canada have done a great job with getting the media to talk about it. Not a lot of people are even familiar with CCSVI in the US. So we need to get the word out there!!! Thanks for reading, T


  1. AGAIN my email is so email me if you want to be added to the list for CCSVI treatment

  2. Hi Tisa:

    Thanks for your blog and your help in finding Dr. for many of us. I am a constant reader of your blog and as a matter of fact I have your blog in my google reader. It is so conforming for many of us seeking CCSVI treatment to hear from people that have been liberated already.
    Please keep up the good job and best of luck to you.


  3. Hi Tisa. Thanks for the nice site. I'd be interested to know about your doc and how to be in touch with him. I was dx'd about 2 years ago. I've had 1 episode but still have symptoms, mostly bad fatigue. Last I saw my neuro (at a top hospital here in nyc) she said.."I don't think there will be a cure for MS in our lifetime" So, that's kind of a dead end. You can e-mail me at

    Thanks again!

  4. Hi Tisa. Great to hear the news that more people are coming on board. Any news on the cardiologist? I haven't heard anything since the initial conversation with his nurse, and just wondering how things are progressing with the IRB and such. Thanks-- Daniel

  5. This is all super cool. You keep on pushing this and getting the word out, really nice of you. I got an email from Teresa asking for a little more info. I am following others who have had the procedure done and who are going to be getting it, mostly out of the country. Arizona is not too far from me. I'm not hearing a lot about it in the states, hopefuly that changes, though. Again, thank you. shawn

  6. Hello :) I am a member of the Northern California CCSVI group on facebook as well as some other internet groups and I am closely following all the information about CCSVI. I am so excited, as many of us are, it's the first bit of real hope we've been able to grasp that doesn't just include medications with unknown results and horrible side effects. For me it seemed that once the long list of neurologists I've met with found out that I am one of the rare ones who cannot tolerate any of the medicinal treatments they just didn't know what to do with me at all, so my medical management has left a LOT to be desired. Currently I'm traveling 2.5 hours one way to be treated by a neuro who is very open minded so I'm anxious to find out at my upcoming visit how he feels about this subject. I've been going through a difficult decline since having to leave my nursing career 2.5 years ago and I'm too young to just give up and accept that this is my lot in life. It's difficult, I've been fighting debilitating pain, relentless fatigue, and major depressive episodes. I also have Lupus symptoms but since Lupus can closely mimic MS it's hard to say what is from what anymore. I'm not surprised at the resistance CCSVI is meeting in the US because money talks and this will make such a huge shift in where the money goes so there are large groups of doctors and organizations who won't be happy about this. I'd like to think it was all about the altruistic goal of making people better but sadly it is not and I have met very few neurologists who seem the slightest bit interested in helping their patients. I'm excited to learn if I have blockages because it might even explain some really awful symptoms I've been experiencing lately. One I have had for years but has worsened in the last year is a nightmarish throb, pounding that occurs in my spine, neck, and base of head after activity. It's just horrible! It takes about 30 minutes sometimes for it to calm enough for me to tolerate it. It would make sense to me that it could be caused by sluggish blood flow out of the brain after blood flowed INTO it during the activity, wouldn't it? The other thing is in the last year I developed lymphedema, which it seems if my vascular infrastructure is limited why couldn't it cause problems with the lymph system, too? I can't wait to find out! It's been a hard 2 years feeling like I lost so much, my health, my career, my independence, and I'm in the process of losing my home to foreclosure. I'm ready to be done with losses and start holding on to hope again!!!

    Sorry this got so long, I'm looking forward to learning more about your experience!! I'm currently on a waiting list for a possible upcoming trial at Stanford, but due to my uncomfortable symptoms I sure wish I could be tested before that!

  7. Good to have you back girl. Keep going :)

  8. hi Tisa, thank you for all the updates. I've been following all ccsvi news and your blog. Very encouraging. I found a Dr. not too far from my home(p.s.thanks Neelima!!) to diagnose and treat, waiting for IRB. In the meantime,I'm "getting the word out there".
    God Bless

  9. Dear Tisa,
    Reading your blog is a daily ritual for me! Thank you so much for keeping everyone informed. I'm from Canada and I find your blog to be a very valuable source of information. FYI, apparently your correct. Canada seems to be the ONLY country getting excited about this according to my sources at the MSS. Wierd! Thank you for your efforts.

  10. Thank you everyone! And please send your personal info to my email not on the blog. This way I can get it to the Doctors.