Thursday, July 8, 2010

Update from Teresa on treatment in AZ

I just got off the phone with Teresa. I am here to update you so she doesn't have to make 313 phone calls. Although she is more than happy to speak with you via email. She told me to tell you all that if you want to contact her with ANY questions emailing her will get you a faster response. So here is the most up to date information regarding Venous impairment Procedure. OR V.I.P. That is what they have named it for certain reasons. ( keeping the doors open to treat all of you)

When will they start?
I know all of you must be feeling like this is taking forever. And I'm with you. It is. But they are just trying to go about it in the right way so that they will not get shut down, and insurance will cover treatment. New Date: Aug. 1st. I said Teresa is this the final date or are you guys going to push it back again? She said this is the final date.

What is taking so Long? And I want to curse when I say that but this is a positive blog so I wont. I just want you all to know I am as upset and inpatient as you are.
So back to the question. They are talking with different insurance companies, and are almost positive they can get insurance to cover your treatment. That is for US citizens only. That is a HUGE deal guys. You will not have to come up with thousands of dollars out of pocket. So :) for that.

Extra Notes from Teresa:
This is NOT a Randomized study. Everyone with compromised veins will be treated. No placebo.
You will have to have a CTV and venous duplex ultra sound of bilateral, internal jugular vein and vertebral veins. As well as the azygos vein which will be viewed during veinogram. In words we all understand, CTV Cat scan of veins. They have switched from MRV to CTV because it is more detailed. Duplex Ultra sound of all the veins listed above. New name for Doppler but the same thing.
ALL PATIENT MUST UNDERGO THESE TESTS AT AZHI, Even if they have had them done somewhere else.

About How many People can you treat a week?
5 And testing will begin first

Special Rates from Embassy Suites at AZ Biltmore:
All patients on waiting list will receive an email from AZ Biltmore Embassy Suites for discounted rate, discounted dinning at their hotel and FREE shuttle to and from the AZHI. :)

You will most likely be in AZ for 2-3 days. Depending on if your veins are blocked or not. If they are they are working on treating you in that 3 days.

Again Teresa said if anyone has anymore questions to email her. You will hear back much faster than calling her.

So here are my thoughts. I know this waiting time SUCKS!! I am with you all. I am on your side so here's what I have to say. If you are okay with waiting another 2-9 months depending on where you are on the list than GREAT. AZHI will be the best choice, they are taking so much time so that they do everything right and keep their doors open to treat all of you. But if your MS is REALLY BAD and you want this treatment yesterday, here is what I suggest you do. Number one go to an interventional Radiologist and ask to have an ultra sound of your neck. Tell them you have horrible headaches, or that you are dizzy all the time ( which isn't a lie for most of you) and you want to make sure your getting enough blood supply to your brain. Interventional Radiologists are probably the best specialist that will listen and know how to do angioplasty. But go to any Dr. that will listen. Just don't tell them you have MS. Use other reasons that will make them want to scan and treat. Second. Go out of the country, there are many places like Costa Rica, Mexico, and others where there are not long lists.

My prayers are with all of you and I hope you get your treatment ASAP.


  1. I totally respect them trying to get this right. In fact if, they have to take longer that is okay. An IR I listened to a couple of months ago in Vancouver,(Canada) had just come back from training with Zamboni. He said he needed time to get it right, and he has been an IR for 15 years. I feel like a bit of a coward about being so careful, but my husband has suffered with MS for decades, and I don't want this liberation treatment to be a traumatic, negative experience.

  2. Thank you for the update Tisa - yes I was wondering but you added a lot of information that answered my unasked questions.
    Thank you! Marcia

  3. Approving comments is a really really great idea. Sometimes I really only care if the person in charge gets an idea of what some people are thinking!!

  4. This is good news Tisa. Right now, as you know, it is very HOT in the southwest. Traveling will be my enemy for the heat just knocks me out. I will have to wait until at least Sept. Just knowing that testing and treatment will most likely be available when I'm ready is a huge relief. After 18 years of this crap, I think I can wait a few more months. Like I've said before, thank you for not walking away after you had your procedure. All the info that you put out there for us is great. I really appreciate it.

  5. Thanks for all the understanding and positive feedback. As for you Anonymous I do publish comments. I just have to approve them first. They dont auto publish.

  6. Tisa, You have been an outstanding leader on this mission. I applaud you in all your efforts. I just got insurance approval for my liberation and that is worth a wait (if you can). I truly believe this will be the standard of care for MS very soon. Thanks for leading the way for this great facility.

    Hope you come to Dr Dake's CCSVI party Aug 14 Albany CA.

    (Anyone else too). send your snail mail address to and I will send you invites. enough for your docs and friends if you specify how many you'd like.

    Thanks, BIG TIME!!

    CCSVI-MSketeers All for one and one for all!

  7. Hi Tisa, thanks for such great information. I recently went through a CCSVI diagnostic study. They are waiting for a procedure trial to be funded and approved. Do you think they will take the images from other doctors to do a procedure, I definitely have a severe blockage and if this study isn't funded, I'd like to get this fixed ASAP.

  8. By any chance do you know how much us Canadian will have to pay?
    Thanks Tisa.... and thanks for all the information.

  9. Will they be offering the treatment right away after testing Tisa

  10. I concur with Shawn, 32 years here, and I too am tired of this "crap"! I will be there with bells on as soon as I get my call to come! I appreciate the fact they are trying to work it out with insurance too. That would be a enormous help! Wonder if medicare would help?
    You are a savior Tisa!

  11. fabulous!! i am encouraged that the usa is stepping up to the plate. i travelled to tel aviv last july and had my adult stem cells taken from my bone marrow. i returned to athens in jan '10. i am doing ok and would probably do it again - but financially would most likely not be able to do. IF medicare would pay for this procedure - i would do it in a heartbeat:) i was dx 1/84 and totally paralyzed below the waist by the fall. thru prayer and a touch of Jesus - i have been walking w/o aids for almost 26ys but the scars still need healing. so i am praying this treatment will eliminate this awful disease = to God be all the glory! blessings 2 all - S

  12. Thank you Tisa for taking the time to explain this so clearly!

  13. Thank you for the information! I emailed Teresa on Wed and she emailed back on Sun. Waiting does stink! I was Dx in Oct 09 and my symptoms have only gotten worse even with drugs. I want to be able to play soccer with my kids (4 and 1). I am hoping this along with the drugs, diet, excercise will help me out of this :)

    Thanks again!

  14. Hi, Today is Aug. 2. Just wondering what the latest is. Are they seeing patients now, scheduling patients now, or neither? Thanks!

  15. I just looked more deeply into your blog and got the answer to the question I just posted, so no need to post it unless you get more info. Thanks again!