Wednesday, July 28, 2010

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.

Wednesday, July 7, 2010

How to get on Waiting list for treatment in Arizona

Hey Everyone, Great news, You may now contact Teresa (my Dr. who performs CCSVI in Phoenix, Arizona nurse) directly.

If you are interested in getting on the waiting list for treatment please email

Just email your name phone and email to her and she will call you. Thanks Tisa

Thursday, July 1, 2010

Questions Answered from all the emails

Hello Again,
I just wanted to answer some of the questions I have been getting in one place so I don't have to keep typing the same emails.

When is treatment in AZ starting?
Answer: They originally said July 4th but have pushed back a few days until the 8th.

Why does the date change?
Answer: I just spoke with Teresa and Dr. D 2 days ago. I told them the costs of the procedure in places like Mexico, Costa Rica, and all other countries that are performing the treatment. Their price was going to be much higher than over seas so they are meeting on the 8th to get the cost down. How? They are trying to negotiate with catheter companies to get them donated.

Why has Teresa not called?
Teresa is SWAMPED with emails and phone calls and trying to get this procedure off the ground. So give her some time she is an honest wonderful good natured person, and will call you back as soon as she has some answers and time.

I spoke with someone else at AZ Heart and they gave me different info?
Teresa is the ONLY person beside Dr. D the vein Dr. , and all the Doppler techs, that's know anything about this. So only speak to and get your info from her.

Why is taking so long?
Stop worrying. I know you are all so anxious to get this done. But they have to do it right and not get shut down. It takes some time to work out the logistics, price, and time to treat over 300 people. Also side note: Dr. D is a WORLD renowned surgeon the head of hospital and a very busy man. BUT he is so excited about this, it has become his 1st priority. Especially after he received news from my MS Dr. that I no longer have MS.

Do you think we will all be free from MS like you?
I hope and pray that it works out that way for everyone. However people must understand that I had a very MILD case of MS. I only had it for about 6 months.

Do I think CCSVI helped?
ABSOLUTELY!!! Do I think there were other factors involved with myself going into full remission? ABSOLUTELY!! I told myself everyday that my lesions were healing. That they were going away. I would even tell them BYE! I prayed to God all the time and asked him to heal my body. I know he had A LOT to do with it. So it was a combination of a positive attitude, telling myself I did not have MS, telling my body to heal the lesions, CCSVI for sure, and God FOR SURE!! Please keep in mind: MIND over Matter the Secret whatever you call it, because if you tell your Brain something enough it believes it. And if you pray to God he answers your prayers and shows you a path to take. In this case it was CCSVI and I truly believe I was meant to help as many people as possible to get this treatment. So I will continue this fight and will NOT give up on you guys just because I am healed. I want to see all of you get healed as well. In conclusion: Believe in CCSVI but also believe in the power of your mind and the power of God.