Questions and Comments

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Questions and Comments

Postby coach » Sat Aug 29, 2009 2:47 pm

My date for Stanford is September 15 (tests) and 16(proceduree if indicated by test results). My husband wanted me to ask if we needed to pay any upfront or does Stanford bill your insurance and the patient is left with the 20% to cover after receiving an EOB from insurance company. I did get notification that my insurance had approved MRI and MRv of head, chest, andd neck which was a blessing. I saw my new neuro this past wednesday (same practice as my former neuro that died) and told him I was having testing at Stanford) He did not dismiss it outright. This was after we had discused where I was in the disease process and his recommendation of Novantrone. I guess I may have come on a little strong with my opinion of the CRABs and other medicinal attempts to reign in one's immune system because I have never been of the belief that the immune system was the problem. I said I thoughtt I would skip the possible cardiotoxity issues as well as increased risk for AML and go with Dr. Dake and Stanford. He seemed resigned to the fact I had made my decision and he would would like a copy of the test results. He said to see him in a year. I hope I have some improvements to share with him then.

Several questions:

1) Whom do I need to talk with concerning a copy of the test results?
2) I am assuming that one should dress comfortably the day the tests are done? Helpful hints anyone?
3) We have already made flight arrangements. 5 hour nonstop from Atlanta to San Jose. Rent a car or taxi? Suggestions? Trying to be as economcal as possible.
4) I was glad to hear that Dr. Dake may not always use the Coumadin . I understand that it may be needed sometimes. Anyone heard of a product called Plasminex derived from natto? Supposedly it helps with lowering one's plasminogen activator inhihbitor level.

Been somewhat incomunicado because of a fried home computer. Was so sorry to hear about Holly. It saddened me greatly. Condolences to her boyfriend John and her family
User avatar
Family Elder
Posts: 201
Joined: Wed Jun 02, 2004 2:00 pm
Location: georgia


Postby Loobie » Sat Aug 29, 2009 4:03 pm


Definitely dress comfortable. Formality is not on the program, comfort I will be out there then too! I get in on the 14 and have testing the 15th as well. I can just about guarantee we'll cross paths! See you there! I can't help you with the arrangements, I got lucky and have one of my dear friends that lives about 5 mins. from campus. Can't wait to meet you.
User avatar
Family Elder
Posts: 2197
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby mrhodes40 » Sat Aug 29, 2009 4:50 pm

Well no metal (not even a bra) and they'll let you avoid the ritual change into a gown for the MRI MRV--they did me anyway.

First thing you get to the hospital go to registration they are doing it all at once nowadays (the first visit I went it was "print out your stickers at each place" now they do it all at once for every test.)

The stickers are peel and stick labels with your vital information on it name date of birth etc that need to be wallpapered over the paperwork at every testing front desk. I had a ream of them to carry around in my Hugo rollator.

The walks around campus are lONG so if you tend to get drop footed then get a chair at the valet desk as you first come in--BUT be aware if you are alone you will wait for an orderly to push you to the next thing sometimes for 20 minutes. Have a map from the front desk (it is 2 sided and has the different floors on it--have them highlight the places where your tests are) if you and your support person are finding your way around on your own...the map you printed out is not nearly as good as the glossy one they have.

I had my own car so can't help with the bus/taxi stuff.

Just to say "YEAH" I got the novantrone talk a couple of times from my old neuro. He tried to convince me the heart disease was no greater than in normal populations...I disagreed and was pleased to see the black box warning when it came. I changed to my new neuro and this new guy will NOT prescribe it because he did so 4 times and ALL of those particular people got heart disease with only one having any positive effect, and that one patient passed away from heat disease. He was very unimpressed with the drug, and when I met him the first thing he said to me was why did I refuse novantrone--he was curious. I told him then he told me his story.

good luck to you!! I took natto kinase when I got a blood clot in my leg while on coumadin too (can you imagine I was getting blood work every two days) In the past natto has taken my d dimer into normal ranges so I have lab verification of that in my personal body.....
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you... This is my regimen thread Read my book published by McFarland Health topics
User avatar
Family Elder
Posts: 2067
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby coach » Wed Sep 02, 2009 12:38 pm

Thanks for tips and encouragement. Maybe our paths will cross Lew. Limited time on computer because I have to use one at my husband's office which is kind of sporadic. Excitement mixed with realism. My husband will be going with me of which I am grateful. He is great with directions, very visually oriented. I think I got shorted a gyroscope. I'm more of an auditory oriented person. Guess we complement one another.
User avatar
Family Elder
Posts: 201
Joined: Wed Jun 02, 2004 2:00 pm
Location: georgia

Postby cheerleader » Wed Sep 02, 2009 1:07 pm

Hey coach,
The cheerleader is glad you're getting on the field :wink:
Also really glad you'll have your hubby with you to navigate from the airport and around the hospital. Make sure you have a list of questions to ask Dr. Dake. As has been mentioned here before, things move quickly, and he is a HIGH energy guy. Sometimes easy to lose focus once you're there.

We didn't need to pay co-pay first, our insurance is processing the fees frm Stanford first, then we pay. Still haven't gotten any bills since the May procedure.
take care,
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
User avatar
Family Elder
Posts: 5358
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby Quest56 » Wed Sep 02, 2009 2:29 pm

Hi, coach,
Those are my dates as well.

Our paths will probably cross at some point at Stanford.

Best of luck to you, in advance,

CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
Former Ampyra User
Regular Botox Bladder Injections
300mg d-Biotin / day
User avatar
Family Elder
Posts: 316
Joined: Mon May 22, 2006 2:00 pm
Location: Northern Calif Monterey Bay Area

Postby Jamie » Wed Sep 02, 2009 4:44 pm

We were very lucky.

Mel had reached her deductible and also the max co-pay so we were set.

If you haven't reached your deductible you'll definitely have to pay that.

They will bill the co-pay once the back and forth with your insurer has finished.
User avatar
Family Elder
Posts: 596
Joined: Mon Jan 07, 2008 3:00 pm

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)


  • Related topics
    Last post

Who is online

Users browsing this forum: No registered users

Contact us | Terms of Service