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I spoke to Alex today, Dr. Dake's assistant. I am sending my history and MRI's to Dr. Dake tomorrow. Alex told me she doesn't work on Friday but when she came back on Monday she had 25 voice mails waiting for her regarding this procedure.

I mentioned CCSVI to my GP (internist) today and she was extremely excited about it. She asked me to email her some information. I'm assuming I should send the top few articles in the sticky for CCSVI RESEARCH.

My internist is more than happy to do the testing that is necessary. I've read through a lot of the material in the forum but one thing is still unclear. Is there a certain protocol to follow with the tests? Can any radiologist do the testing or does it really have to be at Stanford? In other words, instead of getting the MRV, sonogram etc. done at Stanford has anyone gotten it done elsewhere (in home town) and then gone on to have surgery with Dr. Dake?

Thanks for any help you can give!

Personally, with all the inaccurate testing going on or testing not to protocol I'd really just get Dake's team to do it.

Send them to recent Charing Cross article.

Thanks Jamie!

Yeah, I've heard of that happening with insurance before. You are talking about separate billing for the radiologist's work and separate billing for the scan itself at a facility?--so you basically get two separate bills which you don't expect.

Alex seemed very nice on the phone. I asked her if she has been getting a lot of calls -- and that is when she said that she had 25 voice mails waiting for her when she got in on Monday!

I'm starting to think I should just go to Stanford to get the testing done to insure it's done right. I'll be interested to see how much my insurance covers. I went to the Mayo Clinic 2 years ago expecting a HUGE bill but was surprised to learn they counted it as "in network" with my PPO plan even though I was halfway across the country. So the cost was minimal. So who knows -- maybe Stanford will wind up that way.

CureIous wrote:SO point being, if I had to go shopping, then explaining all of this to a radiologist, interventional or whatever from scratch, I might just jump the in car, drive to Stanford and get it done right, preserving my sanity...

If we could "just jump in a car" or jump on a plane. This isn't easy. My husband has an MRV scheduled for next week. I have no confidence that they will do the test correctly. The only way I would feel confident is if the neurologist and/or radiologist would call Dr. Dake (I gave them info) and get his input. Maybe just going through this process will help his doctors to learn from our experience and entice them to do more.

If Cheer reads this, I sent her a PM last week. Didn't hear anything so I am not sure if she read it.

MaggieMae wrote:
If we could "just jump in a car" or jump on a plane. This isn't easy. My husband has an MRV scheduled for next week. I have no confidence that they will do the test correctly. The only way I would feel confident is if the neurologist and/or radiologist would call Dr. Dake (I gave them info) and get his input. Maybe just going through this process will help his doctors to learn from our experience and entice them to do more.
If Cheer reads this, I sent her a PM last week. Didn't hear anything so I am not sure if she read it.

Maggie...
Sorry! I wrote you back, but I think it got lost in cyberspace, since it's not in my outbox...the techs will know what to do. They use contrast for the MRV to see the veins, and they'll do the MRI w/and w/out contrast. Dr. Dake will give input afterwards if you can get a disc made that you can send to him. I realize that for most people heading to Stanford isn't an option. When I first got ahold of Dr. Dake, I had no idea what a rare doc he was. I just knew he was close and willing. It was truly dumb luck or divine intervention...but not due to me. Hang in there, get the MRV done, and keep the faith-
cheer

Cheer,

Thank you for your kind words. Funny how you can lean on someone on the other side of the U.S. that you have never met. I did ask when I scheduled the test, if I could get a disc. It is my goal to send to Dr. Dake with info about my husband. I have only been on a plane once in my life, but if there is stenosis, I'll do whatever I can to get him there.

Just found out yesterday that his neurologist talked to the neuro interventional radiologist about my husband. That's a good thing because I had sent a letter to the radiologist and only got a generic response. Maybe I'm hoping for too much. But, I will keep the faith...

And I'm just really glad that you are all so intelligent to decipher and discuss all this medical jargon.

okay, my thread got hijacked.
What has people's experience been with insurance, particularly the issue of being "in network." Is there a thread someone could lead me to on the insurance issue with CCSVI at Stanford? Thanks.

Well there are bits and pieces all through out CCSVI threads...first you need to know what kind of insurance you have...It sums up to HMO vs PPO whether it is through work or SSDI. The PPO platform is more flexible regarding out of state out of network as opposed to HMO. Then there is the co-pay issue...most it is 80% paid and your share is 20%...I read that someone had a 60-40 out of state issue. One also had secondary insurance that paid the co-pay....

CureIous -- no worries on derailing!

Thanks for the insurance info. I have a PPO plan and secondary health insurance as well through my husband. My plan primary deals with "network" v. "out of network." But if Stanford is in network that would be awesome. I gave insurance info to Alex so I'm sure she will figure it out at some point!

On July 31st I wrote "My husband has an MRV scheduled for next week. I have no confidence that they will do the test correctly. The only way I would feel confident is if the neurologist and/or radiologist would call Dr. Dake (I gave them info) and get his input. Maybe just going through this process will help his doctors to learn from our experience and entice them to do more."

As I feared, they did not do the proper test. Now our insurance is being charged who knows how much and we don't even have the correct test. I'm not even going to take up space on this forum telling the whole dreaded story, just feeling defeated.

MaggieMae wrote:As I feared, they did not do the proper test. Now our insurance is being charged who knows how much and we don't even have the correct test. I'm not even going to take up space on this forum telling the whole dreaded story, just feeling defeated.

That sucks double M. I hope everything works out.