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Well, I talked to Alex today and she told me my BCBS insurance finally approved everything. There was a big mix-up and apparently she thought I needed pre-approval for the MRI/MRV but it turns out I never did. Sitting around waiting was stressful since I sent off my records in early August (I had booked the appointment for Dec. because I have a month off from work). At any rate I go to Stanford in 2+ weeks.

My MS right now is incredibly mild (now on Tysabri, and only optic neuritis/cognitive issues when I was diagnosed 2 years ago). So I will make the final decision about surgery when I get the information from the testing after speaking with Dr. Dake. I'm a little concerned about long term stents in my jugulars holding up because it is all so new. On the other hand, it seems like good "insurance" to prevent things from progressing too quickly further down the road. I'm in the early stages so maybe I should do everything possible to nip it in the bud. The PML factor with Tysabri is an issue too--I've only got a few months left before I'm taking the "holiday"--which may be permanent because that brain infection scares the crap out of me!!

I will keep you posted on what I find out when I get there!

prof8,

What great news! I'm so happy for you that the unknowning and waiting for THE PHONE CALL" part is over. Now you just have the pins & needles and nervous, anxious part to go through

I was so glad to see the post about the Canadian MS Society taking applications for CCSVI research. We are truly on our way!!!!!!!!

Lora

I had that insurance scare too. Now you can relax, you know, sort of... I am glad your appointment is so soon, enough time to get ready, but not too much!

Well, actually I made the December appointment in August and booked my flights then!!! I assumed the insurance issue was taken care of until a month ago when I called Alex to confirm and suddenly there was all this confusion about it possibly not covering me. So I've been waiting to go for 4 months--just glad the insurance came through ultimately. Actually, I am INCREDIBLY relieved.

That's great news prof8 !! My insurance is BCBS of Missouri. Maybe that means they will OK it when my turn comes.

Way to go prof8! I'm excited for you.

Most EXCELLENT news Prof! I too like many on here have BCBS (of California). They are my network but they aren't my insurance (read: they don't cut the checks). BUT, since they were in network at Stanford (thank you Jesus!), my most recent EOB (Explanation of Benefits) which are not really user friendly, warranted a call to my insurance to find out what/how/who/how much.

So my final take on it, after my share of the 5% plus 300 bucks for the MRI (The IV part), was 2k altogether. Out the door, finis.

So one month's worth of drugs say.... Some get off lighter some don't. Everyone is different that is VERY important to stress here so don't NOT call because so-and-so said such-and-such. Go to the source!!!

So sorry you had that mixup, fortunately you are in almost the same boat I was in as far as disease progression, not an emergency, never was, but striking iron while the fire was hot is all. I've seen the stents themselves, Dr. D has plenty of samples to look at if you like in his office, look plenty strong enough to me and flexible at the same time.

Considering how rubbery and flexible those veins are, I think the stents have quite a bit of cushion inside the walls of the veins and wont be a problem. (My opinion of course).

Although I would like to call Alex to talk about any financial assistance for poor broke pipefitter here, I'm loathe to interrupt right now lol... Egads! Godspeed Alex and Darcy and Angela!!

Please let us know when you get a firm appointment or did I miss that??

Mark.

Hallelujah, Prof!!! I am so excited for you. As someone waiting on their insurance for just as long, I know the feeling of waiting on pions and needles. I am still so impressed with Alex and what she can pull off! Great news, and I can't wait to hear about your journey.

Yes, it looks like overall BCBS has been approving these procedures. I am happy that out of pocket will only be $1700! I just received my instructions from Alex so I'm looking forward to seeing what shows up on the scans!!

Mark -- so you decided to do the surgery even though you have mild MS symptoms? Or as you said "it's not an emergency?" What made you do it? Or was it after seeing the MRI/MRV pictures you thought -- wow, this is really messed up and I need to get it fixed. I'm still wondering what I will decide -- I have thoughts of just getting the testing and then coming back in 6 months during the summer to get the surgery. We should know even more about CCSVI by that point. I can afford to wait 6 months. BUT...maybe things will look bad and I will want to get it fixed now. My only concern is the neck nerve problems and the whooshing/tinnitus that some people seem to be experiencing after the surgery.

prof8 wrote:
Mark -- so you decided to do the surgery even though you have mild MS symptoms? Or as you said "it's not an emergency?" What made you do it? Or was it after seeing the MRI/MRV pictures you thought -- wow, this is really messed up and I need to get it fixed. I'm still wondering what I will decide -- I have thoughts of just getting the testing and then coming back in 6 months during the summer to get the surgery. We should know even more about CCSVI by that point. I can afford to wait 6 months. BUT...maybe things will look bad and I will want to get it fixed now. My only concern is the neck nerve problems and the whooshing/tinnitus that some people seem to be experiencing after the surgery.

Having MS made me do it. There is no medical book in the world that would characterize my symptoms as anything other than "mild". So "even though" I have "mild" symptoms, those mild symptoms left me unable to do a whole lot of nothing, or close to a portion thereof.
I for one wasn't willing to waffle and wait until the line got to around the block, IF I thought there was something there, why wait? Couldn't think of a good reason to not do it. Sure there will be some minor improvements or more knowledge in 5, 6 months maybe years. But the bell curve on this is peaking rapidly insofar as treatment modalities, so why wait?

I had my tinnitus before my surgery and now afterwards, don't even know if it's MS related anyways. This is why I don't compare anyone else's experience to my own, it's like reading the list of side effects on a drug insert before taking, if we assumed all that stuff we wouldn't take any drugs at all!

So yes, compared to someone in a wheelchair, my MS is mild. Compared to what I was 5 years ago, it is not. I look back, then extrapolate into the future, and it wasn't looking too bright and cheery. When one is in a physically demanding job, fatigue takes on a whole new importance.

Mark.

I feel the same way as you . Should I "go for it" but know the line is already long. Once the UB study gives a report next week there is going to be a lot of American who will know about it.(I'm assuming it is postitive.) My GP was not thrilled with the stenting > My husband who works for a medical firm that makes some stents response was "the have been placing stents for years its not a new procedure' Kim

Just thought I would chime in to say that I went to Stanford with very mild MS but once I heard that my left jugular "may as well be functionally occluded" it was a done deal. I was not real concerned about a stent as they are so common. And I figured that since the disease progresses, why not get in as early as possible? (It's also true that I have had terrible experiences with medications so I was thrilled there was a non-drug option). (And, my PCP was thrilled and my neuro as supportive as he could be.)

Everyone is different, but my stent is pretty high up and I had no nerve issues and hardly had to use pain killers. As I have written in the past, I was quite surprised by how different I felt post - procedure. I wouldn't have said I had a diminished sense of things previously, but after, my experience in the world went from "digital cable" to "HD" and my energy/stamina remains strong.

Anyway, everyone has to make their own decisions, but if hearing more about my experience would help anyone, just PM me.