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While we wait on the edge of our seats we can speculate. I wonder if it possibly has to do with not being told to stay horizontal to keep the jugulars open. Here's what Fog said in the Dr. Sclafani thread:

fogdweller wrote:Apropois of this, if the stenosis treated are in the jugular, would it be a good idea to spend the first couple of days after treatment lying down alot so that there is plenty of blood flowing through the jugulars to prevent thromosis and prevent the walls of the jugular from healing shut against each other?

But I'm anxious to hear what Fog has to say like the rest of you.

Cece wrote:How are you doing now, fogdweller? You had posted about possible restenosis. Were you able to get that looked at? All the best.

I called Dr. Harris there Mon., the recep. said he would call back.
He didn't.
I called Tues. Recep said he had been in procedures all Tues. but would definitely call back that day. He didn't..
I called Wed. Got message machine left message for him to call me. He didn't.
Called Michael Dake's office, and Alexandra who is very nice and helpful, said that since I had not been treated there they could not do follow-up without Dr. to Dr. disscussions so I needed to have my treating physcician call him.
So Thurs. I called again. Got a message machine. Asked for Dr. Harris to call me. He never did.
I called twice on Friday. Got answer machine each time. I asked for either Dr. Harris or Dr. Arata. No call back.

The effort will continue Monday.

I still have a sore neck, there is a slight increase in the severity of symptoms despite the fact that immediately after the treatment, so i have been anxious to check it out. Want to do that locally with doppler, but so far haven't been able to line up anything.

Know anything in Northern CA? I am laready looking into Stanford.

I to had my CCSVI surgery in California in Sept. 2010. I have only good things to say about Dr. Arata. We found him to be very informative on the CCSVI surgery during our consultation which took place the day before the surgery. The day of the surgery once again he was great in helping calm my fears. The day after the surgery we spoke with Dr. Arata again and he was more than willing to take all the time we needed to ask all of our questions before we flew home in 2 days to Canada. All in all I found Dr. Arata made our trip for surgery a very positive experience. Would I have my CCSVI surgery done by Dr. Arata again ? Absolutely..........

Hi all...just got dates for Dr Arata at PI...and yes it is Valentine's Day!!
Q: has anybody used the travel agency they offer?
I'm tired and a little overwhelmed,but peaceful.
If anyone has questions or advice...love to hear it. Later...P

I received my MRV/Consultation/Surgical Dates and it's coming up really soon.

I do worry about what fogdweller had mentioned about not being able to get a call back. According to their website it says you can get scheduled etc within 24-48 hours. When I didn't hear back after a week, I called. I was told they would call me back on a certain day. They didn't. I called back a day or two after the day they said they'd call me and again they took down my information, had me repeat everything I had already faxed over on the forms and then said they would call me back and didn't. I called a third time (again waiting a day or two after the day they were supposed to call me) and went through the same process.

I finally received an email confirming dates and asking me to again reply with information that I had already given several times. They also requested that I call to give a deposit. I had replied to the email almost immediately and it's been a week and I still haven't heard back.

It's a little nerve wracking to be on this side of it so I can't imagine what fogdweller is going through right now.

I thought I had done all the research that I needed to but now I'm back on the fence kind of freaking myself out a little bit.

Does anyone know if PI has turned patients away from the surgery (or anyone for that matter?)? Part of me is skeptical of course, as we all should be, but I just have not come across any accounts of people being denied for the surgery because they either didn't have it or they weren't suitable.

I'd love to see some more accounts of people who have been to PI! I know it's tiring but detailed accounts are really appreciated. My significant other and I are film makers so hoping that I have enough energy, we'd like to document the process to share with others.

pollyanna wrote:Hi all...just got dates for Dr Arata at PI...and yes it is Valentine's Day!!
Q: has anybody used the travel agency they offer?
I'm tired and a little overwhelmed,but peaceful.
If anyone has questions or advice...love to hear it. Later...P

That's fantastic! I booked the flights and hotels myself, leaving only the car rental to contend with. I looked at the travel agency and they seem to offer a great service, right from picking you up at the airport. I don't mind making my own travel arrangements though so I didn't use them. You should use them though as a treat to yourself, it being Valentine's Day and all.

heartsandskulls wrote:I received my MRV/Consultation/Surgical Dates and it's coming up really soon.

I do worry about what fogdweller had mentioned about not being able to get a call back. According to their website it says you can get scheduled etc within 24-48 hours. When I didn't hear back after a week, I called. I was told they would call me back on a certain day. They didn't. I called back a day or two after the day they said they'd call me and again they took down my information, had me repeat everything I had already faxed over on the forms and then said they would call me back and didn't. I called a third time (again waiting a day or two after the day they were supposed to call me) and went through the same process.

I finally received an email confirming dates and asking me to again reply with information that I had already given several times. They also requested that I call to give a deposit. I had replied to the email almost immediately and it's been a week and I still haven't heard back.

It's a little nerve wracking to be on this side of it so I can't imagine what fogdweller is going through right now.

I thought I had done all the research that I needed to but now I'm back on the fence kind of freaking myself out a little bit.

Does anyone know if PI has turned patients away from the surgery (or anyone for that matter?)? Part of me is skeptical of course, as we all should be, but I just have not come across any accounts of people being denied for the surgery because they either didn't have it or they weren't suitable.

I'd love to see some more accounts of people who have been to PI! I know it's tiring but detailed accounts are really appreciated. My significant other and I are film makers so hoping that I have enough energy, we'd like to document the process to share with others.

I didn't have much problem with them about response times. I actually had signed up for Albany as a back up plan and they still haven't called for a date and that was months ago. I think it's a popular procedure this CCSVI treatment and not many clinics nearby that are doing it so it's the nature of the beast. Also, I think it was easier in my case since I already had an MRV and Haakle report from another clinic. I imagine that scheduling an MRV, consultation and procedure requires a lot of juggling. Juggling for our jugulars I guess.

Given fogdweller's difficulties, I wonder if it might be a good idea to schedule a follow up appointment while you are there? That's the PITA associated with not having the medical procedure locally. But I do think that scheduling a follow up appointment is a good idea.

As for being turned down, golly I hope not. In my case I have pictures and a report of a severely stenosed right jugular to go off of.

That's pretty cool though that you are going to film everything. When is your appointment?

Just a thought but why don`t you try to e-mail Dr. Arata directly and see what happens. His e-mail address is Dr.Arata@Pacificinterventional.com Perhaps this will get you a response.................

I agree with love bug...send 3 emails the 1st day....include your phone #.
then call Jessica 3times the next day......since you are obviously close to your date, this should work....it did for me. Some folks are on 3or4 lists elsewhere and this is complicating planning......P

I found out the delay in replies was caused by one of the staff being on vacation and "working remotely". I put the deposit down two days ago when I was able to get a staff member on the phone. My procedure is next week.

I am so nervous but as I write this, I am stuck in bed. My arms and legs feel like they are just hanging off my body. I feel as though I have aged more in the past 3 years than in the past 10 due to all of the changes from my MS.

I am trying to remain positive but not to get my hopes up too much, after all, we don't know for sure how many people have actually had the procedure done nor the results over the range of people.

I would just like to be able to put my hand on my leg or rub my skin when it's cold without feeling like I ran a cheese shredder over myself.

Jugular wrote:Given fogdweller's difficulties, I wonder if it might be a good idea to schedule a follow up appointment while you are there? That's the PITA associated with not having the medical procedure locally. But I do think that scheduling a follow up appointment is a good idea.

I think this is a very good idea.

I am getting more and more nervous. I have only a couple of days before my procedure.

One of the things that "worries" me is that from this board I've read that MRV's are expensive and almost "useless" as far as a diagnostic tool and that the dopplar is a much cheaper and more effective tool.

I'm just wondering why PI chooses to use the MRV and if it makes that much of a difference.

Heart... they use MRV because nobody in California has the skills yet to do the doppler. For $2500 for an MRV why use PI when you can get the real deal at Hubbards where you they have the skills. I had an MRV where they "used" the Haacke protocol, easy to say more time consuming to do, mine took 45 min and the report was 1 page and they certainly did not use a fraction of the Haacke protocol, but I had insurance so did not have to pay anything so I really did not care only needed it to justify the venogram, but if I had to pay $2500 I would use the Hubbards or go to another state for a doppler.

At the EuroMedic they do both - and a good thing in my case, since the doppler was ambiguous but the MRV showed an obvious problem. (In my brother's case the doppler alone would have been enough.) Then the procedure + venogram.

Don't worry about that part; at this point that money's not the important thing.

-d

I'm not concerned about the cost, just that the right test is being used.

It's easy to say "go to another state" but it's not like CCSVI treatment is located at every 7/11 out there. I just want to be sure that the tests being done are the right one.

Uhm Hubbard PI both are in California. I think from an MRV point of view Stanford and the Hubbards are where you will get the "right" MRV if you want California. Doppler would be outside of California.