LIBERATION TODAY
Posted: Mon Jun 28, 2010 2:52 pm
So, this is the former mshusband ... I guess by my new screen-name you can imagine the outcome of today's liberation on the wife.
A few thoughts, before I get into the nitty gritty ...
The lead-up to this procedure is the most stressful thing I could imagine. Questions abound;
Does she have CCSVI?
Is it going to be treatable?
What if she doesn't have CCSVI - is she that 5%?
Is THIS doctor going to be the best option?
Will he check all the right veins and know what to look for INSIDE those veins?
Will he stent?
What if he doesn't stent?
SHOULD I EVEN THINK ABOUT CCSVI, BECAUSE WHAT IF SHE'S ON THE TABLE AND A LAWYER WALKS IN?
Should I mention CCSVI on here because who knows who's going out looking to get this doctor shut down.
We wouldn't even talk about it to ourselves the last few days until the procedure was done ...
... and a million others!
So ... we had the procedure (starting at 9AM this morning) in the US ... 100% covered by insurance (as I said before). The doctor has now done many procedures - I believe he's probably the 3rd most experienced doctor in the US now - and his name is not out there publicly (never has been and that's how it's going to stay) ... though he has said he wouldn't mind if it was because he "believes in CCSVI, and it's not a hard procedure". So I'm not putting his name out there either ...
NOW FOR THE PROCEDURE UPDATE:
Wifey DID HAVE CCSVI.
More interestingly, we were one of the first many to contact Dr. Sclafani. We contacted him way back in February before his name was out there ... we were offered an early March appointment, but being newly MS diagnosed, the wife wanted a summer appointment for this because she gets summers off (psychologist for a school) ... but then Dr. Sclafani got shut down so we all know that happened.
WHO KNEW and we're REALLY LUCKY we didn't take that earlier appointment with him!!!
Turns out the wife had one of the worst cases of May-Thurner Syndrome the doctor who performed the procedure had ever seen. (See - Dr. Sclafani's visit to Italy paid off. We contacted the doctor last week about entering from the left leg for just that reason ... he was happy to oblige and it paid off - he said he would normally have gone from the right too if not for our request).
Also, the azygous had a "web" that basically shut all flow through there as well! Coupled with the May-Thurner that is the worst case scenario as the blood doesn't drain from the legs properly, and is forced into the azygous system ... but with the azygous system closed it has nowhere to go! So now both of those are flowing properly!
The jugulars were narrowed, but not clinically significant (and he said all flow was proper) ... so they weren't touched for now - though he said that in a few months for follow-up he'll re-check.
The good news? Since the wife was diagnosed with May-Thurner ... we now can follow-up with ANY vascular surgeon or IR anywhere ... because that is NOT CCSVI related (even though it is related in her case). So we did do some travel for our procedure - but now for follow-up will not have to because our hospital wasn't necessarily interested in CCSVI - but now we know of the other problem.
As for miracle on the table benefits ... we didn't see them. She was pretty zonked out (she asked for pain meds and muscle relaxers) - so she is kind of loopy. Her color was better as soon as I saw her - but that's all I've seen so far. Keep in mind we just got back to the hotel, and she is now asleep!
On a side note, the doctor checked MANY MANY veins (not just CCSVI veins) ... and the procedure took 4.5 hours. I'm very surprised that was the case. I though everyone else said 45 minutes. So 4.5 hours is crazy.
We only got balloons, but he said if there is re-stenosis at follow-up, stents are going in because they are safe in both the illiac and azygous. He even said they are in the left jugular, but is more cautious with that. (He did do a stenting procedure last week for the first time in the azygous - but has talked about them with all his patients).
He isn't a Zamboni-follower necessarily by any means, but knows our great Dr. Sclafani (actually used to work with him) and has been in contact with him regarding CCSVI throughout.
Am I missing anything?
Like I said, the wife's sleeping so I can't get a good feel for what's going on ... I think the 4.5 hour procedure caught both of us by surprise and neither of us slept particularly well last night.
The good news, obviously, is CCSVI was a major factor in her MS (along with May-Thurner).
The doctor said if both of those weren't caught as soon after diagnosis for her as they were ... it would have been bad because the flow was basically restricted on both ends ... and no-way around.
Thank goodness for Dr. Sclafani, Dr. Zamboni and their May-Thurner new information!
Any questions, please ask I know I'm forgetting a lot!
*EDIT*
A few other things ... he also did some work in the hemi-azygous (we haven't heard anyone else having anything done in there yet - so a first there). AND did some work on the vertebrals ...
It's been such a whirlwind last 10 hours ... I know I'm missing a ton.
A few thoughts, before I get into the nitty gritty ...
The lead-up to this procedure is the most stressful thing I could imagine. Questions abound;
Does she have CCSVI?
Is it going to be treatable?
What if she doesn't have CCSVI - is she that 5%?
Is THIS doctor going to be the best option?
Will he check all the right veins and know what to look for INSIDE those veins?
Will he stent?
What if he doesn't stent?
SHOULD I EVEN THINK ABOUT CCSVI, BECAUSE WHAT IF SHE'S ON THE TABLE AND A LAWYER WALKS IN?
Should I mention CCSVI on here because who knows who's going out looking to get this doctor shut down.
We wouldn't even talk about it to ourselves the last few days until the procedure was done ...
... and a million others!
So ... we had the procedure (starting at 9AM this morning) in the US ... 100% covered by insurance (as I said before). The doctor has now done many procedures - I believe he's probably the 3rd most experienced doctor in the US now - and his name is not out there publicly (never has been and that's how it's going to stay) ... though he has said he wouldn't mind if it was because he "believes in CCSVI, and it's not a hard procedure". So I'm not putting his name out there either ...
NOW FOR THE PROCEDURE UPDATE:
Wifey DID HAVE CCSVI.
More interestingly, we were one of the first many to contact Dr. Sclafani. We contacted him way back in February before his name was out there ... we were offered an early March appointment, but being newly MS diagnosed, the wife wanted a summer appointment for this because she gets summers off (psychologist for a school) ... but then Dr. Sclafani got shut down so we all know that happened.
WHO KNEW and we're REALLY LUCKY we didn't take that earlier appointment with him!!!
Turns out the wife had one of the worst cases of May-Thurner Syndrome the doctor who performed the procedure had ever seen. (See - Dr. Sclafani's visit to Italy paid off. We contacted the doctor last week about entering from the left leg for just that reason ... he was happy to oblige and it paid off - he said he would normally have gone from the right too if not for our request).
Also, the azygous had a "web" that basically shut all flow through there as well! Coupled with the May-Thurner that is the worst case scenario as the blood doesn't drain from the legs properly, and is forced into the azygous system ... but with the azygous system closed it has nowhere to go! So now both of those are flowing properly!
The jugulars were narrowed, but not clinically significant (and he said all flow was proper) ... so they weren't touched for now - though he said that in a few months for follow-up he'll re-check.
The good news? Since the wife was diagnosed with May-Thurner ... we now can follow-up with ANY vascular surgeon or IR anywhere ... because that is NOT CCSVI related (even though it is related in her case). So we did do some travel for our procedure - but now for follow-up will not have to because our hospital wasn't necessarily interested in CCSVI - but now we know of the other problem.
As for miracle on the table benefits ... we didn't see them. She was pretty zonked out (she asked for pain meds and muscle relaxers) - so she is kind of loopy. Her color was better as soon as I saw her - but that's all I've seen so far. Keep in mind we just got back to the hotel, and she is now asleep!
On a side note, the doctor checked MANY MANY veins (not just CCSVI veins) ... and the procedure took 4.5 hours. I'm very surprised that was the case. I though everyone else said 45 minutes. So 4.5 hours is crazy.
We only got balloons, but he said if there is re-stenosis at follow-up, stents are going in because they are safe in both the illiac and azygous. He even said they are in the left jugular, but is more cautious with that. (He did do a stenting procedure last week for the first time in the azygous - but has talked about them with all his patients).
He isn't a Zamboni-follower necessarily by any means, but knows our great Dr. Sclafani (actually used to work with him) and has been in contact with him regarding CCSVI throughout.
Am I missing anything?
Like I said, the wife's sleeping so I can't get a good feel for what's going on ... I think the 4.5 hour procedure caught both of us by surprise and neither of us slept particularly well last night.
The good news, obviously, is CCSVI was a major factor in her MS (along with May-Thurner).
The doctor said if both of those weren't caught as soon after diagnosis for her as they were ... it would have been bad because the flow was basically restricted on both ends ... and no-way around.
Thank goodness for Dr. Sclafani, Dr. Zamboni and their May-Thurner new information!
Any questions, please ask I know I'm forgetting a lot!
*EDIT*
A few other things ... he also did some work in the hemi-azygous (we haven't heard anyone else having anything done in there yet - so a first there). AND did some work on the vertebrals ...
It's been such a whirlwind last 10 hours ... I know I'm missing a ton.
