Cece's turn

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

Postby Rokkit » Tue Mar 08, 2011 2:34 pm

Cece wrote:I am trying to remember how long Dr. Dake kept his patients on Coumadin, I can't off the top of my head.


I was on coumadin for 2 months. Plavix for 6 months.
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Postby AMJ » Tue Mar 08, 2011 6:08 pm

Cece wrote:

I mentioned energy a few posts up, it is on my mind because I've been lower in energy than I would've hoped, but now in the last few days it seems to be picking up. I am doing really, really well today. More things seem possible and more is getting done....


Great to hear, I hope each day brings you more and more energy!
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Postby CD » Tue Mar 08, 2011 10:10 pm

Rokkit wrote:
Cece wrote:I am trying to remember how long Dr. Dake kept his patients on Coumadin, I can't off the top of my head.


I was on coumadin for 2 months. Plavix for 6 months.


Thank you for that information Rokkit. I was curious too. :)

Cece, you left your thong in Brooklyn? 8O

I did the Coumadin (Warfarin) thing for three months, so I'm a big girl now and have graduated to 81 mg of Bayer Baby Aspirin for life. I had my US and consult. I am good to go. :D

No more Warfarin and blood tests for me. Yahoo! Everyone was so surprised with my improvements, just like my family was too, TG.
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Postby drsclafani » Wed Mar 09, 2011 7:41 am

CD wrote:Cece, you left your thong in Brooklyn? 8O



i had no part in that!
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Postby Cece » Wed Mar 09, 2011 12:08 pm

drsclafani wrote:
CD wrote:Cece, you left your thong in Brooklyn? 8O



i had no part in that!

This made me laugh! :wink: :lol:

CCSVIhusband, back on Feb 12th wrote:Thinking about you today cece ...

I can't even imagine you meeting Dr. Sclafani ... I'd imagine your husband was rather jealous ...

We keep this up, he might be.... :oops:
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Postby drsclafani » Wed Mar 09, 2011 7:00 pm

Cece wrote:
drsclafani wrote:
CD wrote:Cece, you left your thong in Brooklyn? 8O



i had no part in that!

This made me laugh! :wink: :lol:

CCSVIhusband, back on Feb 12th wrote:Thinking about you today cece ...

I can't even imagine you meeting Dr. Sclafani ... I'd imagine your husband was rather jealous ...

We keep this up, he might be.... :oops:


he is a great guy, full of love, caring and pride
a good father, i really enjoyed meeting him.
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Postby Cece » Thu Mar 10, 2011 9:08 pm

We have been married thirteen years and going strong. He is a great guy, thank you for the kind words. We both very much enjoyed meeting with you as well.

I was supposed to get a picture and I was too busy enjoying the time, then having the procedure, then marveling at the world afterwards, I completely neglected to get that picture.
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Postby Cece » Thu Mar 10, 2011 9:46 pm

CD wrote:I did the Coumadin (Warfarin) thing for three months, so I'm a big girl now and have graduated to 81 mg of Bayer Baby Aspirin for life. I had my US and consult. I am good to go. :D

No more Warfarin and blood tests for me. Yahoo! Everyone was so surprised with my improvements, just like my family was too, TG.
CD

Congrats, CD!! And you have had great improvements. It must be nice to be off of that Warfarin! The more I hear about it, the more I hope never to be on it.

I am taking a baby aspirin too, it seems a prudent thing to do. :)
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Postby Drury » Sat Mar 12, 2011 10:44 pm

Cece

Great to hear your improvements continue!

Soapdiva884

Hope things went well with John and look forward to updates. Glad that you were able to get slotted in at such short notice.

Thanks everyone for the kind words about my daughter. She has had a rough time with what seems to be a flare-up this past two weeks since her accident.
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Postby Cece » Sun Mar 13, 2011 7:59 am

Drury wrote:Thanks everyone for the kind words about my daughter. She has had a rough time with what seems to be a flare-up this past two weeks since her accident.

She is in my thoughts, Drury, I hope the flare-up settles quickly and that Dr. Sclafani is able to take care of her soon.
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Postby prairiegirl » Sun Mar 13, 2011 8:25 am

^Me, too. Sorry to hear of the flare. Take care, Drury. Hope things turn around for the better very soon.
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Postby Liberation » Mon Mar 14, 2011 12:32 pm

Nunzio wrote:Hi Cece, Blossom and CD,
thanks for your wishes which came to fruition.
I cannot imagine a more knowledgeable and thorough doctor than Dr. Sclafani. In fact, sorry to tell you CD, he did not find problem in all three areas; he found problems in all 4 areas and treated them.
As expected I had narrowing in my left IJV due to narrow valve which he dilated. Next he dilated my right hypoplastic IJV even though he did not give me much hope there.
Then he looked at my azygous vein where he found 3 problem areas which were dilated. Finally he looked at the iliac vein where I had an unusual problem where the vein was split in 2 segments with
blood being pushed toward the azygous vein using the iliac-lumbar vein as a collateral, so he dilated both segments to improve the flow.
The procedure lasted over four hours, not the 30 minute common in other places.
I am already experiencing some improvement , I can walk better and I have more strength in my right hand.


Nunzio,
I was happy to hear about your improvements after your procedure. :) I was also diagnosed with PPMS; even though, my own neurologist has never named it. I had my first procedure; however, they spent only 30 minutes on the procedure and dilated only my right IJV. As it has collapsed, I am looking for my second treatment somewhereelse. I am just wondering, if you are aware of any symptoms or signs that might indicate problems other than in the IJVs and azygos. I noticed that you had problems in the iliac vein as well. I guess this is something that can be examined only if they enter the left side, so most of the doctors like dr Sinan would not look at. What other veins did dr Sclafani examine in your case? I have already showed my images to dr Sinan and he told me that he would ballon and cut the right IJV valve and dilate the left valve and also the valve in the azygos. So, he saw problems in all three veins. I am afraid that I pay a lot again for my second procedure and some problem that is not checked may be present.
How long is the waiting list with dr Sclafani? Unfortunately, in my country, we have only state health insurance so it would not cover the CCSVI procedure; therefore, I must pay by cash.
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Postby Cece » Mon Mar 14, 2011 3:43 pm

I don't think there is much of a waiting list, for cash-paying patients, right now. Last month Vivavie reported getting in with less than a week's notice, iirc.

There are a number of patients who are all waiting on insurance credentialing to finish. What a headache and a heartache. So depending on how many patients are waiting on insurance, if the insurance clears, that could fill up his schedule?

It is unusual to have just one vein dilated; most patients have more than one. My own procedure at an hour and fifteen minutes is probably about average for how long these procedures take, at any doctor? Dr. Sclafani's tend to run long because he interrogates with IVUS. Thirty minutes is very short. I can only think of Dr. Mehta who does procedures that short (he has said he is concerned about the amount of contrast dye usage with the length of radiation exposure.)

We'll wait for Nunzio to find this question and reply too. :)

(I also started working on a one-month update to post here, but the short update is that I am doing well!!)
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Postby Liberation » Tue Mar 15, 2011 3:48 am

Cece wrote:I don't think there is much of a waiting list, for cash-paying patients, right now. Last month Vivavie reported getting in with less than a week's notice, iirc.

There are a number of patients who are all waiting on insurance credentialing to finish. What a headache and a heartache. So depending on how many patients are waiting on insurance, if the insurance clears, that could fill up his schedule?

It is unusual to have just one vein dilated; most patients have more than one. My own procedure at an hour and fifteen minutes is probably about average for how long these procedures take, at any doctor? Dr. Sclafani's tend to run long because he interrogates with IVUS. Thirty minutes is very short. I can only think of Dr. Mehta who does procedures that short (he has said he is concerned about the amount of contrast dye usage with the length of radiation exposure.)

We'll wait for Nunzio to find this question and reply too. :)

(I also started working on a one-month update to post here, but the short update is that I am doing well!!)

Hi Cece,
thank you for your response. I am really glad that you also show improvements after your treatment. It is good to hear that waiting list is not as long with dr Sclafani as it is in Europe. I waited almost half a year for my first treatment. As I have ppms I am more concerned about the veins that they check. It is a good thing that dr Sinan has already seen more problems on the images than they found during my first procedure. However, I am still of the opinion that it would be good if as many veins as possible could be checked upon. As far as I know dr Sclafani is the only doctor who does a thorough job by checking as many veins as it is possible. He seems to puts thoughts into what he is doing and not just doing a routine task. My only concern is the great distance as I am from Europe. Unfortunately, I have had problems with my legs during long distance flights in the last couple years since I have this disease. My foot got swollen and painful and it seemed like it got a thrombosis. When they checked it a few weeks later they did not find anything. The other thing is the follow up visits if neccessary. It would be good to have the place as close as it is possible.
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Postby Cece » Wed Mar 16, 2011 11:59 am

I am not as familiar with the places in Europe or I'd make suggestions.

Yes, getting everything checked seems crucial to me, especially in primary progressive MS. I can't say enough about his use of IVUS. I have a disk with my IVUS movie, it is something to see. Nunzio's procedure lasted over four hours, I don't think the good doctor was just wasting time there, there was just that much work to be done!
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