CCSVI treatment available in the U.S.!

Guider · Post by **Guider** » Tue Jul 27, 2010 5:22 pm

Trish,

You said it was ironic that he got his call after feeling as he did and experiencing the conversation with those people - I truly believe in 'timing', specifically God's timing and I am so pleased to read your post. That in itself would give you great hope and cause you joy.

Praying with you and others for the results your man needs.

Guider

Trish317 · Post by **Trish317** » Tue Jul 27, 2010 5:22 pm

Vivianne766 wrote:
Trish317 wrote:
Vivianne766 wrote:
...well that's great. That tells me that those of us who called earlier as in late May earl June, should have a app. before December.
... hopefully.
It's been a long painful wait for me and everything seems to be dead still.
WE GOT A DATE!!!!

Just thought I'd sneak that in there. lol! My darling man got the call today. His appointment is September 14.

I guess I don't need to say how happy I am. But it's still a little unreal. I found out while I was at work. He emailed me to tell me and it was the longest day of my life because I couldn't jump up and down screaming. lol!

Now I just need to figure out how to keep my hopes and expectations at a minimum. I know he feels like this is his last chance. He was diagnosed with PPMS in 2007. So, if anyone has some advice as to how to keep our hopes and expectations at a minimum, please let me know.
OMG I am so happy Trish.
Thank you for letting us know. I feel hopeful again.
I don't know why you want to keep your hopes and expectations to "min." !?
I'm wishing the "max. best" for you and us all.

Thank you, Viv! Don't lose hope. You'll hear something soon.

I want to keep my hopes and expectations to a minimum because my darling man has a very complicated medical history. But, if the truth be told, I'm VERY hopeful that he's going to see improvements.

Sending you good thoughts, Viv....

Trish317 · Post by **Trish317** » Tue Jul 27, 2010 5:34 pm

Guider wrote:Trish,

You said it was ironic that he got his call after feeling as he did and experiencing the conversation with those people - I truly believe in 'timing', specifically God's timing and I am so pleased to read your post. That in itself would give you great hope and cause you joy.

Praying with you and others for the results your man needs.

Guider

You're right, Guider. When we talked about it last night, I said "Yesterday (Sunday) you were ready to give up, and today you got the call." He said "Yes, it's ironic." I said "Honey, there's nothing ironic about it."

I don't believe in coincidence. I believe in synchronicity. Everything happens for a reason.

But, I have to admit, when he emailed me and told me what those people had said, there were lots of words in my response that would have to be deleted. lol! We'll just have to keep working to educate the people who are so uninformed.

TFau · Post by **TFau** » Tue Jul 27, 2010 6:38 pm

Hockeydad wrote:Gee I hope all is ok in Albany, I'm supposed to go in November!

Great Hockeydad! Do you mind sharing when you first contacted Dr. Siskin?

I hope we all get the call soon!

BCSailor · Post by **BCSailor** » Wed Jul 28, 2010 6:38 am

here is someone who was treated at albany

http://veinmusings.blogspot.com/

kc · Post by kc » Wed Jul 28, 2010 8:22 am

I was also treated in Albany but did not want to post here for fear of them being shut down. They were great out there, nurses, pre op people everyone.
Immediately, after being ballooned, I opened my eyes and all the colors were soo vivid. Especially the blues and reds. I was emotional for a few days afterwards I think due to the conscious sedatation. My feet were warm that night.
It has been 3 weeks now and overall my energy, movement, and sense of clarity and organization has improved. My blood sugar (low) is much better. Everything is better.

Before I was liberated eveytime I saw this post on the top my heart would sink. That is why I never, before now, posted about my tx.

Today I had a local doppler done. All she could tell me was there was flow. She had no way of measuring the exact flow. (So she said)

There has been times I have been convinced that I have restenosed, but then again there r times when I KNOW I haven't. Actually I think I have a little but not 100%.

I went to my local gp who handed me back my cd with my venogram images (they give u one after the procedure). I was devastaTED and thought "How ignorant can u be?" I also was at a grad party last weekend with a woman who has ms but was VERY skeptical of ccsvi. She told me the ms society is keeping her up to date on it. How ignorant for her and worse how sad!!! She had soo much trust in the ms society and did not want to hear it from me. I think her ms has affected her mentally. Luckily I am very chatty and overspoke her.

so keep your chins up!!!

ccsvi is the real deal
kc

bmk1234 · Post by **bmk1234** » Wed Jul 28, 2010 8:59 am

kc wrote: There has been times I have been convinced that I have restenosed, but then again there r times when I KNOW I haven't. Actually I think I have a little but not 100%.

kc

I agree 100%, at times it's hard to tell what has changed. Sometimes it's better, sometimes it appears nothing has changed. So that is why I say you need months to determine what your true benefits will be. If you try to determine on a daily basis, it could get frustrating, you could go crazy.

Time will tell.
I'm doing well.
bmk

Cece · Post by **Cece** » Thu Jul 29, 2010 4:30 pm

(The link to the list no longer works.)

suzq77 · Post by **suzq77** » Fri Jul 30, 2010 6:48 am

My doctor is on that list and did not know his name was going to be publicly shared. I have not publicly named him as a doctor that treats. He DOES NOT have IRB approval. If you contact him, please please please be discreet.

Also, if anyone has posted his name in a list of treating doctors, please remove it; he DID NOT ok that.

Thank you.

Cece · Post by **Cece** » Fri Jul 30, 2010 8:37 am

suzq77, do you think your doctor would want to be removed from the list?

suzq77 · Post by **suzq77** » Fri Jul 30, 2010 8:40 am

Yes. 100%.

Denise Manley took the list down from fb but I don't know who posted it here.

TFau · Post by **TFau** » Fri Jul 30, 2010 9:25 am

Sorry to interrupt this conversation, but I was wondering if anyone knows where the waiting list is for Dr. Siskin - for example, are they now calling people who made their first call in early May?

Cece · Post by **Cece** » Fri Jul 30, 2010 9:25 am

suzq77 wrote:Yes. 100%.

Denise Manley took the list down from fb but I don't know who posted it here.

*innocent whistling*

Vivianne766 · Post by **Vivianne766** » Fri Jul 30, 2010 10:27 am

TFau wrote:Sorry to interrupt this conversation, but I was wondering if anyone knows where the waiting list is for Dr. Siskin - for example, are they now calling people who made their first call in early May?

I think people`who made the first call in the 3rd week of May have a date by now. ( I hope ! )

JCB · Post by **JCB** » Fri Jul 30, 2010 10:38 am

I believe you are correct Vivianne766, I made the call around then and am scheduled for Sept. 13th

. Can't wait.