NY here we come.....

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

NY here we come.....

Postby allynz » Tue Jun 19, 2012 4:26 am

On July 10th my husband and I will be traveling from New Zealand to see Dr Sclafani - we are both nervous and excited and trying not to think too much about what the possibility of a positive outcome might mean for our lives.

We have told our GP who supports us but don't think we will be telling our neuro at this point as despite his cautious public statement about CCSVI he was less than supportive when we mentioned it at the time of my husband's formal diagnosis back in April.

Thanks to those that have ventured before us and shared their stories to help make this an option for us.
I'll keep you posted.
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Re: NY here we come.....

Postby DougL » Tue Jun 19, 2012 4:31 am

good luck.
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Re: NY here we come.....

Postby tiltawhirl » Tue Jun 19, 2012 9:52 am

Fantastic!

I wish you guys safe travels, and hope you are one of the very fortunate ones that see results.

Please keep us updated on your progress. :)
Hugs and best wishes from Canada!

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: NY here we come.....

Postby Cece » Tue Jun 19, 2012 11:21 am

I didn't know that your husband was newly diagnosed in April. What a year you must have had. I hope the treatment in Brooklyn turns everything around.
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Re: NY here we come.....

Postby allynz » Tue Jun 19, 2012 1:03 pm

Thanks CeCe - we've known for a long time - his first MRI was back in 2003 when Uhtov's Phenomenon was the diagnosis, he has been in slow decline ever since, we knew it was MS but plenty of Doctors and specialists said it wasn't, for various reasons we put off getting another MRI and a formal diagnosis until this year but when it came it was no surprise to us.
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Re: NY here we come.....

Postby NHE » Wed Jun 20, 2012 1:21 am

Allynz,
Best wishes to you in your travels. It's good that your husband's GP is supportive. Hopefully, you will be able to coordinate follow-up care through them.

NHE
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Re: NY here we come.....

Postby Kar1 » Wed Jun 20, 2012 7:30 pm

I just sent you a message but I can see you already have arranged things. Best of luck, hope everything goes really for you. Luv to hear hear how it went when you get back. Cheers
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Re: NY here we come.....

Postby jillMEnz » Thu Jun 21, 2012 4:26 am

You know I am thinking and "praying" (if an atheist can do such a thing) for you, and so is Al. Please report back when you are able. Anything I can help with meantime - please don't hesitate to ask. I mean that! Baby sitting anything. hugs to u xxxxx Jill
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Re: NY here we come.....

Postby MaggieMae » Thu Jun 21, 2012 3:00 pm

Dr. Sclafani is a wonderful person and doctor. My husband was treated by him last year. Hope all goes well.
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Re: NY here we come.....

Postby daniel » Sun Jun 24, 2012 4:46 am

Does anyone know what the average costs of testing/procedures done at Dr Sclafani are when you don't have insurance?

I was treated by Dr. Mehta in Albany in January 2011 for a jugular vein and azygous vein but my jugular had blocked up by the time of my checkup 3 months later and I've been thinking I might visit Dr. Sclafani as he seems really knowledge and helpful here in the forums...
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Re: NY here we come.....

Postby allynz » Sun Jun 24, 2012 6:47 am

daniel wrote:Does anyone know what the average costs of testing/procedures done at Dr Sclafani are when you don't have insurance?

I was treated by Dr. Mehta in Albany in January 2011 for a jugular vein and azygous vein but my jugular had blocked up by the time of my checkup 3 months later and I've been thinking I might visit Dr. Sclafani as he seems really knowledge and helpful here in the forums...



Sent you a PM.
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Re: NY here we come.....

Postby allynz » Thu Jul 12, 2012 12:18 am

Well we are here. It's 3am NY time - we arrived about 24hours ago and had a great first day in New York visiting the Rockerfeller Centre and Bryant Park, it's not as hot as we were expecting thankfully but the walking still took its toll. We went to sleep fine but are now awake with the time change coupling with nervousness about the ultrasound tomorrow making for a restless night.
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Re: NY here we come.....

Postby tiltawhirl » Thu Jul 12, 2012 12:49 am

allynz wrote:Well we are here. It's 3am NY time - we arrived about 24hours ago and had a great first day in New York visiting the Rockerfeller Centre and Bryant Park, it's not as hot as we were expecting thankfully but the walking still took its toll. We went to sleep fine but are now awake with the time change coupling with nervousness about the ultrasound tomorrow making for a restless night.



Yay! I'm glad you guys made it safe and sound from such a long journey! I am certain of two things for tomorrow:

1. The ultrasound will go fine.
2. Dr Sclafani will talk your ears off!(in a good way) :lol:

Please let us know how everything goes. All the best for a positive outcome. :)

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: NY here we come.....

Postby Robnl » Tue Jul 17, 2012 3:26 am

Any news yet?
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Re: NY here we come.....

Postby allynz » Tue Jul 17, 2012 5:42 am

Yes sorry i haven't written because your note was what got me through and your latest video is amazing. There is another Kiwi guy here and just two days after his op he jogged 5 blocks after getting off the train at the wrong stop. He ended up with a renal stent and it was his second round of ccsvi.

Anyway my husband had the procedure on Saturday was ok but it wasn't all smooth sailing. Several of his veins were perfect which is great, the right jugular was 90% closed and after some effort is now open and clear but the left jugular was 100% closed. They couldn't get the catheter in at all and when they went to do it a different way he had some kind of reaction - they aren't sure if it was allergic or anxiety but it wasn't great and they didn't want to push it so we needed to go back on Monday to try again. He slept most of the rest of the day and didn't really feel any different to when he went in but seemed to be a bit better when we went out on Sunday.


Monday was a fairly full on procedure. Dr Sclafani nearly gave up but he went back for one more shot and was successful. He said the whole vein is really bad and was collapsed in several places so now the blood is flowing but the vein is very small so who knows what the effect will be - we wait and see. He could only use a 8mm balloon - its 14mm on the other side. This was another 3.5hour long procedure.

From the Drs perspective he still thinks we are fine to fly on Thursday but we thought we should see how he is today and take it from there. He literally just got up a minute ago for the first time since we got back to the hotel after the op so really we don't know yet.
His neck is quite tender as for the second op they went in from the top and now he has entry points on both sides of his groin so I imagine it will be a few days before we can do much. The heat wave is back so I imagine we will be spending the day indoors but we are hoping to make it into Manhattan at some point as the trains and all the buildings have air-con, its just getting between places that will be interesting.

I'll write and update for the world in a day or two.
Last edited by allynz on Wed Jul 18, 2012 6:20 am, edited 1 time in total.
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