CCSVI - Aussie Action!

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

Postby taxi » Mon Mar 08, 2010 1:02 am

adolfo, this is wonderful news! the fatigue and waking up exhausted thing is our hope for katzi's semi immediate relief from the op next tuesday... the fatigue is awful, especially with a one year old to look after. also hoping that the symptoms of her current relapse will reverse quickly (skin pain and numbness)... am very interested on so many levels.

so it's really great to hear that you have seen improvement. it's weird how the MS community is full of these stories about how it's "untested" and yet almost everyone I have read about has got a similar story to tell.
User avatar
taxi
Family Member
 
Posts: 25
Joined: Sat Jan 16, 2010 4:00 pm
Location: Melbourne, Australia

Advertisement

Wheelchair Kamikaze - Marc and his venogram story

Postby avantitech » Mon Mar 08, 2010 1:37 am

Folks, I was so happy to hear that Marc is also undergoing a similar procedure to ours, here's copy of the story from his site - it's a good read and shows support is growing from mainstream interventional radiologists:
*******************************************************
This Wednesday, March 10, I'm scheduled to undergo a diagnostic venogram, looking for stenosis (narrowing) and/or other abnormalities in my azygos and jugular veins. If any such anomalies are found, they will be addressed via a balloon procedure. The venogram itself involves feeding a catheter from a vein in my upper thigh, through my vascular system, to the veins associated with the central nervous system. In the parlance of CCSVI, this is known as the "Liberation Procedure". (For info on CCSVI, click here)

The procedure will be performed at Kings County Hospital in Brooklyn, New York, by Dr. Salvatore J. A. Sclafani, the Chief of Radiology of the facility. He's also Professor and Chairman of Radiology at the SUNY Downstate Medical School. Dr. Sclafani has a long history of innovation in the field of interventional radiology, and is excited to be at the vanguard of CCSVI research and treatment. He attended the recent CCSVI conference in Hamilton, Ontario, along with all of the acknowledged experts in the field, including Dr. Paolo Zamboni, who developed the CCSVI hypothesis. Dr. Sclafani continues to regularly consult with Dr. Zamboni.

I'm hopeful that the procedure will prove to be of benefit, but I'm also trying to keep in mind the realities of my situation. It's important to understand that my illness is highly atypical. There's much question about my diagnosis, and it's quite likely that what is causing my neurodegeneration is not MS.

The neuro immunology team at the National Institutes of Health has examined me extensively, and has concluded that my disease does not fit any of the diagnostic criteria that are required to label my condition Multiple Sclerosis. They aren't sure what I do have, but one of the possibilities they've talked about is that my disease may be primarily vascular in nature, since a CT venogram done this summer did reveal stenosis very high up in my left internal jugular, unfortunately in a spot that will be difficult to fix. However, Dr. Zamboni has recently expressed the opinion that stenosis high in the jugulars is often secondary to stenosis found lower in the vein, and that addressing the lower stenosis often opens up the upper problem as well.

My primary neurologist here in New York is less convinced that I don't have MS, but agrees that whatever disease afflicts me is highly atypical. I have only one significant lesion, at the very base of my brainstem, which has not changed in size or appearance in the nine years that I've been getting regular MRI imaging. My spinal fluid is clear of O-bands or other evidence of inflammation, and my clinical presentation is at odds with the results of my diagnostic testing. I do have evidence of "autoimmune activity", such as Hashimoto’s Thyroiditis, and some unexplained episodes in my medical history.

As a result of this lack of clarity regarding my diagnosis, Dr. Sclafani and I are unsure as to what Wednesday's venogram will reveal, or that addressing any problems that do show up will have any beneficial impact at all on my condition. If I don't have MS, then the CCSVI theory doesn't even apply to me. However, my disease progression continues unabated, and since I already know that I have stenosis in my CNS venous anatomy, it makes sense to further investigate the possibility that vascular problems may be playing a part in my illness.

Thanks to the diligence and hard work of a very small group of grassroots activist MS patients, who relentlessly sought out physicians who would pick up the CCSVI gauntlet, Dr. Sclafani agreed to look at the available evidence, and upon doing so became convinced that the CCSVI theory has merit and warrants serious investigation. After much study and consideration, he's recently begun performing catheter venogram procedures on MS patients, and has found a high correlation between MS and CNS venous abnormalities. He's addressed these abnormalities using balloon angioplasty, to gently force open the azygos and/or jugular veins of his patients.

I first met with Dr. Sclafani about six weeks ago, and he devoted over three hours to consulting with my wife and me. After first being examined by the hospital’s neurologist, I sat down with Dr. Sclafani to go over the results of the CT venogram that had been done this past summer. The good doctor carefully examined dozens of the images contained in the scan, explaining what he saw in each one to Karen and me.

Since my diagnosis, I've met with some of the most renowned doctors in the land, but have encountered few as empathetic and considerate as Dr. Sclafani. Rather than being talked to, I felt I was being talked with, and Dr. Sclafani responded to all of my concerns and unhesitatingly voiced a few of his own. He was scheduled to go to the Hamilton CCSVI symposium about a week after my appointment with him, and we decided to put off making any treatment decisions until after he attended the symposium and had a chance to consult with the assembled doctors.

Our consultation lasted far longer than had been anticipated, and the doctor’s staff thoughtfully had a car service waiting to take my wife and I home when it ended. Dr. Sclafani personally saw my wife and me out of the facility, then helped me into the car. Other than my primary neurologist, Dr. Saud Sadiq, who is also quite exceptional, I don't know many other doctors who would exhibit such down to earth humanity.

After the Hamilton symposium, Dr. Sclafani contacted me and told me he thought we should move forward with the venogram. His assistant Holly attentively handled all the arrangements, and this past Thursday I went back to Kings County for pre-op testing. Thus far, every step of this process has been handled in a professional, timely, and even (gasp!) cheerful manner. Hopefully, the actual procedure will go just as smoothly...

If I were recently diagnosed, or my symptom profile was more mild, I think I'd wait to see what the coming wave of CCSVI research reveals before undergoing this procedure. The speed with which my disease is progressing, though, makes it not too hard to envision the Wheelchair Kamikaze becoming the Mattress Kamikaze in the foreseeable future, and I'm determined to do everything I possibly can to cut that eventuality off at the knees. Upon my diagnosis, just about seven years ago, I vowed that if this son of a bitch was going to take me down, it was going to take me down fighting, all guns blazing, both fists bloodied, and with bite marks firmly implanted in its skull. This is war, and surrender is not an option.

For those interested in contacting Dr. Sclafani, please e-mail his assistant Holly Barr (Holly.Barr@downstate.edu).
*******************************************************
http://www.wheelchairkamikaze.com/2010/ ... ccsvi.html
User avatar
avantitech
Family Member
 
Posts: 79
Joined: Mon Oct 26, 2009 4:00 pm
Location: Melbourne - Australia

Postby CureOrBust » Mon Mar 08, 2010 4:54 am

I visited one of my neuro's today. He said that DR Zivadinov was in Australia recently, and presented the results from the first part of the study at Buffalo. His impression was that the results were not that "well received". Doh!

I also received a phone call from the radiologist from Blacktown Hospital. He said he viewed the image I sent to the radiographers of the narrowing of my Jugular, and gave me the exact measurements. The diameter of the vein goes from about 9mm down to 4.5mm. I asked if it was common, and he said it was common for this to occur around that artery. He was very interested in this new theory, so I am sure he would be happy to see more patients to investigate it. It sounded like no-one else has managed to get a referral? He was very helpful.

The above radiologist also worked closely with Dr Houang (ie the one at Edgecliff), so, I dropped off my scans from Blacktown at Edgecliff today, as I have a scan scheduled for Friday. When they were checking my appointment, I quickly scanned over their diary and did not see any other appointments for an MRV. Am I the only one with an appointment at this stage?

I am a little worried that i am a bad "ambassador" for this cause, as I do not appear to have an obvious venous issue.
User avatar
CureOrBust
Family Elder
 
Posts: 2880
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby avantitech » Mon Mar 08, 2010 6:00 am

Folks,

Here's the link to the images from the 4th of March venogram.

http://www.voyager2.com.au/index.php?op ... &Itemid=12

Cheers
..Adolfo
User avatar
avantitech
Family Member
 
Posts: 79
Joined: Mon Oct 26, 2009 4:00 pm
Location: Melbourne - Australia

Postby elaine » Mon Mar 08, 2010 4:59 pm

wow these picture's are amazing
User avatar
elaine
Family Member
 
Posts: 85
Joined: Thu Dec 18, 2003 4:00 pm

Postby Downunder » Mon Mar 08, 2010 7:03 pm

I am seriously ******ed off.
I just had to call my neuro's office to change an appointment. I was to see him the day after my procedure and thought it would be better to see him a month after.

Anyway, I ended up talking to his nurse. She said she thought I was very brave undergoing this major surgery as people in Australia have died from this. (What??). She said dozens of people have had this major surgery in Australia, flying under the radar (What???) and it hasn't worked for them (WHAT???). Plus they have NEVER do angioplasty on veins, only arteries. (WHAT???).

I tried to tell her the facts, only one person has died worldwide, it's just an angioplasty, they do this everyday, etc, but she just kept talking over me.

This is what we're up against. I'm livid.

But, as in the words of 'cheer' .... breath In and ouuuuutttttttttt!!
User avatar
Downunder
Family Member
 
Posts: 89
Joined: Mon Dec 21, 2009 4:00 pm
Location: Melbourne, Australia

Postby friday_fc » Mon Mar 08, 2010 7:11 pm

Downunder wrote:I am seriously ******ed off.
I just had to call my neuro's office to change an appointment. I was to see him the day after my procedure and thought it would be better to see him a month after.

Anyway, I ended up talking to his nurse. She said she thought I was very brave undergoing this major surgery as people in Australia have died from this. (What??). She said dozens of people have had this major surgery in Australia, flying under the radar (What???) and it hasn't worked for them (WHAT???). Plus they have NEVER do angioplasty on veins, only arteries. (WHAT???).

I tried to tell her the facts, only one person has died worldwide, it's just an angioplasty, they do this everyday, etc, but she just kept talking over me.

This is what we're up against. I'm livid.

But, as in the words of 'cheer' .... breath In and ouuuuutttttttttt!!


WTF planet is she on?? So I guess this secretary EXTRAORDINNAIRE is telling other MSers this giant lie and scaring them off - deliberate? smells off to me!
User avatar
friday_fc
Family Member
 
Posts: 33
Joined: Fri Nov 27, 2009 4:00 pm

Postby Salvatore24 » Mon Mar 08, 2010 7:30 pm

Downunder wrote:I am seriously ******ed off.
I just had to call my neuro's office to change an appointment. I was to see him the day after my procedure and thought it would be better to see him a month after.

Anyway, I ended up talking to his nurse. She said she thought I was very brave undergoing this major surgery as people in Australia have died from this. (What??). She said dozens of people have had this major surgery in Australia, flying under the radar (What???) and it hasn't worked for them (WHAT???). Plus they have NEVER do angioplasty on veins, only arteries. (WHAT???).

I tried to tell her the facts, only one person has died worldwide, it's just an angioplasty, they do this everyday, etc, but she just kept talking over me.

This is what we're up against. I'm livid.

But, as in the words of 'cheer' .... breath In and ouuuuutttttttttt!!


I'm sorry but LOL!

Your best bet would be to, not ignore her, but don't get into a p!$$ing contest when you deal with her. Obviously she has heard of the one death, and blown it out of proportion.
User avatar
Salvatore24
Family Elder
 
Posts: 109
Joined: Sun Nov 29, 2009 4:00 pm
Location: Melbourne, Australia

some cheek

Postby hwebb » Mon Mar 08, 2010 7:37 pm

I wouldnt worry too much Jennifer - there are lots of "dumb-asses" in the medical community. I remember having similar conversations with my neuro and the MS nurses at RMH 6 months ago - regarding vitamin D deficiency. I had independently gone and had my vitamin d level tested...then done some research on the web and concluded it was safe to take a vitamin D megadose to get my vitamin d up to normal levels. The Neuro was alarmed...as was the MS nurse. They cautioned me, and said I was wasting my time and jeopardising my safety. Now, the importance of maintaining appropriate vitamin D levels and taking a megadose is actually recommended by MS Australia!

If I encountered that receptionist - I probably would have asked her why she was answering phones for a living given she knew so much about vacular surgery :)

Helen
User avatar
hwebb
Family Elder
 
Posts: 356
Joined: Thu Nov 26, 2009 4:00 pm
Location: Melbourne, Australia

Warning - break only in case of stupidity

Postby avantitech » Mon Mar 08, 2010 9:43 pm

That would p*** me :evil: off too, Jennifer.
Ditto here - Helen
A Royal wave to the RMH MS Clinic please.

.....breathe in 8O
.......breathe out :o

Folks why should the facts get in the way of a good story?

People can we please try to drum up some business for the poor old (handsomely rewarded with plenty of kickback dosh) private neurologists?

They will have more time on their hands than usual. :oops:
User avatar
avantitech
Family Member
 
Posts: 79
Joined: Mon Oct 26, 2009 4:00 pm
Location: Melbourne - Australia

Postby Val1964 » Mon Mar 08, 2010 10:01 pm

Hi Everyone ,
I am so excited.. I am scheduled for a catheter venogram :lol: and if I have a stenosis, to do the angioplasty at the same time. On April 13th 8;00 AM in Melbourne yea :) :)
User avatar
Val1964
Family Member
 
Posts: 39
Joined: Sat Jan 09, 2010 4:00 pm
Location: Queensland Australia

bring your brolly

Postby hwebb » Mon Mar 08, 2010 10:52 pm

bring your brolly Val - it's been awfully wet down here :)

but also bring your credit card - hopefully with your new found energy levels you might want to hit the shops. V.good shopping in Melbourne :)

Helen
User avatar
hwebb
Family Elder
 
Posts: 356
Joined: Thu Nov 26, 2009 4:00 pm
Location: Melbourne, Australia

speaking of neuros

Postby hwebb » Mon Mar 08, 2010 10:54 pm

speaking of neuros...does anyone have a good one here in Melbourne? There seem to be quite a few good ones in WA....but not sure I've found a great one in Melb yet. Looking for a recommendation. PM me if you're happy with your neuro

Helen
User avatar
hwebb
Family Elder
 
Posts: 356
Joined: Thu Nov 26, 2009 4:00 pm
Location: Melbourne, Australia

Postby friday_fc » Mon Mar 08, 2010 11:12 pm

msra's Update followig Prof Robert Zivadinov recent visit to Sydney, Australia

http://www.msra.org.au/news-media/news.php#Buffalo
User avatar
friday_fc
Family Member
 
Posts: 33
Joined: Fri Nov 27, 2009 4:00 pm

Postby avantitech » Tue Mar 09, 2010 2:22 am

Wishing you all the best for Thursday Kerri!!
User avatar
avantitech
Family Member
 
Posts: 79
Joined: Mon Oct 26, 2009 4:00 pm
Location: Melbourne - Australia

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users