DrSclafani answers some questions

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

Postby Cece » Wed Jul 07, 2010 2:05 pm

Lyon, I don't feel that is necessary. Feel free to read my statement as being generally that, in MS, damage to brains and spinal cords occurs over time.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Lyon » Wed Jul 07, 2010 2:12 pm

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Postby fogdweller » Wed Jul 07, 2010 2:17 pm

Lyon wrote:
Cece wrote:Lyon, I don't feel that is necessary. Feel free to read my statement as being generally that, in MS, damage to brains and spinal cords occurs over time.
That's all well and good but the point is that you were as much as saying that the damage wouldn't be going on with "liberation".


I think that is the whole point of this CCSVI debate. I couldn't agree more that we need to do studies, studies studies and learn as much as we can. However, some of us are probably not candidates for subjects. Also the studies are being blocked at every turn. I have been trying to get into a study since Novenmber, and right now I don't even know of any going on!!!! Hoiw frustrating is that.
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Postby LadyGazelle » Wed Jul 07, 2010 2:35 pm

Obviously due to the long history and high numbers of false negatives and positives among people with MS, MRV and Doppler shouldn't be considered accurate enough but results from large scale venous catheter inspection among controls would be acceptable.

I just had my MRV and won't get the results until tomorrow. However, they chose NOT to use contrast dye. I gave them a message that Dr. Sclafani recommeds the catheter venagram - so maybe that's why they decided not to use the dye this time. The girl that pushed me in the wheel chair to the diagnostic imaging dept. said they have very good equipment where the dye shows ALL the veins and maybe it isn't necessary. I'm hoping it's because they know that the radioactive dye could be next.

Now, if the questionable inverted valves were seen to be unquestionable, what will the catheter inspection find that they don't already know? I think if that is what they suggest next, then it's because they want to fix it... Liberation Treatment to you and me... heh heh :lol:

But if my doc tells me tomorrow the IR found nothing ... not going to think about it yet. It's my birthday tomorrow and I want to be pleasantly surprised. :o
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This is what CCSVI Calgary Proposed and was turned down

Postby Gordon » Wed Jul 07, 2010 2:41 pm

CCSVI Calgary’s requests are simple.
1. Full Scanning immediately for CCSVI using the most accurate process possible.
2. If CCSVI is detected, then angioplasty treatment should be done.
3. Follow-up angioplasty treatment if restenosis occurs.
4. Investigation of the stenting procedures that are being used in Poland for treatment of CCSVI.
Priorities are to be given to those that need treatment immediately as Dr. Paolo Zamboni recommended on a compassionate basis. Time is of the essence. People are going blind, loosing bodily functions, becoming crippled and dying at a far too young age.
1
CCSVI Calgary is proposing
To work with the Alberta government to commission a formal self funded treatment study of Dr. Zamboni’s liberation procedure. This test is to be fast tracked and based on the following.
1. Send a team of four Surgeons and Interventional Radiologists to Italy and Poland immediately. May 2010.
2. In parallel establish testing protocol, before, during and after the surgery.
3. Start treatments as soon as they are back from their trip. Again, time is of the essence. People are dying. - June 2010.
Funding
Funding will come from the patients of CCSVI Calgary. CCSVI Calgary will raise 250 K to 500 K to fund the tests and treatment. The patients that fund the test are to get the treatment. They all have an excellent documented history of the progress of their disease. Placebo effect is inconsequential. Time is running out for many of us.
This is a tremendous opportunity for the government of Alberta to show to its Canadian citizens and the world that Canada does not sit around and wait, but instead, acts to work with the patients to solve one of the most debilitating mysteries in medical history.
We can no longer sit idle and let one set of Doctors argue with another set of Doctors, nor can we as MS patients, friends and family argue and complain. Enough is enough.
We want to work together as a team immediately. Patients and doctors alike must set aside egos and anger.
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Postby Lyon » Wed Jul 07, 2010 2:47 pm

..
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Postby Cece » Wed Jul 07, 2010 3:59 pm

drsclafani wrote:
Rokkit wrote:Dr Sclafani, I am wondering if you have done any looking in the lumbar plexus area yet. Dr Zamboni has mentioned a problem in some PPMS patients regarding veins down there that have never developed at all, thus there is no way to treat. What do you think about this problem and have you seen it yet?


I have not really focused on lumbar veins yet. I have seen some abnormal veins there but not complete absence of these veins.
I think that the drainage of the lower spine is very diffierent from the upper spine and am studying this area more closely to answer someone's question but I don't want to speak about this yet

Found this way back on March 19th. Rokkit, well done. How did you know about Zamboni's interest in the lumbar veins? He must've mentioned it in an interview sometime? Makes me wonder what else someone here knows that could be of great use like this!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Algis » Thu Jul 08, 2010 6:08 am

Doctor; a quick question if I may:

Up to where is it safe/necessary to balloon (or stent) veins? I have seen a probe catheter up to the transverse sinus; but is it usual?

Thanks :)
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Postby CureOrBust » Thu Jul 08, 2010 6:18 am

Lyon, read the thread title, then get a life.
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Postby Rokkit » Thu Jul 08, 2010 7:23 am

Cece wrote:Found this way back on March 19th. Rokkit, well done. How did you know about Zamboni's interest in the lumbar veins? He must've mentioned it in an interview sometime? Makes me wonder what else someone here knows that could be of great use like this!

Dr. Z mentioned it in one of the W5 interviews and I'm pretty sure he talks about it in his liberation study paper when explaining the QOL outcomes for PPMS. I'm looking forward to Dr. Sclafani's investigations in that area. True, if it's agenesis then probably nothing can be done about it. OTOH, if we investigate enough maybe there are other issues that can be fixed. For example, CCSVIHusband's report about May Thurner. (Now if I can just get CCSVIHusband to give me the name of that Dr. :D)

Honestly, Dr. Sclafani's realization that the venogram should be done from the left may open up a brave new world for PPMS. There weren't very many PPMSers in Dr. Zamboni's venogram study so I'd sure like to see Dr. Sclafani turned loose on a whole bunch of us. Who knows what new and fixable problems might be discovered. I wonder if Simka has done any from the left or plans to.
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Postby LadyGazelle » Thu Jul 08, 2010 1:53 pm

Dr. Sclafani

No results from the MRV yesterday, but if they confirm tomorrow that I have inverted valves in both jugulars, and perhaps stenosis elsewhere, they don't know what to do.

Should I contact someone in Buffalo with the doppler and MRV? They didn't use a contrast dye even though I gave them Zamboni's protocols. Plus I told them before the MRV that you said a catheter venogram is necessary.

I feel like I'm pushing a string!

The diagnostic imaging director said, "A CT scan shows the veins clearly but that's not what I wanted and they won't know what to do because they have no experience with this."

I'll just take my CDs of the doppler and the MRV and HOPE for a miracle. :cry:
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Postby adamt » Thu Jul 08, 2010 2:17 pm

Hi Dr Sclafani,

Thank you very much for looking at my images before, i appreciate it.

After you disagreed with the Dr who said i have No CCSVI,
I have been in contact with a different interventional radiologist who said he can do balloon angioplasty,

i said i had a veno last month, but he said i must have a venogram a day before the angio
He said "i have to exactly plan my catheter movement"

i have sent him my images/video, so i cant see the importance of another venography.

i can only put it down to getting more money from me,
is it valid to have another veno, one month after the first one?

what can i say to him to prevent me having another Veno unnecessarily?

thank you
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Postby larmo » Thu Jul 08, 2010 2:40 pm

adamt wrote:i said i had a veno last month, but he said i must have a venogram a day before the angio
He said "i have to exactly plan my catheter movement"

i have sent him my images/video, so i cant see the importance of another venography.


You MUST have one done right before the procedure. Stuff moves. Why do you think the doctor said what he said about planning ? You don't want to use an old outdated map to get directions to drive across the country !
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Lumbar veins

Postby LauraV » Thu Jul 08, 2010 2:58 pm

Rokkit, I think the heat is getting to me. I can't remember where I read this, but it was something about a doctor or researcher looking into stenosis of the lumbar veins and the possible implications for the SPMS and PPMS.
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Postby adamt » Thu Jul 08, 2010 3:31 pm

larmo wrote:
You MUST have one done right before the procedure. Stuff moves. Why do you think the doctor said what he said about planning ? You don't want to use an old outdated map to get directions to drive across the country !


fair point , but he said i will have the veno firsy then 1-2 days alater then have the b angio
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