DrSclafani answers some questions

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

Postby NZer1 » Thu Jun 24, 2010 8:54 pm

Hi Dr, out of interest how much will it cost to have the treatment of a trial group. My reason for asking is that as people have so heart-fully offered money already, is it possible to get a fund to either pay for or subsidise the trial you are proposing it would possibly get around the issue.(Belmont). For that matter do you have to show proof of the money existing. :wink:
How that works out for those donating could be sorted in a way that they could be on the short list for the next round? or something. :roll:
Another thought would be to name the study as being for something slightly different eg MT and then after wards show that there was a surprising outcome. Or any other illness that could be used for the trial.
Or for that matter target one symptom and have the test being for that specific outcome and there was surprising benefits for CCSVI or MS for that matter. Or as a trail of safety of equipment used in the operation?
It seems the wording needs to suit the panel and that may be the key to success. :lol:
Or come to NZ where the rules are looser :!:
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Postby NZer1 » Thu Jun 24, 2010 9:06 pm

Another thought, you raised your eye brows again :!: :D
Who else has been successful at receiving IRB approval and will their application wording help with your application :?:
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Postby bmk1234 » Thu Jun 24, 2010 9:45 pm

SoberSandy wrote:Dr. Sclafani: Thank you for all the work you have done for the MS community. We love your dedication, your principles and your prioities. Actually, we love you. I have been sitting here quietly reading, following along. But now I must break my silence. I am facing a scary possibility which I am trying to prevent. My wonderful husband, John Robinson has very advanced MS. He is paralyzed, eats through a tube and relys on a vent through the night. Due to chronic fatigue he sleeps most of the day. Since hearing about the Liberation Treatment last year, it has been his wish to be treated. He hopes to gain enough strength to stay awake through the day and to prevent getting anymore infections. His bigger hopes are to live without the vent (do all of his own breathing) and live without the feeding tube (eat real food). He has a positive outlook and deeply cares for everyone he meets. He even still has a great sense of humor. He is well loved and has two children. We are doing everything we can to get testing and treatment for John but despite our best efforts this has not been arranged as yet. Please Dr. Sclafani is there anything you can do to help us reach our goal? We have started a letter writing campaign and I have contacted my local newspaper. Today was a scary doy. John had a mucus plug and could not breathe. I worked with the RT for an hour and we finally got his oxygen saturation and heart rate back to normal. It feels like we are running out of time. Anything you can do would be greatfully appreciated.



Sorry to hear about your situation.
A couple of questions, PM me if you want to answer privately.
Is money an issue for you?
Can John make the trip to NY?
bmk
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Postby bmk1234 » Thu Jun 24, 2010 9:51 pm

SoberSandy wrote:Dr. Sclafani: Thank you for all the work you have done for the MS community. We love your dedication, your principles and your prioities. Actually, we love you. I have been sitting here quietly reading, following along. But now I must break my silence. I am facing a scary possibility which I am trying to prevent. My wonderful husband, John Robinson has very advanced MS. He is paralyzed, eats through a tube and relys on a vent through the night. Due to chronic fatigue he sleeps most of the day. Since hearing about the Liberation Treatment last year, it has been his wish to be treated. He hopes to gain enough strength to stay awake through the day and to prevent getting anymore infections. His bigger hopes are to live without the vent (do all of his own breathing) and live without the feeding tube (eat real food). He has a positive outlook and deeply cares for everyone he meets. He even still has a great sense of humor. He is well loved and has two children. We are doing everything we can to get testing and treatment for John but despite our best efforts this has not been arranged as yet. Please Dr. Sclafani is there anything you can do to help us reach our goal? We have started a letter writing campaign and I have contacted my local newspaper. Today was a scary doy. John had a mucus plug and could not breathe. I worked with the RT for an hour and we finally got his oxygen saturation and heart rate back to normal. It feels like we are running out of time. Anything you can do would be greatfully appreciated.



Our prayers are with you.
Blaine
Last edited by bmk1234 on Fri Jun 25, 2010 4:59 am, edited 1 time in total.
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Postby Johnson » Thu Jun 24, 2010 10:33 pm

drsclafani wrote:...
but
pick your self up
dust your self off
and start all over again


Gotta love a Brooklyn Doc. who quotes Peter Tosh!

I'd love ya even without the quote.
My name is not really Johnson. MSed up since 1993
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Postby drsclafani » Thu Jun 24, 2010 10:45 pm

bmk1234 wrote:
SoberSandy wrote:Dr. Sclafani: Thank you for all the work you have done for the MS community. We love your dedication, your principles and your prioities. Actually, we love you. I have been sitting here quietly reading, following along. But now I must break my silence. I am facing a scary possibility which I am trying to prevent. My wonderful husband, John Robinson has very advanced MS. He is paralyzed, eats through a tube and relys on a vent through the night. Due to chronic fatigue he sleeps most of the day. Since hearing about the Liberation Treatment last year, it has been his wish to be treated. He hopes to gain enough strength to stay awake through the day and to prevent getting anymore infections. His bigger hopes are to live without the vent (do all of his own breathing) and live without the feeding tube (eat real food). He has a positive outlook and deeply cares for everyone he meets. He even still has a great sense of humor. He is well loved and has two children. We are doing everything we can to get testing and treatment for John but despite our best efforts this has not been arranged as yet. Please Dr. Sclafani is there anything you can do to help us reach our goal? We have started a letter writing campaign and I have contacted my local newspaper. Today was a scary doy. John had a mucus plug and could not breathe. I worked with the RT for an hour and we finally got his oxygen saturation and heart rate back to normal. It feels like we are running out of time. Anything you can do would be greatfully appreciated.



Sorry to hear about your situation.
A couple of questions, PM me if you want to answer privately.
Is money an issue for you?
Can John make the trip to NY?
bmk


i have tried at two hospitals for two patients to no avail

so sorry
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Postby cah » Fri Jun 25, 2010 1:39 am

Dear Dr. Sclafani,

I don't know if this is of any help, but at least the small german study must be heavily argued. They declare that the corresponding author, Dr. Krogias, has no conflicts of interest. Yet they fail to tell that at least two other researchers, Dr. Gold and Dr. Hohlfeld, have severe conflicts of interest, receiving money not from one but from ALL DMD producing Pharma groups. But even more compelling is, exactly those reseachers of the study form the medical advisory board of the german MS society (DMSG), who has published the most dismissive statement in december, telling that Dr. Zamboni's work is "worthless and even ethically questionable". (I translated it here: http://www.thisisms.com/ftopicp-79494.html ) There's no way to think that they were unbiased. On the contrary, they would have proven themselves wrong if there would have been any other outcome of the study.

I really really hope there's a satisfying solution for you anytime soon!

Greetings and also a big thank you from across the pond

Cah

P.S.: The german MS society has published a new report yesterday. They use their own study, the other german/british study, and the BNAC study in a negative way. Nothing else is mentioned. Oh wait, they also mention one death due to the treatment in the USA. :evil: :evil: :evil:
And they tell that all MS societies in the world agree to discourage people from CCSVI treatment. I don't know what direct MS, reformed MS, CCSVI alliance, MSRC etc. are, but they must be something else. (I will translate their new article when I find the time, maybe this weekend.)
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby CureIous » Fri Jun 25, 2010 1:49 am

cah wrote:Dear Dr. Sclafani,

I don't know if this is of any help, but at least the small german study must be heavily argued. They declare that the corresponding author, Dr. Krogias, has no conflicts of interest. Yet they fail to tell that at least two other researchers, Dr. Gold and Dr. Hohlfeld, have severe conflicts of interest, receiving money not from one but from ALL DMD producing Pharma groups. But even more compelling is, exactly those reseachers of the study form the medical advisory board of the german MS society (DMSG), who has published the most dismissive statement in december, telling that Dr. Zamboni's work is "worthless and even ethically questionable". (I translated it here: http://www.thisisms.com/ftopicp-79494.html ) There's no way to think that they were unbiased. On the contrary, they would have proven themselves wrong if there would have been any other outcome of the study.

I really really hope there's a satisfying solution for you anytime soon!

Greetings and also a big thank you from across the pond

Cah

P.S.: The german MS society has published a new report yesterday. They use their own study, the other german/british study, and the BNAC study in a negative way. Nothing else is mentioned. Oh wait, they also mention one death due to the treatment in the USA. :evil: :evil: :evil:
And they tell that all MS societies in the world agree to discourage people from CCSVI treatment. I don't know what direct MS, reformed MS, CCSVI alliance, MSRC etc. are, but they must be something else. (I will translate their new article when I find the time, maybe this weekend.)


Sounds like the gloves are coming off big time. I despise it when so called professionals act like a bunch of children. Don't they understand this approach always backfires? See how worthless it is to argue the science with them, when they imbue such overt bias into every word?

Thank God for the good doctors out there that will at least pull up a chair and digest a bit.

This isn't a setback, it's a rallying cry....

M.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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other options...

Postby ThisIsMA » Fri Jun 25, 2010 2:03 am

Hi Dr Sclafani,

Are there small private clinics that do angioplasty? If so do they have IRB's? If not, might it be possible to partner with such a clinic?

Also, what would it cost to open such a clinic? I'm sure it would be in the millions, but how much? We are an army after all... and some of us are grant writers!

I read that a Dr. Hubbard at the Hubbard Foundation in in San Diego has received IRB approval for CCSVI testing and angioplasty. He owns an fMRI machine that is used to:

<<investigate the neurophysiological foundations of consciousness and meditation and their influence on brain functioning, health and peace. >>

Dr Hubbard's son was diagnosed with MS and CCSVI and had the angioplasty with clear benefit. So he is a believer (and probably an interesting person as well)!

I wonder if you could fly out there for one week a month or every other month or twice a year or some such thing and do CCSVI procedures under the approval of Dr Hubbard's IRB? You'd be learning and gathering more publishable information and helping people.

Also, if a small German study of 10 people that found no CCSVI in people with MS can be published and believed, surely your testing and treatment of 20 people with 100% found to have CCSVI and 50% showing clear improvement with angioplasty would be publishable! Don't you think? ( I hope I got those rough numbers right).

Also, is it too late to sign up with the group who wanted to include you in their CCSVI trial? If they are not experienced enough, could you take on a mentoring role and help them do better work?

I know most of my brainstorms don't pan out, but throwing ideas out there might spark another idea that might work!

There is a way to move forward out there somewhere...

Mary Ann
DX 6-09 RRMS
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beyond the venogram

Postby hwebb » Fri Jun 25, 2010 2:32 am

Hey Dr S.,

I just saw something potentially useful on tv. Macquarie University private teaching hospital (Sydney, Australia) has one of these:

Cardiac CT - Discovery™ CT750 HD

http://www.gehealthcare.com/usen/ct/products/docs/announcement_articles09.pdf

According to the manufacturing specs....the instrument allows you to see objects "as small as a grain of sand..... allowing accurate stenosis quantification". The doctors at Macquarie say it could replace the angiogram.

It might be useful for some of us CCSVI-ers? Do you think this instrument could provide useful imaging (of the azygos or jugulars for instance)?

Helen
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Postby euphoniaa » Fri Jun 25, 2010 4:42 am

Johnson wrote:
drsclafani wrote:...
but
pick your self up
dust your self off
and start all over again


Gotta love a Brooklyn Doc. who quotes Peter Tosh!

I'd love ya even without the quote.


Actually, Johnson, the first time I heard that quote it was being sung by Fred Astaire and Ginger Rogers in Swing Time. Thanks a lot, Dr. S! Now I'll be singing the damn thing at work all day. :D

euphoniaa -- old timer, former music major, and decent pianist pre-tremor, who still hasn't given up hope that I can play Beethoven again post CCSVI treatment. :)

P.S. Adding TRUE thanks and much encouragement to Dr. S as well.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby L » Fri Jun 25, 2010 5:04 am

euphoniaa wrote:euphoniaa -- old timer, former music major, and decent pianist pre-tremor, who still hasn't given up hope that I can play Beethoven again post CCSVI treatment. :)


That would be something! I am hoping for you too.
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Postby laura383 » Fri Jun 25, 2010 6:36 am

Great quote, applicable here:

"The worthwhile problems are the ones you can really solve or help solve, the ones you can really contribute something to. "

Richard Feynman, Letter to Koichi Mano, February 3, 1966
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Postby soapdiva884 » Fri Jun 25, 2010 8:35 am

SoberSandy wrote:Dr. Sclafani: Thank you for all the work you have done for the MS community. We love your dedication, your principles and your prioities. Actually, we love you. I have been sitting here quietly reading, following along. But now I must break my silence. I am facing a scary possibility which I am trying to prevent. My wonderful husband, John Robinson has very advanced MS. He is paralyzed, eats through a tube and relys on a vent through the night. Due to chronic fatigue he sleeps most of the day. Since hearing about the Liberation Treatment last year, it has been his wish to be treated. He hopes to gain enough strength to stay awake through the day and to prevent getting anymore infections. His bigger hopes are to live without the vent (do all of his own breathing) and live without the feeding tube (eat real food). He has a positive outlook and deeply cares for everyone he meets. He even still has a great sense of humor. He is well loved and has two children. We are doing everything we can to get testing and treatment for John but despite our best efforts this has not been arranged as yet. Please Dr. Sclafani is there anything you can do to help us reach our goal? We have started a letter writing campaign and I have contacted my local newspaper. Today was a scary doy. John had a mucus plug and could not breathe. I worked with the RT for an hour and we finally got his oxygen saturation and heart rate back to normal. It feels like we are running out of time. Anything you can do would be greatfully appreciated.



(((((HUGE HUGS))))) to you and your husband John Robinson! My heart goes out to you and I hope you find a FAST solution to this. I will include you all in my prayers nightly!
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Postby adamt » Fri Jun 25, 2010 9:07 am

dear Dr Sclafani,

As i said yesterday i had a Doppler exam, and there was no stenosis in the jugular veins - just that the right JV looked a bit thinner than the left - not stenosis tho.

So this morning i had a Phlebography/Venogram.
It lasted 2 hours, i was sedated - no Anaesthetic.
The doctor checked every vein in my body including all the Plexus ones.
- edit: i must have misheard the dr but they did say every vein, but it must of been something like " every vein in the ____ system"

The veins was fine, No narrowing/cxonstriction/twisting, etc.
I have photos and videos of this - i will upload later.

The doctor said i had a normal venous system, just like a healthy person.

I now feel weaker than normal but could be due to the stress on the body from the procedure and may be short term.

So now i know i definitely don't have CCSVI, im lost again :/

As every vein was tested with the dye, is there Any chance the doctor could have missed something?

or does the fact the veins looks fine and dye went through successfully, rule out any possibility of CCSVI?

Thank you
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