DrSclafani answers some questions

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

Postby hope410 » Sun Jun 13, 2010 7:42 pm

soapdiva884 wrote:Did I miss it??? Has the IRB been approved?? I have been trying to catch up on all of the threads I have missed. Was away for some major surgery. Can someone clue me in please and ty?


I believe that Dr. Sclafani wrote that he would let us know once he's gone into the office tomorrow.
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Re: Dr. Sclafani

Postby girlgeek33 » Sun Jun 13, 2010 8:52 pm

drsclafani wrote:this has broken my heart and put tears in my eyes.

please find next of kin for me. I would like to ask whether I can name my first study "the wehmeyer study" in her honor


I'll see if I can find something out and let you know... You have brought me to tears once again! And I was very, very touched that you are passing up your retirement for us!!!!

***
Update - I've emailed off to family members I could find and posted on her page.... Let you know what I find out...
Last edited by girlgeek33 on Sun Jun 13, 2010 9:07 pm, edited 1 time in total.
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Re: Dr. Sclafani

Postby pegmegrund » Sun Jun 13, 2010 8:54 pm

drsclafani wrote:this has broken my heart and put tears in my eyes.

please find next of kin for me. I would like to ask whether I can name my first study "the wehmeyer study" in her honor


Dr. S, Please check your private messages about this. Thanks.
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Re: I decided in December to have stents put in.

Postby larmo » Sun Jun 13, 2010 10:52 pm

drsclafani wrote:
larmo wrote:
drsclafani wrote:
larmo wrote:I decided in December to have stents put in. The odds of me getting restenosis will be greatly diminished.


larry
where is the proof of that.


I'm just guessing but from the hundreds of anecdotal posts I've read the restenosis didn't occur when stents were used. Seems like common sense to me to go with what works not what works mostly.


anecdotes do not count
let them publish, ie let them have their work overseen by a review board

but larry you can stick your neck out any way you want 8)


What are the percentages of restenosis with and without stents ? If it's shown to be the same, I'll change my mind (and save $ on the procedure).
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Re: I decided in December to have stents put in.

Postby Cece » Sun Jun 13, 2010 11:20 pm

larmo wrote:What are the percentages of restenosis with and without stents ? If it's shown to be the same, I'll change my mind (and save $ on the procedure).

drsclafani wrote:There are many trials that need to be done

1. how many veins need to be angioplastied
2. which signs and symptoms of MS and CCSVI will repsond to venoplasty
3. stents versus no stents
4. type of stent
5. RRMS versus SPMS versus PPMS. which does it work on?
6 Role of IVUS, Doppler, MRv, catheter venogram
7 how to reduce incidence of restenosis
8 how to reduce incidence of restenosis after stenting
9. Are MS drugs necessary after liberation
10. . what about treating stenoses in patients with no MS
11. many more,

geez, i just gave away my research career

I think he'll have that answer on those percentages for us in about three years...and I'm probably one to think the research will go faster than it really will...
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Postby costumenastional » Mon Jun 14, 2010 12:55 am

drsclafani wrote:but not all ccsvi is picked up via azygous and jugular venography. I was caught by surprise on that one!


I have to say that this doesn't make two of us our dear doctor :)

Anyway, a question would be if this means that there are other veins which also contribute to CCSVI pathology. Since dr Sclafani is asking from us to wait until he expains why some venograms come out false negative, i take it as this is not the case.

This is a VERY important statement! I am anxious to read Dr Sclafani's info on that matter.
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Postby L » Mon Jun 14, 2010 4:50 am

Dear Dr Sclafani. Thanks again for your commitment. It's been said many times but it really is exceptional. And thanks for passing on our best wishes to Ferrara.

My question - a study was written up and submitted to the Annals of Neurology last month which took place in a number of centres, primarily the University Hospital Charité in Berlin, which found no relationship between MS diagnosis and CCSVI. I'm sure you heard of this study, they published initial results months ago and now here's the paper - http://www3.interscience.wiley.com/jour ... 6/abstract

What are your thoughts on this if you don't mind? They have been rubished on this forum but I know of one of the contributors and he seems like a serious person. I don't think that he would miss an opportunity to help MS patients. Well, in short, I find it very difficult to explain this..




Thanks again!

more details:

Dr Klaus Schmierer quoted in a news article published today-

“We used virtually identical ultrasound techniques to try and reproduce the results by Dr Zamboni and his co-researchers but we had quite different outcomes. In the 76 subjects used in our research, the blood flow in the head and neck veins was normal in everyone except for one person with MS,” Dr Schmierer said.

“Although some people have tried interventional procedures to ‘unblock veins’ we would strongly advise against this until further investigations into CCSVI and its possible role in MS are conducted.”


The full article:
http://www.healthcanal.com/brain-nerves ... -with.html
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Postby bluesky63 » Mon Jun 14, 2010 8:26 am

I am so emotional hearing about Bridget Wehmeyer and the plight of Barb Farrell and remembering people who went before, like Mike from Braintalk, and a cousin of mine who died young, and too many others.

The idea that you would name your study after Bridget brought me to tears again. I am the same age as these women, and I have a young son like Barb Farrell. This could so easily be me. But it could be any of us.

I am emotional to the core that you have chosen to devote yourself to multiple sclerosis and bring hope to us and to our sons and daughters and loved ones, and make a real difference when so many professionals have accepted the status quo and told us, however compassionately, to live and die with our issues.

If the internet connections were veins, everything now would be open and pouring love and gratitude to you and Dr. Zamboni and every professional and volunteer at the heart of this movement and progress, all of whom are making this a reality and bringing us back a chance at living again.

For Bridget, and for Barb, and for every person, named and unnamed, at every level of disability, thank you, thank you, thank you, and let's all send our best energy and prayers for the best news we can get, wherever it takes us. :-)
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Postby soapdiva884 » Mon Jun 14, 2010 12:52 pm

It is almost 3 pm in NY and no word. Am I to assume (you know what that means?) that the word is not going to be good? I would have thought John (my bf second on the list of Dr. S's for liberation when starting back up) would have gotten a phone call about the IRB findings either way!?!?!? Oh, how I wish we could get some GOOD news today!!!!
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Postby Cece » Mon Jun 14, 2010 1:22 pm

soapdiva884 wrote:It is almost 3 pm in NY and no word. Am I to assume (you know what that means?) that the word is not going to be good?

He knows how much we're hanging on this...but he's also got two radiology departments to run and who knows what to catch up with...not to mention those anonymous victims of trauma too...I hope it's still good news!

costumenastional wrote:This is a VERY important statement! I am anxious to read Dr Sclafani's info on that matter.

Me too...could it be posture-related? Because the catheter venography is always done lying down and the blood flow relies on different routes if one is lying down or sitting up.
"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 magoo » Mon Jun 14, 2010 1:58 pm

Dr. Sclafani,
Can you explain why people who have had treatment sometimes have a return of old symptoms when sick? The people I have talked with about this say it is to a lesser degree. I am included in this group because I have had more headaches and stiffness when I am sick, which resolves when I am well again. But this does seem to cause anxiety. Is there any way you can explain this to ease our minds?
Thank you:)
Rhonda
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Clavicle?

Postby Kirtap » Mon Jun 14, 2010 3:41 pm

Hi,
Maybe a stupid question, but i will ask...
I got my clavicle broken when i was young. Could it be a cause of a stenosis in the azygos? Does the azygos is near the clavicle?
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Postby drsclafani » Mon Jun 14, 2010 4:50 pm

soapdiva884 wrote:It is almost 3 pm in NY and no word. Am I to assume (you know what that means?) that the word is not going to be good? I would have thought John (my bf second on the list of Dr. S's for liberation when starting back up) would have gotten a phone call about the IRB findings either way!?!?!? Oh, how I wish we could get some GOOD news today!!!!


SORRY FOR THE DELAY. THE IRB WANTS SOME CLARIFICATIONS WHICH I WILL WRITE TONITE AND TOMORROW.

THIS IS AWFUL ISNT IT? SO SORRY TO DRAG THIS OUT

NOTHING BAD HAS HAPPENED. NO COMMITTMENT ONE WAY OR THE OTHER. THEY ARE NOT DRAGGING FEET, NOT INCONSIDERATE. THEY ARE JUST DOING THEIR DUE DILIGENCE

HANG IN THERE.

S
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Postby drsclafani » Mon Jun 14, 2010 4:59 pm

magoo wrote:Dr. Sclafani,
Can you explain why people who have had treatment sometimes have a return of old symptoms when sick? The people I have talked with about this say it is to a lesser degree. I am included in this group because I have had more headaches and stiffness when I am sick, which resolves when I am well again. But this does seem to cause anxiety. Is there any way you can explain this to ease our minds?
Thank you:)
Rhonda


rhonda, such a nice surprise for you to ask a question. And you ask a good one. i am not sure that "illness" brings on old symptoms when sick. perhaps it is the stress? I will look around.

if illness leads to stress???:

Psychosomatic Medicine 64:916-920 (2002)
© 2002 American Psychosomatic Society

--------------------------------------------------------------------------------

ORIGINAL ARTICLES

Stressful Life Events Precede Exacerbations of Multiple Sclerosis
Kurt D. Ackerman, MD, PhD, Rock Heyman, MD, Bruce S. Rabin, MD, PhD, Barbara P. Anderson, PhD, Patricia R. Houck, MSH, Ellen Frank, PhD and Andrew Baum, PhD
From the Departments of Psychiatry (K.D.A., B.P.A., P.R.H., E.F., A.B.), Neurology (R.H.), Pathology (B.S.R.), and Psychology (A.B.), University of Pittsburgh, Pittsburgh, Pennsylvania.

Address reprint requests to: Kurt D. Ackerman, MD, PhD, Western Psychiatric Institute and Clinic, 3811 O’Hara St., Pittsburgh, PA 15213. Email: ackermankd@msx.upmc.edu

OBJECTIVE: We longitudinally monitored life events and health changes in patients with multiple sclerosis (MS) to determine whether stressful events may trigger exacerbation of MS.

METHODS: Twenty-three women with MS were followed for 1 year. Each subject completed the Psychiatric Epidemiologic Research Interview on a weekly basis. Further information on potentially stressful events was acquired using the Life Events and Difficulties Schedule. Neurologic symptoms were also monitored on a weekly basis throughout the year. Potential MS exacerbations were confirmed by a neurologist who was blind to the presence and timing of stressors.

RESULTS: Eighty-five percent of MS exacerbations were associated with stressful life events in the preceding 6 weeks. Stressful life events occurred an average of 14 days before MS exacerbations, compared with 33 days before a randomly selected control date (p < .0001). Survival analysis confirmed that an increase in frequency of life events was associated with greater likelihood of MS exacerbations (hazard ratio = 13.18, p < .05).

CONCLUSIONS: These results are consistent with the hypothesis that stress is a potential trigger of disease activity in patients with relapsing-remitting MS.
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