This Is MS Multiple Sclerosis Community: Knowledge & Support

My letter is in the mail! If you want a shortcut here is a link to a Microsoft Word version that you can edit and make your own. Let's do this!
http://dl.dropbox.com/0/view/nllyvhdgdmbgvb1/CCSVI/Sclafani%20IRB%20Letter.doc

you can send to the

SUNY IRB
C/O Salvatore JA Sclafani
Dept of Radiology
Kings County Hospital
451 Clarkson Avenue
Brooklyn, NY 11215


My letter is in the mail.

Okay, now that this address has been repeated several times in the thread, how about everyone correcting the spelling when they send in their letters of support.

Like larmo pointed out, I believe the first name is "Salvatore".

_________________
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 or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

thanks
you gave me a great idea

i will give the radiology and the neurology residents the same quiz i will offer to you.. it is about 30% completed.

Dr. Sclafani,

Is there an email address for the IRB, or must our letters be sent snail mail with a stamp and envelope?

Thanks

My letter is in the mail. Shot a soft copy of it to Holly, hope it helps Dr Sclafani, if there is anything else we can do as patients and patient advocates please let us know!


I wanted to get your take on the CSF Flow comment that Dr Zamboni made in the webcast on Wednesday. In talking about Fibrin Cuffs being a marker of venous hypertension, Dr Zamboni went on to say that the pathology of CSF flow is greatly modified by CCSVI, and called on neuroimmunologists to explore this area.

Over the years there have been many calls of viral or bacterial genesis of MS, and this idea pointed out by Dr Zamboni could support that theory.

To me, the most obvious puzzle pieces seem to be:

1) CCSVI compromises an individuals's BBB over time, in addition to causing certain potential symptoms (fatigue, heat sensitivity, and worse depending on iron deposition and its effects).
2) Some individuals who carry certain virus/bacteria, open themselves to attack when their BBB is compromised, and these virus/bacteria attack and kill the oligodendrocytes which create the myelin.
3) The death of these oligodendrocytes (and perhaps the Iron deposition as well?) activate the Immune system which is able to cross the BBB and do its damage....thus such the strong immune response in MS patients and the arguable effectiveness of current MS therapy.

So, in this theory, CCSVI treatment may not address the entire picture, but solve a portion.

This is all so interesting, I can't wait to see where this leads us....I think we're sooo close to putting this MS puzzle together.

My letter of support is in the mail too. It's the least I can do to say thanks for everything you've taught me.

If anyone on this forum wants to look at my letter and use it as a starting draft for their own letter of support---just PM me.

Patrice

You are a truly remarkable man Dr. Sclafani!!! Thank you for all that you do!

Hello Dr.Scalfani...i have been away from my computer for a bit...but i believe when i left, this thread was at 35pgs. and now 45 and i was only gone for 4 days!!! that's awesome...i was supposed to see you on the 24 of may, but until you get your approval i can wait for YOU - you are the most amazing doctor i have ever "vitually" met - you care about us and that to me is the best quality a doctor can have!!! i wish more doctors were like you!!...and i am going to write my letter to the IRB as well...i am so excited to meet you, i may pass out when i do - i kid, i kid : )
and i just wanted to say one more thing
THANK YOU SO, SO, SO MUCH!!!

Dr. Sclafani:

I join the many other poster's in thanking you for your informative answers.

Your discussion about stents was especially relevant to me in that I recently underwent the liberation procedure for bilateral stenosis in the internal jugular veins. For five days following the operation my MS symptoms of twenty years duration were rapidly vanishing.

Unfortunately, starting on the six day the old MS symptoms came back.
Now it's as if I never even had the procedure done. A MRV and ultrasound have confirmed that the veins have renarrowed exactly in the same location and degree.

As someone who is suffering from progressive MS at 62 years of age, I don't have the luxury of waiting for a perfected stent specifically designed for use in veins. I wish such a stent existed now, or at least was under active development.

I face a rather blunt choice; accept the fact that I am facing a steady debilitating future (wheelchair and lose independence) or risk the dangers you outlined with a stent placement.

Personally, my choice is to have stents implanted-but I appreciate that many others would be hesitant because of the dangers.

I suspect that because my veins tightened on the sixth day, the chances of migration would be lessoned after the veins start to narrow again. The veins would tightened their grip on the stent.

I felt human again after the procedure; in my mind it's worth the risks as opposed to the certainty of a horrible fate.

Each person has to make their own informed decision.

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Dearest Doc,

MS_Mama's post makes me wonder about blood volume. Could an increase in blood volume in pregnancy cause more flow of blood and cause pressure on the veins as well, pushing them to open more? Then postpartum could the sudden change in pressure cause veins to collapse and start a cascade of relapses? Perhaps it it too simplistic .

Will get some letters to the SUNY IRBS in the mail. Perhaps we could make a new sticky and flood them.


mshusband wrote:
Dr. Sclafani ...
Pretty general question here, but of interest to me since you're at a Medical School Hospital.
What do your students (interns/residents/whatever) think of CCSVI ... (if you've introduced any to the theory)?

Any FUTURE doctors on board with this?

Dr Sclafani:
thanks
you gave me a great idea

i will give the radiology and the neurology residents the same quiz i will offer to you.. it is about 30% completed.

Wow, what a connection apparatus! Love your caring ways.

Dr Sclafani, I would like to get your opinion on manipulations of the neck/bones. From my own personal experience everytime I have my neck or lower back manipulated by a chiropractor I seem to have a relapse!

I got diagnosed after having my neck manipulated (I developed L'hermittes) and recently had a serious attack of vertigo (which was defined as a relapse) after having my neck manipulated.

I had an MRA done by the hospital and there is no obvious damage to the arteries/blood vessels but as this has happened 3 times in total (I am going to stop trying it out now!) do you think that manipulating the neck and back can have an effect on blood flow?

I am not dissing Osteos/chiropractors as it seems for some they are able to actually improve these sort of symptoms and increase patients quality of life but for me personally Neck/back manipulation = relapse.

What are your thoughts?

Dear Doctor Sclafani,
thank you VERY much for your detailed info regarding stents.
I appreciate.

Dear Doc,

A few things came up in discussing CCSVI which I don't understand so I turn to you hoping you can shed some light on these issues.

1. If an MS patient has a very high degree of disability (EDDS is well above 8 ) do you think it could be possible to only have an IJV with 50% narrowing in the proximal third (compression by the Bulbus Caroticus)?
This 50% narrowing was said not to be severe enough to treat with angioplastic. Does that mean this MS patient can forget about ever being 'liberated'?

2. It is not your field of expertise maybe but can you think of a reason how and why an MS patient could benefit from stemcell therapy after angioplastic for CCSVI?

3. Can many MS laesies in/at/on the brainstem (sorry, I'm not a native speaker ) cause a higher risk during and/or after angioplastic?

4. Can CCSVI get worse in just a few months in patients who have MS for many years? So, if you have MS and no visible or not severe enough signs of CCSVI on a MRV should you check it e.g. every 3 months to see if the CCSVI gets worse which would be 'good' if you want to have an angioplastic?

Thank you for your time and energy to answer our questions.

My diagnosis came after visiting the chiropractor. I had numbness in my right shin area later in the evening after the adjustment that afternoon. I returned to the chiro the next day to try to resolve the issue, but still had the numbness. I made an appt with my GP and eventually was sent to the neuro and received the diagnosis after the MRI's.
The first nero specialty was for spinal issues checking for pinched nerve. He saw something in the MRI w/contrast and did not know what it was exactly. He said it could be a blockage of blood flow to the spine, but was not MS. Could the azygos blockage show up on the upper back MRI?
He then sent me to the next neuro for the diagnosis.

Thank you Dr. and Holly for all you are doing.