This Is MS Multiple Sclerosis Community: Knowledge & Support

[petebou]

Thank you so very much Sir. We need more people like you on this planet of ours!

Best Regards

[Zeureka]

While i do not wish to fill this thread with my nonsense, i feel (and i hope Dr Sclafani will comment) that only the primary veins currently investigated would result in MS lesions AND this "global" feeling of fatigue, speech and vision problems. Even my tinitus started when upon diagnosis i have had a five day course of solymedrol. A coinsidence?

Anyway, all i am trying to say is that i hope that problems in "secondary" smaller veins may not be as catastrophic for us since its gonna take a while for scientists to diagnose and treat.

Zeureka, keep smiling girl.

Don't worry, my nonsense comments are often coming spontaneously out of the blue sky

Think I generally enjoy brainstorming...You and others on this TIMS forum are technically far more informed than me and thanks so much since I'm learning a lot from you all! Including Dr Sclafani of course...who is our top expert here to clarify all our potential nonsense

[shye]

my profound thanks Dr Sclafani for your concern, you amazing clarification of our questions, and your obvious joy in life. Makes the ride easier...

[newlywed4ever]

Dr Sclafani - you have moved me to tears with your compassion & expertise. Both myself (PPMS) and my daughter (RRMS) are on "your list" for dx & treatment. During the wait, I pray and learn - thank you!

[Needled]

Dear Dr. Sclafani,
Words can’t express my gratitude and admiration for what you’re doing and how you do it – the list is way too long and most people have said it better already. By this time you know it is deeply appreciated by many, many people.
So thank you for your involvement and for taking us on as your new career!
Cheryle

[zinamaria]

Ditto, ditto, ditto, tears in my eyes and lots of praise in my heart and shouts of joy for we are making history! Boy, I may have to write a short story titled, The Good Doctor, featuring Dr S!!

I don't have a question because so many of you are asking the good ones, and I following this thread, contentedly knowing that we, all of us at TIMS, and The Good Doctor, are making history, for I cannot say I have ever witnessed such generosity from a 'professional' who says, 'I guess I'm in for the long haul', right when I thought I was going to hear, 'Sorry gang, got to get back to work, it's been great'...but no, you are sticking with us?
And offering your expertise..I love you too, by the way!
Humanity at its best, right here, let the cynics cringe.

Thank you, thank you,
Zina

[simone]

Dear Dr Sclafani,
I have been restraining myself from posting as my questions are being asked so very well by this amazing group. I now feel compelled to add to the list of people so profoundly moved by your generous spirit. Your compassion and clarity is very appreciated. Looking forward to meeting you.

[Moom9335]

You deserve all the accolades.
Thank you for your skill, your bravery, your caring, your "Damn it, I'm doing it" attitude. We needed another hero. You are it.

[drsclafani]

Given the fact i have cervical lesions (c2 and c4-c5) and no brain lesions (yet) would it be safe to make the assumption that the problem lays somewhere there IF CCSVI applies to me? Especially for the C4-C5 problem, from what you told us, it is more likely to connect with the azygous and NOT the Jugular veins. Goodbye doppler haha
On the other hand, you wrote: There are also veins that connect the cervical plexuses to the upper jugular vein itself. What's the deal?
Umm, maybe upper cervical spine drains to the Juggs and lower to the Azygous? Couldn't God make it a bit more simple?

i wish it were that simple or there were hard and fast rules.

imagine that the jugulars were blocked. Flow from the brain veins would have to traverse through the jugulars and that might increase the flow through the veins of the spine.

so it is possible that your lesions are due to jugular problems. Just as easily it could be that all of your flow from the thoracic and lubmar spine had to bypass the azygous and travel up to get back to the heart

ralph waldo emerson said people see what they are prepared to see. I would like you to be prepared for all the variations that can occur.

God simple.....i dont think so

[drsclafani]

why should only two type of veins (jugular and azygos) be affected in CCSVI? - very likely more other veins will be stenosed, just that we do not know as protocols not worked out for those yet.

zeureka
one sees only what one is prepared to see.
looking in the periphery beyond those big large rivers, there are small lakes and tributaries and suprise surprise there are abnormalities of the small vessels that look like the bigger problems only smaller

the body is a beatiful thing, but when it decides to go haywire, it really knows how to mess up

[Ruthless67]

I don’t have a question, just wanted to address these two earlier statements by you, “Many a career will be made answering these questions, I wish I were younger.” and “guess I am in this for the rest of my career so thanks to all who have made me involved in this, including michelle , marc , mitch. neen, cheryle, jason and holly”

My mother changed professions at the age of 47 when she went to work for an Optometrist. He was just then pioneering Vision Therapy. She became fascinated with what he was doing and began helping to teach the children to read after the doctor had worked with the children to overcome and correct their vision using visual exercises instead of surgery. Next thing you know, she is right there in the thick of it, discovering new techniques and tools, working with the patients and writing the programming for the patients along with training new visual therapists as the practice grew.
She went back to college and got her Masters in Special Education at age 50 then wrote, I think, about 3 books, one was even translated to sell in other countries. She and Dr. Don Getz were true leaders and pioneers in their field. The Optometric Extension Program honored her in 1986 with the creation of an Annual Lora McGraw Award given to an outstanding Vision Therapist every year since. So after 23 wonderful, exciting, productive, tiring, greatly appreciated and rewarding years, at age 70 she finally retired and went on to write 2 more books! But……then she opened a remedial reading practice/office during the week and on the weekends she held training seminars to teach vision therapists and was continually asked to travel doing speaking engagements at Optometric Conferences until her late 80’s!!!

I wanted to share this with you Doctor Sclafani, as I haven’t a clue what age you are, but I have a feeling next to her, you’re still just a babe and have quite a career ahead of you yet! But we love and appreciate you and maybe you won’t have to wait to be 70 before you receive an award for your contributions to CCSVI. You certainly deserve all the Kudos from us here at Tims!

Respectfully, but with a hug,
Lora, Jr.

[Zeureka]

Just to clarify an important issue on the material of stents applied in Katowice (Poland). I asked Dr Simka and he replied to me that he also "usually uses nitinol stents (composition of different metals); No problem with control MRI."

So VERY SORRY should I have given a misleading message before...(that I came up with mentioning stainless steel stents was due to my ignorance on stent materials and based only on internet information related to the "Genesis" type stent that had been told have been used in Poland before or maybe were used in the procedure in the very very start?). I'll never stop learning....and SORRY again...

[ErikaSlovakia]

Just to clarify an important issue on the material of stents applied in Katowice (Poland). I asked Dr Simka and he replied to me that he also "usually uses nitinol stents (composition of different metals); No problem with control MRI."

So VERY SORRY should I have given a misleading message before...(that I came up with mentioning stainless steel stents was due to my ignorance on stent materials and based only on internet information related to the "Genesis" type stent that had been told have been used in Poland before or maybe were used in the procedure in the very very start?). I'll never stop learning....and SORRY again...

Hi everybody!
Of course Dr. Simka told me before my procedure there would be no problem having MR. Everybody knows we, MS people must have sometimes MRI. I had my first MRV some 70 days after the procedure in Poland when I had my follow up.
I wanted the procedure right after my first Doppler - August 7th, 2009. Dr. Simka explained me that except other things he must get proper stents for this procedure.
It was me who wanted the procedure a lot. I was and I am aware of possible problems in the future.
I knew we must do something to have some results. Animals can not talk with you but I can
I do not know exactly what kind of stent is Genesis.
So far I have no problems with it.
Erika

[costumenastional]

imagine that the jugulars were blocked. Flow from the brain veins would have to traverse through the jugulars and that might increase the flow through the veins of the spine.

so it is possible that your lesions are due to jugular problems. Just as easily it could be that all of your flow from the thoracic and lubmar spine had to bypass the azygous and travel up to get back to the heart

ralph waldo emerson said people see what they are prepared to see. I would like you to be prepared for all the variations that can occur.

God simple.....i dont think so

Yes, neither do i. Just some wishful thinking...
Dear Doctor Sclafani, it is the first time i got a POSSIBLE explanation about cervical spinal lesions!
And a d..n good one if a may add. I am sure many will relate.

[Zeureka]

Just to clarify an important issue on the material of stents applied in Katowice (Poland). I asked Dr Simka and he replied to me that he also "usually uses nitinol stents (composition of different metals); No problem with control MRI."

So VERY SORRY should I have given a misleading message before...(that I came up with mentioning stainless steel stents was due to my ignorance on stent materials and based only on internet information related to the "Genesis" type stent that had been told have been used in Poland before or maybe were used in the procedure in the very very start?). I'll never stop learning....and SORRY again...

Hi everybody!
Of course Dr. Simka told me before my procedure there would be no problem having MR. Everybody knows we, MS people must have sometimes MRI. I had my first MRV some 70 days after the procedure in Poland when I had my follow up.
I wanted the procedure right after my first Doppler - August 7th, 2009. Dr. Simka explained me that except other things he must get proper stents for this procedure.
It was me who wanted the procedure a lot. I was and I am aware of possible problems in the future.
I knew we must do something to have some results. Animals can not talk with you but I can
I do not know exactly what kind of stent is Genesis.
So far I have no problems with it.
Erika

Thanks Erika for this And even greater Erika you report no problems I already felt bad about my somehow in the context inappropriate internet search results info before. My intention was certainly not to worry anyone that has been to Poland...But I really had no idea about the issues of different stent materials... still interesting informative discussion and am happy this now clarifies it all.

And yes, I admire your courage, commitment and am deeply thankful you pushed for results in Poland and talked with us to spread the CCSVI experience across to patients in the world through movies and other on the internet/Polish TV ! With my warmest wishes for many further improvements that you may experience with time and thank you Erika !!!