Actually, statistically speaking, there are enough subjects in the Zamboni studies to make a 100% contention questionable. The figure thrown about regarding MS misdiagnosis is 5% to 10%, and that's using the McDonald criteria. That would be enough to throw off Zamboni's numbers.
BRAVO, BRAVO, BRAVO!!! You have stated such an important issue... how are you functioning with your MS TODAY??? The risks involved will always be measured in "if its worth the risk" and in myself, I can say "not yet". I can say, it is okay to wait a little longer for this to become more perfected...not perfect perhaps, but more perfected. I am suffering alot with symptoms but I can still walk even if assistance with a cane is sometimes needed. "But I most certainly take my hat off to all the "pioneers" and am so so happy that there is a hope now, a light, not just for those who are more disabled but for those nonetheless struggling with MS and venous symptoms. What an incredible era we are living in.. perhaps this is the era that will stop MS from touching any more of our family members!!!mrhodes40 wrote:May I say that I believe that if your MS is not progressing in such a way that you are losing the battle, you should really step back.
And I do not mean you are afraid of MS progression, we all are afraid of it, I mean you are really losing the battle and you are getting to the point that assistive devices are needed and nothing else is available or helping.
It takes some real bravery and honesty to take a hard look at your situation and admit that on the whole you are really OK on a day to day basis when you know that you have MS, but many MSers give in to the terror and are blind to today and the fact they can still walk and whatever. They catastrophize every little tingle and twinge--I was like that BIG TIME. I thought every ticklish foot was a relapse. 6 YEARS went by before I realized I was doing fine. I missed a lot wandering around in a high state of terror
This type of person will jump at this surgery eyes closed and should not do so...they are not making the best judgment.
I envy you who can wait so very, very much, the optimal surgery is some years away.
That having been said, my stents are in and I had complications including nerve damage BUT MY SPASMS ARE GONE. I am a lot better I'd say simply for that.
It is a worthwhile trade to me. I am grateful that people with no options or useless options with dangerous side effect (ie novantrone or tysabri for the person who has no inflammation) have something to try at this point and such a person's risk vs reward analysis it totally different than a person who is essentially still very functional.
All that having been said we ALL need to press for treatment to go forward for everyone early enough they can preserve the most possible function.
CureIous wrote:zap wrote:My visible disability is not so bad - but I am so sick of the cognitive effects, and I do not want them to progress another whit if I can help it. My memory, ability to plan, think ahead - my executive function - ihas been degrading for years it seems ... I may not be on the verge of needing a device to walk, but damn it I am sick of this shit taking my mind.
I'll just bite my tongue on the rest of what I wanted to say.
I think you misunderstood Marie. She is not complaining that healing is coming too slowly. She only said, that people at the beginning of the disease should wait until the procedures are refined, where people like her who are more advanced have nothing to lose.
Anyhow, could you ever shorten your posts...I can't read them all the way through.
The 53% patency of jugular veins and 97% patency of azygos veins in Zamboni's patients versus 0% for both in Dake were known to us and all the researchers involved for some time.
In particular, the azygous vein in the MS group was affected in 86% of cases.
Most cases involved membranous obstruction of the junction with the superior
vena cava, twisting, or, less frequently, septum and atresia as can be seen in
the x-rays in Figure 2a; in 12 cases the azygous system presented stenoses
at several points up to even atresia of the lumbar plexuses (18%) (Fig. 2c).
As for the jugular veins, they were found to be stenosed unilaterally or
bilaterally in 59/65 patients (91%). The stenoses were frequently annulus and
septum, followed by atresia; no twisting was observed (Fig. 2b).
radeck wrote:Marie, you misread my post, so your response is out of context. Dake has 0% patency in treating jugular and azygos veins with balloon dilation. They recollapse on the operating table while Zamboni's stay open for 18 months in the majority of his patients. And this
has been well known for months.
radeck wrote:Johnson, I have a theory for the difference, it's definitely not demography, and one of the researchers I've spoken to has found evidence for it, but it may be a bit premature to mention.
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