Need two volunteers for a study in So Cal.

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

Need two volunteers for a study in So Cal.

Postby CureIous » Thu Mar 28, 2013 9:29 pm

Just the messenger here. If you have been unsuccessfully treated for CCSVI, or even if you havent been treated at all, the Dr. I am working with is offering a novel, and to my satisfaction, brilliant treatment option. You will be scanned multiple times, and treated, and scanned afterwards, for free.

I've personally seen this play out with his first patient. I've sat with him for hours querying.

It passed the smell test, big time. He needs patients, volunteers. Won't cost you a dime. He's currently submitting a paper. He has a heart of gold, and would happily invite others in the medical field to join him and test his results.

You will receive UT scans, for weeks prior to the procedure. And after. No pre op, no post op, no drugs, no chiropractic adjustments.

You will leave his office the same way you came in, within an hour or so.

It's not any modality of treatment you've heard of prior, he's not a quack, and I stake my
own reputation on him. This is a serious offer. If you are local to the So Cal area, and are able to
visit him multiple times (mostly for the UT's), PM me.
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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Re: Need two volunteers for a study in So Cal.

Postby blossom » Thu Mar 28, 2013 11:37 pm

ok, "curious" now you have the juices of curiousity going. i'm too far away but i'm sure you will get plenty of volunteers.

thanks for posting this here at tims. you have been here a long time and much respected.

but please don't keep us in suspense too long. i've always said leave no stone unturned---soooo we're waiting anxiously.

i'm guessing radio waves or something to that effect. ?????????

can't wait to hear. ----------
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Tue Apr 02, 2013 6:16 pm

" no radio waves", blossom ;)

Still having trouble getting just TWO, two people.

I forgot to mention that stents are a disqualifier (for me too!).

1. Local to So Cal
2. Prefer ambulatory but that's not a firm requirement.
3. Newly dx'd would be great, but not mandatory.
4. Previously angio'd is just fine. Never ballooned is fine too.
5. RRMS obviously, at this stage is preferred, esp. In relapse mode.
Again, not a stiff requirement, but preferred. He plans to eventually "branch out"
to Azy treatment, but that obviously involves a different level of
refinement. we aren't there yet.
6. Commit to several weeks (Saturdays are fine) for the pre-scanning (note I didn't say "pre-op".).
Both before and after the procedure.

7. Capacity to enjoy a very pleasant, and intelligent Dr. in his own
office. No "clinic" setting involved. The first patient insisted I be
there for her husband's treatment, the Dr. had also invited me.
It was an honor beyond comprehension. We talk a lot now.

However, just for the record, I have an IMMENSE respect for
patient confidentiality. I'm the go between to get you from where you
are now, to there. After that it's all you. One MS patient to another.

Nothing, and I mean nothing, will be rebroadcast on the internet. Everything
I have stated about the first patient has been with their explicit permission. I'm a
stickler about that stuff. FYI.

And it won't cost you one stinkin dime. It's investigational.

You will leave with no embedded foreign objects, or unimbedded
for that matter. You will take no post op drugs. You will have no exterior
medical "appliances". And frankly, if all the above is you, to not take
advantage at this early juncture is a missed opportunity.

I.E., I have zero vested interest, only as a former MS patient
myself. This isn't the be all end all, it is just another tool at our
disposal. Please, avail yourself.

PM me, I am just screening a bit for the Dr so he doesn't get
inundated! (IE Dr. Dake's asst STILL gets calls asking about his study, this
is one of the pitfalls of the internets).

MARK MILLER
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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Re: Need two volunteers for a study in So Cal.

Postby blossom » Tue Apr 02, 2013 9:56 pm

cureIous, you have the perfect name -- because you sure have me "cureious".

thank you for thinking enough of all of us to take your time to get this on the road. especially since you are doing so well and have no vested interest--"other than a good heart and care about helping us."

now let me guess again---even though i got a feeling that until this good dr. is ready then we'll know. i didn't see mention what type dr. he is. but, that might help give a hint. i hope that the treatment and dr.'s that choose to follow him are easier to get to than it was in the early days of ccsvi. and hope it is something ins. helps out with so everyone can benefit.

daammm i wish i were in cali. sounds like a win win situation.
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Tue Apr 02, 2013 10:27 pm

He is an internist. He also used to work with child burn victims. He was a researcher for a time. Paid his dues long ago, now just looking to give back. I've seen his photo album from the war injuries he treated
in his home country with very very little to work with. Even as a resident back then, he bucked
the system and his superiors by saving limbs they wanted to just amputate.

One particular patient received a devastating injury to his ankle/foot.

Dr's simply said to take it off. He said no, and grafted a piece of muscle
from the man's back to cover the injury. Saved the foot.

Another man had lost a thumb due to accident. In that area, due to the Muslim culture, that labeled you
as a thief who had been punished. The man agreed to have his big toe relocated to
his thumb region, hey beats being shunned or ostracized for life! Looked pretty good too.

And that, is the best one could hope for back then with little supplies, or facilities, but he made it
work. And now, in the twilight of his extensive career, he's looking to make
something else work. I'm merely inviting a few (for now) to come along
for the ride. It is quite fascinating to say the least...
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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Re: Need two volunteers for a study in So Cal.

Postby MrSuccess » Sun Apr 07, 2013 4:12 pm

one of the greatest aspects of Dr.Zamboni and his CCSVI research ..... is that he has NEVER made any effort to play ' I've got a secret' . Dr.Zamboni told the world , Who , What, Where ....... and most importantly .... HOW .

I think this is how to proceed ...... :idea:


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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Sun Apr 07, 2013 4:45 pm

MrSuccess wrote:one of the greatest aspects of Dr.Zamboni and his CCSVI research ..... is that he has NEVER made any effort to play ' I've got a secret' . Dr.Zamboni told the world , Who , What, Where ....... and most importantly .... HOW .

I think this is how to proceed ...... :idea:


MrSuccess


Uh huh. I'm certain the very first thing Zamboni did, was broadcast
every move over the internets. Every jot and tittle. From his very first patient.
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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Re: Need two volunteers for a study in So Cal.

Postby blossom » Tue Apr 09, 2013 10:16 pm

i think zambonni had things going on behind closed dr.'s in a sence and as i recall when the canadian news lady went over and got the story the treated had not just popped out of surgery--it had been a while for them....and his wife was first and it was not broadcast.

curious any ideas on a time frame on ya or nay? hope things are going good.
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Re: Need two volunteers for a study in So Cal.

Postby MrSuccess » Wed Apr 10, 2013 1:10 pm

who can say what's going on behind closed doors ? I think it fair to say that we are NOT being informed of everything . Professor Zamboni has openly and freely given the medical world - [a] his discovery [b] how he came to his conclusions

and most importantly of all ..... Professor Zamboni has respectfully asked [ as all reputable Professionals do ] his colleagues to examine his results AND try to replicate them .

Many HAVE NOT been able to.

SOME ... HAVE .... and have also greatly expanded the knowledge of CCSVI.

There is always room at the CCSVI >>> MS table of professionals .PROVIDED you provide your name and credentials to those already seated.

I have no time for ' mystery guests' ..... nor their ' mystery procedures ' :roll:

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Re: Need two volunteers for a study in So Cal.

Postby Cece » Wed Apr 10, 2013 2:15 pm

Dr. Zamboni shared everything after his basic research was done. He started researching CCSVI in 2003. (Meaning that he did not share information widely in the early years of the research.)

(edited)
Last edited by Cece on Fri Apr 12, 2013 10:09 am, edited 1 time in total.
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Wed Apr 10, 2013 7:04 pm

MrSuccess wrote:who can say what's going on behind closed doors ? I think it fair to say that we are NOT being informed of everything . Professor Zamboni has openly and freely given the medical world - [a] his discovery [b] how he came to his conclusions

and most importantly of all ..... Professor Zamboni has respectfully asked [ as all reputable Professionals do ] his colleagues to examine his results AND try to replicate them .

Many HAVE NOT been able to.

SOME ... HAVE .... and have also greatly expanded the knowledge of CCSVI.

There is always room at the CCSVI >>> MS table of professionals .PROVIDED you provide your name and credentials to those already seated.

I have no time for ' mystery guests' ..... nor their ' mystery procedures ' :roll:

MrSuccess



Constant berating will get you everywhere
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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Re: Need two volunteers for a study in So Cal.

Postby blossom » Thu Apr 11, 2013 8:48 pm

quote cece :From what I've heard of the mystery procedure, it is an interesting idea that needs to be tested. After all it might not work. He'll get credit for the discovery if it works and he publishes first.

heard????? :-?
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Fri Apr 12, 2013 9:06 am

Not sure how Cece knows any damn thing about it. I sure didn't tell her.

No mind, I'm done with this venues, too many busybodys who
appear to have WAY too much free time. We'll get the patients, no doubt,
but dont expect much forthcoming information, as the circle of
Alliance people is an insurmountable wall of both talk, and silence
at the same time. Was hoping to completely cut ALL of them
out of the loop, they dont advocate for patients, only their own
corporate growth. Only real patients know what it's like, and we
are perenially treated like so much fodder for research dollars, blog
notoriety, clinic patient influx, and just about anything else that puts
someone else's name, or financial wellbeing above that of the patient.

No, it's not going to stop, but our so-called advocates are not
going to do a DAMN thing about it, because they do not want
to lose their own status, reputation, popularity, whatever.

Harrumph. Y'all take care.
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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Re: Need two volunteers for a study in So Cal.

Postby HappyPoet » Fri Apr 12, 2013 9:43 am

Mark,
I completely agree with you about the "circle of Alliance people," BUT I don't want you to leave TiMS. PLEASE don't give them the power to cause you to leave. STAY. PLEASE. I'm sure many people would agree with me--we've followed you and your stents for almost FOUR YEARS, and we want to continue to know how you're doing. Your updates give hope to many people. I'm going to say that again. Your updates give hope to many people. Please give TiMS another chance. PLEASE. If you want, don't mention this thread again, BUT please keep the updates on YOU coming.
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Re: Need two volunteers for a study in So Cal.

Postby Cece » Fri Apr 12, 2013 10:06 am

I heard a rumor about the mystery procedure. I don't know if it's true and I haven't passed it on.
:(
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