Need two volunteers for a study in So Cal.

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

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

Postby MrSuccess » Fri Apr 12, 2013 4:58 pm

well now .... that's quite a rant. At least everyone now knows how you feel about them.

I don't share your opinions. In fact , I commend the tireless efforts of those you seem fit to disparage. These remarkable people have gathered and put forth CCSVI> MS information based on SCIENTIFIC explorations. A far cry from 'mysterious treatment crafted by mysterious doctors. At this point .... that IS what it IS.

However .... I am more than willing to keep an open mind to ANY procedure , method , drug, or what-have-you ..... that solves the mystery of MS. I hope your guy .... is the one with the key that unlocks the door than ends MS. I really do.

I'm putting you down as 'just venting' . We all need to do this at times. And then we carry on.

What you describe is very enticing . I hope you stay on ... and be the frontman on this for all the TIMS people.


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

Postby blossom » Fri Apr 12, 2013 10:23 pm

MrSuccess wrote:What you describe is very enticing . I hope you stay on ... and be the frontman on this for all the TIMS people.




cureious, i know you are a compassionate and careing person. "you" are doing very well and you could have bowed out and went on with life. but, you were thinking of others here and was kind enough to keep us updated giveing hope to others and even for us that tried and it failed at least in my thinking--well at least there were some it really worked for.

now this mystery treatment you are involved in--i don't know if some here took notice but if they didn't they should have. "you said your stents leave you out of the treatment." But, you were so excited and unselfish and wanted to share " --"in due time at the right time the possibility of more hope of solving these crazy relentless symptoms".

all i can say is if there was a confidence breach--"Shame on them." [-X

many of your friends here will miss you and i hope that because of that you'll stay!

besides, think about it, if you don't update us about all this when you feel it's right it may not surface as soon as it should and it might be too late for some.

i know i've had some smart remarks toward my thinking at times here at tims--but you know what--i don't give a rats ass--because nobody has a 100 per cent answer and they never will have one treatment that fits all "as much as i'd love that to happen"--because with all our samenss we are individually different. this may be the answer for some and help all.

so, please don't leave this "cliff hanger"! stress is hard on us. ~X(
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Thu Apr 18, 2013 5:50 pm

CureIous wrote: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...



Spoke with patient's wife last night, a very dear woman who takes care
of both him, and the family business. God bless that woman. Patient continues
to show remarkable improvements. I was happy for her, we all should be.

Unfortunately, I had to decline the invite to his follow up on Sat., will be working OT.

However, it was great to hear of the improvements above and beyond what she had expected,
it only seems to be getting better. Am so happy for her, we all should be, unfortunate
that the few cannot join in with that and choose to criticize based on their
own preconceived notions of how things OUGHT to be, which is a trap.

Whatever is, is, deal with it. Words cannot
fix everything.

(Signed my real name before, others are too chicken to do likewise, that says a lot).


Talk is cheap.
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 » Thu Apr 18, 2013 9:09 pm

CureIous wrote:Patient continues to show remarkable improvements. I was happy for her, we all should be.
Happy here for her and her husband. Thanks for the update! Hope lives. :)
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Re: Need two volunteers for a study in So Cal.

Postby blossom » Thu Apr 18, 2013 10:43 pm

quote curious---Spoke with patient's wife last night, a very dear woman who takes care
of both him, and the family business. God bless that woman. Patient continues
to show remarkable improvements. I was happy for her, we all should be.




i am very happy for them and very happy "you" came back here to update! :-BD

please tell the patient and his wife--"thank you" for participating in this and of course relay a big "thank you" to the dr. for entering his expertee into the world of these symptoms they call ms! :YMAPPLAUSE:

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

Postby blossom » Fri Apr 19, 2013 12:35 am

curious, would one of the volunteers happen to have ppms? if so or not so, does it look like it may be helpful for those of us branded ppms. probably have to wait and see we're all different.

is your volunteer very disabled young or older? answer if you are comfortable doing so.
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Sat Apr 27, 2013 3:33 pm

blossom wrote:curious, would one of the volunteers happen to have ppms? if so or not so, does it look like it may be helpful for those of us branded ppms. probably have to wait and see we're all different.

is your volunteer very disabled young or older? answer if you are comfortable doing so.


Hello Blossom, bless you for the reply.

I spent a good hour today in the dr's office, he wanted to share the
results of his first patient, and we discussed future treatments, and looked
over some very detailed anatomical drawings etc etc.

All I can say is, we are very very fortunate to have a brilliant mind
as thus in our corner, he has basically put aside his own practice to
pursue this modality, it captivates his every waking moment. I noted
he had new copies of the same drawings used for the first patient
in the hallway of his office. The first patient continues to improve, another
angioplasty reject (3 now that I personally know from the same Dr.)

I spoke with his (the patient's) wife last weekend. Steady improvements. Next month
he will have another US immediately prior to a follow up MRV.

There are few if any Dr's I would stake my life on, this is one of
them. I support him 100%. I will conclude with a few tidbits:

He needs volunteers, sooner the better.
He will be presenting at a well known symposium this summer.
His techniques and practice are not in a vaccuum, all will be known
in time, other WELL known Dr's will be included in the loop.

There will be no "secrets" (it's only a secret if you don't know it) after
this summer. PPMS is in the cards too.

He has no interest in fame, nor fortune, he only desires to help
people. That's my word.

Exciting times are coming.

Mark
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 » Wed May 01, 2013 9:25 pm

thank you curious. it sounds like the secret is out to some but still a secret to others. oh well, that's ok, sounds like we'll all know sooner than later and as the old saying goes "if it's worth having it's worth waiting for".

hearing ppms is in the ballgame too and that's good to hear. you did not make mention if any volunteers being treated now were ppms, if they're older and how severly handicapped. this is my status said symptoms named ppms, soon to be 67, wheelchair full time other functions dwindling. i feel my expiration date is nearing. but, otherwise if i could move i'm not in too bad of shape "for the shape i'm in." any volunteers in my league been treated and improving?

quote curious:There will be no "secrets" (it's only a secret if you don't know it) after
this summer. PPMS is in the cards too.

He has no interest in fame, nor fortune, he only desires to help
people. That's my word.

Exciting times are coming.

pretty neat to hear of people with this docs character. especially in a world that can get pretty shakey and shady at times.

waiting-patiently-impatiently.
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Sat Jun 15, 2013 6:00 pm

Still looking for volunteers, pm me if interested. A preliminary paper is in the works, and hopefully
by the end of this summer, maybe September, just the middle man here. Read the first message in
the thread for more info.

Cureious

PS will update on first patient when he has his next sonogram, his RT IJV continues
to stay open and flowing, the Dr. decided to re-treat the LT to achieve
greater improvement. Of course there are actual measurements involved here
but it's too early to say whether this will stick or not, at some point prob. by September
there will be an MRV, has to do with insurance (ie Medi-cal only covers it 1/year).
That does not preclude the Dr. from having his own tech do UT's though which is good.

The patient has other medical issues (diabetes) which make evaluation difficult.
He was not an MS patient, but had some pretty severe neurological deficits, which again, makes
it difficult to assess pre-post, I talked to his wife today, she has seen some
improvements, and the rest she would categorize as "stable".

Keep in mind he was treated after exhausting every resort (excluding all the obvious ones), and has
been poked and prodded and tested for 5 years now, all we know is that his veins are markedly better, on par with what was achieved post angioplasty, at substantially less cost and headache.

However, "we" need to test this out on CCSVI patients with MS and see where it goes.
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 » Mon Jun 17, 2013 7:47 am

thanks for the update. the situation appears to be somewhat complicated.more information would be of interest , of course.

still, nice to hear of some medical professional looking for answers.

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

Postby 1eye » Mon Jun 17, 2013 9:02 am

rumours and gossip never got anybody anywhere they wanted to go, and frequently do get them somewhere they don't.

not to mention how they affect the other folk...
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Need two volunteers for a study in So Cal.

Postby MrSuccess » Mon Jun 17, 2013 9:16 am

not sure of what you are saying ......

ms research comes in many weird and wonderful ways .... ie. eating worms ... goat syrum.

Who in hell really knows what might work ?

My money is on CCSVI . Safe and Permanent stents seem to be the bottleneck. Pun intended. :lol: CCSVI , in my humble opinion , is clearly based on good science.

If someone - anyone - can take what is already known , and take the science further ... I say Go For It .

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

Postby CureIous » Mon Jun 17, 2013 3:26 pm

You know, this thread was posted as a courtesy in case anyone was interested in getting a free treatment as part of an investigational study, opinions are a dime a dozen, and everyone seems to have one. Please go hijack someone else's thread or start your own, this all is a bunch of noise and not much else. Thanks.
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 SaintLouis » Thu Jun 20, 2013 7:23 pm

Color me intrigued. I wish I lived closer. I'd volunteer!
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Sun Jun 30, 2013 1:46 pm

SaintLouis wrote:Color me intrigued. I wish I lived closer. I'd volunteer!


I wished you lived closer too!

Still need volunteers, don't read that as having no takers yet, indeed there have been some who have met with the good Dr. The point was to not inundate him with queries. So far that has not happened which is great. Anyone else interested just PM me. I'm just the middle man that's it, after that it's between you and the Dr. All will be known in time should this pan out.

The first patient continues to do well, not perfect but at least his veins remain open after a high dollar failed angioplasty at a well known clinic. PM me if interested. Living in Southern California (ie available for repeated trips over the course of months) is a plus unless you have means to travel here 5 or 6 times. Thats the only limitation to asking for locals. It's an exciting time and with all the advances across the various treatment modalities I have little doubt that CCSVI will be more easily treatable in the future.

Mark Miller (Cureious)

Ps my stent-opened veins are enjoying their FIFTH summer in a row. Heat waves are great, get to take the kids swimming. 2009,2010,2011,2012,2013. No signs of good results letting up. To think of anyone being able to achieve that without stents nor angioplasty is a thrilling proposition.
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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