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by CureIous
Thu Mar 21, 2024 3:33 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: NY TImes Article: Can the Nervous System be Hacked?
Replies: 2
Views: 2515

Re: NY TImes Article: Can the Nervous System be Hacked?

Didn't the vagus nerve angle present during the early ccsvi days? I recall it was basically ruled out insofar as stenosis being caused by the vagus nerve, so imagine my muted excitement reading this incredible article, results going into phase III look promising. For Crohn's and RA too. Wow. 3 trial...
by CureIous
Sun Feb 12, 2023 1:50 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Notes from CureIous' at Stanford
Replies: 363
Views: 105724

Re: Notes from CureIous' at Stanford

When your orthopedic surgeon asks "what's MS", just walk out. Seriously.
You don't have to be an expert or anything, but I'm pretty sure the average Joe on the street knows say "arthritis" . Let alone a medical professional not having a CLUE about MS?
by CureIous
Sun Feb 12, 2023 1:47 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Notes from CureIous' at Stanford
Replies: 363
Views: 105724

Re: Notes from CureIous' at Stanford

Pangs here too. My buddy that drove me up there back then is gone now too, he was standing right there when I called her on the way back. It is fun though to twist the young doctors arms, the ones fresh out of med school. Awww, so cute look at you with your pretty smock. I say "Stanford" i...
by CureIous
Sun Feb 12, 2023 6:33 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Notes from CureIous' at Stanford
Replies: 363
Views: 105724

Re: Notes from CureIous' at Stanford

Agreed. Will never forget her. Am now consulting with a neurosurgeon and a stellar new ortho surgeon who knows all about the modified Eden Lange procedure aka triple tendon transfer, the gold standard for acc damage. Last ortho called it "scapular instability" and gave me PT. I could have ...
by CureIous
Thu Feb 02, 2023 1:14 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Notes from CureIous' at Stanford
Replies: 363
Views: 105724

Re: Notes from CureIous' at Stanford

After 7 long years and many orthopedic surgeons finally figured out that yes indeed, do have confirmed accessory nerve damage on left side which has rendered that shoulder nearly immobile for a long time. I told THEM, "hey I remember ACC nerve damage causing shoulder problems way back after ste...
by CureIous
Thu Jun 16, 2022 6:04 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Notes from CureIous' at Stanford
Replies: 363
Views: 105724

Re: Notes from CureIous' at Stanford

Granted you came in late to the discussion. Dake is a fraud period. He flat out lied to my face in his office in 2009 when I asked why the left stents were visible but not the right, it's all in the follow up surgery notes, I just didn't know what I was looking at back then. Now I do. He knows. Joan...
by CureIous
Wed Jun 01, 2022 11:40 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Notes from CureIous' at Stanford
Replies: 363
Views: 105724

Re: Notes from CureIous' at Stanford

Just to add for posterity. My spinal accessory nerve was also damaged, this was only discovered recently after over 6 years of left shoulder problems. And of course had to figure it out on my own, after having orthoscopic shoulder surgery in 2016, now PT etc. Never made the connection until a few we...
by CureIous
Sat Jul 24, 2021 4:09 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Hi all, well there was one small benefit from my displaced Stent.
Replies: 0
Views: 1377

Hi all, well there was one small benefit from my displaced Stent.

Long time Exactly 1 month ago, I had a C4-7 disc fusion, hybrid surgery. You can clearly see my left side "stovepipe", they came in from the right since there was no Stent there. [https://photos.imageevent.com/markandsuzy/cervicalacdfsurgerywithmobicdisc/large/20210626_141648.jpg] The top ...
by CureIous
Wed Nov 20, 2019 7:49 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Is Dr. Sclafani still around?
Replies: 42
Views: 22875

Re: Is Dr. Sclafani still around?

As a matter of fact the excess of ballooning is causing more injury in an already compromised vein and I guarantee you the body will react to that.
by CureIous
Wed Nov 20, 2019 7:47 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Is Dr. Sclafani still around?
Replies: 42
Views: 22875

Re: Is Dr. Sclafani still around?

"And when you have Zamboni himself... concluded that “the liberation treatment” for MS does not work" Perhaps you can explain why he came to this conclusion a couple of years ago, more importantly why he has not changed his position since then and why this important fact is overlooked by ...
by CureIous
Wed Nov 20, 2019 7:24 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Notes from CureIous' at Stanford
Replies: 363
Views: 105724

Re: Notes from CureIous' at Stanford

Where is the migrated stent lodged? Not the heart but an artery feeding the lungs? I would be so mad, not at it happening but that you weren't informed and options considered back when there were options. In the right pulmonary artery yes. My pulmonologist said " wow I've never seen that befor...
by CureIous
Sat Apr 20, 2019 5:58 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Notes from CureIous' at Stanford
Replies: 363
Views: 105724

Re: Notes from CureIous' at Stanford

Thats the problem, we're talking about a nickle titanium stent that was made for veins, not for the vasculature that directly feeds the lungs. There is some kind of really nasty looking inflammtory process upper right lobe that has them stumped so far, I've been tested for just about everything, all...
by CureIous
Fri Apr 19, 2019 9:34 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Notes from CureIous' at Stanford
Replies: 363
Views: 105724

Re: Notes from CureIous' at Stanford

Medical protects medical. That simple. I should forward them two mri/ post op reports, one from August 2009, one from April 2010, then ask if they would like to amend their glowing presentation propaganda on Dr. Dake to include " pioneered groundbreaking cath procedure on MS patients in 2009&qu...
by CureIous
Sat Apr 13, 2019 8:05 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Notes from CureIous' at Stanford
Replies: 363
Views: 105724

Re: Notes from CureIous' at Stanford

Copied from my reply on another thread. Just bored so what the heck. Its not helpful (CCSVI Treatment) because treating doctors are not research doctors, just good guessers for a fee. Zamboni was doomed from the start with his poorly structured trials. Once the IR's figured out that treating then re...
by CureIous
Sat Apr 13, 2019 7:50 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Post-Zamboni CCSVI
Replies: 3
Views: 3708

Re: Post-Zamboni CCSVI

Its not helpful because treating doctors are not research doctors, just good guessers for a fee. Zamboni was doomed from the start with his poorly structured trials. Once the IR's figured out that treating then retreating endlessly was a futile attempt they bailed like rats from a sinking ship. But ...

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