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 CureIous » Tue Jun 17, 2014 9:23 pm

Dr. is currently treating patient number 3, just wanted to mention. I'm trying to get a local in as number 4 though that's more pipe dream right now than anything.

For a non-venoplasty procedure, I'd say ANY results are good. But we could still use a few more I think. Either way, both patients (who are both a year+ out), have improved outcomes that have lasted. Both were radically different in both presentation, dx, treatment m.o., really is no way to compare based on that. But, considering the cost (0.00$), all of which was born by the Dr. (and you should see the nice new US machine he purchased), and considering the total LACK of future profit potential (ergo: not a marketable money generating machine which will disappoint some, nuff said), and, most importantly, that both are former patients of ____ _____, having undergone venoplasty, well, I'd say they're doing pretty good.

Would love to repeat what the spouse said when we all met last follow up, but haven't asked permission, so will wait then maybe post that up in the future. After all, having a dedicated spouse that's stuck by you through thick and thin, they get first dibs on assessing efficacy, they are the eye in the sky, the true disease marker. They KNOW.

And through all of this, is copious documentation point A to point B. This is why he has delayed the paper, to get even MORE solid documentation. From pre-procedure to now. He's in it long haul. But he also knows who the big fish and the little fish are in that big pond, there's no illusions here. So the documentation continues. The ultrasounds continue. He continues. Chug chug chug chug chug up that mountain the little train 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 dlynn » Thu Jun 19, 2014 1:12 pm

Thanks CureIous,
this is all good news. I'm following your thread and I really appreciate the updates.
And I hope you're well.
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Sat Jun 21, 2014 1:13 am

dlynn wrote:Thanks CureIous,
this is all good news. I'm following your thread and I really appreciate the updates.
And I hope you're well.


Well thanks. So busy I met myself coming in the other day. Kids schooling keeps one busy, until summer hits and you realize that was the easy part ;).

Anyways, hope to get in soon with the good Dr. and find out what's going on, and or his timetable. He does need to keep his thriving practice going, but I assure you this is very important to him.

M.
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 CureIous » Thu Sep 11, 2014 3:57 pm

Just talked with Patient #2 and her husband. I will join them at the Dr's office on Saturday for a sitdown.

Its been a little over a year since the last treatment. Keep in mind she has primary progressive MS. Her mother had it too along with an Aunt if I recall. The mother was treated futiley with Avonex and went downhill quickly. This patient has not progressed at all since being treated. Her husband is absolutely ecstatic about that. While we know any type of CCSVI treatment has never, and never should have "cure" attached to it, when it comes to PPMS, no progression is GOLD.

Now, her last treatment was six months ago, we will see if a followup treatment is in the cards on Saturday. No inside info there. Husband has no problem doing this repeatedly on a 2x/year schedule, if that's what it comes down to. That's just me thinking out loud. Beats useless weekly injections. Meh.

Point is, instead of progression, and being bedridden, she now wheels herself to and from the shower, gets in and out unassisted, and wheels herself back to bed, feeds herself, list goes on. She takes 20 steps every morning with her walker, again, when I first met her that was an impossibility. No way no how.

Now, some of the initial improvements that surged after her last treatment have lessened somewhat, so hopefully with another treatment she can get even more.

Will update as I get it, its still pretty damn thrilling to see this in a PPMS patient. I repeat: zero progression. Some improvements, meaningful QOL stuff.

Remember also, she is continuing with regular physical therapy on the Dr's recommendation. Undoubtedly that is helping also. Treat the whole person. Not just a vein. I cannot even imagine what the effects would be on a "simple" RRMS patient. Glad he started on the impossible first...
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 CureIous » Thu Sep 11, 2014 5:25 pm

http://www.overcomingmultiplesclerosis. ... Prognosis/




Just wanted to toss this in, I claim no expertise on MS other than my own course, but it is interesting that after 10 years, RRMS can expect mild disability, I am not aware of anything in myself that could be categorized as disability, although it goes without saying that minus MS, my life would probably be vastly different right now.

The PPMS info was interesting also, was not aware of sayings like "fast to cane, fast to wheelchair".

Well this patient had already progressed to wheelchair. By all intents one would expect her to be mostly bedridden by now. To know she has gone the opposite direction, and indeed leveled out, consistently over the course of a year, should be encouraging for all of us. Yes, its just another piece of the puzzle, nonetheless, wow.
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 NHE » Thu Sep 11, 2014 8:44 pm

Hi Cureious,
Thanks for keeping us updated with the great news!
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Re: Need two volunteers for a study in So Cal.

Postby 1eye » Fri Sep 12, 2014 10:19 am

It is getting to be high time people started doing something about the general attitude towards "MS".

I have been told there is financial assistance I am not eligible for because the politicians and people who advise them believe I am not going to have the abilities I have now, for long enough to justify the expenditure. I believe I am going to. I have surprised even myself at how long I have lasted with little to no progression.

We need to start collecting this kind of data if ever pw"MS" are going to get off the treadmill of people's expectations. I am currently taking daily walks. I go slow, and I don't have much range yet. I have been increasing my distance and speed without medication. So far I am not more tired than the last time, when I get back.

I know people are worse off than I am, and in general this is due to length of time since diagnosis. The ones who got CCSVI procedures, a lot of them, I believe have already experienced less progression than they would have without it, some none at all. I count myself in this group. Some have had symptom reversals. Some have avoided the transition from RR"MS" to SP"MS". Some will have longer and better lives.

If any insurance companies have noticed this; please don't keep your profit growth a secret. If necessary, we will do the data collection for you.
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Sun Oct 05, 2014 10:06 pm

Hello all. Wanted to do a small update, now with pics!

Anyways, much more to talk about, but for now some snippets of info:
1. 4th and final patient for now, has been treated. It's been nearly two years since the first patient when this all
started. He wanted to stop last year but I convinced him at Christmas perhaps one or two more would be good.
Please keep in mind he is funding all of this himself, including the brand new Siemens UT machine. The tech is par excellence with scanning. He's done all the scans from the start and knows what he is doing, plus is an instructor at a school.

2. I am intimately familiar with 3 out of the 4 patients, and have been there for every treatment and a good portion of the follow ups if not the prescans also. It's been a fascinating journey, though I'm principally a moral support/answer questions kind of function. People digging into this for the first time (as in patient #4) have oodles and oodles of questions, you know, the basic stuff. I'm posting below some very interesting numbers and one actual scan. These scans were taken on a weekly basis for four weeks prior to treatment, as was the case with the other patients, including copious follow up, up to and including corollary MRV scans done both locally, and with #4, a drive to a well known university up North for an MRV. Will get a copy of that DVD next month and take a look, along with the Dr. Anyways here's the numbers, which bolster his theory (which he has had from the outset), about the transitory nature of stenoses. I wasn't sold at first, I am now. Keep in mind these are weekly scans. No two are alike. That's the point. How can we image and treat something that's here today gone tomorrow? How about a treatment that is of a more permanent nature (no, not stents though mine have performed quite nicely thank you very much), which delves into the cause of the stenosis in the first place, as opposed to treating the symptom, which has so much variance?

#1
Image

#2
Image

#3
Image

#4
Image

Here is the scan though I forgot exactly which of the above it matches. I believe it is the one that he is pointing to with his finger, really narrow. His words were that somewhere around 1cm +/- .10-.20 would be a good opening. That was narrowed down to almost nothing.

Image

Now, the last patient was treated on Saturday, the entire wonderful family came from all over Southern California. Scans were done immediately before, and after. Her and the previous patient both had several things in common: they were both non-ambulatory, and both had very weak veins. In fact the treatment was delayed for quite awhile trying to get an IV established. (IV is there as precaution only). Once that was done the treatment went relatively quickly. Kicker is, this is the first time that the veins opened up before the person left the treatment room. Her two lovely girls, both young, don't know what it's like to have Mom walk. Hopefully that will change as it did for #3 to an extent, but expectations are realistic. After doing every drug imaginable, refusing Tysabri, doing a stem cell transplant, well lets just say she's got her head screwed on straight, no illusions. Will keep updated on her progress or lack thereof. Follow up scan in one month.

Patient #3 continues to improve along with #1. She is now able to shower herself, get in and out of bed, into the chair etc. etc. Her progression has stopped. She has experienced improvements. Not too bad for PPMS. Her Aunt and Mother had identical situations, with one exception: she has had the coterie of drugs, they did not. Her progression was much more rapid than theirs. Something to think about. I know that her caretaker is excited, very much so, and supports the Dr. 100%.

Speaking of the Dr., he has also joined the ISNVD, and shortly will attempt to publish the paper, and is definitely going to be at the conference next March. Until then, I am not aware of any plans to hang a CCSVI shingle up, he knows what the science requires, and is doing everything in his power to satisfy that. Documentation up the wazoo as they say, and a heart of gold. Btw I mentioned briefly on Saturday about the new papers, especially r.e. the ventricles, he has seen the same thing in these patients.

That's bout all I got for now, something to chew on...

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 CureOrBust » Sun Oct 05, 2014 11:24 pm

CureIous wrote:...and shortly will attempt to publish the paper...
Now thats not going to be snuck in without some kind of time frame? And will the paper only be available after it has been published?
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Re: Need two volunteers for a study in So Cal.

Postby dlynn » Mon Oct 06, 2014 6:13 am

Hi,CureIous,
Thanks for the update, and glad you are well. and your stents "have performed quite nicely".
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Mon Oct 06, 2014 6:30 am

CureOrBust wrote:
CureIous wrote:...and shortly will attempt to publish the paper...
Now thats not going to be snuck in without some kind of time frame? And will the paper only be available after it has been published?


Well he just treated #4 on Saturday, so I would presume some data collection is still in order. Honestly I don't know but will certainly ask at the first opportunity. I can say that this will be able to be replicated, collaboration is the key and he is totally open in that regard. . I assure you he has no ego nor empire to protect here. Only reason I'm personally all cloak and dagger is to stay on the proper side of this.

His initial theory is so far being proved. In spades. Unfortunately there's just not a huge profit motive here. Though it goes without saying, it bears a recap: he is not storming the beaches of CCSVI and taking no prisoners. This is not about negating previously used methods of treatment. Its another arrow in the quiver. I would have this done in a heartbeat before considering more aggressive treatments.
This latest patient easily has the means to be treated anywhere, anytime. I strongly cautioned against that for obvious reasons, lack of follow up etc. But its always a future option.

If you could see her two young girls talking about how much they want to see Mommy walk, well let's just say if that doesn't motivate you nothing will. These (to me) are the people that this was all about from the beginning. Not us RRMS people early on in the disease course.

It may fail but there will be nothing left on the table. "All in" as they say...

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 CureIous » Mon Oct 06, 2014 7:00 pm

This my friends, is why those of us with little to no progression, who have been helped, continue in the fight.
This was a pleasant surprise text on my phone tonight.
I am more glad that the message got through, to keep things realistic and grounded. The CCSVI honeymoon was over long ago. Its all about the slow persistent grind at this point. Please keep in mind also, that this Dr. is not just treating people and punting, there is a substantial amount of effort on his part, to keep all hands on deck, which is why her phys therapist was there for the procedure too. He turned on patient 2 to a prosthetic device, which will help strengthen her gluttius muscles which have weakened and lost nerve conduction (they were tested). Her DH's thought, is that by strengthening and retraining these muscles, the nerves will come back and this will greatly improve on her walker-assisted walking she does daily in conjunction with pool therapy.

Again. In cases like these it's not just about a "treat and beat feet" approach. It requires dedication and commitment on both sides , coupled with realistic expectations and a dash of hope.

Mark

Mark; this is _____'s Dad. Listen, on behalf of my family and I, I wanted to take the time to express our profound gratitude to you for your wonderful assistance and and un-imagineable knowledge of the CCSVI. Believe it or not, we learnt a lot from listening to you and the Doctor "W" yesterday and we are fortunate. We are also going to take the time out to read and digest the book (my copy of Marie's book) you gave us yesterday. At this point, our enthusiasm is guarded with some abundance of caution. Then of course, we are striving for the best results; to say the least. We are indeed thankful for everything.

Cheers!!
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 CureIous » Wed Oct 08, 2014 6:11 pm

Haven't been able to reach P#4 since the procedure for a status report, however did call the Dr. tonight and he has spoken with her and husband, and she is experiencing some improvements. Also to reiterate, this is the first patient he scanned immediately prior to and after the procedure, and her veins had opened up from their stenotic state. This was something her DH noted while still in the treating room, that her normally ice cold feet had warmth to them.

As far as improvements, she was able to put her feet flat on the floor, I guess this had been impossible before. Was also able to stretch out her left arm, again, this is something new. No one is in any rush here, and there is for sure, enough guarded optimism to go around, but as P#3's caretaker DH said, "this is the ONLY thing that has helped her so far, arrested the progression, and led to improvements. Good enough for me.

Rest assured Dr. will be in Italy next March as a member of the ISNVD. He's no flash in the pan. I would have bolted long ago if I even caught a whiff of that. Quite the opposite, after watching the good guys bad guys charlatans and scammers circling us cash cows like vultures for five years, there is no hesitation here whatsoever. He has my full and unbridled support. These are exciting times.
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 » Fri Oct 10, 2014 4:12 pm

... so your mystery doctors theory is that the vein has reduced or stopped blood flow in
locations that migrate ? One day here .... tomorrow there. :?:

interesting .

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

Postby 1eye » Mon Oct 13, 2014 1:36 pm

circling us cash cows like vultures

Sorry, out of cash. Out of pickins too. Disgusted, the vultures have flown.
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