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 » Thu Aug 15, 2013 11:38 am

dlynn wrote:CureIous,
Thanks for keeping us posted. This all sounds very promising. Is this Dr. offering (CCSVI) patients this
procedure outside of the study, or is it strictly for his study? And if you don't mind me asking, how are you doing
since your procedure?


Hi DLynn, thanks for the post. Too kind.

There's nothing I would love better than to throw the doors open and tell everyone to come on in.

Unfortunately that's a bit above my pay grade. Remember he was/is doing all of this on his own dime. Unheard of in the CCSVI treatment world. He's a big picture kind of guy, he wants to do things to the best of his abilities and have it stick, and the only way that happens is by fastidious documentation. He is doing that. Yes it is slower than any of us would like, but he understands the process.

If he wanted to hang a shingle and get patients he could have done that long ago.

Hopefully he will get to the conference in Canada in September.

In the meantime, he is evaluating and measuring progress. As stated before,
there is no certainty that anything is there. If not then we move on, but I am a
true believer, I do think he is on to something that has been missed, but
that is just another opinion among many.

I am doing great. Unable ($$) to get to Stanford for a 4 year follow up, but considering
I am writing this in 100 degree heat here, can say it's probably not too
bad ;) . Had the kids the entire summer, 10,6,3. They are a handful.
Would not have dreamed of doing that in '09, so I'd say things are doing just
fine....


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
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Advertisement

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

Postby DougL » Fri Aug 16, 2013 9:14 am

CureIous wrote:Would not have dreamed of doing that in '09, so I'd say things are doing just
fine....
Mark
:YMAPPLAUSE:
User avatar
DougL
Family Elder
 
Posts: 364
Joined: Mon Jul 11, 2011 3:00 pm

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

Postby dlynn » Fri Aug 16, 2013 10:28 am

Very happy for you CureIous,
User avatar
dlynn
Family Elder
 
Posts: 196
Joined: Thu Jul 28, 2011 3:00 pm

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

Postby CureOrBust » Fri Aug 16, 2013 5:00 pm

Cureious, do you know if any of his trial patients did NOT respond previously to venoplasty, but HAVE responded to this treatment?

And I know this next part is very specific, but if there are cases of the above, if they were treated using IVUS?
User avatar
CureOrBust
Family Elder
 
Posts: 2882
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

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

Postby CureIous » Wed Aug 21, 2013 5:05 am

CureOrBust wrote:Cureious, do you know if any of his trial patients did NOT respond previously to venoplasty, but HAVE responded to this treatment?

And I know this next part is very specific, but if there are cases of the above, if they were treated using IVUS?


Yes, all patients were previously treated, I believe all had IVUS.
They had improvements following venoplasty which waned, but have responded
to this treatment, though not as dramatically. This is a long haul approach, not
a quick fix.

The fact that just the migraines were eliminated says a lot.

I'm hoping the good Dr. is able to get to Sherbrooke, then I can
eliminate all this cloak and dagger stuff. All will be known in time.
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
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

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

Postby pairOdime » Wed Aug 21, 2013 5:07 am

CureIous, do you know if the Doc plans to attend the ISNVD Meeting in SF in Feb 2014 to discuss or present any findings?
It's a paradigm shift
pairOdime
Family Elder
 
Posts: 162
Joined: Sun Dec 05, 2010 4:00 pm

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

Postby CureIous » Wed Aug 21, 2013 8:48 pm

pairOdime wrote:CureIous, do you know if the Doc plans to attend the ISNVD Meeting in SF in Feb 2014 to discuss or present any findings?

Love the name btw. ;)

No idea but will be sure to mention to him, hopefully he can get up to
the Great White North next month too.

Thanks for the heads up!

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
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

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

Postby Waken » Sun Oct 13, 2013 11:51 am

CureIous,

Any news regarding this study?

Thanks.
Lynn
User avatar
Waken
Getting to Know You...
 
Posts: 11
Joined: Mon Dec 01, 2008 4:00 pm

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

Postby CureIous » Sat Nov 23, 2013 8:20 pm

Hi all, trying to keep up with things but rarely get on computer anymore. No time.

So I spoke with the second volunteer last week to get a word of mouth update on how she is doing since the procedure.

Her ultrasound showed patent veins still, which is fantastic. I guess we can cover the good/bad/ugly now, as it was relayed
to me, and I did take notes.

The first patient continues to improve also, according to the Dr. Have to call his significant other maybe this weekend and get a clearer picture. He was supposed to get an MRI/MRV but there were insurance and $ issues so not sure.

Anyways, back to courageous volunteer #2.

Some benefits have remained, and some were fleeting. Overall she was very happy to have done this. There were two treatments overall, the second one focused on the area closer to the BCV which as we know is a frequent CCSVI flyer.


First a bit of history: She was dx'd 1989 with TM. Dx'd RRMS in 2005. Around 2008-09 progressed to SP, though obviously the RRMS may have been going for sometime before the official Dx. Interesting that her Mother had MS. Maternal half sister had aggressive form of PPMS.

I'll give a quick rundown of the lasting improvements, nothing to sneeze at, and some are far from subjective.

1. Bladder control greatly improved still, since 1st procedure.
2. CogFog gone since 1st procedure. Huzzah!
3. Is able to use a walker to take 25 steps, unheard of prior to procedure. Huzzah x2!
4. Left hand is stronger.

Also will add that the Dr. put her in pool therapy too which has contributed above and beyond whatever may have been a result of the procedure. He understands the significance of that, and isn't a "treat and kick out" kind of Dr. I guess you can say "holistic" though that can mean many things.

I asked her if she was overall happy to have done this and received an unqualified yes.

Okay that's all the good, the bad would be as follows.

1. Initial improvement in things such as rolling over in bed etc. Gone.
2. Ataxia in Right arm initially improved, gone.

That's all I wrote down but if I get any more relevant info I will post. No sugarcoating, promise.

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
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

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

Postby dlynn » Sun Nov 24, 2013 7:55 am

Thanks for the update CureIous,
Is the Dr. treating any other (paying out of pocket for the procedure) MS patients?
And how have you been?
User avatar
dlynn
Family Elder
 
Posts: 196
Joined: Thu Jul 28, 2011 3:00 pm

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

Postby CureIous » Sun Jan 26, 2014 7:23 pm

My goodness has it been since November since posting to this thread? Time flies.

First of all to update as to both of the volunteer's status:

1st patient, spoke with his wife at length this morning, he remains stable per the last update. Stable is always good. Veins remain open.

2nd patient, have not spoken with her in about a month or so, but last conversation seemed stable per the latest update above. Stable for SPMS on no meds is good. As far as I know both will receive follow up ultrasounds next month. Will update then and perhaps some personal observations, which leads to the next part:

Dr. and I talked on New Years Eve, he is ready to use the procedure now on 3 more patients, note I did not say "treat", ie treatment, he does not want this regarded as a treatment. That is a bit heady at this juncture and puts a label on this it neither deserves (yet) nor can live up to. It is a procedure, plain and simple.

I will say that in talking with him in person, it is obvious he is very dedicated to seeing this through. The similar procedure he uses for migraines is currently in patent process, he understands if you're going to go anywhere near the pharmaceutical's bottom line, you better have your ducks lined up first. Patenting the procedure is the only way, he knows he is a little fish in a big pond. He is in this for the long haul.

Secondly, he has invested in a new ultrasound machine, bigger and better as they say, he puts his money where his mouth is, and no, does not drive a sports car (not sure why I thought of that). He told me he doesn't care if he spends every dime he has, a noble gesture backed with action.

Now there are a few requirements, perhaps softened a bit from the ones stated at the top of this thread. One needs to be able to get up on the table, assisted or not. Just a regular patient's table like in any Dr.'s office. This effectively eliminates the wheelchair-bound. Ambulatory even better but not required.

Also, it will be required to have 4 ultrasounds prior to the procedure, once again just show up and he takes care of the rest.
That is one ultrasound per week for 4 successive weeks. Then, 2 more weeks to analyze the results, then the procedure. He is VERY flexible with scheduling and will move heaven and earth to accommodate one's needs. Then lastly, another ultrasound follow up, with successive followups as determined.

There will be consults as needed, both prior to the first ultrasound, and procedure etc. You will have no question(s) unanswered.

He should be ready to start the process within the next month if not sooner, depends on getting the new ultrasound setup. I can get more info on that too.

The office is comfortable, he is very easy to speak with, and fascinated by this entire thing, if not for his childhood friend (the first treated) having neurological problems, he may never have asked another question when I mentioned about CCSVI as part of my patient history way back. I am for the record no longer his patient. There is NO charge for any of this for you. That means free, it does not mean "cheap". He bears all expenses. I receive nothing myself though that hardly needs iterating. He wants to help, I want to help him help you, but I am in no way involved in anyone's medical care beyond providing information and directing you to him.


Anyone interested can either message me here or email me at lovemystents@yahoo.com.

Keep in mind we are talking about many months now of stability in some areas with a procedure that is quite novel, is virtually harmless, and painless, and inexpensive, but achieving open veins at the same time. I've seen the proof, I am convinced though of what I am not totally sure, but something here is working, and this Dr. has really got a good thing going here, and his science AFAIC is solid, and yes he will be submitting a paper, and hopefully I can get him to ISNVD, not sure on that.

:)

Mark

Edit: also anyone with stents is excluded, though prior venoplasty (failed or not) is no problem.
Last edited by CureIous on Sun Jan 26, 2014 7:51 pm, edited 1 time in total.
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
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

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

Postby CureIous » Sun Jan 26, 2014 7:34 pm

I suppose it goes without saying though I didn't mention it in the last post, his location is Southern California, specifically the Corona area should travel area factor in.

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
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

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

Postby dlynn » Wed May 07, 2014 12:38 pm

Hi CureIous,
How have you been? Hopefully you're still enjoying the benefits of your procedure.
Is there any news on the study in Ca.? Are patients with any type of stents anywhere in the body excluded?

dlynn
User avatar
dlynn
Family Elder
 
Posts: 196
Joined: Thu Jul 28, 2011 3:00 pm

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

Postby CureIous » Wed May 07, 2014 5:26 pm

Doing great! Working 7 days on an historic project in El Segundo, night shift at that. Never felt better. Hopefully the media will be here too. Very fortunate to be here. Once in a lifetime moment.

Would never have been possible without fixing them veins. We'll be done here by the end of the month then I'll get back with the Dr.and see what's going on. I do know the meeting a few months ago between patient 1 & 2 during follow ups was fantastic. More on that later.

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
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

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

Postby dlynn » Wed May 07, 2014 7:18 pm

Wow Mark, that is really great news, I'm so happy for you.
Thanks for keeping us posted.

dlynn
User avatar
dlynn
Family Elder
 
Posts: 196
Joined: Thu Jul 28, 2011 3:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users