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 CureOrBust » Mon Jul 01, 2013 4:45 am

I am out of range by an ocean or two... However, I still read this thread out of interest or the results and what it is.

If I am reading it right, one could assume that if a thorough CCSVI treatment did not even provide short term benefits, then neither will this treatment?
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Re: Need two volunteers for a study in So Cal.

Postby dlynn » Mon Jul 01, 2013 2:18 pm

CureIous,
Do you know until when he is offering testing and treatment?
I'm so happy for you, I often wonder how everyone is doing post PTA with stents
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Thu Jul 04, 2013 12:17 am

dlynn wrote:CureIous,
Do you know until when he is offering testing and treatment?
I'm so happy for you, I often wonder how everyone is doing post PTA with stents


dlynn wrote:CureIous,
Do you know until when he is offering testing and treatment?
I'm so happy for you, I often wonder how everyone is doing post PTA with stents


This is all very fledgling right now. The "two volunteers" was my invention, not his. There's really no upper limit that I am aware of as far as how many. Two was just to keep things manageable on my end, that's all. I offered to help him as a go between, as he was not previously treating CCSVI, nor MS specifically for that matter, and was interested in recruiting patients to test this out, without a line forming around the block, nor having to hire new help to answer phone calls. I watched what Alex went through up at Stanford even long after Dr. Dake was no longer recruiting and well after the last patient was treated in 09, and was under no illusion that this would be any different.

To answer your question (finally), I've heard nothing from him that would indicate any timeframe here. The work is progressing slowly, this is not a big hospital with limitless resources, but at the same time he has much more control over what goes on. Other Dr's are on board with this, as I stated previous, if there IS something here, all will be known in time. If there is nothing here, it will fade into the wastebasket of treatments along with many others.

The difference is, the patient is assuming a very minute risk, is out travel expenses like gas, and some free time, and keeps their wallet closed.

Switching to "hope for the future" mode, should this pan out, or prove to provide some benefit (or a lot), the same applies to the patient, will hopefully be covered by insurance, if not, the out of pocket will be substantially less than any current CCSVI treatments.

One step at a time though, not close to that yet...
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 Jul 04, 2013 5:06 am

thanks CureIous,

Happy July 4th
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Sat Jul 13, 2013 3:00 pm

Still need one more volunteer. One went in, was negative at the time for CCSVI(please keep in mind this is strictly IJV's at the moment, not Azy), the other is undergoing a series of scans prior to treatment to thoroughly and rigorously establish a series of baselines, but the Dr. would like to have at least one more before compiling his results to present to the medical community at large.

I even had one PM from someone who joined the site specifically to query about joining the study, never to be heard from again. So to recap:

If you live local enough that you have means to travel to the riverside/Corona area on multiple occasions, and can meet and discuss with the Dr. first in a very comfortable setting, then return 2-3 times prior to, and after the procedure, usually on a Saturday, and are not completely bedridden, and do NOT have stents, then PM me. Prior CCSVI procedure is a plus, but not mandatory. There is zero cost to patient. Your results (good/bad or otherwise) will be included in a preliminary paper and obviously at that time the cat will be out of the bag.

I personally vouch for this Dr. That's a 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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2nd procedure performed today

Postby CureIous » Sat Jul 27, 2013 8:36 pm

No more volunteers required at this point, the second patient came in today and was treated after previous ultrasounds confirmed the baseline, including one today, and rest assured there will be copious follow up and documentation (beyond what already has been documented), something none of the high dollar centers have been willing to do. Document document document. Not 24 hours later like Arata, lets try weeks and months and see what the real efficacy is.


His first patient was coming in today for the third or forth scan, post procedure. Documentation.
MRV will be shortly. His condition continues to improve dramatically (vs baseline).

The second patient today tolerated the procedure very well. I was invited to watch the entire thing, walk in the park vs angio and at least a 10th of the price. She left with her husband as she came in, happy and healthy. It was a joy to meet them both.

Timeline: he is going to compile all the results and data on the first two patients, and present that to other Dr's we know to encourage collaboration. If that is not successful then he will strike out on his own. He has the guts, the bonafides and compassion to do all of that. Mind you, both his first patients received angio which failed after x months, after receiving incredible benefits.

If this works, they'll get those benefits back for good, that is the hope.

All I know right now for sure, is that the first patient's veins remain patent and open some 3 months later. His condition and ability to function has returned, was even told he went bowling with his boys. The man I saw 3 months ago wasnt close to anything of the kind.

Now we follow patient two. If that goes well, then all bets are off. This could render a fair amount of venoplasties to the recycle bin. You heard that from 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 CureIous » Sat Jul 27, 2013 8:41 pm

Also wanted to add that this will be reproducible which is critical.
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 » Mon Jul 29, 2013 12:25 pm

Thanks for the update, CureIous,
Please let us know how it turns out, if you are able. Having another angio. scares me a bit.
I would love to be able to try something less invasive.
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Re: Need two volunteers for a study in So Cal.

Postby tzootsi » Mon Jul 29, 2013 2:25 pm

Very interesting....are you implying this is a non-invasive procedure?
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Mon Jul 29, 2013 3:31 pm

dlynn wrote:Thanks for the update, CureIous,
Please let us know how it turns out, if you are able. Having another angio. scares me a bit.
I would love to be able to try something less invasive.


Would love for everyone to try this before angio. Will say it is minimally invasive. No pre-post op required.
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 Waken » Mon Aug 05, 2013 1:51 pm

Keep us informed....if you can. I am seriously interested in something less invasive but with greater patency. It sounds like the earliest he could publish anything would be torwards the end of the year....which seems like forever to me right now.
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Mon Aug 05, 2013 6:20 pm

Waken wrote:Keep us informed....if you can. I am seriously interested in something less invasive but with greater patency. It sounds like the earliest he could publish anything would be torwards the end of the year....which seems like forever to me right now.


Not sure on the publishing part, definitely before the end of the year. However that will not preclude further treatments (both of which were videotaped) from being performed, should the patients continue to show patency in the veins. Will have an update maybe this weekend on P2 after the second followup ultrasound. This will indicate whether a second treatment is possibly needed.

Still don't know if there's a there there yet so don't get too excited. After the large numbers of failed angioplasties I think we're smart to be a bit gunshy....
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 pairOdime » Tue Aug 13, 2013 5:32 am

CureIous, we remain hopeful and cautiously optimistic...thank you very much for the updates.
It's a paradigm shift
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Tue Aug 13, 2013 2:30 pm

pairOdime wrote:CureIous, we remain hopeful and cautiously optimistic...thank you very much for the updates.

You are welcome. Yes, optimism is always a good course. Reality will check us in due time.

I just talked to the patient in question, who had another follow up ultrasound this past weekend.

That showed the veins as still patent and flowing. As far as symptoms (relayed with permission), improved bladder control. Ability to hold a fork. Lessened ataxia. Ability to roll over in bed. All stable from the git go. Slight improvements, but holding steady. Another adjunct here is the near complete elimination of migraines, using this same treatment.
That's a biggie, and it don't lie. When someone is debilitated 15/30 days a month by migraines, and they suddenly vanish, well there's no faking that. We hope the same holds true for the veins. Looking for that slow, gradual improvement. Next week is another UT, and a few weeks after that, probably another treatment. Will update as needed.
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 Aug 15, 2013 6:34 am

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?
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