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 10:23 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 2:12 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 2:13 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 4:57 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 6:25 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 9:44 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 11:19 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.
"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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