Notes from CureIous' at Stanford

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Katie41 » Mon Apr 12, 2010 5:41 pm

Isn't it terrific those great kids have such a "new and improved" daddy! Lucky ducks!
User avatar
Katie41
Family Elder
 
Posts: 179
Joined: Sat Dec 05, 2009 3:00 pm
Location: Southern California

Advertisement

Postby CureIous » Thu Apr 15, 2010 8:41 pm

Well it's been such a pleasant trip so far, and no rush. Had a great time touring the old stomping grounds near the San Jose foothills (coleman and santa teresa area), the percolation ponds where we used to "fish" as kids, long before anyone cared that they even existed, now it's a huge park/recreation area and the "pond" is the same though. When I told some of the fishers there that it had been 30 years since last sunk a line in there, it made for some good conversation lol. Good times there.

Had the follow-up MRI tonight, starting at 7 pm, went for hour and a half, right on time. Those folks down in the Blake Wilbur building are a fun bunch, fun indeed. Made sure to wear my colors proud too.
Image

Didn't have the follow up appt tonight due to late MRI tube, but ran over to the building to say hi to Alex and Dr. D showed up, and loved the shirt and wanted a pic lol. This whole trip seems so celebratory and final, not that the final word is in, but the drama at this point, for the most part, is over for the immediate future. Anywhere the Doctors were gathering I made sure the shirt was available for viewing lol.

Anyways no more scanning for me until maybe July/2011 Lord willing, but remains to be seen the scan results. Will get my copy in the morning and start parsing and perusing after our consult, can't wait to get some side by side shots with the first MRI 8 months ago.... However short of a time in the scheme of things that may be, still want the information, good bad or otherwise. I did get my placebo prescription refilled while there, just about empty!

Will update tomorrow as to status/scan results/consult etc. May angio may not....

Mark...

(p.s. fyi the scan for this protocol is roughly 1.5 hours, never fail to talk to the radiologist beforehand and ask for updates in the tube, this time he informed of each and every sequence, "okay this one will be 30 seconds, then 2 minutes", "okay now 9 minutes on this one". On my first scan the person said nothing and it seemed 5 hours long, this time seemed like a long lunch break, very tolerable to break things up into smaller parts so talk to your radiologist beforehand!)
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: 1210
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Postby sbr487 » Thu Apr 15, 2010 11:11 pm

"Dr Dake fixed Daddy"

Now I know the reason for that broad smile on Dr's face.
What better gift than a gift from those little angels ...
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 3:00 pm
Location: India

Postby whyRwehere » Fri Apr 16, 2010 12:24 am

Nice post Mark,
Was there a copay for the refill? :P
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 2:00 pm

Postby cheerleader » Fri Apr 16, 2010 6:41 am

Great pic, Mark. Love it. Hope the info from the MRI shows something the docs can point to as real evidence of healing. Also hope you don't need any tune ups. Keep us posted, Daddy :)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5073
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby ndwannabe » Fri Apr 16, 2010 7:46 am

"Dr. Dake fixed Daddy"

Image
User avatar
ndwannabe
Family Elder
 
Posts: 290
Joined: Sat Jan 02, 2010 3:00 pm
Location: SF Bay Area, CA

Postby CureIous » Fri Apr 16, 2010 6:46 pm

hi all.just got back from post op. ething fine. much details later.. some interesting stuff. no drama.... 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: 1210
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Postby magoo » Sat Apr 17, 2010 8:06 am

Yea Mark!!!!!!!!!!!!!!!!
We can't wait to hear about the scans. LOVE the T-shirt and looks like Dake did too! Such a nice idea.
Thanks for keeping us posted and stay well!
Rhonda
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 2:00 pm
Location: Charlotte, NC

Postby Loobie » Sat Apr 17, 2010 8:58 am

CureIous wrote:hi all.just got back from post op. ething fine. much details later.. some interesting stuff. no drama.... mark. .


Did you get another procedure Mark?
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby catfreak » Sat Apr 17, 2010 5:05 pm

Hi Mark!

Thanks so much for posting the picture! That is awesome! Waiting to hear the rest of what happened.

And those children are precious!!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 2:00 pm
Location: Mississippi

Postby Johnson » Sat Apr 17, 2010 5:33 pm

I somehow missed this until now.

Nice shirt. Dr. Dake is beaming like a proud Grandpa.

Looking forward to your report.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 3:00 pm
Location: Ucluluet, BC

Postby CRHInv » Sat Apr 17, 2010 8:42 pm

Wow! Just saw this. Terrific! I am glad there is no drama. Can't wait to hear more.
Take care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 2:00 pm
Location: Chandler, AZ

Postby CureIous » Sat Apr 17, 2010 10:29 pm

Hi all, thanks for the well wishes and concern.

Just got home after the normal 8 hour drive home, detoured 4 times on the way so it was 12 hour trip, nice to be normal tired but not fatigued. I drove home against orders, but am a bit rebellious like that haha. No really just fine.

What this was about was something we talked about at the 2 month follow up, and we have talked about in this thread about my right ear/venous hum orchestra playing in my ear. Naturally one would be inclined to infer that had something to do with the venous system on the right side. I had identified earlier what appeared to be the problem area, my right side is much larger than the left, and right there were it makes the curve near the ear, kinda flares out, so smoking gun and all that.

My mind envisioned something akin to a whistling through there, the final piece of the puzzle is the one "thin" area of the vein, where after that wide curvy part (normally shaped but just large), the vein drops across our much talked about C1 Atlas bone area, and wonder of wonders gets a bit pinched, but not a bonafide stenosis like we see in other areas, just a bit stressed is all.

To me the entire thing looks like a good case for some turbulent flow. Drainage? No problem, getting tons of drainage through there. But the "thin" spot coupled with the size/volume of flow, after just looking at the MRV, indicates something that might be correctable, HOWEVER, after discussion and looking over the scans together, our cautious doctor was wary to stent/angio up that high (in his words I'm badly paraphrasing), "we've hit a home run out of the park already, lets not go back to the first inning and replay the entire game", or words to that effect. He's always got a great analogy to use, I'm jealous.

Digressing just a bit, the stents implanted last August are in stellar condition, and are not a part of the issue or factor in other than "aint broke don't fix it" feelings...

This is a bit different, as it is way higher than the ear, involves a very tightly cramped area with our beloved ACC nerve and whatnot, hence the cautious approach.

Here's where it gets interesting, probably only to us. He then pointed to the lower collarbone area, which we all know is a frequent spot for stenosis, and talked about the one spot where it goes into the BCV, just a bit higher than that, and about the valve right there and checking that out, and angioplasting it to see if it then can effect some greater downstream flow from the higher up area (my mind said DING DING DING).

However he was talking at a distant point in time rather than right then, but since we had planned on this possibility travel-wise, I was totally game for "right now". We had already put it off from last time and I told him I just couldn't bear to exist with this another day, thinking there may have been something to do about it right now. He agreed, so Alex in her quiet and efficient way, booked the bed and away we went to the cath lab. Alex even escorted us over there, because she's cool like that.

So the gameplan was, get in there, get some pressure gradients, check things out in real time on the op table, and keep the balloon handy.

After the normal pre-op stuff, and high fiving half the nurses who were there last August , was TOTALLY BUMMED because Laura isn't there anymore, and anyone who's been there knows Laura and the rest won't care, nuff said.
It was neat to spend the entire pre-op time talking about the previous procedure and how great things were, even evangelized some of the nurses who hadn't heard of this before, or even what was happening in the hospital, who had MS stricken relatives, so if they stop in here hope they say hi! Plus the shirt got pulled out at least eleventy times!

So for those who've been there/done that with the op, it was SOP the rest of the way, except the team in there this time was even COOLER than the ones last time, which I didn't think possible. I love pros doing things professionally, they are a pleasure to watch and damn good too.

So he basically concentrated on measuring the pressure gradient across that thinner area up top first, believe he said it was a 4 but don't quote me. Is that mm/hg? I forgot. Anyways there was definitely a measureable gradient from the thin area, but we're not talking reflux concerns here and the stent held up just great (that was a bit lower). But the collarbone area which he had circled on the MRV as a possible "check it out" spot, caused him to do something I had no idea existed, but I don't know much anyways, which was ultrasound the vein from the inside out in that one area he had a suspicious eye towards, underneath the collarbone.

Now I know our good Dr. has been-there-done-that on just about everything, but of course on us CCSVI'ers he's learning stuff along with us sometimes, even when we are on the table, in this case the ultrasound (this is a doohickey that slides up the catheter wire), revealed some kind of funky formation in what should have been the valve area, but instead was more or less a flap. I don't know if this could have been picked up on even a full color doppler ultrasound, due to it's location under the collarbone, but sure as shoot it showed up on the internal sonogram. It was like a half a flop sticking out into the flow, coincidentally right where the jugular narrows down substantially. He said the narrowing is of no concern in that area, and in fact last time had noticed it but stuck with just stenting the stenosis further up.

I suspect that on any given day, the one below opens and closes depending on what position that flap is in, but long story short there's no reflux going on there. We're just talking ear stuff and my sanity...

He said he'd never seen that particular configuration before, and made sure to get copies in hand of the UT and a disk to take back to the office. Not sure what it all means, but for him to say "I've never seen anything like that before", to me, just helps to reinforce how individualized this CCSVI stuff is, and how often have we seen valve malformations already? Plenty of times! So talk about a turbulent flow, putting a traffic cone right in the middle of the drainage system cannot be considered "normal".

So his attack was still as planned, he dialed up the balloon once, then twice up to (11mm I think?), and that kind of unhinged the stuck doohickey and it just kind of does it's own thing now but seems without altering the flow, when he did a follow up check on the pressure gradient up higher, it was zero.

So there's a thin area, with a slight pressure gradient, and when he fixed the down-below part, the upper part improved, and he thought that the upper portion expanded just a wee bit.

Now I'm not going to say my venous hum is gone, because it's not, nor did I expect it to go away 100%, while that thin area still exists up high, but it has changed which is further confirmation that there were structural issues contributing to the hum, and it wasn't nerve damage related or whatever. What's odd is that the hum, instead of being a consistently playing string of notes (which I could play for you on the piano on about 4 notes), has changed ever since then to a more muted and constant type noise with much less variation. It's odd but it confirms what I thought, and what he thought, and that's a good feeling to have SOMETHING to point to other than "put on some white noise and forget about it".

Myself, while being excited that there was at least an option available to deal with it (and jury still out on that, will let it gel for a few days here), I will say that his new Asst. is super smart (aren't they all?), and she is a great addition to the team. Before the reality of the follow up surgery came up, they were very VERY keen to get on with the lesion count on the MRI's. He is going to do a proper and rigorous study of the lesion loads before and after here.
That's exciting to think about, that (even though I am not truly a one-year follow up), the first stenters like Jeff and Marie and Lew and everyone else I call pioneers are just a whisker away from making their own brains heard, and being assessed, and lesions counted, step by step, and this, through all the trials and tribulations of the past year for those who offered their bodies up with a hope and a prayer, are going to be stacking up yet more scientific evidence, hopefully all over in the lower-lesion-load column, running concurrently of course with real-life physical improvements to boot.

I know lesion load isn't empirical to prove, or disprove anything at this point, but it would be hard to argue with an across the board drop or improvement in this department. It will be exciting for all of us to get some kind of prelim data in this regards.

We had a snafu on me getting my cd's due to "rush" surgery so was unable to get the scans, but Peter down there in the library went ahead and sent them on to the house, cause he's smart like that and a totally cool dude. When they get here you can bet I'll be doing my own census count, can't wait!

Will try to get some pics up tomorrow of these areas in question. Been a long couple of days but all for the good. I'm really going to miss all those good people at Stanford, hopefully will get up there to do a follow up next year or maybe get after that higher-up thinned area before then.


Mark.

Quick sidebar on collaterals. Collaterals are indicative of a pathology, but they may or may not fill depending on one's particular haemodynamics, from what I understand they are always going to be a part of ones physiology, it's just a matter of the amount of filling, which we've of course seen plenty of times where they appear to "vanish", i.e. stop filling.

Mine on that right side were filling, but that's not necessarily much of anything to point to, BUT, after the angioplasty, the ones that were filling DID decrease in intensity quite a bit. I saw it myself right there in the OR.

My thought is that the venous system is not static, but is variable depending on all those factors we talk about, diet, exercise level, sleep position, bone structure, and any one scan in reality is a snapshot at one point in time, though some things like stenosis and tons of collaterals are a gimme, but other things may be in the "come and go" category.

This should always (in my opinion) weigh heavily in the minds of doctors, researchers, and more importantly patients. "Is this (insert pathology or lack thereof) condition present at times, then not at others?

Is it possible you get a scan one day, there's nothing, then tomorrow, next week or next flareup, voila? Should those who've tested negative so far stop looking? What if it's a transient thing, you got tested at the wrong time, CCSVI is dropped from the suspect list but it really shouldn't?
This is why I'm really really hoping that properly conducted UT gets a good kick in the pants worldwide, and somehow there is a "window" used instead of one snapshot in time. "Nothing today, we'll test once a month for 6 months, if negative all six months, then once a year". Just twirling that around a bit, any thoughts????
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: 1210
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Postby Katie41 » Sun Apr 18, 2010 8:24 am

Mark,

Once again, the pioneer! Great new discoveries! Can only help those to come. Thanks for the detailed report.

Katie41
User avatar
Katie41
Family Elder
 
Posts: 179
Joined: Sat Dec 05, 2009 3:00 pm
Location: Southern California

Postby cheerleader » Sun Apr 18, 2010 9:20 am

GREAT report, Mark. Thank you for being so thorough and so with it. You are really right about the learning curve, and I think you and Jeff --both with the ear issue--are helping the doc learn about this particular presentation. Jeff also has the tight area, very high, on his left side, which the doc ballooned. Too high for stenting. Will be interesting to see if he also has the lower issue, like you.

Can't wait for the official MRI results...again, since you and J were recently diagnosed and still RRMS, there may be some lesion healing. Glad you're home safe and sound with the fam. Keep us posted, buddy-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5073
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service