Notes from CureIous' at Stanford

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

Postby CureIous » Mon Mar 15, 2010 9:45 pm

Thanks everyone!!!!

Also to just mention, haven't had any issues at all with my optic neuritis, going back through old pictures, whenever a flash went off on a camera for a pic, my right eye always looked more open than my left, never realized it until noticing it was like that in all the pics except the non-flash varieties, going back at least to 2000. Of course in my mind it's not too coincidental that the same eye with my first presenting MS symptom in 2004, closes a bit slower under a flash than the left side. Least that's my take on it. In this pic though you don't see that.

Purely anecdotal. Could be one of those odd physical "individualities" that doesn't mean much of anything...

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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Postby ErikaSlovakia » Tue Mar 16, 2010 1:27 am

Congratulations, Mark!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Sharon » Tue Mar 16, 2010 6:49 am

Mark - little Noah is beautiful. Congratulations.

I do wonder though - I know that April 15th is not one year from your procedure at Stanford -how come you are going in early?

Exciting times for the Miller family!

Sharon
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Postby Ruthless67 » Tue Mar 16, 2010 8:40 am

Hi Mark,

What a handsome photo of father and son. So glad you are now more able to be an active father to your children. What a blessing.

Lora
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Postby CureIous » Tue Mar 16, 2010 6:32 pm

Sharon wrote:Mark - little Noah is beautiful. Congratulations.

I do wonder though - I know that April 15th is not one year from your procedure at Stanford -how come you are going in early?

Exciting times for the Miller family!

Sharon


Sharp eye there! Was going to go up and get my head examined again, to see if anything fixable is going on with my right side, that is contributing to this maddening hum in my ear (to recap, had it pre-op, improved flow post-op worsened it), so since it was 3 months or so prior to my 1 year, I asked if we could just roll it all into one, to save an extra trip and expense, which he was game for. No rush or anything, still alive and kicking very well... :)
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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Postby CureIous » Tue Mar 16, 2010 6:35 pm

ErikaSlovakia wrote:Congratulations, Mark!
Erika


Hi Erika! Good to see you around. Did you update your thread recently?? I watched the news broadcast with you too, very well done!

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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Postby Cece » Tue Mar 16, 2010 6:40 pm

CureIous wrote:Also to just mention, haven't had any issues at all with my optic neuritis, going back through old pictures, whenever a flash went off on a camera for a pic, my right eye always looked more open than my left, never realized it until noticing it was like that in all the pics except the non-flash varieties, going back at least to 2000. Of course in my mind it's not too coincidental that the same eye with my first presenting MS symptom in 2004, closes a bit slower under a flash than the left side. Least that's my take on it. In this pic though you don't see that.


Huh! I've noticed that in my pictures too...and was rather depressed to think that's how I look all the time. I never thought to think of the flash (along with my right eye's nerve damage) being at fault. I am going to have my husband take a few pictures of me with and without flash to see if this is the case!

Congratulations on your baby!!
Last edited by Cece on Tue Mar 16, 2010 6:50 pm, edited 1 time in total.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby CureIous » Tue Mar 16, 2010 6:49 pm

catfreak wrote:Mark,

Wow March 4th is getting so close! Congrats!!

Sounds like you are doing great. I am glad I am not the only one who still gets MS'y sometimes. Tell me more about your MS hum when you get time.

Cat


Hi Cat!
Oops, only takes a month or so to get back to you (sorry!). Last month was a very busy month! I'm just trying to reply as many as possible right now so not bumping my thread every day. MS Hum, well, I guess we'll call it venous hum, as that is the technical term for it, not sure at all how interrelated it all is with neurological, and/or flow stuff, since the ENT guy I saw awhile ago was able to halt it by practically strangling me and cutting off the flow (don't try that at home!), in my mind one can kick the neuro part of it to the curb, ie "it's not lesion related" or demyelination that is at it's core, and probably not related at all, it's strictly related to flow. Probably due to my right jug being larger than the left (very noticeably so), and if I had to guess, it is in closer proximity to the ear nerves and whatnot than the left one is, which has never given me an issue. This is noticeable on my regular axial MRI/MRV shots, when compared to the left.

Not trying to overthink things, but I do like a little calm and peaceful quiet every now and again, but quiet now is the worst time for this, like cranking up the volume on a repetitious noise that never varies, only in intensity, which to me backs up the venous hum angle, as you always have venous flow, some times more than others, like when on the blood thinners, it exacerbated to it's worst, before it was even evaluated.

My hearing was checked, both ears are stellar, no hearing loss. No transient type stuff like one would get with the typical ringing or tinnitus. Doesn't coincide/exacerbate/alleviate at any time with any other sickness and/or condition like sinus/heat/cold or whatever.

Too bad it can't just be nudged back a bit from whatever nerve it is close to, to make it stop, but "irritating noise" just doesn't justify anything radical at this point.... Van Gogh cut his ear off for the very same thing, I think about him often haha.

:) 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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Postby CureIous » Tue Mar 16, 2010 6:52 pm

Cece wrote:
CureIous wrote:Also to just mention, haven't had any issues at all with my optic neuritis, going back through old pictures, whenever a flash went off on a camera for a pic, my right eye always looked more open than my left, never realized it until noticing it was like that in all the pics except the non-flash varieties, going back at least to 2000. Of course in my mind it's not too coincidental that the same eye with my first presenting MS symptom in 2004, closes a bit slower under a flash than the left side. Least that's my take on it. In this pic though you don't see that.


Huh! I've noticed that in my pictures too...and was rather depressed to think that's how I look all the time. I never thought to think of the flash (along with my right eye's nerve damage) being at fault. I am going to have my husband take a few pictures of me with and without flash to see if this is the case!


Yeah I hear ya! I remember looking at pics and asking, "what's with the pirate act anyways?". Then I made a conscious effort to not do anything with my eyes other than relaxing and open/normal, and it still did it! That's when I put two and two together. Heck I had to go look at my records and ask wife which eye it was that had turned inwards at my first onset, and sure enough same eye. So would be interesting to hear if you get the same results.....

Mark

Btw, if you look at my pic above, you can see the right eye is just a teensy bit more open under the flash.....
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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Postby cheerleader » Tue Mar 16, 2010 7:22 pm

Mark...
Jeff feels your pain, or hears your noise, anyway. He has this in his left ear, calls it the "whoosh." Didn't have it before the procedure, but he also didn't have a left jugular vein, since it was 95% closed. Now it's open and he hears the blood. His is called pulsatile venous hum. He hears it when it's quiet...his hearing is perfect like yours, and he doesn't notice it when he's composing. He says he'll take the whoosh over exhaustion, but I still hope there's a solution for you guys. It's probably part of the tight real estate in your necks. Hope you get some answers.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Tue Mar 16, 2010 9:18 pm

Hey, Mark - you wrote
Sharp eye there! Was going to go up and get my head examined again, to see if anything fixable is going on with my right side, that is contributing to this maddening hum in my ear (to recap, had it pre-op, improved flow post-op worsened it), so since it was 3 months or so prior to my 1 year, I asked if we could just roll it all into one, to save an extra trip and expense, which he was game for. No rush or anything, still alive and kicking very well...


How could I forget our telephone conversations in the month of August? Hey, you, me and your wonderful friend! I hope the good doc is able to help the C-sharp? hum in your ear. I had the hum before the procedure and I still have it. Would love to know if he thinks it can be fixed. Did you hear him on the U-Tube where he placed a stent to rid a lady of the pulsatile tinnitus? Interesting isn't it? Look forward to your report.

I guess Jeff is next up since you decided to jump in front of the line :D I am going to delay my annual by a month so that my daughter and I can go together -- girl's weekend is planned!

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Postby CureIous » Mon Apr 12, 2010 5:22 pm

Sharon wrote:
I guess Jeff is next up since you decided to jump in front of the line :D I am going to delay my annual by a month so that my daughter and I can go together -- girl's weekend is planned!

Sharon


I'm always taking cuts, ask my sisters haha. We're out of here Wednesday a.m. for the third and final voyage/road trip to Stanford, been one heck of a ride that's for sure. At this time last year, there wasn't much hope beyond "more of the same" fatigue and absolute dreading as summer approached, now, just can't find enough hours in the day. I'm driving most of the way, Don will just have to hang on for the ride haha. Sides, driver gets radio! Last year I was passenger both ways, wouldn't even consider driving that far at that time...

Jeff however will be the first true one-year follow up test for a good before/after shot, what a day that will be, maybe a TIMS party is in order.

I'm sure if anything untoward happens in the interim I'll be back there again, but 8 months of *relatively* smooth sailing says otherwise, should one extrapolate that far.... As for now, with July 1 eclipsing the far edge of my COBRA, "it's go time". Make hay while the sun is shining and all that. The one possible "clean up" area in my left IJV is up higher on the left side, also will be investigating oft-mentioned right ear venous hum issue. I think I misspoke previous, as it is all considered "tinnitus" as a general dx, more specifically though as venous hum. Interesting that they mention ligation of the IJV as a possibility in the literature, in regards to venous hum. Not a chance buddy just got those fixed! :) It could be on the arterial side too from what I read...

I know at least my neuro will be excited to get a first hand glimpse since he has a stream of my MRI's and MRV's. My GP is networking also, "spreading the word" in his own circles, stuffed his hand with many a paper and images too.. He knows my neuro very well , one big happy family. Good to have both on board.

Wanted to repost the letter to the editor in my local paper for the 3 or 4 people that may have missed it on the other thread where I posted it:

Image

That took minutes to do online, which is an option for many papers now. I'm glad they left in the Alliance mention, also interesting to note, that I didn't write out CCSVI in long form, so they did quite a bit of homework on this to verify everything, which is good! I hope everyone takes a minute or two to compose a quickie response the next time an article appears in their paper. Can't hurt! Hopefully the good folks doing the IRB at Loma Linda read it too lol.

Lastly, I wanted to take a minute to thank Joan for all her hard work, back when it was just "Cheerleader" and TIMS and not a whole lot else, look how far it's come in 8 short months! I'll admit to not knowing all the particulars when I first started here last July, but me and my stents and my wife and 3 babies thank her very much for all her efforts. It's been quite a ride since last August. Quite a ride indeed. Bring on the summer, it don't scare me no more.... :)

Mark.

p.s. I'll be wearing this T-shirt I made up there, might just take a quick tour of the neurology dept eh? Or perhaps a jog...

Image


Wanted to toss in also, that the number one thing that I have this year that was in very short quantity the past few years, is HOPE.....
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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cheerleader

Postby Gordon » Mon Apr 12, 2010 5:37 pm

thanks too
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Postby ozarkcanoer » Mon Apr 12, 2010 6:14 pm

Curious,

What a lovely trio of children ! I see your are wearing your heart on your t-shirt, LOL. I bet Dr Dake just loves it.

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Postby Rokkit » Mon Apr 12, 2010 6:16 pm

That shirt is awesome, bro. Can't wait to hear your report.
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