Hi from Jeff, re. my stent treatment at Stanford

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

Postby mrhodes40 » Mon Nov 09, 2009 10:31 am

Yeah Jeff and Joan! Whew on that one. It probably was a post viral blocked eustacian tube after all...

Dratted viruses and allergies anyway :x

So glad you are on the other side of that.

There'll probably come a day when "Oh no it must be the MS" is not the first thing our minds jump to, but that day is probably a little further down the road.

My husband was telling me just yesterday about how his 53year old self is not jogging all that fast so my personal efforts with the bioness walker are probably impacted by my not-19-year-old-self which after all is the package my "MS" comes in :lol: :lol:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Advertisement

Postby SammyJo » Mon Nov 09, 2009 11:08 am

I have some guilt issues about any complications folks have with the stenting.


Stop that guilt! Both you & Marie have lived up to your health professional oaths, been very blunt and stressed that this is an experimental procedure with risk ranging from mild, to even death post-procedure from blood clots for the 2 months on blood thinners. And there is no long term data on how stents will do in the jugulars.

You back up everything with the research. This allows a rational person to weight the risk/benefits, against the MS risk they already face.

For me with increasing disability, housebound, and the fear the next fever would leave me bed ridden, I was already interviewing nursing homes. So the choice for me to take the risks of this procedure made sense. I'm 10 days out and glad I did it. For somebody younger and with less disability, waiting a year and watching our progress might make sense, and the procedure will only improve. I would not fear that the powers that be will be able to hold this away from us, since there are already docs like Haacke & Zamboni publishing evidence.

The worry is vested interests will the MS drug industry has shackled the neuros to useless drugs running 5 billion/yr, and they won't give it up. Well, there are 500,000 MSers in the US, if each gets a $10,000 stent, hey that's 5 billion! Should be enough to ease the neuro profession into the kinder/gentler vocation of helping us with rehab and growing new myelin!

I know it is not just you and Marie, but you two lead the charge, and now many have joined the cause here, and we are all educating each other.
Thank you everyone!
User avatar
SammyJo
Family Elder
 
Posts: 208
Joined: Wed Mar 10, 2004 3:00 pm

Postby ozarkcanoer » Mon Nov 09, 2009 11:19 am

Dittoo x 10 to the googleth power to everything SammyJo said. Life is full of chances. We all look at the evidence around us and try to make our best move with all the knowledge we possess. CCSVI is backed up by SCIENCE. Plus, how will we every know what the best procedure is to treat CCSVI if there isn't a first person to try it, and then a second then a third, etc., etc. There should be NO guilt for everyone here, only hope. I remember when there was a first heart transplant !!!! CCSVI has to be right !!!!
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri

Postby cheerleader » Mon Nov 09, 2009 7:51 pm

Thanks, guys. Really appreciate the encouragement. SammyJo, bless your heart, I hope you get some healing...really do! And just so you know- Marie's the medical professional...I'm just a singer, so no one should listen to me, unless there's a melody :)

Yup, Jeff was the 1st- Neil Armstrong....and Marie was Buzz Aldrin. They're the heros in this tale, for sure, canoer! We're learning more everyday.

On page one, Jeff talks about his screwed up jugulars. Just wanted to post this pic we just got from Dr. Dake....picture's worth a thousand words. Check out the tortuous collateral veins cork screwing around in his neck. Those are no longer there...just 2 straight jugulars. Think it explains alot- more than my blabbing. Next post here from Jeff, promise!

Image

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5077
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby CureIous » Mon Nov 09, 2009 10:44 pm

Yeah my right ear deal has gotten much worse in the past month or so, the day after the operation it was gone completely. It gets worse when my bp is up for whatever reason, but it is decidedly louder. During my obligatory yearly sinus infection last week it got even worse. So these thoughts about relationship to the vasculature aren't far off from what I was thinking either. Improved flow is making it worse, but my thinking is it will improve in time. Something is and has definitely happened that has changed in my head, and since that is about my worst complaint so far, I'll take it! Sure wouldn't even consider undoing anything that has been done, not for a second! Heck no! Leave my stents be! :) Not like a little ear ringing is debilitating or anything, just irritating is all... 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 radeck » Mon Nov 09, 2009 10:55 pm

The picture of Jeff's jugulars is impressive...

Am I following this correctly that the theory here is that establishing normal blood flow in people with MS leads to whooshing sounds and tinnitus that people who always had normal blood flow don't have? In other words, is the theory that MSers ears are not used to the normal blood flow because they had bad flow for a long time?

Alternatively, is the ringing/whooshing an MS symptom?
radeck
Family Elder
 
Posts: 398
Joined: Mon Feb 16, 2009 3:00 pm

Postby ozarkcanoer » Tue Nov 10, 2009 6:17 am

cheer... I sent the picture of Jeff's jugulars to my friends at the Hope Center in St. Louis. I have emailed the Hope Center constantly since I met with Matt and Dr Woolsey last Wednesday. Below is my email and the administrative director's response. I am going on a tour of the Hope Center THIS Wednesday. I hope to have some impact then also.

Link to Hope Center : hopecenter.wustl.edu


------------------------------

On Nov 9, 2009, at 2:46 PM, "Jill Nolan" <j_nolan@swbell.net> wrote:

Hello Matt,

I apologize profusely if I am emailing you too much. Is anything I am
sending you of interest ??? Is there anyone in your MS research area
looking at this information ??? I understand that you have many
demands on your time and I am single minded. I just need an
encouraging word..... or a "stop this spamming please", and I will
cease and desist.

Thanks,

Jill
------------------------------

(from Matt)

Well it's more than I can keep up with, but I don't mind. And I did
have to rescue a few from the automated spam filter :). Seriously, I
am finding it interesting so feel free to continue. I haven't had a
chance to talk with our MS experts about it yet, but appreciate
getting the material so I can talk intelligently about it when I do. I
hope you won't get frustrated by the slower pace we are able to keep
up - too many things and too little time means we must satisfy
ourselves with incremental steps into new areas rather than the
immersion I would prefer.

Matthew J. Stowe J.D.
Administrative Director
Hope Center for Neurological Disorders
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri

Postby Arcee » Tue Nov 10, 2009 6:38 am

Joan, that picture is amazing. Did Dr. Dake do something special to capture such a great shot? Or, I guess another way of asking, why now? Is Jeff being beautified for a presentation or for use on your holiday cards :wink: ?
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 3:00 pm
Location: Massachusetts, USA

Postby Ernst » Tue Nov 10, 2009 7:21 am

The effect of that picture would be even more dramatic, if there would be similar photo of healthy veins. But wonderful photo. Think of all the collecting evidence from Buffalo study - who can argue that "that is nonsence, etc.."?
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
User avatar
Ernst
Family Elder
 
Posts: 294
Joined: Sat Nov 15, 2008 3:00 pm
Location: Rovaniemi

Postby cheerleader » Tue Nov 10, 2009 8:14 am

Arcee wrote:Joan, that picture is amazing. Did Dr. Dake do something special to capture such a great shot? Or, I guess another way of asking, why now? Is Jeff being beautified for a presentation or for use on your holiday cards :wink: ?


What a great idea! Merry Christmas, Happy New Year and tidings of great flow! :lol:
We got a bunch of pics together for the CTV folks, to illustrate Jeff's journey. I hadn't posted any, but got the OK now, since it will be public domain soon. To see what regular jugs should look like, go to Dr. Haacke's site-
http://www.ms-mri.com/
They should be straight (not curly) and cylindrical from top to bottom. Now Jeff's are. Nothing special about this shot....it was one of many. Now you can see why Jeff decided to go thru with the procedure. He was a pretty obvious case- and Dr. Dake was hooked after seeing it.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5077
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby gibbledygook » Thu Nov 12, 2009 7:37 am

Hey Cheereo,

I'm very glad Jeff's tinnitus-like symptoms have abated. I am finding the post-operative changes to be a bit back and forward but trending in a positive fashion. It's scary when one feels one is sliding backwards as the tinnitus must have suggested. I'm sure that the stents cause a major difference in a lot of the fluids in the brain so one may well find odd sensations occurring. For instance I had a lot of headaches on the left most stented side a few weeks ago but now they have vanished. I hope no new symptom emerges.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
User avatar
gibbledygook
Family Elder
 
Posts: 1414
Joined: Mon Feb 14, 2005 3:00 pm
Location: London

Postby cheerleader » Mon Nov 23, 2009 8:38 pm

Well, God has a sense of humor. We're at Stanford....just said goodnight to radeck. He's doing fine, bright eyed and full of talk. Met his sweet wife and BEAUTIFUL child. I'll let radeck tell his tale...

Now, for ours. Jeff checked in with Dr. Dake because the whooshing was continuing and he was concerned about some new headaches. Jeff's in having an exploratory/ballooning of that left stent. Dr. Dake thought he saw something up at the top of the stent. Jeff's been in there for an hour or so. We'll see what's up. I'm in the waiting room, and Jeff's still in there. So...prayers and light are appreciated.
xox,
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5077
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby daniel » Mon Nov 23, 2009 8:46 pm

Wishing you and Jeff all the best Joan, you guys deserve it!

Lots of hugs,

Dan
User avatar
daniel
Family Elder
 
Posts: 203
Joined: Tue May 19, 2009 2:00 pm
Location: Toronto, Canada

Postby Ruthless67 » Mon Nov 23, 2009 8:54 pm

Oh Joan,
I hope you have support there at Stanford. We are sending our prayers out for you & Jeff. Just wish I could truly reach out and hug you, so please know its there with you.
Lora
User avatar
Ruthless67
Family Elder
 
Posts: 422
Joined: Tue Oct 27, 2009 3:00 pm
Location: Montana, USA

Postby mrhodes40 » Mon Nov 23, 2009 8:54 pm

Love and light to you both Joan! Prayers are on the way. :!:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

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