At Stanford

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

Postby mrhodes40 » Wed May 20, 2009 10:49 am

Bill cobbled my computer I am good for a few minutes every 8 hours of charge so I will be short for now...
first thank you for all the good wishes Terry read them to me over the phone and htye mean so much.

Second of all this is real surgery. NO kidding.

Third of all Dr Dake stresses that we have no way of knowing if this *will*
help MS. However I did ask him if it were his MRV showing that blockage would he do it, and he said yes absolutely. But he wants to make sure there are no false promises implied. Jeff's recent post very clearly made that case...

Terry (My darling sister) said
pressure in the blood vessel (on the brain-side) went from 13 in one vein and 5 in the other to 2 and 1 after the stents were put in (don't ask me the scale, cuz I am not sure). .....- but that she will know more once she is off the drugs


FOURTH--Well I do know more now; mea culpa!!-------the 15 reading was not in the vein, it was somewhere else both of the veins were on the order of 5 or 6 then 1 or 2, but the surgery is considered a great success because all the numerous collateral veins that were taking the blood and which ordinarily should be invisible to venography (but which in my case were all large from carrying the load the jugs weren't doing) became once again very small while the jugs were carying the load as they should be, this means that the path of least resistance is now my jugulars.....which is the right way for things to be.

ok I gotta post this cause I am on borrowed computer time....

can you beleive the luck the battery giving its last gasp THIS week??? geez
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 3:00 pm
Location: USA

Advertisement

Postby Sharon » Wed May 20, 2009 11:13 am

Cheer you wrote:
Sharon, everyone is going to be different


You and Marie have reminded us that we will be different. Dr. Dake said the same. I find it quite comforting to know that now I will be treated "for me" - that I have something that is unique to me and it can be fixed. The "average" measurement is not going to work with this treatment.

Glad you gave a call to Marie - Maybe we could coax Angela to go incognito and give us updates on those at Stanford. :wink:
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby peekaboo » Wed May 20, 2009 12:13 pm

how are you feeling today? (not an MS Q just a post op Q)


Marie wrote:
numerous collateral veins that were taking the blood and which ordinarily should be invisible to venography (but which in my case were all large from carrying the load the jugs weren't doing) became once again very small while the jugs were carying the load as they should be, this means that the path of least resistance is now my jugulars.....which is the right way for things to be.


Did you get before & after pics ?
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby LR1234 » Wed May 20, 2009 1:02 pm

I don't know if this is possible but it would be so good to get some pics of your MRV's in some way...My MS neuro wants to see them... (shame you can't host them all together on a site. I know there is no guarantee that removing the stenosis etc will help the MS but at least dr's who are interested can see what was found.
LR1234
Family Elder
 
Posts: 1501
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby CureOrBust » Wed May 20, 2009 4:54 pm

LR1234 wrote:but I have never had headaches before and the dr I went to see regarding CCSVI was saying if I had never experienced headaches it is highly unlikely to find any stenosis/blockages.....any thoughts?
I think I have the least headaches of anyone I have met. I may get a (what I think is a mild) headache, once a year, if that. When I get it, it takes me a while to realise its a headache (I think). Usually its caused by an external physical reason such as cold breeze blowing on my face on a cold day.

I have NOT had an MRV (as yet), however, I did get the dopplers attempted, and they found a reflux in my jugular valve. So I think headaches can be non-existent, even if you do have a vascular issue. Hope this helped.

And, welcome back marie! :D now we just have to fix the insufficiency of your battery. :?
User avatar
CureOrBust
Family Elder
 
Posts: 2883
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby Artifishual » Wed May 20, 2009 5:07 pm

only headache i get is when i have one to many dos equis or listen to the POTUS on the TV................... :roll:
Artifishual
Family Elder
 
Posts: 646
Joined: Sun Mar 09, 2008 4:00 pm

Postby cheerleader » Wed May 20, 2009 5:36 pm

Artifishual wrote:only headache i get is when i have one to many dos equis or listen to the POTUS on the TV................... :roll:


Oh, man! I had that same headache...for eight years, but it finally went away last January :) I kid, because I love, Shannon!

Well, if Marie didn't have headaches before, she's got one today. Hope you're feeling better, kiddo. Take it slow, let your hubby spoil you. Better days are ahead.
I think everyone's reflux patterns will be different, even with the same area of stenosis. Jeff and Marie had totally different patterns of collateral drainage. That's probably what makes the manifestation of their individual MS so different.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5015
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Artifishual » Wed May 20, 2009 5:45 pm

HA HA well tonights headache will be thanks to Francis Coppola and his wonderful Silver Label Pinot Noir. :D


Love you to AC :oops:
Artifishual
Family Elder
 
Posts: 646
Joined: Sun Mar 09, 2008 4:00 pm

Postby MariesSister » Thu May 21, 2009 1:02 pm

Hi everyone - wow, lots of info here. I know Marie appreciates all of the love and support you are sending her. Thanks for the warm welcome to me as well!
I have Marie on the phone now. She says that she has discovered how important it is to have your reg. doc. on board - she is lucky because her doc and Dr. Dake spoke on the phone and her doc is completely behind this. It's important because of the follow-up: she will be checking coagulation every two weeks, and following up on INR.
Marie is talking my ear off as I try to write this - she says she has bright eyes today - like a little kid. She feels bright and alert, still significant pain in her neck (boy, I could really play with THAT one) and head, but she is doing well. She says most people won't have this type of surgery, like her and Jeff - this is not the most common stenosis - to be this high in the jugulars. Zamboni's were usually lower.
User avatar
MariesSister
Newbie
 
Posts: 2
Joined: Mon May 18, 2009 3:00 pm

Postby Sharon » Thu May 21, 2009 3:34 pm

Thanks Terry for the update - glad to hear that Marie is doing well. Good information about informing the GP - I haven't done that yet, but will.

She feels bright and alert, still significant pain in her neck (boy, I could really play with THAT one)

Remember Terry, Marie will be reading this when she has her computer back on line!! LOL

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby cheerleader » Thu May 21, 2009 7:47 pm

Marie is talking my ear off as I try to write this - she says she has bright eyes today - like a little kid.


Thanks for keeping us posted, Terry! So great to hear from Marie thru you...I have to prepare you, get ready for your sister- the energizer bunny. My hubby has regained his voice (and then some...witness his posts here. He didn't have the energy before this procedure, but he's got it now!)

I've noticed bright, clear eyes, too. Marie said Bill noticed her coloring was better after the procedure, that she had "rosy cheeks". This was such a big change for Jeff, too. He just looks healthy. He's also eating more, but losing weight (...which is ticking me off!)

Send Marie a big hug from us, and tell her to keep healing. Hope she's getting rest and the pain is lessening.
all the best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5015
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Jeff_wMS » Fri May 22, 2009 12:40 pm

Hi Marie - I'm so glad to hear your procedure went well at Stanford. I hope you feel better soon - the first 5-6 days were the worst and then the thobbing head pain subsided for me. Get good rest, as much as you need whenever you can.

And I'm glad to hear you are already feeling some subtle but palpable changes as I did (and still am!). Wishing you all the very best,

Jeff (cheer's husband)
User avatar
Jeff_wMS
Getting to Know You...
 
Posts: 16
Joined: Mon May 18, 2009 3:00 pm

Postby mrhodes40 » Sat May 23, 2009 6:34 am

Thanks everyone!! I got home late Friday after tues surgery.

Jeff said
throbbing head pain


Yes it is really bad isn't it? I slept most of the night last night for the first time since surgery instead of being awake most of the night fussing with pillows and thngs in an attempt to alleviate the pain, which was an improvement.

This is not minor surgery, it is a pretty big deal.

My neck gets sore quickly when I type too, darn it! I won't be able to type a lot.

I will make a regimen entry today...
thanks everyone for all the support it means a lot to me :D :D
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 3:00 pm
Location: USA

Postby gibbledygook » Sat May 23, 2009 8:22 am

Marie! Wow. I wish you a speedy recovery from the surgery and an end to the MS and maybe even improvements in your RA. Who knows what improvements may occur with blood flowing the right way... :lol:
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: 1412
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Postby peekaboo » Sat May 23, 2009 8:30 am

Was anything like aspirin used to help lessen the headache? nice to know Sharon & I are next week and getting the jitters heart racing etc.
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users