Notes from CureIous' at Stanford

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
Rose2
Family Elder
Posts: 274
Joined: Sat Sep 12, 2009 2:00 pm
Location: SF area
Contact:

Post by Rose2 » Wed Aug 04, 2010 7:18 pm

Great !!!!
Did Dr. Dake say OK to dive?
From 11,000 or 14,000? Did he care?
I have never dreamed of diving again since my CCSVI treatment, but if it is OK, I am there. I miss it so much.
I just do not want to do anything to mess up my wonderful new life.
you know.
Rose
It there is any re-stenosis, a good rush from that last step just might clear it up! haQ

User avatar
Trish317
Family Elder
Posts: 357
Joined: Sat Sep 06, 2008 2:00 pm
Location: Rhode Island

Post by Trish317 » Wed Aug 04, 2010 7:39 pm

Awesome!

User avatar
cheerleader
Family Elder
Posts: 5360
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Post by cheerleader » Wed Aug 04, 2010 8:17 pm

ADRENALINE RUSH!!!!
wow, what a celebration. Thanks for sharing, Mark. Simply amazing.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

User avatar
CureIous
Family Elder
Posts: 1253
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA
Contact:

Post by CureIous » Wed Aug 04, 2010 8:22 pm

Rose2 wrote:Great !!!!
Did Dr. Dake say OK to dive?
From 11,000 or 14,000? Did he care?
I have never dreamed of diving again since my CCSVI treatment, but if it is OK, I am there. I miss it so much.
I just do not want to do anything to mess up my wonderful new life.
you know.
Rose
It there is any re-stenosis, a good rush from that last step just might clear it up! haQ
Yeah, he okay'd it, but I doubt there is anything in the literature to indicate otherwise lol. Believe it was 14,000 with a 60 sec freefall which goes by way too fast! Even though the freefall part is great, once the canopy is open that's the best part, just floating and sightseeing, so quiet and peaceful. Great head-clearer... Can't wait to get the vid, their editing guy wasn't there today so watching the mailbox.... I can say, and please don't anyone read too much into this, it seemed to do something to either push out (increased flow and/or pressure), or IN on the stents cause I felt every millimeter of those things after about 30 sec's of freefall and it hurt afterwards, not excruciating, but definitely a good warning sign to pay attention to, might be pushing the envelope and won't hazard it again. It also made me think this would *probably* be an especially bad idea for those with angioplasty without any hardware holding that shape. My guess is the sudden pressure increase going from 14k to whatever in less than 30 seconds, and a further part of that guess is also that there's no valves on the right side (on me) and I'm sure the left also (since it's all stent basically) to hold the flow back from rushing upwards, hard to say and just a guess is all, totally moot point cause that is absolutely the last time for me. Just not a good idea to experiment with (said after the fact of course). No after effects, all is well, landed the same way I went up, no worries!

Mark, the ex-skydiver, highly recommending against doing this!... :)
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
elyse_peace
Family Elder
Posts: 173
Joined: Thu Dec 31, 2009 3:00 pm
Location: Putnam, NY
Contact:

Post by elyse_peace » Wed Aug 04, 2010 9:00 pm

Mark -
That sure is a great picture!.Sky diving is one of my dream endeavors. Thanks for showing so clearly that a future is possible!
Great way to celebrate.

ErikaSlovakia
Family Elder
Posts: 1125
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe
Contact:

Post by ErikaSlovakia » Wed Aug 04, 2010 11:10 pm

Mark! Happy anniversary! :D
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

User avatar
coach
Family Elder
Posts: 201
Joined: Wed Jun 02, 2004 2:00 pm
Location: georgia

Post by coach » Thu Aug 05, 2010 2:35 pm

Congrats to you. Looks like fun. My daughter says she wants to skydive one day. Thanks for being one of the trail blazers. Did you have to get written permission? (lol)

User avatar
ozarkcanoer
Family Elder
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri
Contact:

Post by ozarkcanoer » Thu Aug 05, 2010 3:36 pm

WOW !!! If you can sky-dive then I can surely get through my CCSVI procedure on August 17. I wonder if Dr Dake would be willing to venture a guess on which is more dangerous :D .

ozarkcanoer

User avatar
CureIous
Family Elder
Posts: 1253
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA
Contact:

Post by CureIous » Sun Dec 19, 2010 8:41 pm

Hi all, don't like to bump my old thread up for chit chatty stuff, but don't like making new threads for said same either.

I signed up for a class this month as mentioned somewhere else on here that required 3 full weekends of 10 hour days of instruction, with the finals being yesterday and today, this is in an area of my trade that I am NOT proficient in, plus being out of the field for so long means there is some major rust around the hinges.

This was a personal test of sorts for me, it's easy to say "the stenting/angioplasty worked for me" when the old cog foggy portion of the brain hasn't been put to some real testing, along with fatigue and all that. Real world as they say.

These tests we had this weekend were a real pressure cooker, only 30% average pass the course, and that's experienced journeymen, not guys off the street. Some of this stuff I haven't put my hands on in a long long time. Needless to say, after a very late night last night (got a second wind and was good to go til 2 a.m. lol) and only 5 hours sleep, was the first person up for the gauntlet this morning at 7 a.m. Plus it was pouring outside, hadn't even finished my coffee yet, and they told me it was my turn first thing. And guess what? He said I had the highest score out of all the people tested so far, surely he meant the guy standing behind me?

Soaking wet, tired, brain dead and needing a glass of wine and a hot tub, we then had to go inside and take a 2 hour written test of 100 questions, part of what the past two weekends of instruction were about. I finished in 45 minutes even after double checking all my answers, and scored 94%.

This was for a very important and much coveted certification in my trade, and looking back, I realize this is something I would never have even signed up for before the procedure. I'm just saying it is awesome to say, "hey brain, hey body, I REALLY need you to just be normal and do stuff I ask you", and it just does it for you. That's cool. It may not be a big deal to other people, but means the world on this end and I am very thankful for the capability of feeling like my old self, before the time when MS crept on the scene.

My thought was if I could handle all this, in adverse conditions, under time constraints and stringent "one mistake you fail" requirements, then going back to work, which I really thought was a thing of the past before last August, is going to be really neat. I haven't had a paycheck since Dec 2007, there's a big job hiring in the next few weeks and I am good to go, better than ever.

It's about the possibilities of the future and long range planning, instead of just trying to survive and hoping a remission is coming sooner than later.

Sooner has arrived and has kinda moved into the place... I'm going to start charging sooner rent...

Thank you Dr. Dake, thank you Stanford. Our Christmas present this year will be 544 days straight of boringly normal that I wouldn't trade for anything.
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

Cece
Family Elder
Posts: 9332
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece » Sun Dec 19, 2010 8:52 pm

That is seriously great news, congrats.

User avatar
CRHInv
Family Elder
Posts: 403
Joined: Sun Aug 30, 2009 2:00 pm
Location: Chandler, AZ
Contact:

Post by CRHInv » Sun Dec 19, 2010 8:56 pm

Good for you! I am so glad to hear your news and really appreciatet you sharing it with all of us. Keep us posted on what happens next!
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
Katie41
Family Elder
Posts: 179
Joined: Sat Dec 05, 2009 3:00 pm
Location: Southern California
Contact:

Post by Katie41 » Mon Dec 20, 2010 1:41 am

Congratulations! Great job! It is so nice to be "normal"! Have a lovely "average" Christmas, with your "everyday" abilities. Love getting "better" with age, really.
Last edited by Katie41 on Tue Dec 21, 2010 9:59 am, edited 1 time in total.

User avatar
Trish317
Family Elder
Posts: 357
Joined: Sat Sep 06, 2008 2:00 pm
Location: Rhode Island

Post by Trish317 » Mon Dec 20, 2010 8:36 am

Congratulations!!!!

Rokkit
Family Elder
Posts: 669
Joined: Tue May 19, 2009 2:00 pm

Post by Rokkit » Mon Dec 20, 2010 8:44 am

Wow, Mark, just awesome - congratulations!

David1949
Family Elder
Posts: 915
Joined: Mon Aug 23, 2010 2:00 pm
Contact:

Post by David1949 » Mon Dec 20, 2010 9:36 am

Congratualtions! That is indeed wonderful news.

Post Reply

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”