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

Postby 1_sindy » Fri Sep 24, 2010 1:12 pm

best to you Gary and your family..... wishing you all the best
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Postby IHateMS » Fri Sep 24, 2010 1:32 pm

awesome :D
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Postby AJB86 » Sat Sep 25, 2010 10:19 am

Hey Gary, while I was checking for updates on CCSVI last night I was also watching the WSOP and as I read this thread I realized you were on my T.V. Crazy coincidence! i am a 24 yr old from Jasper with pretty aggresive MS. I am hoping to get CCsVI treatent soon and playing in the World Series is on my bucket list too. Congrats on your improvements!Congrats on the solid finsh! And thnks for showing me that despite MS its still possible to schieve my Dreams!
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Postby garyak » Sat Sep 25, 2010 10:46 am

AJB86 wrote:Hey Gary, while I was checking for updates on CCSVI last night I was also watching the WSOP and as I read this thread I realized you were on my T.V. Crazy coincidence! i am a 24 yr old from Jasper with pretty aggresive MS. I am hoping to get CCsVI treatent soon and playing in the World Series is on my bucket list too. Congrats on your improvements!Congrats on the solid finsh! And thnks for showing me that despite MS its still possible to schieve my Dreams!


The field of players in the tourney had no idea I would normally get 10-11 hours of sleep per night when at home and any activity would drain my energy significantly. For the ten days I was down there I averaged about 5 hours of sleep per night and played poker for about 12 hours per day . Usually got to sleep around 3-4 am and woke up at 9-930 every morning to start all over again.
I was so tired I could hardly stack my chips and when I would win a big pot I would tell the dealer to slide me any stacks of chips I won over to me because piles of chips would take me for ever to stack.
My MS bladder was so bad on some days that I went 14 or 15 times to pee during the first day and probably missed 90 minutes worth of hands at least on day 1.
Next week on ESPN and TSN they will show me playing a few hands when day 6 is broadcast. They are also doing a short interview on me regarding my deep run and dealing with MS and there is a chance they talk about ccsvi treatment that I had mentioned to them. I was able to use the opportunity to bring some attention to MS and hopefully they talk about ccsvi next week. Stay tuned, lol
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Postby dlb » Tue Oct 12, 2010 10:18 am

Hello Gary,

Have your improvements continued or held up so far?

I have a question - you posted that you had been to BNAC for testing and of course the Hubbard fMRI. Was that a timing thing & you just followed through with both appointments or were you more interested in the results from the different protocols (basically Zamboni protocol with Doppler ultrasound plus the Haacke protocol with fMRI)?? Or am I misunderstanding completely.

(copied from your post on Dr Embry's post about his son's trip to Poland )- I too was found to have very little that was wrong show up on my doppler and mrv's. Not until the catheter venogram was done that significant blockage of my rt IJV was found and succcessfuly ballooned.(end of your quote).

So I'm basically wondering if you felt more info was gained at BNAC or at San Diego or nothing was as helpful as the catheter venogram?

Are you just going to be seeking follow-up with your neuro or do you go back to San Diego for follow-up? Did you talk about the possibility of re-stenosis with Dr. Hubbard &/or the Del Mar clinic? specifically, do you have to get back on their px list & start over or do they see you in a different light as an existing patient? Dr. Hubbard has a list of supplements that they have suggested - did they talk with you about that, post procedure? Can I ask some other questions by PM?

Thanks for your time! I hope you continue to do very well!
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Postby Jugular » Tue Oct 12, 2010 11:23 am

Hey garyak, I think I caught you last night on TSN. I wasn't watching for you as I wasn't aware of this thread. I left TSN on because I was watching MNF earlier.

My question for you is whether you would still go all in with pocket 10's against AK now that you've had your CCSVI treated? 8)
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Postby garyak » Wed Oct 13, 2010 8:25 am

dlb wrote:Hello Gary,

Have your improvements continued or held up so far?

I have a question - you posted that you had been to BNAC for testing and of course the Hubbard fMRI. Was that a timing thing & you just followed through with both appointments or were you more interested in the results from the different protocols (basically Zamboni protocol with Doppler ultrasound plus the Haacke protocol with fMRI)?? Or am I misunderstanding completely.

(copied from your post on Dr Embry's post about his son's trip to Poland )- I too was found to have very little that was wrong show up on my doppler and mrv's. Not until the catheter venogram was done that significant blockage of my rt IJV was found and succcessfuly ballooned.(end of your quote).

So I'm basically wondering if you felt more info was gained at BNAC or at San Diego or nothing was as helpful as the catheter venogram?

Are you just going to be seeking follow-up with your neuro or do you go back to San Diego for follow-up? Did you talk about the possibility of re-stenosis with Dr. Hubbard &/or the Del Mar clinic? specifically, do you have to get back on their px list & start over or do they see you in a different light as an existing patient? Dr. Hubbard has a list of supplements that they have suggested - did they talk with you about that, post procedure? Can I ask some other questions by PM?

Thanks for your time! I hope you continue to do very well!


yes any questions via pm are cool. The catheter venogram is what found my vein narrowing not the doppler and not the mrv. I haven't started all the nutritional supplements yet. I decided once on both testing lists to just pay all the fees and have 2 different opinions at Hubbard and BNAC. This allowed me to comment to pwms what each center's experience was like. I think I can get down to Hubbard on fairly short norice if I think I am restenosing. I have gone slightly backwards this last week so if this slide continues I will head back down there.
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Postby garyak » Wed Oct 13, 2010 8:28 am

Jugular wrote:Hey garyak, I think I caught you last night on TSN. I wasn't watching for you as I wasn't aware of this thread. I left TSN on because I was watching MNF earlier.

My question for you is whether you would still go all in with pocket 10's against AK now that you've had your CCSVI treated? 8)


pocket tens is a slight favorite over ace k so I would definately go allin vs ace k. My bustout hand was ten ten vs KK which, in my severe fatigued state, was a mistake which I got trapped into . Was best week of my life and was a great opportunity to bring some attention to MS. espn did a great job. I have reached local celeb status over all the espn/tsn coverage over the last 3 weeks. I will give a 1 month update next week.
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Postby drbart » Wed Oct 13, 2010 12:37 pm

garyak wrote:for anyone interested in this weeks espn coverage of the wsop main event where I was able to bring some awareness to ms here are the two pokertube links

http://www.pokertube.com/free-poker-vid ... E_Ep14_1_2

http://www.pokertube.com/free-poker-vid ... E_Ep14_2_2


These don't play for me .. do I need to sign up for pokertube for this to work?
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Postby garyak » Wed Oct 13, 2010 4:37 pm

You may need to have installed a video player download - I just clicked on the link in your post and it asked me to download adobe flash. You can just go to www.pokertube.com and search 2010 wsop main event. You don't have to register with pokertube to watch the videos.The best episodes where you see me the most are episodes 15-18 including my interview where I discuss MS .
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Postby Jugular » Wed Oct 13, 2010 8:14 pm

garyak wrote:
Jugular wrote:Hey garyak, I think I caught you last night on TSN. I wasn't watching for you as I wasn't aware of this thread. I left TSN on because I was watching MNF earlier.

My question for you is whether you would still go all in with pocket 10's against AK now that you've had your CCSVI treated? 8)


pocket tens is a slight favorite over ace k so I would definately go allin vs ace k. My bustout hand was ten ten vs KK which, in my severe fatigued state, was a mistake which I got trapped into . Was best week of my life and was a great opportunity to bring some attention to MS. espn did a great job. I have reached local celeb status over all the espn/tsn coverage over the last 3 weeks. I will give a 1 month update next week.
Hey I wasn't serious and obviiously wasn't paying close attention. If you had hit a ten, then you would have been a genius. I was in a tourney once and pushed all in early on pocket 10's and got pushed out by pocket aces. :evil:

There was a study once that tried to link MS with risk taking behavior.

http://www.ncbi.nlm.nih.gov/pubmed/16249207

Anyway, way to represent. Now go back and win it all and do a victory dance.
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Postby garyak » Mon Oct 18, 2010 8:34 am

OK, so I am 4 weeks post-procedure almost to the hour. All my initial improvements I posted are still with me. There was a 3 day stretch in the last 10 days where I thought I was sliding again but the last 3 days have been very good again.
I have had no deterioration in the last month which has never happened since my first MS symptoms started 3 years ago. Every 2-3 weeks I was noticeably worse since my first symptoms started.
My mental health has been great-not one thought of suicide when I get to a certain level of disability in 4 weeks now.
My bladder urgency and frequency had not changed post-procedure until the last two nights. Typically I am up every 2-2.5 hours to pee through the night like clockwork. The last two nights I had 9 and 11 hours of sleep and only got up once to pee each night ! It's been 3 years since that has happened let alone two nights in a row.
I can do so many things on my own now without my wife helping me - we both like that.
I have a new found evergy as my ms fatigue is almost totally gone. I have channeled this energy into fighting the Alberta government and it's stance on ccsvi. We have formed a local chapter for ccsvi advocacy and are linking up with the other ccsvi groups in Alberta .
I will give more updates good or bad as time goes by. I love thisisms.com as without you I would still be on some waiting list and getting worse by the week :)
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Postby Blaze » Mon Oct 18, 2010 8:56 am

Great Update. Give those Alberta guys hell!
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hubbard

Postby Andie » Wed Oct 20, 2010 2:58 pm

thanks for all the info on Hubbard- because of you I have contacted Hubbard about getting an appointment.


i'm glad to hear you are still doing so well

thanks
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Postby Cece » Wed Oct 20, 2010 4:17 pm

garyak wrote:I have had no deterioration in the last month which has never happened since my first MS symptoms started 3 years ago. Every 2-3 weeks I was noticeably worse since my first symptoms started.

This is why I think how PPMSers respond to the venoplasty procedure can teach us a lot. RR does not have a predictable course, your PP did. Glad to hear you're doing so well!!
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