garyak was liberated today

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

Postby Rieja » Tue Sep 21, 2010 11:20 am

Very nice indeed! Keep us posted :)
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Postby Vivianne766 » Tue Sep 21, 2010 3:38 pm

Wishing you and all other liberated MSers continued improvements.
:)
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Postby garyak » Wed Sep 22, 2010 10:07 pm

OK so here is my update. I just got in my house in Grande Prairie. I have been up for 17 hours . I was going to update tomorrow but I'm too full of energy - like is this really happening???? My wife is more tired than I am lol.
So, my ms fatigue is probably 60-75% better 2 days after treatment. I am typing at twice my normal speed and using my left hand to type which often, at this time of day, won't type.
I have slightly less numbness in both soles of my feet.
My left foot is slightly easier to lift off the ground. I'm not grumpy tired like I would normally be at this time after travelling all day.
I never had my daily headache today. My anal sphincter was able to pinch a loaf twice today and it normally can't. My feet are warmer than my hands right now and normally they would be like ice.
I had the most vivid dream the first night after procedure since pre ms - but it was a nightmare that scared the crap out of me , lol.

$2500 for testing
$7500 for treatment
Having all these little improvements in just two days - frickin priceless.

Placebo , hahahaha not a chance . I was a guy that was hoping, skeptically, to just slow or somehow stop progression and truely expected nothing more from the procedure!!

I will post all further positive ( or negative ) changes as they happen.

Dr. Hubbard felt that in a few weeks that he will have a handful of clinics up and running. I got the feeling that he was welcoming any and all IRs into the IRB. He also said that his website has had over 20,000 hits in the last week or so since he announced the national IRB program. He also said False Creek in Vancouver Canada has an IR lined up and are hoping to get in on this IRB.
Wowwy

As a side note I will be on TSN tomorrow night ( Thursday ) ( the ESPN equivalent up here in Canada ) playing in day 5 of the world series of poker main event where I finished 85th out of 7319 entrants in July this summer in Vegas. I used this opportunity to bring awareness to MS and ccsvi. I will also be on ESPN next week and TSN for day 6 coverage where they did a cool feature article on me with interview as a poker player with aggressive MS. ESPN coverage next week is on Tuesday night and TSN next Wed or Thursday.

Out for now , talk to you all soon. I love thisisms.com and all you who I consider family .
Last edited by garyak on Wed Sep 22, 2010 10:28 pm, edited 3 times in total.
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Postby dlb » Wed Sep 22, 2010 10:17 pm

So happy to read your update. I can hear the elation in your words! YEAH...
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Postby Blaze » Thu Sep 23, 2010 5:40 am

Great News!!
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Postby nellie » Thu Sep 23, 2010 6:07 am

I am so happy for you. Thanks for updating us on progress of Hubbard's IRB list. You sound so elated. Great!
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Postby prairiegirl » Thu Sep 23, 2010 7:38 am

Great to hear-- may the improvements continue!
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Postby garyak » Thu Sep 23, 2010 10:15 am

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

next week espn is broadcasting day 6 coverage where they are doing a feature article and interview on me as a poker player with ms who wanted to have ccsvi surgery. I will post the link to this next week.

This morning I could do so many small tasks with my hands that were very difficult or impossible pre-treatment . I will keep updates as time goes by. I'm in a very good mood today :)
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Postby cheerleader » Thu Sep 23, 2010 10:23 am

Gary!!! Such a terrific report, I'm so happy for you. I missed you by an hour or so at the Hubbard's. Was really sorry I couldn't meet you and your wife. Thanks for the info on your poker tournaments...very cool! Keep spreading the word, and enjoy that energy and good mood :)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby daniel » Thu Sep 23, 2010 12:00 pm

Glad to hear about your positive results Gary! Thanks for the updates and added awareness during WSOP!
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Postby garyak » Fri Sep 24, 2010 9:37 am

VIEWER DISCRETION ADVISED , lol

It will be hard to be brief with my day 4 post-procedure update but I will try.

First off I want to be raw and honest about a topic that is rarely discussed on this forum but an important one; MS and SEX

I have been happily married to my wife Tracy for 29 years. We have enjoyed a very healthy sexual existance in our relationship.
Ironically the ONLY body part I can think of that was NOT affected by my MS was my penis. I could always " get it up " but being a 7.0 to 7.5 on the EDSS I had no strength, balance or stamina to make love - like a man -anywhere near how I used to. Last night I was able to make love to Tracy like I haven't in over a year.

$2500 for testing
$7500 for treatment
Being sexually liberated - frickin priceless.

While getting dressed this morning ( most days my wife needs to help me with underwear and pants and socks ) I was able to stand for about 30 seconds without any support ( has been 3/4 of a year since being able to do that ) and I even added a partial deep knee bend which I havent done in about 8 months or so ( without hanging on to anything ) and easily got dressed on my own.
My feet are normal temperature ( always ice cold before ) almost normal in color ( VERY purple before ) both are less swollen.
I took several steps in my walker which I haven't touched in a few months.
I woke up this morning unable to get back to sleep after 9 hours of sleep ( usually I sleep 11-12 hours easily every night ).
I have better dexterity in my fingers, less spasticity in my legs, my left foot could never be raised off the ground - even an inch - for many many months , today I raised it off the ground 6 inches easily.
I can clear my throat with less effort now.
I can move my toes better and can flex my left foot very slightly upward and it has been totally paralyzed in that manner for many many months. Some nights my wife would move my legs to a comfortable position while in bed when I couldn't do it - that has not been a problem for the last 2 nights.
Second day in a row with no daily MS headache ( unless I was hungover in the past I never got headaches pre-ms )
I had a wierd sensation in my mouth 3 days in a row now. I was always able to chew an iced drink like a frozen coffee or frozen smoothy and my wife would say " how can you do that without your teeth hurting" ( like a brain freeze ) , my teeth now feel very sensitive to ice cold drinks - have the dental nerves woken up???
My brain is working better and yet I would have told you I had no brain fog from MS before last week - I think now I did but it was mild.
You need to realize that I was diagnosed with MS only in May of 2008 and have had an ultra aggressive and progressive disease course since. I have been in a wheelchair since Nov of 2009 . I saw my regular neurologist just 4 days before my procedure and told her what I was going to have done. She wants to follow my progress.
During the exam she said my disease progression was very unique and that she acknowledged that it was like I had a TERMINAL DISEASE. Well needless to say today I feel like I am being reborn.
My 23 year old son has made a very dramatic video of me being helped up the stairs to our bedroom on the second floor of our house on Sept 2 2010. It was with 2 of my adult sons helping me - one lifting my legs up to the next stair one at a time and the other son holding my left arm helping me get up the stairs. When it is safe I will get another video on my own as soon as I think I can do it.
out for now, gary ( Just call me PLACEBO MAN ).
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Postby sbr487 » Fri Sep 24, 2010 10:04 am

while i thought i would another year or two, stories like these make me rethink ... hmmm ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby Cece » Fri Sep 24, 2010 11:13 am

I am so happy for you. Tears in my eyes! CCSVI is such a breakthrough. I wish all the results were like yours but I think many of us will get at least a little closer to this sort of success as the doctors learn what they're doing.

Oh I just reread more closely (I averted my eyes for a bit there) and you've shared details on the Hubbard clinics! And they might be up and running in a few weeks. Thank you Dr. Hubbard!

I hear you about the 'I love thisisms'...what a support this has been and a resource and an amazing group of people. I might someday post less here but I won't forget you all. :)

Garyak, congratulations, I wonder what else you can do now!!!
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Postby garyak » Fri Sep 24, 2010 11:58 am

Cece wrote:I am so happy for you. Tears in my eyes! CCSVI is such a breakthrough. I wish all the results were like yours but I think many of us will get at least a little closer to this sort of success as the doctors learn what they're doing.

Oh I just reread more closely (I averted my eyes for a bit there) and you've shared details on the Hubbard clinics! And they might be up and running in a few weeks. Thank you Dr. Hubbard!

I hear you about the 'I love thisisms'...what a support this has been and a resource and an amazing group of people. I might someday post less here but I won't forget you all. :)

Garyak, congratulations, I wonder what else you can do now!!!



I will be a royal pain in the ass to politicians, ms brass and anyone who will listen to my story now that I have energy - this has awakened placebo man - watchout nay-sayers now.Wait until I can post my before and after videos it will be impressive.
For the first time in 3 years I have been wiping tears of joy cece, love you all , thisisms has given me my life back - at least for now
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Postby hannakat » Fri Sep 24, 2010 12:04 pm

Awesome reports Gary! I'm sooo happy for you and hope you continue to improve and improve! I love your "frickin priceless' quotes!
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