FlashHack is Liberated

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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nicknewf
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Post by nicknewf » Tue Jul 27, 2010 6:25 pm

Flash hack, you should send him an email and tell him to meet you at the gym, and copy him on his form letter!

orion98665
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Post by orion98665 » Wed Jul 28, 2010 12:13 am

FlashHack thanks for the reply; I can't wait for your followup appointment.
Right now I'm just educating myself as much as I can about CCSVI and when the time comes I'll have my wife tested. It's just difficult knowing when. She just got diagnose with MS and has no disabilities at this time and is in remission. Anyhow, thanks again for the reply and when the time comes I'll be off to San Diego. From what I recall from this forum there's a good IR trained to Zamboni's protocol.


Thanks again.

Bob

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FlashHack
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Post by FlashHack » Wed Jul 28, 2010 7:06 am

There is are doctors in Seattle that are seriously considering testing and treatment. The doctor who treated me offered to give the name of one (a friend of his) he is collaborating with if I felt like I was restenosing. When the the time comes you should check it out.

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FlashHack
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Post by FlashHack » Wed Jul 28, 2010 7:07 am

nicknewf wrote:Flash hack, you should send him an email and tell him to meet you at the gym, and copy him on his form letter!
I like it! :lol:

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BooBear
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Post by BooBear » Wed Jul 28, 2010 8:09 am

I'd add the link to your pre and post videos and ask him if that could be placebo. :)
Three veins angioplastied.  One renewed life.  

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whyRwehere
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Post by whyRwehere » Wed Jul 28, 2010 11:48 pm

Wow, I just saw this for the first time. I was staying away from the over emotional hissy fits myself, and now I see there can be even more irrational people out there...a sliding scale as it were.
Anyhow, I'm very glad for you FlashHack, and I am proud of the way you stood up to the billing department in your journey to treatment post...I wouldn't have even paid them (mainly because I couldn't have, but also out of principal: they said it was pre-approved, end of story).
Keep getting better.
Why

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lovebug
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How are you doing Flashhack????

Post by lovebug » Wed Aug 11, 2010 5:01 pm

Just wanted to know how you have been doing since your surgery in Albany? Any changes!!!!!

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FlashHack
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Post by FlashHack » Wed Aug 11, 2010 7:59 pm

Tomorrow is the one month anniversary of my liberation.

Since my last update I have noticed much fewer visual disturbances. In fact I am sitting here trying to think of the last time I had one. My vision issues typically came on after physical exertion and after lunch for some odd reason. The best way that I can describe it is that it appears like static on the television centered in my visual field. Sometimes it was so bad that I couldn't read, but it usually lasted less than 30 minutes. Thinking back several years before my diagnosis, this visual disturbance was my first symptom and it came on when I would backpack (along with a slight swelling/throbbing in my hands). I actually went to an ophthalmologist for it and he suggested it might be migraines. It would be a few years before I would know the real reason.

The other symptom that I noticed was gone this week is my inability to completely stop my urine stream and/or completely empty my bladder. I just noticed this last week that this symptom is now better. Not just better, I am going to say it is gone and it is great. This was one of the more annoying symptoms and I say, "Good riddance!"

As for balance, spasticity, fatigue and stiffness in my legs this has continued to improve along with my balance. I find myself doing stuff and then saying, "Whoa! I just did __________!" Things like:

1. Looking in a different direction than I am walking without falling over.
2. Quickly changing direction.
3. Running up a flight of stairs two at a time (just did that for the first time yesterday!).

Sometimes I overestimate myself and stumble. Then my mind races, "Are my veins closing up again?!" I then take a mental inventory of all my improvements and analyze what I just tried to do until I convince myself that it's actually me trying to rush my healing and not that my healing is going backwards.

As for lower body fatigue, over the past week I and my three teenagers emptied four bedrooms of furniture and carried it down a flight of stairs. Sometimes I was walking backwards down the stairs while carrying the end of a dresser or other piece of furniture - insanity, I know - but I didn't fall or trip! I then spent the last week tearing off the old trim and installing and painting new trim as well as replacing a pocket door. I have been working full days remodeling my freakin' house!!

One day while I was nailing on some baseboard tears started to mingle with my sweat. Not because I had hit my thumb, but because I realized that for the first time in a long time I felt manly. I didn't feel like a patient or a diseased person. I felt like a man. It makes me all the more angry at the naysayers who are preventing people from getting treated. I find myself writing irritated emails to people who i know won't read them. I wish there was more that I could do.

In this week's NewsWeek there was an article that was particularly relevant to CCSVI. You can read it here: http://www.newsweek.com/2010/08/05/the- ... eason.html. Apparently, from this article, it is not neurologists' fault. They are simply too highly evolved.

Anyway, last thing to mention is my calves are very sore. I guess I never knew how much my lack of balance and the stiffness in my legs had made me change the way I walked, stood, etc. Since I have been working full days on the house, I have been using them much more than I have in the past few years and they are definitely feeling it. This is true for every muscle in my lower body. It was like they had a multi-year vacation and suddenly got called back to work. I never thought I would say this, but it feels so good to be sore.

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Trine
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Post by Trine » Wed Aug 11, 2010 8:13 pm

GREAT NEWS, Flashback! Love reading your detailed updates.




:D

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sbr487
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Post by sbr487 » Thu Aug 12, 2010 12:26 am

FlashHack wrote: Apparently, from this article, it is not neurologists' fault. They are simply too highly evolved.
Don't tell them. They might even start believing it. We already have enough problems from them!
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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hannakat
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Post by hannakat » Thu Aug 12, 2010 2:51 am

Wonderful update Flash!!! You go MAN!

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BadCopy
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Post by BadCopy » Thu Aug 12, 2010 3:30 am

It is refreshing to see your update! I can relate 100% with #1 and #2. Hope you have continued good health Flash.

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lovebug
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Flashhack is doing great!!

Post by lovebug » Thu Aug 12, 2010 6:06 am

Life is good!! Your comments on how you have improved since your surgery brought a few tears from me. I am really happy for you and I hope you continue with good health forever!!!!!!!! I am trying to get into Albany for the venogram and possibly surgery but the waiting list is long. I am trying other places as well but that all takes time. Sometimes I think it is like `fighting the war but loosing the battle`. But I keep trying.................It was good to hear from you again.

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elliberato
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Post by elliberato » Thu Aug 12, 2010 6:52 am

Great News! I know what you mean by the "manly" thing. Curious iF you are on anticoagulation?

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PCakes
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Post by PCakes » Thu Aug 12, 2010 7:56 am

FlashHack wrote: One day while I was nailing on some baseboard tears started to mingle with my sweat. Not because I had hit my thumb, but because I realized that for the first time in a long time I felt manly. I didn't feel like a patient or a diseased person. I felt like a man. It makes me all the more angry at the naysayers who are preventing people from getting treated. I find myself writing irritated emails to people who i know won't read them. I wish there was more that I could do.
hmm..you've lived with the MonSter.. you 'stuck your neck out' .. you could walk away yet, you stay in the fight.. sounds like you're doing a fine job to me.. :)

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