FlashHack is Liberated

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Cece
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Post by Cece » Sun Jul 18, 2010 3:29 pm

Thanks, vivavie.

He is in close contact with Dr. Sclafani so I don't know that anything said at the symposium will be new to him. He must choose not to use ivus because of the added expense and time that it takes? It also has not been proven, as emphasized recently in DrS's thread.

Still there is at least one person posting here (CUREious) who would still have an untreated stenosis if not for ivus.

Also has FH been back here lately? Does he know everyone from thisisms came out in support of him?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

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hope410
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Post by hope410 » Sun Jul 18, 2010 3:33 pm

Thanks, vivavie!

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silverbirch
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Post by silverbirch » Sun Jul 18, 2010 4:11 pm

Cece wrote: Also has FH been back here lately? Does he know everyone from thisisms came out in support of him?
I was also thinking the same Cece It would be lovely to hear from him.


Silverbirch

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CCSVIhusband
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Post by CCSVIhusband » Sun Jul 18, 2010 4:20 pm

Would you want to come back if you were excited to tell your story and a bunch of (insert some adjective here of your choosing) attacked you - when everyone knows where you went anyway?

I do agree you shouldn't paraphrase doctors if they didn't give permission, or whatever for those exact words because that could be harmful ...

But unless your me and don't mind being attacked by the riffraff, then you'd probably want to go away for a while too.

I hope he comes back soon too ...

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silverbirch
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Post by silverbirch » Sun Jul 18, 2010 4:27 pm

He will come back he’s bigger than that he will spread the word.

He never meant any harm it was taken out of context

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hannakat
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Post by hannakat » Sun Jul 18, 2010 5:49 pm

Awesome post flash!!! I can't tell you how excited I was to read your post and the news of your improvements! Our 'sponsor' is indeed great!

Please continue to post and think all things positive (am sending +++++++vibes for continued healing) 'cause it's a blessing!

Also 1 of the 700-800 patiently waiting.....


(I agree...people need to learn how to PM...IMHO it's mostly the same person who hasn't really been reading these threads all along....sentence structure is just too similar regardless of what's said)

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FlashHack
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Post by FlashHack » Mon Jul 19, 2010 11:57 am

Okay, my wife made me take a break from thisisms so I have been held up in a secret undisclosed location :wink: . Thanks for everyone's messages of support and encouragement. I will most likely resign myself to only posting once a week or when I feel I have something significant to report.

Let me just say that I am acutely aware of why Zamboni emphasized the urgency of being liberated sooner rather than later. The damage to my spinal cord will definitely take a long time to heal, if it does at all. That said, my balance is as good or better than it was a week ago and the absence of bladder urgency continues to surprise me. For example I went to the store (about 10 minutes away) yesterday to pick up a couple of things and while trying to find them I felt that old familiar twinge that used to signal impending doom. I thought to myself, "Uh oh!" I finished my errand, came home and forgot about it until an hour or so later, at which point I had a mini celebration in my head at the fact that...well you, know!

Until recently I was able to "jog" to our local community center to lift weights with my teenage son. If you can imagine an 85 year old jogging, that is how it probably looked. My right leg and knee had become pretty bad so about a month and half ago I felt that for safety's sake I should give that up. This morning I got back on the horse. There are no miracles to report on this front as my right knee and hip are still fairly troublesome. I probably looked like a 75 year old (eat it 85ers!). The good news is that the heavy feeling in my legs was not there and the even better news is that I was much, much less winded than I have been in years! The presence of more oxygen was very noticeable and appreciated.

My better balance has allowed me to abandon my cane. It has been great to have back my other hand rather than having it devoted to a stick that kept me from toppling or bumping people in elevators. About the balance, post-procedure I have been experiencing a strange swimming sensation (disorientation, dizziness) at times involving my vision especially when I turned my head quickly while walking or looked at my feet. It is different than the vertigo that I had been experiencing before the procedure. I got less and less until, as of today, it seems to have resolved, so I have come up with two theories regarding it:

THEORY #1: For a long time I have been relying on my eyes and visual cues to maintain my balance. This disorientation could be a result of my eyes re-learning how to trust my balance and surrendering to my internal gyroscope.

THEORY #2: Maybe this is related to my brain adjusting to increased levels of oxygen in my visual cortex? Or the process of the blood and iron being flushed out?

Perhaps neither of these theories are correct. Whatever, I am happy that it has abated. So many "different" but not necessarily "positive" signs and sensations post liberation. Sometimes, in the moment, it is difficult to know if things are moving backwards or forwards. Healing or getting worse. You find yourself over-analyzing every little thing and second guessing yourself. Do my hands feel less numb this morning, or is it just wishful thinking. Do I have more feeling in my feet? What is that new intermittent tingling sensation in my left hand? You get the picture.

I guess the best change of all is that I am now searching for rumors of healing and health instead of decline and disability. That is the most liberating thing of all.

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Karenems
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Post by Karenems » Mon Jul 19, 2010 12:15 pm

Glad to hear you're doing well. Noticing improvements is a good thing. Thanks for posting.

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MS_mama
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Post by MS_mama » Mon Jul 19, 2010 12:42 pm

great news you have there, Flash, and your wife is smart from keeping you away from this crazy place :wink: Never mind the nutters who jumped on you about publicly posting DR SISKIN's name (cos, like, he "came out" on his own flippin' website). Anyway. Desperate situations breed overzealous actions, so I can sort of understand why people flip out. Keep healing, and let's hope this liberation sticks and you have sustained improvement.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />

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silverbirch
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Post by silverbirch » Mon Jul 19, 2010 2:15 pm

FlashHack wrote:

. About the balance, post-procedure I have been experiencing a strange swimming sensation (disorientation, dizziness) at times involving my vision especially when I turned my head quickly while walking or looked at my feet. It is different than the vertigo that I had been experiencing before the procedure. I got less and less until, as of today, it seems to have resolved.

You find yourself over-analyzing every little thing and second guessing yourself. Do my hands feel less numb this morning, or is it just wishful thinking. Do I have more feeling in my feet? What is that new intermittent tingling sensation in my left hand? You get the picture.

.
Lovely to hear from your good self.
I am 14 months DX with MS so new to all this I had an attack which left my right hand side paralised and my returns were slow and my memory of over analyzing still very vivid.

About your balance & strange swimming sensation this happened to me but 1 months after my attack if it didnt have four walls and a roof it felt odd and when walking in the woods I felt the leaf's on the ground was near my vision riseing up if you like, it did go some months after.
looking left & right was odd when my husband would say look at this or that I could not do it walk talk and look Left/right to many things but it went. Weird if it had four walls and a roof I was ok

What is that new intermittent tingling sensation in my left hand?

when I got this feeling it was a sign that part of my limb returned at first I thought it was the start of something bad - I do remember that feeling.. it was then followed and an itch - I hope this is a good sign for you also.

Silver

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pegmegrund
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Post by pegmegrund » Mon Jul 19, 2010 7:24 pm

Flash-

I'm so happy to hear of your improvements. Thanks for posting such detailed messages.

I'm very interested in your story as I have mostly spinal lesions, and am curious if I have issues in the azygous... Someday I'll find out!

Your results are encouraging, and I hope your dear wife lets you visit us now and again! :lol:

Pam

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Ernst
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Post by Ernst » Mon Jul 19, 2010 11:59 pm

Wonderful to hear this Flash, keep raporting! I also understood why it is important to have procedure done in early stage. My wife dx is 3,5 yrs and got her liberation done 3 weeks ago. Yesterday we had a one hour exercise in area with lots of hills - we walked with skipoles and I had difficulties to walk as fast she did! Of course there are MS symptoms still, but now direction is good.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg

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BooBear
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Post by BooBear » Tue Jul 20, 2010 4:30 am

Flash, I am so delighted for you!! Please keep us posted!!!!
Three veins angioplastied.  One renewed life.  

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Drury
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Post by Drury » Tue Jul 20, 2010 8:25 pm

Hey Flash,

Thanks so much for the update - It is so helpful to us all.

Here's to continued improvements.

Drury

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nicknewf
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Post by nicknewf » Wed Jul 21, 2010 7:56 am

Can't wait to read your post next week. (My wife also wants me to limit my thisisms exposure.)

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