starting to panic

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

Postby CureIous » Thu Dec 09, 2010 3:47 pm

I have to warn you, for the first little while, you will be extremely hyper sensitive to the signals your body is sending you, any good will feel really good and vice versa, even though mine was definitely to the good, I'm glad things leveled out after a few months. I'm just trying to push you to the murky middle, it's a good place to hang out until you know for sure either way. Not overly exuberant over perceived gains, and not panicky over perceived losses or lack of gains. Myself, I set a mental 3 month marker, and resolved to not get overly excited until then, not saying there wasn't internal celebrations, or that slight panic at the little twinges in my neck and whatnot, that's always a good impetus to take a deep breath, remind yourself that you have just been through an emotional roller coaster, and allow yourself to just be a patient for awhile... I think you'll read a lot of stories of people pushing it too hard too soon, then had to chill out a bit and let nature do it's thing. (And yes, that is presuming a positive result, which is all I can personally attest to).

I will say that one of the best perks so far, in the "not necessarily a medically identifiable +/- department", is the regaining of early memories almost down to sights and sounds. It's like they were stuffed in the bottom of a closet and forever forgotten, which is okay, because when you don't know what you can't remember, you don't miss it! I get a couple new ones almost every day. So whatever is healing up in the brain, whatever areas are getting rediscovered oxygen, are far beyond just the short term.

Good luck on your trip. Godspeed and keep us posted!
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
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Postby javabean » Thu Dec 09, 2010 5:10 pm

Thank you for your responses. I will keep you posted.
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ccsvi

Postby blossom » Thu Dec 09, 2010 5:56 pm

javabean, i wish you the very best with treatment and recovery.
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Postby Ruthless67 » Thu Dec 09, 2010 6:23 pm

Mark,

I found your statement, "The regaining of early memories almost down to sights and sounds. It's like they were stuffed in the bottom of a closet and forever forgotten, which is okay, because when you don't know what you can't remember, you don't miss it!" extremely interesting.

Ever since I was a small child my memory has been poor. My siblings often speak of things I don't remember. I had a girlfriend who often told me "what I said" and a boss once told me, Lora don't tell fibs, your no good at remembering them. (Probably called in sick, then told about my Great 3 day weekend escapades at work on Monday. lol) I can hardly remember my anniversary, don't recall special dates, family deaths, ages of my siblings etc. I have a "little black book" I carry. Not with phone numbers in it per-say, but with notes in it that are pertinent info that I need, but I just can't seem to remember.

It would be one of the greatest gifts to have a memory.

Lora
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Postby jacksonsmommy » Sat Dec 11, 2010 7:59 pm

The best piece of advice given to you so far was to mentally prepare yourself for NO improvement. Any improvements you do get will all be a bonus then.

I also second the advice to take it easy after the procedure. There will be ups and downs. Hopefully you'll notice that the trend will be more ups than downs and the downs won't be as down.

Good luck!
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Postby Loobie » Sun Dec 12, 2010 6:46 am

jacksonsmommy wrote:The best piece of advice given to you so far was to mentally prepare yourself for NO improvement. Any improvements you do get will all be a bonus then.

I also second the advice to take it easy after the procedure. There will be ups and downs. Hopefully you'll notice that the trend will be more ups than downs and the downs won't be as down.

Good luck!


This is a very good summary of what you should probably do boiled down into a couple of 'easy to do' sentences! Especially the first one. Well the second one too! Good luck and I'll be praying for you!
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Postby javabean » Sun Dec 12, 2010 12:24 pm

Here in Albany! Some type of abnormality was found on both sides of my neck. No details of course but tomorrow will soon be here. Any thoughts on two sides being stenosed as opposed to just one side?
Thanks again!!
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Postby Loobie » Sun Dec 12, 2010 12:26 pm

I thought it was most often two sides; mine was
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Postby Cece » Sun Dec 12, 2010 1:06 pm

Two sides is more common than one. I think it gives you twice the opportunities for improvements. All the best & keep us updated!
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Great!

Postby leetz » Sun Dec 12, 2010 6:20 pm

Wishing you many blessing's and improvement's!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby jacksonsmommy » Sun Dec 12, 2010 7:01 pm

For me, the doppler looked like both sides had issues. Turns out it was only the left. Even with "just" fixing the left, I got dramatic results from the procedure.
CCSVI procedure May 31, 2010
RRMS - Official diagnosis January 2009
MS symptoms since at least 2000 (EBV trigger 98?)
75 - 80% Resistant Stenosis in Left Jugular - Stent
Tokuda Hospital, Bulgaria (Dr. Petrov)
Immediate and substantial results!!
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Postby javabean » Sun Dec 12, 2010 8:59 pm

Thanks for the good wishes. I'm here at the computer b/c i can't sleep. I'm hoping for ther best!
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Postby CureIous » Sun Dec 12, 2010 10:16 pm

Good luck. "Hurry back" as grandma used to say...
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
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i guess...

Postby leetz » Sun Dec 12, 2010 10:57 pm

That is what we are suppose to do "expect nothing...receive everything" many blessing's to you!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby javabean » Mon Dec 13, 2010 2:29 pm

Had my procedure today. Blockage found it both jugulars -- to the point they were almost completely closed. Also azygous had blockage and balooned. Siskin said the veins opened well.
As far as symptoms, it seemed easier walking back from the procedure than to the procedure. Could be placabo, hope not. Feet still tingling in feet. Pain and spasticity unknown, but like I said, walking seemed better. Let's hope the good feelings continue!
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