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 » Thu Aug 12, 2010 8:24 am

Sweet! Can't wait to hear about your next neurology appointment.

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dlb
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Post by dlb » Thu Aug 12, 2010 8:31 am

nicknewf wrote:Sweet! Can't wait to hear about your next neurology appointment.
DITTO... what a remarkable update, Flash..... arrrghh, renovations!! I hear you! How about that new found energy?

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Rieja
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Post by Rieja » Thu Aug 12, 2010 9:16 am

Excellent news! ... Less than a month to go for me. I hear ya about the "man" thing. I can only pray/hope that I can heal as well as you are.

Keep with the updates. Nice to hear about how things are going from more and more people.

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JoyIsMyStrength
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Post by JoyIsMyStrength » Thu Aug 12, 2010 4:16 pm

Way to go, Flash!

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Drury
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Post by Drury » Thu Aug 12, 2010 9:03 pm

Terrific news FlashHack!

You just made my day.

Drury

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cheerleader
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Post by cheerleader » Fri Aug 13, 2010 9:51 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.

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.
Flash---Just read your update to Jeff...he knows those feelings of tears mixed with sweat, and sends his regards. Thanks for sharing this. Jeff chopped up a bunch of oak on our property this week with our teenage son and a friend. We went boating, hiking and to the county fair in full sun and 90 deg. heat...all stuff people take for granted every day. But he doesn't. And I know you don't either...

Tip on the tight calves (Jeff went thru the same thing after angio) Try soaking in a warm tub or jacuzzi in the evening. It loosens up those muscles. The muscle tone will return with proper gait. If you can do some PT, it will help. We're really happy for you. Keep healing and God bless,
Cheer (and Jeff)
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Farmz
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Post by Farmz » Fri Aug 13, 2010 10:28 am

Congrats FlashHack. Glad to hear things are looking bright.
I'm not sure if you mentioned it and I just missed it, but how old are you, and how long ago were you diagnosed with MS?

Kate_PghPA
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Luv That Isaiah reference! Glory to GOD!

Post by Kate_PghPA » Mon Aug 16, 2010 2:55 pm

My people are destroyed for lack of knowledge ... Hosea 4:6

Thanks to the Sponser of all !! Finally we KNOW what is at the root of MS!

So glad for you to be recovering from Chronic Cerebrospinal Venous Insufficiency (ccsvi )

I understand you are keeping your doc 'undisclosed' ...but I am so grateful doc was able to liberate you... I think all of us liberated or not should continue to share the Good News of Ccsvi Liberation, as well as the Good News of GOD!

Keep well, live long and HEAL!!
Venoplasty 12/26/10 Vas.Surg/ Pgh,PA Angio'd Both IJV

2/9/11 F/U Transcranial Doppler: flowing well
8/15/11 Hosp. Exac. "MS" 1st Spinal lesions EVER seen/ MRI
9/7/11 F/U T. Doppler: flowing well

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PCakes
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Post by PCakes » Thu Aug 26, 2010 9:29 pm

Hi flash,

How goes the reno? :)

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PCakes
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Post by PCakes » Fri Sep 10, 2010 5:41 am

FlashHack wrote:My next neurological appointment is in September. Can't wait.

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FlashHack
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Two Month Anniversary

Post by FlashHack » Sun Sep 12, 2010 2:50 pm

Well, two months down and still holding steady. I think I got all of the low hanging fruit in the first month. Now the going is slow as what is left must be nerve damage. That said, I am confident that the numbness in my hands and feet gradually recedes every day. The difference from day to day is hard to distinguish and so I hesitated to mention it before. My right hand, which was not the first to go numb, is feeling very close to normal. The numbness seems to be relegated to my fingers in both hands, but in my right it is all but gone in my thumb and fore-finger with numbness remaining in the other fingers inversely proportional to finger size (math nerd speak!). The goose-bumpy, prickly sensation that I had on the top of my left forearm on the flight home from the undisclosed location has lessened slightly, but has not gone away. I still take this a sign that the nerves are trying to heal in that hand, which was the first place my MS manifested itself back in 2005.

My legs are still a little wonky, especially the right one which still exhibits a degree of spasticity in the knee. Balance is still good though as is the lower body fatigue and the urinary related symptoms.

Thanks everyone for all the well-wishes. I tell everyone who asks about my procedure how much it has helped and about the maddening behavior of the medical establishment. Which reminds me about my own Neuro. Funny story, on July 16th (four days after my procedure) I was laid off from the company I had worked for for the past 9 years (a small investment consultancy). I wrote my Neuro and told him that I had had the liberation procedure but I would have to cancel my appointment for lack of health insurance. To his credit, he asked me to keep the appointment at no charge as he wished to see me and hear about the procedure. Oh, and I am still in the gait study and now in a second. For some reason, OHSU really likes to watch people with MS walk. My appointment is not until the 27th of September and I will let everyone know how it goes as he is the head of Neurology at this influential hospital.

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PCakes
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Post by PCakes » Sun Sep 12, 2010 4:16 pm

Flash...thanks for the update and very sorry about the layoff. Talk about a whole new life ahead of you.
Very happy to hear that you are still doing well.. :) and your neuro sounds very promising!

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Farmz
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Post by Farmz » Mon Sep 13, 2010 3:34 am

Hi Flash. Glad to hear you're still doing well! Sorry to hear about the job, but I'm sure you'll find something better, just may take time, and if there's one thing that MS teaches you, it's patience.
Look forward to hearing what the results of the appointment are, and thanks for putting me in touch with the Dr. Who Shall Not Be Named. :lol:

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Trish317
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Post by Trish317 » Mon Sep 13, 2010 7:29 am

Ooops! I named the location that should go unnamed in my thank you thread. I might be getting yelled at any time now. lol!

So glad to hear you're feeling improvements, Flash. I'm sorry about the layoff. Hang in there. There's something wonderful out there for you.

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FlashHack
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Post by FlashHack » Tue Sep 14, 2010 8:27 pm

Trish317 wrote:Ooops! I named the location that should go unnamed in my thank you thread. I might be getting yelled at any time now. lol!
I saw that. Hide your face in shame!!

On another note, I just wanted to mention something I just noticed last night. I was lying there in bed worrying about the future and whether or when my veins might restenose and so I pulled out Zamboni's seminal paper once more to look up that stair-step chart I had seen on restenosis rates. As I looked at it I actually read the title this time and it said "IJVs RESTENOSIS."

But, my main problem was in the azygos and that chart was directly to the right. Holy cow! Of the 56 patients where Zamboni found problems in the azygos only one restenosed at 6 months (one other had to be stented right out of the gate, the only stent Zamboni used)!! That means 96% of the treated azygos veins stayed open. So if your problems are limited to the azygos, as mine were, you don't have to worry much about restenosis. Whew!

I'm sure that most of you already saw that, but I hadn't and so I thought I would mention it in case someone shared my ignorance.

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