Just a BAD COPY......

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

Postby KikiT » Tue Aug 17, 2010 4:13 pm

Good Luck and Best Wishes....hopefully you will become..GoodCopy!!
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Postby CureIous » Tue Aug 17, 2010 4:59 pm

Good luck, really. You guys are the future of this now. I've always had a sense from the start that the RR'ers like me and a *few* others were good for the initial "kick in the pants" but the real, undeniable, point-out-able lack of progression and/or improvements in the SP/PP'ers is where the real meat is here, clinically speaking. Of course that will vary tremendously just as in the RR'ers, and some will be on the low end of the improvement pyramid and some on the bottom and some in the middle. Who knows who fits where? But, it's kind of hard to deny when you see someone "toss the cane" or use it far less than before, whereas heat fatigue is more difficult to "see" improvements in, other than the patient's word of course, since the fatigue itself can be so variable from day to day.

Very exciting times, keep us posted!

Mark
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 AlmostClever » Wed Aug 18, 2010 6:40 pm

BC,

Safe travels and Liberation! Good Luck!

A?C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby L » Wed Aug 18, 2010 7:04 pm

I think anyone who chooses a great name like 'Bad Copy' and lives in a place with such a great name as '10,000 lakes' is bound to be very lucky..
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Postby BadCopy » Wed Aug 18, 2010 7:58 pm

Thanks all !!!
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Postby BadCopy » Mon Aug 23, 2010 9:50 pm

8) 8) 8) 8) 8)

I just got home tonight and don't want to stay up late but just had to say that I was expecting absolutely nothing because I have had this so long. I can track things across a room with my eyes again (even when I have had a few). I would say that is at about 90% and it was at about 50-60%. Skin temp on r hand and foot is near normal. Used to be in the low 80s. I have not taken Provigal since the op. My walking has improved. I need to build up the muscles that have atrophied. I can sense the better balance all the time. I didnt have to run to pee. The other thing was that I peed ALOT !!! Not sure what that is about but I most definately am not retaining fluid.

I had all minimal stenosis. base of R and L Jugs, Hi on the R side and the Azygus.

Thank you all for the information and the kind words. For those of you waiting : Condition your mind to expect nothing. That way if nothing happens you are OK. But the % is with you and if it happens it feels soooo good !!!!!


More tomorrow.
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Postby Cece » Mon Aug 23, 2010 11:01 pm

Congrats BadCopy!!!

I am jealous of the abandoning of the Provigil; that is something I am hoping to do myself, once I ever get around to getting liberated. :)

Very glad to hear you got some great results!!
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Postby AlmostClever » Tue Aug 24, 2010 3:49 am

Glad to hear you're back and feeling better!

I was wondering about Provigil and Nuvigil. They never had any effect on me. I wonder if that may be due to not enough of it getting into the brain quickly enough or in great quantity because of poor blood flow? Or is it more of once it's in, it's in and quantity doesn't matter? Regardless, it would be wonderful to say bye to a damn expen$ive drug!

I wish you continued improvements!

A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby nellie » Tue Aug 24, 2010 6:40 am

Glad you're doing well, BadCopy. Take care & may all your improvements
continue.
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Postby BadCopy » Tue Aug 24, 2010 8:45 am

My insurance was covering the Provigal. If your Neuro prescribes it they may cover it. Truthfully I have been taking it for a while and it may just still be in my system, but we will see.

From the start:

Start in the IR check in,In the basement of ALBANY MEDICAL CENTER. like a clinic check in area. They get all youir info. Then you are called in, they take you down the hall into a new area where you are in 1 of several "rooms" seperated by curtain. You have to get full naked, and put on the gown of shame :lol: The nurse(s) come in and put an IV in your hand. They dont give you anything yet though. The two I had were a riot. It was like being at a comedy club ! I laughed my butt off.

A Russian DR stopped in and asked a few ?, answered a few and justed BSed a few minutes. He is learning under Siskin :) Sat around for another hour or so, spoke with Siskin, used restroom 1 last time (I recommend it) and shortly after was rolled in to the room where they do the procedure. They hook up the goofy juice, shave the groin area where they have to access the Femeral vein, set up the imaging machine and seem to talk with you a bit until you are in dreamland.

About the shaving thing. If I have to do it again I will ask the doctor if it is OK for me to shave myself the morning of the procedure. The lady was not thorough enough and the bandage sticks to the reamaining hair a bit when you go to remove it 8O

What was a very nice younger female Dr :) came in and started the procedure. After that I was in lala land. Then I heard Siskin ask me to hold my breath a couple times and the next thing I knew I was in that small curtained off room again. The nurses came back and took out the IV. I am telling you these two were a riot. The young Dr came and said Hi. Nurses ask if any changes. Siskin comes in says Hi asks how things are going. Explained to me that the narrowing/stenosis in all 4 areas was mild. All balooning: lower r and l jugs, upper right (behind the ear) and Azygus.

You have to lay still for another hour or so and then you can leave. I was given a script for 3 months Plavix and a pain med if needed.
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Postby BadCopy » Tue Aug 24, 2010 8:59 am

THE HOTEL :

If you can, rent a car. The hotel is good and the Recovery room has great food and drink. Use Soho pizza delivery. Ask the front desk they have coupons. If you dont have a car you are kind of stuck as for food, entertainment options unless you are a person that can walk a mile or so. Good pool and hot tub. Good Rooms.

THE ONLY WAY THE HOTEL SHUTTLE WILL PICK YOU UP FROM THE AIRPORT IS IF YOU MADE A RESERVATION IN ADVANCE. MAKE IT WHEN YOU MAKE THE HOTEL RESERVATION OR AS SOON AS YOU KNOW YOUR FLIGHT DETAILS. If you end up taking a cab you may get the scenic route like we did. $30 before tip. When the hotel shuttle took us to the airport we realized we got the scenic route on the way in.
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Postby Cece » Tue Aug 24, 2010 10:18 am

BadCopy wrote:Truthfully I have been taking it for a while and it may just still be in my system, but we will see.

It has a long tail (it stays in your system for a month) but in increasingly tiny amounts.
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Postby burg » Tue Aug 24, 2010 11:24 am

Great to hear the wonderful news BadCopy! Keep the improvements going.
Did you walk from the procedure, or take a wheelchair to Hilton Hotel?
How many procedures were done at the same time?
Boo.. are you doing better? Did you see more changes after the first few weeks?
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Postby BadCopy » Tue Aug 24, 2010 2:32 pm

burg wrote:Great to hear the wonderful news BadCopy! Keep the improvements going.
Did you walk from the procedure, or take a wheelchair to Hilton Hotel?
How many procedures were done at the same time?
Boo.. are you doing better? Did you see more changes after the first few weeks?


I was able to walk both there and back. There is an elevated tunnel connecting them. Walking back a bit more gingerly. They thought I was the only one Friday. Not sure how many each day.
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Postby burg » Thu Aug 26, 2010 10:04 am

Are there any more tests like ultrasound after procedure??
When were you able to go home??? Next day??
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