Cece's turn

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

Postby Drury » Tue Feb 08, 2011 8:21 pm

Cece,

Call the airline ahead of time and tell them you will be carrying meds/syringes in hand luggage - you might need a docs letter also. If you put them in the hold they might freeze and not sure if that will be a good thing?

I would bring sweats and jeans and pack snow boots as weather is iffy.

So sad that you will not get to meet Holly.

Counting the days with you.

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Postby dlb » Tue Feb 08, 2011 9:03 pm

Hi Cece,

I've flown many times with Copaxone & actually all meds should be kept with you in the cabin, especially ones that must not freeze. I have never, ever been questioned about the needles, which really surprised me the first time I traveled - I was expecting the third degree. I do have a letter from my neuro & I bring my prescription labels (current). Never an issue tho' - have never had to produce either.

Best of luck - we know you're in good hands!

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Postby CD » Tue Feb 08, 2011 9:45 pm

Cece, bring a sweat top and bottom for procedure day. It is comfy on the neck, chest and clavicle area and also the pants on the groin. Bring some larger, or loose fitting, comfy undies too. Forget the red thongs. :lol:

Wear knee socks cause it is freezing in the procedure rooms. It is cold for the machines and computers, and really because of bacteria spreading. Cold rooms help kill germs and prevents them from multiplying.

The staff I had in Albany had on three long sleeve shirts under their scrubs, a hat and masks, and with their lead vests on to protect them from the fluoroscope rays they are exposed to daily.

They still had cold hands. I asked for hot blankets, many of them. The little hospital gown is not warm, trust me and the table is cold.

It is such an exciting time. You will be so happy you had it done. I have been feeling like I don't have MS, and this is after 30 years of it. Things are getting better each day. I am now two months out.

Just think in your head that this is a vacation trip you are going on. Think positive and have hope. Keep negative thoughts away. No what if's.
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Postby Nunzio » Wed Feb 09, 2011 4:49 am

Hi Cece,
I didn't realize you were so close to the procedure.
Please bring your laptop with you so you can update us on your progress.
If everything goes well with my insurance I will follow your steps in a couple of weeks.
Best wishes and best of luck to you and Dr. Sclafani.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Postby newlywed4ever » Wed Feb 09, 2011 7:24 am

Cece - I agree with others advice....I brought my whole 20 days worth of Arixtra (didn't need to bring it ALL!) with me in my carry-on. No problem with TSA/airline. And the sweats I pretty much lived in for the whole trip and was glad I did!
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Postby Cece » Wed Feb 09, 2011 11:38 am

I will be packing warm socks and sweats, not even thinking about putting the Arixtra anywhere but in my carry-on, bringing my laptop to continue with updates (we need a "Countdown: 1 day away...." and a "Countdown: OMG ITS TODAY, don't we?), and *ahem* leaving the red thong at home, per the advice here.

CD, those are wonderful results you've had, I am very happy to hear it.

Nunzio, glad to hear you'll be making it to Brooklyn too, hope the insurance goes quickly!
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Postby David1949 » Wed Feb 09, 2011 12:45 pm

You have probably answered this before but are you going to do before and after videos? As I recall your symptoms are not visible so maybe a video would be pointless. It would be nice to know what the real Cece looks like though. I picture you looking like your avatar. :-)
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Postby lovebug » Wed Feb 09, 2011 1:30 pm

Leave the `red thong at home`! Why? I think you should wear it during surgery. It probably will not get in the way of the catheter getting into the femoral vein anyways. It would bring lots of laughs in the surgical room...............Now get that on a CD or video and show us on TIMS. This site would get the biggest hits! Imagine the possibilities. Movie???? Yes I have an active imagination. Just trying to find a little bit of humour for you before the big day. Your not nervous are you?
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Postby Cece » Wed Feb 09, 2011 1:59 pm

David1949 wrote:You have probably answered this before but are you going to do before and after videos? As I recall your symptoms are not visible so maybe a video would be pointless. It would be nice to know what the real Cece looks like though. I picture you looking like your avatar. :-)

I can't quite see myself doing the videos. And especially not lovebug's version! (Yes, I am a little nervous! About the trip, about meeting Dr. Sclafani, about the procedure, and most of all about the possibility of improvements in fatigue, cogfog, feeling better, "prolonging the time to disability"....)

Was recently told by someone here that they had pictured me more Betty Boop, like my avatar, but that the reality was "Scandinavian charm." ;)
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Postby Trish317 » Wed Feb 09, 2011 3:01 pm

I'm sending you so much love, prayers, and good thoughts. My heart is with you, Cece. You deserve the best!

And would you do me a favor? Give Dr. S a gentle kiss on the cheek and a big hug from someone who loves a man with PPMS. Even though CCSVI, and the procedure, hasn't been the answer for my darling man, I'm so happy and grateful for what it's done for so many people.

Dr. Sclafani is a pioneer and hero in CCSVI/MS research. I appreciate that more than I can say.
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Postby Flashover81 » Wed Feb 09, 2011 3:33 pm

Can't wait to hear of your improvements. Prayers and well wishes sent your way :D
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Postby hannakat » Wed Feb 09, 2011 4:15 pm

It was a long time coming but most certainly worth the wait! I resisted going to any of the other treating doctors as well....it was tough sometimes, but I just kept hoping.

We'll all be there with you in spirit Cece. Wishing you an awesome outcome!

~^--^~
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Postby L » Wed Feb 09, 2011 6:44 pm

Good luck! x
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Postby newlywed4ever » Wed Feb 09, 2011 8:10 pm

One more thought (you may already have this covered) - take disinfectant wipes for the flying bug box, maybe take Airborne...I jokingly told hubby I was going to wear a mask on the plane - now I wish I had! Both of us ended up with colds from hell. Ah.. but this, too, shall pass. Prayers & positive energy to you!
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Postby CaptBoo » Wed Feb 09, 2011 8:15 pm

Cece - go with sweats. I went commando and the nurses didn't seem to have the same appreciation's the Mrs.
<div>There be no dragons   ...Reese Palley</div>
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