Court's Liberation - 2 Week Update (new vids)

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

Court's Liberation - 2 Week Update (new vids)

Postby Johnnymac » Sat May 07, 2011 2:14 pm

Hello TIMS, I haven't posted as much as I used to, but want to share our experience with Courtney's liberation procedure yesterday.

Yesterday we arrived at the clinic a little before 11am, had a wonderful consultation and examination with Dr Sclafani who took the time to explain everything to us, and did a very thorough examination before taking Courtney back for her procedure (the rumors are true, he's a great man!).

Courtney's procedure took a little longer than expected, about 3 hours. She had both of her jugulars and azygos ballooned, and other than a complication with the catheter in her left IJV everything from my understanding was fairly smooth going. She did say the actual ballooning was painful for her, but the good folks at AAC took good care of her to make sure was as comfortable as possible.

After about an hour in recovery we took a cab back to the hotel, got her a little food since she hadn't eaten since the night before. It was a fairly long night as the spot where the catheter went in was seeping a little requiring a change of the bandage every 3-4 hours. She was sore, physically tired and mentally exhausted.

Today we went back by the clinic to get her leg checked out which was all good. She's sleeping now, and has been in good spirits all day.....I decided to push her through the streets of Brooklyn going from the Clinic, through Prospect Park and up through all the little shops in Park Slope..we even got to watch Martin Sheen do a scene as they were shooting part of the new spiderman movie a block from the clinic.

Couple of interesting points to note, last night, she was able to sleep with her feet out from underneath the covers because they were hot (she used to sleep with her feet out, but hasn't in years). She didn't take any of her spasticity meds last night, and her legs didn't spasm at all. There have been a few times where she has had an itch on her foot or knee since last night that made her leg jump a little, but other than that the spasticity seems to be better post-treatment (time will tell if this is just temporary relief or not). She also mentioned being able to feel the carpet with the sole of her right foot, which she has had very little feeling in. She was having fun pointing at me last night with her right hand.....fun because she hasn't been able to straighten out her index finger at will for a while.

Thats about all I have to report at the moment. I will update this thread periodically with her progress.
Last edited by Johnnymac on Sat May 21, 2011 11:15 am, edited 2 times in total.
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Postby Cece » Sat May 07, 2011 3:21 pm

Congrats! Now for resting and recovering but it sounds like she is already one of the ones who respond with improvements which is wonderful. Kudos to Dr. Sclafani too!
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Postby cheerleader » Sat May 07, 2011 4:18 pm

Hey Johnny--
it's really, really good to hear from you. Have missed your posts and beautiful pics of Courtney.

I hope she continues to find benefits from this procedure. Make sure she's staying well hydrated, and if there's any way to have her do physical therapy with an MS specialist once you get home, it's been shown to help people heal and regain mobility. It also helps mitigate restenosis for many.

We used to live in Brooklyn, in Carroll Gardens, not far from the slope. I hope you had a great time taking in the sights and sounds of that wonderful neighborhood.

Please keep posting and send our very best to Courtney. You two are a very special couple, and it's good to hear from you--
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby zinamaria » Sat May 07, 2011 8:07 pm

I've been waiting with baited breath to hear from you, and how Courtney is doing, and I have tears in my eyes...I, too, like Cheer have missed you on the site and the pics of beautiful Courtney.
Keep us posted on how she is doing, and I am so happy for you both.

Z
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Postby Johnson » Sun May 08, 2011 1:41 am

I must 4th the gladness to see your post. I have had a screenplay in my head about you two since I first "met" you. Hooray, Hooray! Oh, Hooray!

I am bumbling my way to Brooklyn in just a couple of weeks, and it is great to read more of such high praise for Dr. Sclafani. I have to admit being a tad worried going into my third round.

Best to you both.
O sweet spontaneous
earth how often have
the
doting
fingers of
prurient philosophers pinched
and
poked
thee,
has the naughty thumb
of science prodded
thy beauty, how
often have religions taken
thee upon their scraggy knees
squeezing and
buffeting thee that thou mightest conceive
gods
(but true
to the incomparable
couch of death thy
rhythmic
lover
thou answerest
them
only with

Spring

It was the mention of the finger that brought Kahlil Gibran to mind.
My name is not really Johnson. MSed up since 1993
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Postby Johnnymac » Sun May 08, 2011 7:05 am

Wow J... You brought tears to my eyes, our wedding 8 years ago we had nothing from the bible read, instead it was passages of Gibran that we pledged our love for one another to. Your quote was quite unexpected, and perfect.

Day 2.

Courtney's feet are still warm, there is still some spasticity but it's not nearly as bad. She is able to bend her right knee much easier and with more consistency.... And this morning she is raring to go, seems full of energy. Soreness from the procedure is pretty much gone.

We heard a popping noise last night outside around midnight and opened the curtains to an incredible fireworks show going on over the statue of liberty, it felt like a celebration of courtney's liberation procedure.

Edit: one other little note, this morning you can see all the veins in her feet, I figure it's just been a while since she's had decent flow in that area and they are dialated but it looks a little strange

Will update tonight when we get back from messing around the city.
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Postby HappyPoet » Sun May 08, 2011 2:55 pm

BEST WISHES!!!!!!
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Postby ozarkcanoer » Sun May 08, 2011 3:34 pm

JohnyMac.... It is so good to hear that Courtney has had the procedure and by Dr Sclafani !!! I hope that she continues with more improvements every day. And thanks for coming back to TIMS and letting us know.

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Postby bohemianbill » Sun May 08, 2011 4:28 pm

congrats JohnyMac to Courtney's Liberation and your obvious joy. My Laurie and I are sharing the same wonderment of her own Liberation in Atlanta on May 5. Hope springs eternal will forever be the month of May. Looking forward to sharing updates with Courtney and you.

Bill
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Postby Johnnymac » Mon May 09, 2011 4:12 pm

Have update the blog (link below), thats the best place to follow improvements, will pop in here as well from time to time.

Cheers,
John
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Postby WeWillBeatMS » Wed May 11, 2011 9:51 am

Hi John,

How's she doing?

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Postby Johnnymac » Wed May 11, 2011 10:16 am

She is doing well, at this point continuing to see little changes in the way she feels (literally and figuratively). Bladder urgency is something that I would add to the list of improvements. I just posted on Dr S's thread with a few details and will continue to keep the blog updated every week or two while we are in the early stages after her procedure.
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Postby Johnnymac » Fri May 13, 2011 9:55 am

Today is 1 week post procedure, wanted to update the blog with some new videos but Blogger is currently under maintenance so I thought I would post them here for the time being.

Below you'll find three videos, similar to pre-procedure videos you can find one the blog @ ourmsjourney.blogspot.com

One thing I believe is important to note in Courtney's case, is that she has lesions in both her spine and in the pons area of the brain. The one in the pons area is particularly suspect as it could very well be effecting the traffic of neurological signals to her legs. Its possible that an increase of blood flow may not benefit her ability to walk unassisted as much as others. Just wanted to put that information out there, as everyone knows each case is a little different.

Walking: Looking at before and after videos you'll notice the speed of her gait is faster, her knees lift higher and with more ease, and her toes do not drag as badly as before.
http://imageshack.us/clip/my-videos/593/53846813.mp4/
Hands: I wish we had video of her crossing her fingers pre-procedure, but its not something we thought about. Pre-procedure she could not cross her fingers on her right hand without using her left hand for assistance.
http://img43.imageshack.us/i/js9.mp4/
Leg Lifts: These look similar to pre-procedure, specifically the right leg. However, note that she is able to left her left leg with more ease.
http://img8.imageshack.us/i/jxx.mp4/
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Postby bohemianbill » Sat May 14, 2011 7:14 am

One thing I believe is important to note in Courtney's case, is that she has lesions in both her spine and in the pons area of the brain. The one in the pons area is particularly suspect as it could very well be effecting the traffic of neurological signals to her legs. Its possible that an increase of blood flow may not benefit her ability to walk unassisted as much as others. Just wanted to put that information out there, as everyone knows each case is a little different.

Johnny in many ways Cortney's lesion placement are like my Laurie's. It's been 10 years since she was able to use a walker. My point being is that I remember reading in Dr Zamboni's research that when he found stenosis in the Azygous vein the patients were inevitable secondary or primary progressive. So in my mind his hypothesis was actually putting a face on the different stages of MS. In actuality that was the game changer for me for the first time I was actually able to get my head around his findings.

Laurie booked her Atlanta CCSVI with no prior CCSVI Doppler but we both new in our hearts that she had occluded veins including the azygous. Her Doppler and venography imaging are in the mail and I will share them, it will be interesting to see the correlation between the two.

Our prayers are with you both, time and hard work are on our side.

Bill & Laurie

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Postby shucks » Sat May 14, 2011 12:02 pm

Congrats and please keep us posted on how it goes. I am still deciding on this and the honest stories are awesome research.
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