Laurie has been Liberated-Atlanta Access Care-Dr Sullivan

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

Laurie has been Liberated-Atlanta Access Care-Dr Sullivan

Postby bohemianbill » Sun May 08, 2011 9:32 am

(please feel free to send this testimonial to your 'letter to the editor')


Seeing is believing, its important that the general public, those NOT directly touched by MS understand that fellow Canadians are suffering, needlessly. Its our hope that this shared testimonial will educate than motivate our fellow Canadians to express their utter disbelief and contempt for a political system that will allow this discrimination to continue.

Please understand, that if you or I present a medical condition that is caused due to a blocked-stenosed jugular vein angioplasty to open that vein would be completed in a timely manner and at no cost , as it should be.

Yet if you have MS, (a study recently completed in Buffalo NY determined 65% of MS patients studied presented occluded jugular veins) Canada Health and OUR Government are on record stating this procedure is not available to Canadians if they have been diagnosed with multiple sclerosis.

The following is an update that we have recently shared with the MS community, friends and loved ones that have made it possible for our joy today. The Canadian MS community have tirelessly over the months petitioned, demonstrated, initiated Internet, letter, and phone call campaigns imploring our elected officials at the Federal & Provincial level to halt this blatant discrimination being imposed on those with the preexisting condition called MS. As our recent Federal election has demonstrated Canadians have the power to make dramatic change. We implore our fellow Canadians to do a simple Google search, five letters, CCSVI. Educate yourself, then educate those around you. Only until all Canadians (not just those suffering) unite will this un Canadian like discrimination and NEEDLESS suffering be stopped.

LIBERATE LAURIE

My wife Laurie PPMS, diagnosed 1990, wheel chair dependent since 1999, unable to transfer on her own since 2008 and a gradual loss of quality of life since. Liberated May 5, 2011 Atlanta Access Care, Dr Kevin Sullivan

Lt & rt jugular veins 60% stenosed 16 & 14 mm balloon used respectively. Azygous stenosed 40% 8mm balloon used. Venography and angioplasty completed. Above stenos treated successfully.



I am very happy to state that there were immediate results.

-blood flow & color down to her toes are pink and warm to the touch

-able to move her toes and rotate her ankles-3 years since that happened

-strength to legs and hands have increased dramatically & able to adjust pressure incrementally as desired, pre was either nothing or all.

-rt eye prior to Liberation impaired-described it like looking through a finger print, now vision has returned to normal, able to read again

-light sensitivity gone, it was sunglasses or drapes drawn pre, as I write this she is having a coffee and gazing at our pond on this beautiful spring day, thoroughly enjoying the moment.

-fatigue gone, sleeping through the night, feels rested

- chronic pain level prior too liberation scaled 8-10 after Liberation 0 obviously impacting fatigue and sleep

-sensitivity to touch has returned waist down

-ringing, sound of crickets in her hears-gone

-has not stopped talking, our Chatty Cathy is back:)



Her nurse Michelle who has made a weekly visit for the last 6 years visited her yesterday (after she arrived home from Atlanta), she literally used the word Miracle to describe our post Liberation Laurie. Talked of (under physicians direction) of weaning Laurie off of the drug cocktail currently on and future rehab if her improvements are permanent.

After all these years of care giving for Laurie the road has been littered with disappointments, one learns to keep ones feet on the ground and to temper ones hopes BUT after Laurie's Liberation the only way I can describe the post Liberation Laurie is beautifully breathtaking.

Side bar: it's one thing to read testimonial on a message board about CCSVI its another to experience a loved one receiving the Liberation Treatment and having Laurie's beautifully breathtaking early results. Were the was despair now is hope with a future again.

Yet it pains us both that this relatively simple and safe intervention is being denied MS suffer's in Canada. After what we have just witnessed it's unconscionable that the Canadian Government's position is to deny any Canadian that has stenosed veins the access to OUR health care system. To remedy such no matter the preexisting condition will reduce the daily suffering of many of our brother, sisters, moms and dads not to mention the potential savings to the heath care system. Our resolve to correct this injustice is now tenfold.

Thank you ALL for your prayers and support, without all of you, the spark that's now back in Laurie's eye, the strength of her voice that allows her to assert herself in a conversation again & lastly that beautiful belly laugh of hers that is ringing out as I type are all back, all conspicuously absent and now beautifully breathtakingly BACK




Laurie & Bill
Last edited by bohemianbill on Sun May 08, 2011 12:02 pm, edited 4 times in total.
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Postby Johnson » Sun May 08, 2011 10:47 am

500 thumbs up!
My name is not really Johnson. MSed up since 1993
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laurie

Postby zinamaria » Sun May 08, 2011 10:49 am

Bohemianbill! Buffalobill! Good to see you here again! And I am so thrilled for you and Laurie, please keep us posted!
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Postby Cece » Sun May 08, 2011 11:06 am

How beautiful. So glad for you and your Laurie that she got those results.
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Postby WeWillBeatMS » Sun May 08, 2011 2:28 pm

So happy for you both. Enjoy your bohemianbride Bill.

Any chance you could invite your wife's nurse to create a quick post here even if it's just a one time thing? That is testifying to what she has seen with your wife.

WeWillBeatMS
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Postby HappyPoet » Sun May 08, 2011 2:48 pm

CONGRATULATIONS!
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ccsvi

Postby blossom » Sun May 08, 2011 8:18 pm

this is truly wonderful for your wife and you. may she continue healing and improving.
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Postby MegansMom » Sun May 08, 2011 8:21 pm

What a wonderful outcome ! Thanks for sharing!
Cat (Catherine Somerville on FB)
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby bohemianbill » Mon May 09, 2011 7:54 pm

Our choice of Dr Sullivan in Atlanta was due to having family in Atlanta. I was not able to join her and needed a close friend to accompany her and her brother on the other end to take care of the logistics.

So for Laurie it was a combination vacation, CCSVI Liberation, the latter was with hope and prayers and a conviction that we had tried pretty well everything else, no stopping now. Laurie has had MS for well over 21 years, primary progressive, in my eyes late stages, so to have the results that we have had so far is beyond my expectations.

Laurie stated she was thrilled with Atlanta Access Care, Dr Sullivan and his staff.
Between Joanne, Dawn & Laurie they have over 70 years of Nursing experience and medical protocols so they knew how to walk the walk and talk the talk. After the hour and a half consultation were the good doctor was interrogated :) they left his office the night before the procedure knowing Laurie was in very good hands.

I will end by sharing an email my brother in law sent to his email list as I had requested every one to do as per my 'Laurie has been Liberated' thread on TIMS. Gary is the most conservative guy I know so his reaction (bearing witness) is telling for me.

Thank you all for your well wish's

Laurie & Bill

From: Gary
Date: 08/05/2011 5:27:06 PM
To:
Subject: Liberate Laurie Update

Below is a letter that my Brother-in-Law, Bill wrote to the Star (Letters to the Editor) to try to get the word out about a new experimental procedure for the treatment of Multiple Sclerosis (MS). My sister Laurie (nee ) visited Joann and I in Atlanta last week where she underwent the CCSVI (Liberation Treatment) at a local clinic here. Currently, the Canadian Government currently does not allow CCSVI to be performed in Canada and does not cover the costs of treatment. Bill and Laurie's hope is that while they covered the cost of her treatment and travel to Atlanta out of their own funds with the help of donations from family and friends, that awareness will bring the necessary pressure on the government to cover the cost of the procedure for other MS sufferers.


I can personally say the results of the procedure were significant and in my skeptical mind, miraculous. My sister had not been able to wiggle her toes or move her feet for 3 years prior to the treatment. Immediately after the procedure Joann took a video (copy and paste the link below into your browser to view it) of her wiggling her toes and moving her feet when she was just in the recovery room. Her condition is continuing to improve from there as described by Bill below.

Please pass the word around.

Gary
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wonderful

Postby shoshi55 » Thu May 12, 2011 12:22 am

keep going, we've the same misfortune here too (israel) but who cares? we keep hoping it will change as you did, and soon!!!!!!!!!!
enjoy your victory and tell laurie to make it slow and enjoy any minute, it is not the last word, there will be more to come
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