Until the MS Views and News website is re-designed with a new section for Patient Stories, I will post them here on this blog. If you want to comment to any of these stories, I would appreciate you visiting the BLOG directly to leave comments, questions or answers. PLEASE attempt to REFRAIN from leaving the comments on Facebook.
In this week's e-newsletter, I mentioned that we will link Patient Stories to the weekly e-newsletters. The more the merrier, so long as:
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and
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This posting will be updated as stories arrive. THANK YOU
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updated January 29, 2011
CCSVI Procedure - 3 month update
LL
Pittsburgh, PA
DX: RRMS - September 2006
RX: Betaserone for a year until developing antibodies - not a very effective drug.
Tysabri since 2007 - 40 infusions - moderate results with this drug.
CCSVI treatment October 2010 in Albany, NY.
Since procedure:
Fatigue - greatly reduced.
Joint pain - greatly reduced.
MS hug - only one episode in 3 months.
Stamina - greatly improved.
Cog fog - greatly improved.
Spasticity - gone.
Urinary incontinence - gone.
Numbness in extremities - gone.
Loss of sexual sensation - gone.
Ability to curl toes - restored.
Ability to go dancing wearing stiletto heels - restored.
It worked for us.
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Marlys from NORTHERN MINNESOTA
I HAD CCSVI DONE ON ME IN JUNE, 2010 IN THE UNITED STATES. IT WAS A BLESSING AND SO WERE ALL THE PEOPLE INVOLVED AT THE HOSPITAL AND CLINIC. I DIDN'T HAVE TO HAVE FEARS OF TRAVELING TO A FOREIGN COUNTRY AND POSSIBLY LEARNING THAT THEIR STANDARDS WEREN'T UP TO THOSE IN THE U.S. EVERYONE WITH MS SHOULD BE ABLE TO HAVE ACCESS TO THIS PROCEDURE. NEUROLOGISTS SHOULD SPEND JUST ONE DAY WITH US TO SEE WHY WE NEED THEM TO LOOK TO THE POSSIBILITIES THIS PROCEDURE MAY BRING.
WHAT I GAINED FROM CCSVI IS THAT I DO NOT SUFFER FROM FATIGUE AS BEFORE. YES, I DO GET TIRED NOW, BUT THERE'S A GREAT DEAL OF DIFFERENCE BETWEEN FATIGUE AND BEING TIRED. IN MY FATIGUE, ENERGY WOULD LITERALLY DRAIN OUT MY BODY. MY ARMS AND LEGS COULD NOT ASSIST ME IN ANY MOVEMENT. OFTEN I'D TRY TO GET TO MY BED (VIA POWER CHAIR) ONLY TO HAVE ABSOLUTELY NO STRENGTH TO CRAWL INTO BED. I HAD TO REST IN THE CHAIR UNTIL I REGAINED STRENGTH, AND OFTEN THIS TOOK A VERY LONG TIME. AT LEAST NOW WITH JUST GETTING TIRED I AM SO MUCH SAFER MAKING TRANSFERS. I AM NOT AS FRIGHTENED OF FALLING AS I WAS BEFORE THE CCSVI. I LIVE ALONE, SO THIS WAS QUITE A BIG DEAL FOR ME.
I GAINED CLARITY AND FOCUS FROM CCSVI. IT WAS LIKE I HAD A BRAIN CLEANING, A LIGHT DUSTING. COLORS ARE MORE VIBRANT. I CAN STAY MORE FOCUSED ON LIFE. I RETAIN SUBJECTS LONGER.
I BELIEVE THAT JUST HAVING SOME HOPE ALSO HELPED ME. NOW THAT THE PROCEDURE IS OVER FOR ME MY HOPE IS FOR THOSE WHO CANNOT FIND AN INTERVENTIONAL RADIOLOGIST TO DO THE PROCEDURE. I SAY SHAME ON THOSE STOPPING THIS RELATIVELY SAFE PROCEDURE. HAD I NOT GAINED ANYTHING WITH MY CCSVI I WOULD STILL TRY AGAIN. I WILL HAVE MY AZYGUS AND JUGULAR CHECKED AGAIN IN THE FUTURE AND WILL HAVE THE CCSVI REDONE IF NEEDED. I'VE READ WHERE THIS PROCEDURE IS "IMPROVING" AND WILL BE EVEN BETTER VERY SHORTLY.
DR. SISKEN IS MY DOCTOR. HE IS ABSOLUTELY WONDERFUL. I HAVE ALWAYS BEEN A CHICKEN WHEN IT CAME TO DOCTORS, BUT THIS GENTLEMAN WAS THE ABSOLUTE GREATEST. I HAD NO FEARS GOING INTO HIS HOSPITAL. HE CONTINUES TO FOLLOW MY PROGRESS. I COULD NOT ASK FOR MORE. I'VE HAD OTHER OPERATIONS AND NOT ONE OF THE DOCTORS EVER CARED SO MUCH AS TO CHECK TO SEE HOW I WAS DOING AFTER THE OPERATION. I FOUND HIS CARE AND CONCERN TO BE EXEMPLARY AND A RARITY IN THE MEDICAL FIELD TODAY.
NO, I AM NOT WALKING YET. CCSVI DID NOT HELP ME THERE. NO, I CANNOT FIND A DOCTOR NEAR ME WITH ENOUGH BALLS TO EVEN ALLOW AN ULTRASOUND TO SEE IF THINGS ARE OKAY. NO, IT IS NOT THE TOTAL CURE ALL WE WOULD LIKE IT TO BE, BUT I WOULD SPEND MY LAST PENNY TRYING TO GET EVEN A FRACTION OF MY LIFE BACK, AND CCSVI HAS DONE THIS FOR ME.
Name Tessa
1st MS attack 1986
Dx 1992 RRMS
DMD Copaxone since 1992
Follow Best Bet Diet
At time of treatment July 2010
EDSS 5
Symptoms: severe fatigue (tested at a 75/84 severity), balance issues, dizziness, vertigo, heavy pressure in head & behind eyes, left foot drop, heat intolerance, eye tracking problems, tightness of muscles, RMT unable to distinguish muscle separation, unable to do mild exercise like yoga, no strength in muscles, cognitive issues, used a cane to walk, slept 19 hours a day with no relief upon waking, moderate bladder issues, unable to hold my arms above my head, lower lip issues, no feeling in feet, trouble focusing, numb stripe on face & loss of sensation all over & loss of sense of smell (did not know about these until they came back after)
POST TREATMENT July 2010 Sofia Bulgaria: no stents, ALL of the above symptoms are gone with the exception of still having minor eye tracking issues in my left eye & some cognitive issues - but they have improved slightly - though I was REFUSED treatment to help me get these back.
DMD: Copaxone - I am working with my neuro doing a personal clinical MRI with gadolinium study with him - I hope to be off Copaxone in 3-4 months. Low Dose Naltrexone: to aid in the healing process (I started this 4 months post-CCSVI treatment)
Follow Best Bet Diet
I now sleep a normal 7-8 hours a night, wake up feeling refreshed & am able to work out like a normal person at the gym 3 days a week. My personal trainer is so impressed with the progress I've made since starting Sept 2010!
6 month Follow Up Doppler US shows jugulars are flowing BETTER than immediately post treatment
Treatment gave me my life back!
