November 30, 2010-my new birthday!

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

November 30, 2010-my new birthday!

Postby rcb0407 » Fri Dec 03, 2010 6:04 pm

CCSVI TRACKING [Please use date format MM/DD/YYYY]

Name : Robin
Male/Female: (F)
Age: 57

Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): May 13, 1995-RRMS

Lesion locations (most affected side, if known), number:equally distributed between brain and cord

MS treatments:Betaseron 6 years, Copaxone 3 years, LDN 3 years, tysabri 3+ years

MS symptoms before stenosis intervention:total numbness in hands (to Elbows) and feet (to knees); fatigue; cog fog (didn't know I had it till it was gone); bladder issues, severe back pain if standing more than 1-2 minutes; constantly cold hands and feet;cane from 1995-2010-walker from July til 11/30/2010

Number of relapses before intervention (if applicable):2

EDSS before CCSVI intervention (self-assessed or physician-assessed?):6 (physician)
[To review EDSS rating, click the following link: ... scale.html ]

FSS before CCSVI intervention: 6.6
[To calculate FSS rating, click the following link: ]

MSIS before CCSVI intervention: 112
[To calculate MSIS rating , click the following link: ]

Are you using Inclined Bed Therapy I.B.T? (Y/N) N

Have you had testing (and possibly procedure) for blockage yet: (Y/N) Y
[Some patients may wish to start with a baseline report, if Y, continue with next section]


Date/location of testing/procedure:Albany, NY 11/30/10

Type of venographic study: (MRV, Doppler) Doppler:Venogram

Diagnosis: Blocked jugulars-mild on right-moderate on left, and it was all twisty

Type of procedure: Balloon - no stent

Procedure/drug related symptoms: Slight discomfort on left side of neck; ibuprofen works

Number of relapses since first CCSVI intervention: 0

Impact on your MS symptoms in words (include date in brackets if there have been multiple updates): My hands and feet were warm in the reovery room immediately after; my numbness is decreasing day by day-I have feeling now; I AM WALKING UNAIDED FOR THE FIRST TIME SINCE 1995; balance is good; NO FATIGUE; seem to have had taste buds restored
EDSS as of this update (self-assessed or physician-assessed?)self-1.5

FSS as of this update: 3

MSIS as of this update: 40

I had no expectations going in; I just needed to know I had done everything humanly possible to fight this disease. I am still in shock-my daughters, mother, husband, and other relatives and friends are crying-I still don't believe it's real
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Postby Cece » Fri Dec 03, 2010 6:12 pm

oh my - you got the miracle!!

hugs and happiness!!!
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Postby CenterOfGravity » Fri Dec 03, 2010 6:15 pm

This is awesome to hear, I can sense the big huge smile on your face :).
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Postby prairiegirl » Fri Dec 03, 2010 6:16 pm

Great to hear of your improvements! :D
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Postby 1eye » Fri Dec 03, 2010 8:23 pm

Hippo birdie two ewes! Glad to hear you did so well. I am only 1 year younger than you! What'll we do? Now they'll all want one... :D
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
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Postby blossom » Fri Dec 03, 2010 9:53 pm

great to hear. continued healing wishes sent your way.
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Postby NotFound » Fri Dec 03, 2010 10:21 pm

I am crying too. So happy for you!

May you keep on improving!
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Re: November 30, 2010-my new birthday!

Postby bruce123 » Sat Dec 04, 2010 6:50 am

rcb0407 wrote:I had no expectations going in; I just needed to know I had done everything humanly possible to fight this disease.

Thanks for posting. This is the same approch my wife is using. I am so happy for you.

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Postby bluesky63 » Sat Dec 04, 2010 7:07 am

Down from 6 to 1.5 -- awesome!!!!

Interesting you said you didn't realize about the cog fog till it was gone. I think that is a great benefit and a real eye-opener -- to experience clarity and not realize you hadn't felt it because it had just been so normal to be "foggy." That crystal-clear feeling was amazing.

Now take care of yourself and keep healing. :-)
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Postby SandyK » Sun Dec 05, 2010 4:58 pm

This has made my day! I am praying for you.
Diagnosed 1994, Self EDSS is 6.5
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Postby CCSVIhusband » Sun Dec 05, 2010 6:06 pm

So happy reading and re-reading stories like this.

Congratulations and (right on about things being gone you didn't even know could go away) ... happens to a lot of liberatees
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Postby leetz » Sun Dec 05, 2010 6:47 pm

SO happy for you... Dr. Jesus hard at work!!! YES!!!!!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby BooBear » Mon Dec 06, 2010 12:15 pm

Hearty congrats!!! Welcome to the club!!!
Three veins angioplastied.  One renewed life.  
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Postby magoo » Mon Dec 06, 2010 12:36 pm

What an amazing outcome!!! Enjoy every second!
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby pairOdime » Mon Dec 06, 2010 12:59 pm

Excellent news....wonderful results!!
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