CCSVI TRACKING 12/29/2010
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): Diagnosed RRMS Feb. 1999, first symptoms for which I consulted a doctor, Dec. 1996 (tingling and seizures in right arm). MRI of brain clean in Jan 1998 and 1999, spinal MRI in 1999 showed lesions, diagnosis confirmed with spinal tap. More recent MRIs show lesions in brain not spine.
Lyme disease and Bell's palsy as a result Aug. 2006.
Lesion locations (most affected side, if known), number: unknown
MS treatments: Avonex (1999-2002) stopped to attempt to get pregnant, not dmds during pregnancy and nursing, Copaxone since March 2005 unless pregnant or nursing. Daughter born May, 2004, son July 2008. Miscarriage fall 2006, fetal demise at 20 weeks Feb 2010.
IV steroids for 5 days with oral taper Dec 2001 and Dec 2002, oral steroids several times over the course of disease. Only once since birth of first child, but seem to be moving from definite RRMS to more of a progressive course.
Vitamin D3, Magnesium, Zinc 2010
MS symptoms before stenosis intervention:
foot drop (right foot), heavy legs, fine motor control issues in right hand, bladder urgency and incontinence at times, balance problems, unable to walk drunk line, mild tremor in right hand,spasticity in right calf, two episode of diploplia (both pre kids), heat sensitivity, widened gait and stance, right leg swing more than walks normally, electrical impulse when bending the neck (gong) early on, inability to run, had to switch to skechers because all other shoes were to heavy, couldn't wear jeans because they were too heavy and flt strange against my legs, couldn't walk long distances, handwriting atrocious....there are more I am not thinking of right now.
Number of relapses before intervention (if applicable): 15 plus, switching to gradual worsening rather than defined relapses, diagnosis not changed.
EDSS before CCSVI intervention physician-assessed: 3
FSS before CCSVI intervention: do not have fatigue issues (for which I am extremely grateful)
MSIS before CCSVI intervention: not assessed, no cog issues to speak of
Are you using Inclined Bed Therapy I.B.T? Yes, I love it and will never go back to a flat bed.
Have you had testing (and possibly procedure) for blockage yet: Y
STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure: 10/15/2010 RIVI
Type of venographic study: doppler US and venoplasty
Diagnosis:LIJV 50 % stenosed, opened with balloon now at 11 mm with good flow. RIJV (small to start with 8mm at largest) 75% stenosed required 18mm balloon (painful) to open, has strange tissue bump still inside it. One month follow up showed it was down to 7mm but had healed nicely with good flow.
Type of procedure: venoplasty
Procedure/drug related symptoms: 18 mm balloon was unpleasant, seemed to delayed response to sedative (slept all the way home and after I got home, totally with it during procedure) lovanox injections twice a day for 3 days, plavix for 30 days, baby aspirin for the rest of my life. I would have this procedure once a year for the rest of my life if necessary. No problemo.
Number of relapses since first CCSVI intervention: have 36 hours of slight worsening to my period (2 since my procedure), not a true relapse, still ahead of where I was.
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
Life is easier!
I have more energy because it takes less effort to do everyday things like walking. I can type with both hands again because my right can keep up with my left. According to my Neuro the tremor in my right hand is gone and I don't widen my stance as much and my gait is less mechanical. I can stand for longer periods of time. I can negotiate uneven ground more easily....I hosted 9 for Christmas and stood in the kitchen and cooked big meals on Christmas Eve and Day, unthinkable 6 mos ago. I went shopping at the mall and managed 5 hours before I had to rest.
Am I normal, NO but I am so much better. I just started physical therapy and walked a drunk line today for the first time in prob. 10 yrs. My bladder is better, not fixed.....I really did not expect immmediate big time improvements because my symptoms were not those that seem to have those happen....but I am definitely BETTER. Hope to write about running, dancing and cute shoes sometime in the not so distant future. A girl can dream....and work hard to make the dreams come true.
At my 6 mos follow up US flow is still good and the veins are still open, right one is still small 7mm. My brother got married last weekend in Miami and I wore high heels and danced (nothing with a lot of feet off the ground stuff but, I was able to stand up and shimmy for 3 hours in high heels). Foot still dragged at times and I am still heat sensitive, but life continues to be better and I am able to do things (like heels and dancing) that were unthinkable a year ago.
2nd neuro appt since procedure. He said there was no deterioration that he noticed since my visit 6 mos ago when he noted several improvements.
He scheduled me for an MRI which showed no active lesions and no deterioration since my 2009 MRI. Gave me his blessings to off DMDs so I am needle free.
Go back for another MRI in 6 mos to make sure I don't get worse. Lets hope there are no flares to give him a reason to recommend going back on drugs.