This Is MS Multiple Sclerosis Community: Knowledge & Support

CCSVI TRACKING

First report: 04/13/2011
MS HISTORY
Name: cmozena
Male/Female: F
Age: 49
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): Jan. 1996 RRMS

Lesion locations (most affected side, if known), number: several lesions on brain and alot on spinal cord.
MS treatments: Copaxone on and off since 1998. Tried Avonex but bad flu symptoms Prednisone 4 times a year from 2003 til 2009.

MS symptoms before stenosis intervention:
Progressive Weakness & painful tthigh spasticity in right leg: couldn't lift left leg off the floor; poor balance; gait problems: Began using cane 2007 and now using 2 canes most of the time. coldness in both feet and turn purple when seated for more than 10 minutes. cog-fog, bladder urgency and worsening leakage fatigue; severe heat intolerance.
(started selling real estate in 2006 which I believe that was the CAUSE of my worsening! Stress! who knew!)
Number of relapses before intervention (if applicable): mostly just steady worsening.
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 6.5.I use a cane at all times.

FSS before CCSVI intervention:
Are you using Inclined Bed Therapy I.B.T? (Y/N): N but feel good if I recline in recliner during day for an hour or so.

Have you had testing (and possibly procedure) for blockage yet: MRV: Oct.2010
STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Oct.2010. Tampa, FL
Type of venographic study: (MRV, Doppler)
Diagnosis: MRV
Type of procedure: Angioplasty balooning
mid level RIJV was balooned and Azygos balooned. Had huge web of collaterols off Azygos that disappeared as soon as balooned. I had had 2 compression fractures in my back in 2006 and 2009. Always had an internal warmth (blood flow?) in the area where the collaterols were. No (neuro) docs could explain this.
Procedure/drug related symptoms: no problems. sore in chest where azygos balooned.
[Repeat this section if there have been more than one procedure]

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):
Positive: Initially I felt great: less fatigue, better cognition, left leg lifted and right leg felt stronger. Had a few episodes walking without a cane This only lasted 1-2 weeks.
Negative: As the weeks went on, gait declined. and I also started getting facial and left leg numbness when I laid down. Cognition worse and 3
big incontinence 'events'. Tight, painful spasticity in right thigh worse.
(read on..there's good news after procedure 2).

EDSS as of this update (self-assessed or physician-assessed?) same 6.5
FSS as of this update:
MSIS as of this update:

Date/location of testing/procedure: Feb..2011. Tampa, FL
Type of venographic study: (MRV, Doppler)
Diagnosis: Doppler
Type of procedure: Angioplasty balooning
low level RIJV and high level LIJV were balooned. Two areas (mid RIJV and Azygos did NOT restenose from 1st agioplasty!).
The lower RIJV was now 70-80% stenosed. This was not there the first time I had the angioplasty at the mid RIJV. It seems that while the mid level stayed open, the lower level was now severely closed AND there was significant REFLUX).
The high LIJV was balooned this time and doc said it was 50% stenosed and was just not treated the first time.
Procedure/drug related symptoms: Spent several days in bed after this time cause felt wiped out. sore in neck.

[Repeat this section if there have been more than one procedure]

Number of relapses since first CCSVI intervention: some decline again.
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
Negative: Didn't feel great initially. Stayed in bed for several days. My right leg is now not as strong and flexible (left RIJV balooned?). This is a big disappointment since the right leg was my friend.
My hypothesis is that if you have a strong leg, you should try to avoid ballooning the opposite juggular.
Fatigue isn't great but don't don't need to nap everyday.
Gait is still not good and feel more steady using the 2 canes.
Positive: NO INCONTINENCE - not once! no urgency even! not even leakage, NO PAINFUL RIGHT THIGH SPASTICITY - I've cut the Baclofen in half and no pain/tightness at all. COGNITION significantly better now too. I've been quizing myself on short term memory everyday and I'm much sharper in recall and conversation train of thought!

EDSS as of this update (self-assessed or physician-assessed?) same 6.5
FSS as of this update:
MSIS as of this update:

Would love to walk better but my bladder,cognition, and spasticity improvements are PRICELESS!