CCSVI tracking project-POST PER P.1 FORMAT ONLY

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

Postby msjen » Tue Jul 13, 2010 7:27 am

MS HISTORY
Name (if want to give other than TIMS login name): Jennie
Male/Female: F
Age: 38
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS
Lesion locations (most affected side, if known), number: 35 (most in cerebellum)
MS treatments: no DMD's; mostly naturopathic and LDN most recently; Not on anything now, but should reconsider vitamin regimen.
MS symptoms before stenosis intervention:
Number of relapses before intervention (if applicable): 2 bad, must've been more without symptoms though
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 6.0 self assessed
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandedd ... scale.html ]
FSS before CCSVI intervention:
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? N

Have you had testing (and possibly procedure) for blockage yet: Y
STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: July 5,2010 testing and procedue done in Bulgaria.
Type of venographic study: Color Doppler of Jugulars
Diagnosis: CCSVI
Type of procedure: balloon angioplasty
Procedure/drug related symptoms:
[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 :
no more "light spots" when I close my eyes
feel less blood in head - I no longer need to sit up to change sleeping positions (this has gone away now)
walking stronger (no cane anymore - cane is back) - less stiffness in right leg although still stiffness in left leg
balance- falling to left instead of right when my eyes are closed (not sure why?)
EDSS as of this update : 5.5 self assessed
FSS as of this update:
MSIS as of this update:

STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure: tested again at CCSVI-Atlanta
Type of venographic study: Color Doppler of Jugulars
Diagnosis: CCSVI (following Zamboni protocol I meet 3 of the 5 criteria again)
Type of procedure: not done or scheduled yet
Procedure/drug related symptoms:
[Repeat this section if there have been more than one procedure]
Number of relapses since first CCSVI intervention: still 0 - I will have my next scan in April
Impact on your MS symptoms in words :
blood in head - I sleep in the same position all night
cane is back - stiffness in both legs
The only thing that has stayed is that I still sometimes sweat and do not have the light spots.
EDSS as of this update : 6.0 self assessed
FSS as of this update:
MSIS as of this update:
Last edited by msjen on Thu Aug 26, 2010 12:03 pm, edited 2 times in total.
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Postby spiff1970 » Wed Jul 14, 2010 2:30 pm

MS HISTORY
Name: Pedro
Male/Female: M
Age: 39
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): diagnosed in 2006 with RRMS
Lesion locations (most affected side, if known), number: 7 in spinal cord, about 4 assymptomatic lesions in brain.
MS treatments: Rebif 22 and 44 (2006-2007), Copaxone (since 2007).
MS symptoms before stenosis intervention: numbness and weakness in both legs especially in knees and below. Some mild espasticity. Twitches. Left eye slightly affected. Fingers in right hand slightly stiff. Constipation.
Number of relapses before intervention (if applicable): 1
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 1.5.
FSS before CCSVI intervention:
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? N

Have you had testing (and possibly procedure) for blockage yet: Y


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 8/4/2010, Saint-Louis Hospital, Lisbon (Venography). 8/7/2010, same place (Angioplasty).
Type of venographic study: Venography with insertion of catheter.
Diagnosis: five stenosis (three in azygos, one in each jugular).
Type of procedure: Angioplasty in all five stenosis. Stenting of left jugular.
Procedure/drug related symptoms: mild headache, sore neck, bruise in left groin, fever in the following three days.

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words: (one week after) less numbness and more strength in both legs.
EDSS as of this update (self-assessed or physician-assessed?): 1.5.
FSS as of this update:
MSIS as of this update:
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Postby Greenfields » Sat Jul 17, 2010 9:10 am

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

MS HISTORY
Name (if want to give other than TIMS login name):
Male/Female: Male
Age: 40
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other):RRMS Dx Jan 2006 with ON in left eye
Lesion locations (most affected side, if known), number: 5 big-uns
MS treatments: Rebif, vitamins, steroids to correct ON
MS symptoms before stenosis intervention: Faded vision in Left eye, headaches, stiffness, depression, anxiety and ADD
relapse intervention (if applicable): I have no idea what a relapse would be
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 1.0
FSS before CCSVI intervention: Nil
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]
MSIS before CCSVI intervention: Nil
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? (Y/N)

Have you had testing (and possibly procedure) for blockage yet: No testing prior to the procedure, why pay for the same test twice? Venogram is the gold standard and has to be done prior to any angio


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Albany, NY July 16, 2010
Type of venographic study: Venogram
Diagnosis: slight stenosis is both jugulars and complete blockage high in Right jugular
Type of procedure: Angioplasty
Procedure/drug related symptoms: Stiff right shoulder
[Repeat this section if there have been more than one procedure]

Number of relapses since first CCSVI intervention: NIl
Impact on your MS symptoms in words (include date in brackets if there have been multiple up dates): Left eye colour wash better (more crisp colours) headache gone.
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
Last edited by Greenfields on Wed Aug 04, 2010 9:19 am, edited 1 time in total.
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Postby Ali888 » Wed Jul 21, 2010 8:37 am

CCSVI TRACKING 07/21/10

MS HISTORY
Ali
Female
44 yo
RRMS diagnosed June 1993. Many attacks throughout the years. I usually responded well to high-dose intervenous steroids. I took beta-seron from 1997 until my third pregnancy in Oct, 2000. I went on Rebif for 3 months after the birth of my daughter. It was destroying my liver, so I went back on Beta-seron until Nov., 2009. I have had permantent damage to my thyroid. I have also been on high-dose IV steroids every 8 weeks since Dec., 2009.


EDSS before Intervention:: 6

07/05/10 - Doppler Ultrasound in Alexandria, Egypt - both right and left jugulars severely stenosed and signs of reflux. It was noted that my thryoid is very small. Dr. Sameh actually asked if I had had part of it surgically removed.
07/09/10 - Dr Tariq at Louran Hospital perform venogramphy and ballooned both right and left jugulars as well as aszygous vein.

RELAPSES SINCE FIRST CCSVI Intervention: NONE to date
Impact Noted So Far: It has only been 10 days but my feet are no longer blue/purple. I have feeling in my feet for the first time in a decade. I can take 15 heel-toe steps in a row. Prior to the procedure, I could not do a single one. I am not using my elbow crutch, but this could be mind over matter.

EDSS as of this update: 5
FSS as of this update:
MSIS as of this update:
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Postby ssmme » Tue Aug 03, 2010 11:54 am

MS HISTORY
Name: SSMME
Male/Female: F
Age: 43
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): diagnosed in 2006 with RRMS
Lesion locations (most affected side, if known), number: 7 in spinal cord, 3 in brain stem, 7 in brain of which 2 enhancing slightly, left side affected both arm and leg
MS treatments: Tovaxin trial, Campath trial, no CRABs
MS symptoms before stenosis intervention: left foot drop, left leg abnormal gait, left hand tingling, stiffness in fingers and weakness - hard to type with left hand, cogfog, heat intolerance causes left leg to go out completely like a wet noodle and brain fogginess like I have a buzz but haven't drank,depression
Number of relapses before intervention (if applicable): 6
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 4.0
FSS before CCSVI intervention:
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? N

Have you had testing (and possibly procedure) for blockage yet: Y


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: July 19,2010, AMEDS Centrum,Warsaw, Poland
Type of venographic study: MRV, ultrasound,Venography with insertion of catheter.
Diagnosis: LJV -80% blockage,RJV - 50% blockage, azygous okay
Type of procedure: Angioplasty
Procedure/drug related symptoms: sore neck, bruise in right groin

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words: ( two weeks after) less cogfog and more strength in left leg - gait is less severe
EDSS as of this update ( physician-assessed): 4.0
FSS as of this update:
MSIS as of this update
Marcia
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Postby HappyPoet » Tue Aug 10, 2010 5:39 am

CCSVI TRACKING

MS HISTORY

Name: Pam
Male/Female: Female
Age: 50
Diagnosis/Year diagnosed: RRMS (worsening), 2000
Brain lesions: Too many to count, diffuse.
Spinal lesions: Longitudinally-extensive symptomatic T5-T9 lesion.
MS treatments: Steroids, Copaxone, Avonex, Methotrexate, Tysabri, Novantrone.
MS symptoms: PAIN, spasticity, fatigue, brain fog, cognitive and memory issues, mental health issues (depression, anxiety, paranoia), narcolepsy, insomnia, heat intolerance, numbness, constipation, hearing loss, tinnitus, and ON (temporary total blindness, optic nerve atrophy, PAIN in eye, PAIN behind eye, nystagmus, blurry vision, double vision, tunnel vision, Uthoff's syndrome, loss of color vision, loss of peripheral vision, blinded by bright lights).
No. of relapses: 5 over 10 years, with lifelong symptoms.
EDSS: 5.5 self assessed
FSS: N/A
MSIS: N/A
I.B.T: No -- tried it, didn't like it.
Have you had testing and procedure: Yes


STENOSIS PROCEDURE HISTORY

First procedure: Done 8/10 by Dr. Mehta in Albany, NY. No benefit.

Second procedure:
Date/location: 3/4/11 by Dr. Sclafani in Brooklyn, NY :D
Type of imaging studies: MRV, Doppler US, CT catheter venography
Diagnosis: Dural sinus malformations (MRV), CCSVI (DUS, venography)
Type of procedure: Venoplasty of LIJV, RIJV; Azygos and other veins have good flow.
Number of relapses since second CCSVI intervention: 0
Impact on your MS symptoms in words: I have my balance back and can dance without falling on the floor! For the first time ever, I can see that the red letters on "EXIT" signs are lit from within and glow!
EDSS as of this update: 5.5 self assessed
FSS as of this update: N/A
MSIS as of this update: N/A
Last edited by HappyPoet on Sat Mar 12, 2011 7:42 am, edited 5 times in total.
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Postby BooBear » Tue Aug 10, 2010 5:45 am

MS HISTORY
Name (if want to give other than TIMS login name): BooBear
Male/Female: (M/F) F
Age:
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS; SPMS suspected
Lesion locations (most affected side, if known), number: 36 lesions in the periventricular, subcortical and deep white matter. Two new lesions in the posterior left parietal lobe and anterior left cerebellar vermis without concurrent relapse in the past six months; two new lesions without concurrent relapse in the six months prior to that MRI as well.
MS treatments: Avonex since dx (2004); IV Solumedrol 3-5x a month for nine months straight (2008-2009) plus immediately after 2008 relapse for 5 days straight. Minocycline added in 2010. Oral cladribine clinical trial in addition to Avonex and Minocycline in 2009-2010. Provigil for cognitive and fatigue issues. Various doses of prednisone in the past.
MS symptoms before stenosis intervention: Fatigue and cognitive issues dominant; several relapses from optic neuritis to left arm paralysis (since restored by lack feeling in left arm)- double vision, loss of eyeball movement control in 2005 (since restored fully). Heat intolerance from time to time.
Number of relapses before intervention (if applicable): At least a dozen documented relapses since 2004; average of twice a year.
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 1.0; physician-assessed
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandedd ... scale.html ]
FSS before CCSVI intervention:
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? (Y/N) N

Have you had testing (and possibly procedure) for blockage yet: (Y/N) August 13, Albany Medical Center
[Some patients may wish to start with a baseline report, if Y, continue with next section]

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: August 13, 2010. Albany Medical Center, Albany, NY.
Type of venographic study: (MRV, Doppler) Venogram
Diagnosis: Significant stenosis in left IJV; stenosis in right IJV, stenosis in azygous vein. Collateral veins present with all three. I will update more here when I receive my report.
Type of procedure: Angioplasty
Procedure/drug related symptoms: None. Left IJV AP was painful; pain abated after a few minutes. A bit tired the next day, but doing fine now.
[Repeat this section if there have been more than one procedure]

Number of relapses since first CCSVI intervention: Zilch. Zero. NADA!
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates): My heel-to-toe walk was flawless upon discharge. Vision improved- much clearer. Brain fog gone. Sleeping much better. Fatigue- gone. Able to stand up from squat unassisted. Stronger feeling in legs. Feel wonderful overall. I will update as the weeks go on. Also on Plavix for the next 3 months.
EDSS as of this update (self-assessed or physician-assessed?) 1.0, self-assessed
FSS as of this update:
MSIS as of this update:
Last edited by BooBear on Wed Aug 18, 2010 2:06 pm, edited 2 times in total.
Three veins angioplastied.  One renewed life.  
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Postby htribe74 » Tue Aug 10, 2010 10:19 am

CCSVI TRACKING 08/10/2010

MS HISTORY
Name: David
Male/Female: M
Age: 44
Date & type of neurological diagnosis: Aug. 1992 RRMS
Lesion locations (most affected side, if known), number: most lesions(more than 100 combined black and white) on brain, few on spine.
MS treatments: Betaseron for 10 years, Rebif for 3 years. For the last year I have been off all medications except for Mipapex for RLS, Ambien for sleep, and Viagra when needed.
MS symptoms before stenosis intervention: Fatigue, cognition and memory(this is a BIG one, as I lose train of thought and will start speaking and find myself forgetting what I was talking about in the first place,) balance and mobility(need cane at least 20% of time), spasticity in legs as well as restless leg syndrome, difficulty falling asleep and staying asleep, sexual disfunction, bladder issues, slurred speech at times, eyesight is very blurry(eespecially at night) and double vision.
Number of relapses before intervention: 25 total. legally blind 3 times, complete immobililty several times.
EDSS before CCSVI intervention self-assessed: 5.0
FSS before CCSVI intervention: 6

MSIS before CCSVI intervention: 115
Are you using Inclined Bed Therapy I.B.T? N

Have you had testing (and possibly procedure) for blockage yet: Y
STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 8/5/2010
Type of venographic study: Doppler
Diagnosis: found significant 'webbing' in left jugular, rate of flow(?) is at a 6, while rate of flow on on other side is a 20.
Type of procedure: will be having angioplasty in about 3 hours!!! :)
Procedure/drug related symptoms:
[Repeat this section if there have been more than one procedure]

Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update: :D
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Postby Asher » Thu Aug 12, 2010 7:19 am

CCSVI TRACKING - 08/12/2010

MS HISTORY
Name: Asher Cohen
Male/Female: M
Age: 47
Date(s) & type of neurological diagnosis: RRMS since '96, SPMS since '07
Lesion locations (most affected side, if known), number: ?
MS treatments: Rebif, Tysabri.
MS symptoms before stenosis intervention: Fatigue, dorp R foot, week R hand, cold hands and feet, bladder control.
Number of relapses before intervention: 2 that I’m aware of

EDSS before CCSVI intervention: self-assessed 4-4.5
FSS before CCSVI intervention: 41
MSIS before CCSVI intervention: 58

Have you had testing (and possibly procedure) for blockage yet: No. I experienced 2 major attacks: One in 1996 with full recovery and the second in 2003 with +/-80% recovery. End 2007, during a stressful event, marked the beginning of a steady decline.

STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure: July 3, 2010 / Tyche, Poland Angioplasty.
Type of venographic study: MRV, Doppler
Diagnosis: No stenosis. 40% slower blood flow due to malfunctioning L/R valves.
Type of procedure: Balooning.
Procedure/drug related symptoms: Non

Number of relapses since first CCSVI intervention: Non
Impact on your MS symptoms in words: Warmer hands and feet, better bladder control, to date no apparent further deterioration.

Update
8 weeks after the procedure
Hands and feet still warm despite colder weather setting in. Walking and stamina gradually improving.

3 months post procedure
Hands and feet still warm.
Walking and stamina continue to gradually improve.

EDSS as of this update: self-assessed -No change
FSS as of this update: No change
MSIS as of this update: No change
Last edited by Asher on Sun Oct 17, 2010 11:56 am, edited 3 times in total.
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Postby Annabelle » Thu Aug 12, 2010 3:48 pm

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

MS HISTORY
Name: Annabelle
Male/Female: F
Age: 33
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): May 09 RRMS (?)
Lesion locations: 9 brain lesions, main one being a large periventricular black hole
MS treatments: Avonex since June 09
MS symptoms before stenosis intervention: tingling (right leg and left shoulderblade), numbness (left knee and toe), fatigue, weakness (upstairs), wake with dead arms in night, dizziness, retinal impression (blinded in bright light), choking occasionally...
Number of relapses before intervention: 1 official (ON), additional 2 or 3 (
EDSS before CCSVI intervention (self-assessed): 1.5
FSS before CCSVI intervention: TBD
MSIS before CCSVI intervention: TBD
Are you using Inclined Bed Therapy I.B.T? Y

Have you had testing (and possibly procedure) for blockage yet: Y

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 10-11/08/10
Type of venographic study: MRV, Doppler (DR Meyn - Doppler; Prof Vogl, MRV & http://www.mult-sclerosis.org/fatiguese ... htmlpedure)
Diagnosis: 20% stenosis left jugular, 50% stenosis right jugular
Type of procedure: balooning
Procedure/drug related symptoms: -

Number of relapses since first CCSVI intervention: 0
Impactonyour MS symptoms in words (include date in brackets if there have been multiple updates):
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
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Postby BadCopy » Mon Aug 16, 2010 5:43 am

MS HISTORY
Name : Tony
Male/Female: M
Age: 39
Date(s) & type of neurological diagnosis: 1993 RRMS, SELF DX 2007 OF SP
Lesion locations (most affected side, if known), number: number=ABOUT 10-15, MOSTLY BRAIN. 1 ON THE STEM
MS treatments: AVONEX,COPAXONE,BETASERON,STEROIDS
MS symptoms before stenosis intervention: Fatigue, numbness on right side-arm,R leg. Dizziness, brain fog, walking only short distances before needing a break, needing a cane, limping, nastagmus. Headaches, hesitation and retention in urination, heat intolerance . Choking, Trouble gripping and writing.
Number of relapses before intervention (if applicable): average of1 per year. that would = 17 since 1993
EDSS before CCSVI intervention : ?
FSS before CCSVI intervention:
MSIS before CCSVI intervention:
Are you using Inclined Bed Therapy I.B.T? N

Have you had testing (and possibly procedure) for blockage yet: y, scheduled for August 20th 2010

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Aug 20, 2010

Type of venographic study: (MRV, Doppler) catheter venogram

Diagnosis: CCSVI

Type of procedure: catheter ballooning of both IJVs and azygous

Procedure/drug related symptoms: none

Number of relapses since first CCSVI intervention: 0

Impact on your MS symptoms in words. 8/29/2010---vision is a little better at scanning across a room. Less jittering of the eye. Balance has improved some. Heat does not wipe me out as much as it normally had. Noticable strength improvement in right leg. Climb the stairs without rails

FINDINGS: Partial blockage right and left lower jugular, upper right Jugular, and Azygus. All areas were ballooned. Stayed open so no need for stents.

One week changes:
-Nothing is worse after having the procedure
-Balance has improved. I can now ascend and usually descend stairs without the railing. For the last 6-9 months the railing was required. A bit embarrassed, but I put my pants on while standing up for the first time in over a year.
-I noticed that I can scan a room much easier. It’s not perfect, but much smoother and less ratcheting while looking across the room.
-Foot drop now takes longer before it sets in while walking.
-I found myself turning UP the temp in the shower. And I was much less affected by it afterwards.

I saw good results for around 8-12 days initially. after that I started getting the cold right hand, foot drop, weak right leg, stretching leg after sitting for short amount of time, head aches (pressure), word finding, right leg bouncing, taught right leg. Word finding is bothersome again.

Now that being said, I seem to have continued getting stronger, kept the balance improvements(that may be because of the strength?), there are days, and even times within a day that I can tell my walking is better again ,that includes foot drop, still dreaming again, cold RH actually seems more numb than cold and less frequent, fewer headaches. Heat intolerance is better than pre-op but not as good as it was initially. I forgot what it was like to dream.

Things are definitely better than pre-op but, at least for the time being, less than they were the first week or two. At least for now things come and go but still are staying on the plus side. I am not going to rush to a decision as to whether veins stayed open or not. I think I am just going to take it one month at a time until my three month date. Along the way I will confer with my DR about what direction to take.
Last edited by BadCopy on Tue Nov 02, 2010 10:13 pm, edited 4 times in total.
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Postby Sawdoggie » Tue Aug 17, 2010 6:53 pm

CCSVI TRACKING

MS HISTORY
Name (if want to give other than TIMS login name):
Male/Female: (M/F) Male
Age: 36
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS/CIS(?) diagnosed 04/2009
Lesion locations (most affected side, if known), number: 14 bilateral, 3-4 C2-C6
MS treatments: Betaseron
MS symptoms before stenosis intervention: Fatigue, "fuzzy-head", CRS syndrome, occasional leg weakness/heaviness
Number of relapses before intervention (if applicable): 1 definite
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 1.0 physician assessed
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandedd ... scale.html ]
FSS before CCSVI intervention: 32
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]
MSIS before CCSVI intervention: 35
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 08/13/2010 Albany, NY
Type of venographic study: (MRV, Doppler) Angiogram
Diagnosis: Moderate-to-sevre stenosis at the base of the RIJ; Severe stenosis at the base of the LIJ; Mild-to-moderate irregularity along the course of the azygous arch.
Type of procedure: Angioplasty in both IJVs and azygous
Procedure/drug related symptoms: Since procedure: sore neck, some heaviness in legs/arms, headache. All are getting better slowly and eyesight is more "vivid" post procedure; On 325 mg/day Asprin for 3 months (Plavix and Prilosec don't mix).

Number of relapses since first CCSVI intervention: none so far
Impact on your MS symptoms in words :

[1 mo out]
I still get occasional heaviness/tingling in legs but this is not that big of a deal and is more just a subtle reminder. Headaches are a thing of the past hopefully as I have not had one since a couple days after the procedure. All in all, I feel good (though I did going in). I am sleeping better/more at night and feel more energetic during the day. Not waking up with a headache alone makes this worth it.

EDSS as of this update 0-1 SA
FSS as of this update:
MSIS as of this update:

[almost 3 mo out]
Ditto above minus any issues with my legs. On a day to day basis, I don't feel any MS symptoms of note and if I didn't take a shot every other day to remind me about MS, I would forget about it. Ultrasound showed everything is amazingly normal and patent.

EDSS as of this update 0 SA
FSS as of this update:
MSIS as of this update:

[9 months out]
Just had an ultrasound for a 9 mo follow-up in Albany and everything seems to check out. Of the five criteria they look for using the Zamboni protocol I am negative on all five. No symptoms, no relapses, no problems. Still no chronic headaches or fatigue which are great things. I have my annual neurologist in a couple of weeks and they are going to do an MRI which will be my first since the procedure. I am curious (and the neuro is as well) if there are any changes post procedure. I had one shortly before the procedure that we can compare against.

EDSS as of this update 0 SA
FSS as of this update:
MSIS as of this update:
No relapses.
Last edited by Sawdoggie on Thu May 19, 2011 7:14 pm, edited 4 times in total.
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Postby eyebrow » Wed Aug 25, 2010 12:33 pm

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CCSVI TRACKING

MS HISTORY
Name (if want to give other than TIMS login name):

Male/Female: (M/F)Female

Age: 59

Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS/CIS(?) RRMS since Jan 1986, SPMS since about 1998

Lesion locations (most affected side, if known), number: ???

MS treatments: Medications to relieve symptoms:- carbamazapine, pregabalin, amantadine, tolterodine, trimethoprim. Surgery for trigelmic neuralgia.

MS symptoms before stenosis intervention: Dropped left foot, very limited mobility, heavy legs, cramps & spasms in legs, burning sensations, unable to straighten left hand or use fingers independently, weakness in left arm, ms hug, trigelmic neuralgia, bladder control - urgency, fatigue, difficulty chewing/swallowing, sometimes can't find words, or words come out wrong, poor memory, visual impairment due to damaged optical nerve in right eye.


Number of relapses before intervention (if applicable): 4 or 5

EDSS before CCSVI intervention (self-assessed or physician-assessed?): 6
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandedd ... scale.html ]

FSS before CCSVI intervention: 61
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]

MSIS before CCSVI intervention: 99
[To calculate MSIS rating , click the following link:
http://healingpowernow.com/msis.htm ]

Are you using Inclined Bed Therapy I.B.T? (Y/N)No

Have you had testing (and possibly procedure) for blockage yet: (Y/N)Yes

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 16/17 August 2010, Katowice, Poland

Type of venographic study: (MRV, Doppler) MRI, Doppler & MRV

Diagnosis: Stenosis in both jugular veins, one only slight.

Type of procedure: Angioplasty in both IJVs

Procedure/drug related symptoms: Pain between shoulder blades following day - didn't last long, not at all severe. Px'd hemarin injections for 7 days - no problem. Extensive bruising of upper leg and a little tenderness around incision site - this was my own fault as I did not lie flat as instructed following procedure, and I had dislodged the compression dresing. Px'd hemarin lotion for the bruised area as an extra precaution.


Number of relapses since first CCSVI intervention: 0 (only 1 week since treatment)

Impact on your MS symptoms in words (include date in brackets if there have been multiple updates): Immediate and dramatic improvement to mobility of left leg. Before treatment I could raise leg about 1 inch off bed with a lot of effort. Post treatment 90degrees or more. I am able to lift left foot when walking, hence walking much faster/further. I can straighten my left hand and move fongers indepently of each other, although there is still some weakness. Cold hands & feet less frequent. Less fatigued, and I feel generally more alert. Bladder problems seem a little worse - mostly during the night. I feel this is due to catheter during procedure and believe it may settle down in a few more days.

EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update: Too soon to assess, I'm still taking it easy - as instructed (this time). I will update after 1 month




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Postby 1eye » Wed Aug 25, 2010 4:07 pm

CCSVI TRACKING 08/23/2010

MS HISTORY
Name Chris Sullivan

Male/Female: M

Age: 56

Date(s) & type of neurological diagnosis: Feb 2010 SPMS

Lesion locations (most affected side, if known), number: ??

MS treatments: on amantadine, alertec, baclofen, cesamet, effexor, welbutrin

MS symptoms before stenosis intervention: dizzyness, tinnitus, leg and foot paralysis (left) weak left arm and hand, heat sensitivity, fatigue, sexual disinterest and ED, back and head pain, numbness in all appendages, wheelchair bound

Number of relapses before intervention (if applicable): last one 2 yrs ago IV steroids

EDSS before CCSVI intervention (self-assessed or physician-assessed?):
7 self and physician

Are you using Inclined Bed Therapy I.B.T? (Y/N) no

Have you had testing (and possibly procedure) for blockage yet: (Y/N) N

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Aug 23, 2010

Type of venographic study: (MRV, Doppler) catheter

Diagnosis: CCSVI

Type of procedure: catheter ballooning of both IJVs and azygous

Procedure/drug related symptoms: dizzy as very sensitive to diazepam/valium, lasted one extra day, took 3 hours to wake up

before CCSVI intervention (Liberation)
-----------------------------
FSS : 7
MSIS 118
MSFC:
walking test (timed 10 metre walk,average of 2 runs): 12 s
peg test: average of 2 runs with each hand L=64 s, R=59 s
PASAT average of 2 runs at 3 second intervals % correct = 54
average of 2 runs at 2 second intervals % correct = 35.5

at 1 week:
------------
FSS:
MSIS:
MSFC:
walking test (timed 10 metre walk,average of 2 runs): 9 s
peg test: average of 2 runs with each hand L=41 s, R=49 s
PASAT average of 2 runs at 3 second intervals % correct = 53.5
average of 2 runs at 2 second intervals % correct = 37.5

at 1 month:
--------------
FSS:
MSIS:
MSFC:
walking test (timed 10 metre walk,average of 2 runs): 9.5 s
peg test: average of 2 runs with each hand L=52.5 s, R=44 s
PASAT average of 2 runs at 3 second intervals % correct = 57
average of 2 runs at 2 second intervals % correct = 44

at 3 months:
---------------
FSS:
MSIS:
MSFC:
walking test (timed 10 metre walk,average of 2 runs): xx seconds
peg test: average of 2 runs with each hand L=xx seconds
R=xx seconds
PASAT average of 2 runs at 3 second intervals % correct =
average of 2 runs at 2 second intervals % correct =

at 6 months:
----------------
FSS:
MSIS:
MSFC:
walking test (timed 10 metre walk,average of 2 runs): xx seconds
peg test: average of 2 runs with each hand L=xx seconds
R=xx seconds
PASAT average of 2 runs at 3 second intervals % correct =
average of 2 runs at 2 second intervals % correct =

at 9 months:
----------------
FSS:
MSIS:
MSFC:
walking test (timed 10 metre walk,average of 2 runs): xx seconds
peg test: average of 2 runs with each hand L=xx seconds
R=xx seconds
PASAT average of 2 runs at 3 second intervals % correct =
average of 2 runs at 2 second intervals % correct =

at 1 year:
------------
FSS:
MSIS:
MSFC:
walking test (timed 10 metre walk,average of 2 runs): xx seconds
peg test: average of 2 runs with each hand L=xx seconds
R=xx seconds
PASAT average of 2 runs at 3 second intervals % correct =
average of 2 runs at 2 second intervals % correct =


at 15 months:
-----------------
FSS:
MSIS:
MSFC:
walking test (timed 10 metre walk,average of 2 runs): xx seconds
peg test: average of 2 runs with each hand L=xx seconds
R=xx seconds
PASAT average of 2 runs at 3 second intervals % correct =
average of 2 runs at 2 second intervals % correct =

at 18 months:
-----------------
FSS:
MSIS:
MSFC:
walking test (timed 10 metre walk,average of 2 runs): xx seconds
peg test: average of 2 runs with each hand L=xx seconds
R=xx seconds
PASAT average of 2 runs at 3 second intervals % correct =
average of 2 runs at 2 second intervals % correct =

at 21 months:
-----------------
FSS:
MSIS:
MSFC:
walking test (timed 10 metre walk,average of 2 runs): xx seconds
peg test: average of 2 runs with each hand L=xx seconds
R=xx seconds
PASAT average of 2 runs at 3 second intervals % correct =
average of 2 runs at 2 second intervals % correct =

at 2 years:
-------------
FSS:
MSIS:
MSFC:
walking test (timed 10 metre walk,average of 2 runs): xx seconds
peg test: average of 2 runs with each hand L=xx seconds
R=xx seconds
PASAT average of 2 runs at 3 second intervals % correct =
average of 2 runs at 2 second intervals % correct =

If procedure is re-done, reason will be given and a new tracking form will be used, separate from this one.

Follow-up care: an appointment in Barrie (Dr. MacDonald et al) for the 1 month timeframe (Sept. 24) to avoid future trips to US.
Last edited by 1eye on Sat Oct 02, 2010 7:52 pm, edited 3 times in total.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby msscooter » Fri Aug 27, 2010 10:23 am

MS HISTORY
Name : MSscooter
Male/Female: F
Age: 55
Date(s) & type of neurological diagnosis: 2002 SPMS
Lesion locations : MS diagnostic MRI: Mostly spinal, cervical, several small UBO's in brain. venogram: both IJVs and agygous veins blocked.
MS treatments: Solumedrol, 1gm orally X 3days every other month. Vit D.
Used to use neurontin and dilantin but not for >1yr.
MS symptoms before stenosis intervention: Numbness hands and feet, both sides, beginning to affect L side this last yr, foot drop, fine motor control gone, weak cold hands, cold feel esp R., neurogenic bladder with retention and incontinence 2-3 times /week, occasional fecal incontinence, terrible MS Hug, some memory problems, word recall, slight swallowing difficulty, balance problems, hyperaesthesia hands and feet, esp R side.
Number of relapses before intervention (if applicable): progressive Dz.
EDSS before CCSVI intervention : 3.5-4
FSS before CCSVI intervention: ? not bothered by fatigue
MSIS before CCSVI intervention: 75
Are you using Inclined Bed Therapy I.B.T? Y

Have you had testing (and possibly procedure) for blockage yet: Y

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: July 21 2010 Baltimore, MD
Type of venographic study: MRV (crappy one in Ca.) venography @ UMD.
Diagnosis: Stenosis in both jugular veins, valve problem in azygous
Type of procedure: Balloon Angioplasty in right and left IJV, L side worse, had slight tear, stent placed LIJV @ collarbone, incomplete angioplasty of azygous for various reasons to be resolved by research.

Procedure/drug: Heparin? no sedation at my request. take plavix now X 3 mo.

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words: 8/26/2010 One month out. Numbness and weakness continue to abate. Incontinence no longer an issue no retention. Able to sustain hand grip and walking for longer periods, without pain or decline. Balance restored. Foot drop 70-80% improved.
Fine motor skills restored. Able to do fine craft work again!! hand strength greatly improved, muscle atrophy, still present but beginning hand strengthening exercises, able to sustain effort!!! Aside from continued Hug which is bad, I am getting stronger and more coordinated every day. used to progress the other way. Feel blessed to have had this cure. looking forward to my next liberation to finish the job.
EDSS as of this update (self-assessed): 3-3.5
FSS as of this update: ?
MSIS as of this update:40

Update 3/2011: continued to improve strength and balance through November 2010. Stopped using cane and scooter in October. Began feeling symptoms creep back around Christmas, but could not secure an ultrasound close to home. Also confused because I continued to improve somewhat, if not at same rate as before and with a few "set backs". Finally started getting a clear decline and was able to secure an US that revealed a blocked stent LIJV late Feb. Had another angiogram that showed he blood clot had hardened, also IR did a more complete study of azygos (slow checking of whole vein w/ partially inflated balloon) and found "candy wrapper twist" which I suspected because of intense MS hug!

Am now looking for laser oblation of blockage and will consider possible stent of azygos after this blocked stent issue is resolved. Doctor said they are thinking about new stent designs for CCSVI- will be a 7-8 yr process to bring a design to market...... hope I can wait! Now have follow-up available close to home.
Last edited by msscooter on Sun Mar 06, 2011 4:46 pm, edited 1 time in total.
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