This Is MS Multiple Sclerosis Community: Knowledge & Support

CCSVI TRACKING 10/22/2010

MS HISTORY
Name: Roseanna
Male/Female: F
Age: 27

Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other):
January 2010, RRMS

Lesion locations (most affected side, if known), number:
5, central & pretty even

MS treatments: None

MS symptoms before stenosis intervention:
Numbness, Tingling, Balance Issues, Headaches, Optic Neuritis right eye, Hiper reflexive right leg, sometimes bladder urgency, Memory problems, slurred speech, weakness in both legs

Number of relapses before intervention (if applicable): 2

EDSS before CCSVI intervention (self-assessed or physician-assessed?):self assesed 2.5 depends on remission or not
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandedd ... scale.html ]

FSS before CCSVI intervention: 5
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]

MSIS before CCSVI intervention: 48
[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
[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 31, 2010 Cabo San Lucas, Mexico

Type of venographic study: (MRV, Doppler)
Doppler

Diagnosis: 2 Disfunctional Jugular Valves

Type of procedure: 20mm Balloon Angioplasty that was also "pulled" a bit

Procedure/drug related symptoms: Stiff, sore and tired after, neck slightly swollen
[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):
Less Headaches, More Stamina, Better balance, Better Visual Clarity and Mental Clarity. There are up and downs as I can feel my body still changing. The other day I ran down the stairs in my house without holding on to the handrails. I could not have done that before the procedure. I have also noticed if I stay up late I don't get a hangover type feeling the next day just regular tiredness.

EDSS as of this update (self-assessed or physician-assessed?) it's hard to tell I have good days and bad days and it has only been a little over a month since my procedure.

FSS as of this update: similar but it comes and goes, probably a little better

MSIS as of this update: similar but it comes and goes, probably a little better

CCSVI TRACKING
This entry was done by Patients Mom-

MS HISTORY
Name : Megan
Male/Female: Female
Age: 35
Date(s) & type of neurological disease type: 8/19/2010 CIS
Lesion locations , number: 2 brain lesions
MS treatments: None ( had low dose IV steroids given on date of the facial paralysis)
MS symptoms before stenosis intervention: Profound severe fatigue, "cog-fog", un-realization ( feeling like not in ones head), intermittent shock-like electrical sensations down both arms thru fingers( unable to illicit this with neck/head motion), R facial paralysis- Bell's palsy-like (July31-Aug 2), headaches, expressive aphasia ( cannot speak the word your thinking of) and short term memory impairment, ON blurry vision( like looking thru ointment)
Number of relapses before intervention (if applicable): 0
EDSS before CCSVI intervention (self-assessed or 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? N

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 9/21/2010 Shands Hospital at University of FL Gainesville FL.
Type of venographic study: venogram & multiple angioplasty
Diagnosis: CCSVI, partial blockage of L IJV with reflux and double "candy-wrapper" twist of azygos, with almost occlusion
Type of procedure: angioplasty (takes aspirin 81mg daily post angio)
Procedure/drug related symptoms: Nausea and vomiting secondary to Dilaudid on the day of the procedure, which was given to prevent pain from manipulation of the azygos (which was difficult according to IR)


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): All previous MS symptom free , has odd "rush" sensations which occur randomly last split seconds 0-3 times a day
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:

10/21/2010- Continues MS symptom free, except odd rush which are getting less frequent. Numb pinkies

12/2010 odd rush symptoms abated completely over last 2 months numbish pinkies-they are warm and function fine

summer 2011- feel great - except numb pinkies added L'arginine suppliment to help numb pinkies with success Take it a few days a week

Feb 2012- now 17 months out- no relapses. no MS symptoms. Noticed that she gets positional numbness after sleep more than "normal" person, it abates with position change and getting up and moving. Feels better when she has a good exercise program and avoiding caffeine ( hard to do)

_________________
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

CCSVI TRACKING 11/01/2010
MS HISTORY

F
45yo
RRMS 06/02/2003, Suspect CIS, Severe Depression onset 1977, Epstein Barr Virus (Mono) 09/1981, Chicken Pox (self infected) 04/1982, Allergy Shots 2000-01, both parents smoked 1pk/day 1965-1986, Concussion 05/1976, Sleep Apnea dx 10/1999, Mild Stenosis, Brdln Left Ventricular Hypertrophy, Brdln Left atrial enlargement 03/2004, Extremely allergic to Cow's and Goat's Milk, Tested positive for MTHFR (both gene mutations) 12/2009

Lesion locations (most affected side, if known), number: T3/4 T4, several in Brain with 1 black hole, Right side most affected (will finish update later)

MS treatments: Rebif 06/2003 for 1 month, Copaxone 07/2003-08/2010, Avonex 11/2010-present

MS symptoms before stenosis intervention: Chronic Disabling Fatigue, Pain, Severe Heat Sensitivity, Balance, Numbness, Depression, Hypertension, Muscle Stiffness, Periodic Severe Cramps, Bladder, Proxysmal Nystagmus, headaches
Number of relapses before intervention (if applicable):
EDSS before CCSVI intervention (self-assessed or 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) Y (just started)

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure:
Type of venographic study: (MRV, Doppler)
Diagnosis:
Type of procedure:
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:

MS History

Name: Waheed from Saudi Arabia
Male
Age: 37
Diagnosed 2006 RRMS
Lesion locations : Not sure
MS treatments: Betaferon, Baclofen, Sirdalaud, Versicare, Anafranil, Lyrica
MS symptoms before stenosis intervention:
- Balance in movement
- Walking unstability
- Difficulty in going through stairs
- Immediate fatiq and lose of control and pain in knees after walking for 15 minutes
- Bladder incontenence and urgency
- Nerve pains

EDSS, FSS, SFE before stenosis intervention: Not calculated

Stenosis Procedure History

November 9, 2010 - OLV Hospital, Aalst, Belgium, Dr. Roel Beelen
Type of venographic study: XRay-Ultrasound
Diagnosis: Narrowing of the left and right jugular veins no stenosis in IJV
Procedure: Balooning.

Procedure/drug related symptoms: None.

Number of relapses since CCSVI intervention: 0.
Impact on MS symptoms so far:
- Better balance and more stamina
- Less fatiq while walking
- Less swilling in neck area
- Better skin coloring
- More feeling of muscles in the legs

Remaining effects of symptoms:
- Walking unstability still have impact
- Hand balance in going through stairs
- Fatigue and lose of control and pain in knees after walking for 45 minutes
- Bladder improved but still have some impact
- Nerve pains have been limited but some little pain before sleeping in right arm


EDSS 18/11/2010 - 2
FSS 18/11/2010 - 4.66
MSIS 18/11/2010 - 58

Waheed

MS HISTORY
Name:
Male/Female: M
Age: 39
Date(s) & type of neurological diagnosis: RRMS September 2010
Lesion locations: Multiple, mostly left side of brain, none in spine
MS treatments: NONE

MS symptoms before stenosis intervention:
Overall, my symptoms are pretty mild.
Right side:
Cold extremities, muscle cramps in thigh, minor spasticity, numbness
Number of relapses before intervention: 2
Left side:
Some muscle spasms, ear ringing (AAAARRRRRGGGGHHHH!!!!!!!)
Occasional double vision, when tired.

EDSS before CCSVI intervention:
FSS before CCSVI intervention:
MSIS before CCSVI intervention:

Are you using Inclined Bed Therapy I.B.T? Yes, before procedure. Will go back to normal.

Have you had testing for blockage yet: Yes, Doppler US
Found 1.5 of 5 of Zamboni criteria (IR did procedure anyway)

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 11-24-10
Type of venographic study: Venography
Diagnosis: Left jugular 70% blocked, right jugular 40% blocked, Azygous OK

Type of procedure: Balloon venoplasty on left and right jugular
Procedure/drug related symptoms: very mild neck soreness

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words:
Cold extremities reduced, muscle spasms reduced, feeling of 2 halves of body greatly reduced
EDSS as of this update:
FSS as of this update:
MSIS as of this update:

11-24-10: Generally feeling better, but no drastic improvements. Would be hard to have any drastic changes since my symptoms are very mild at this point. Overall, I generally feel better and most symptoms have been reduced. The only symptom that did not change was the ear ringing. Unfortunately, this is my most damn annoying symptom. Hopefully with time, this will diminish as well. I feel

2-21-2011: Still feeling well and symptoms have been slowly dissipating. I don't know if I am recovering from my relapse from before the procedure or if I am recovering due to CCSVI treatment. I was scanned by Dr. Haacke's research team last week. The technicians noted some slow blood flow on the initial look at the scans. I will get the full results soon.

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

MS HISTORY
Male/Female: F
Age: 42
Date(s) & type of neurological diagnosis: May 1998, RRMS
Lesion locations (most affected side, if known), number: about 12
MS treatments: Rebif, 10 years
MS symptoms before stenosis intervention: numbness left hand, off/on numbness in legs and torso, balance problems, vertigo, fatigue, urgency to urinate, tinnitus, restless legs, spasms in feet, brain fog,right hand numb
Number of relapses before intervention (if applicable): 8-10
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 3.5 (physician)
FSS before CCSVI intervention: 4
MSIS before CCSVI intervention: 59
Are you using Inclined Bed Therapy I.B.T? No

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


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Frankfurt, Oct 4-11, 2010
Type of venographic study: (MRV, Doppler): both + venogram
Diagnosis: scans showed possible left IJV blockage high up, possible azygos problem. Venogram: Left IJV stenosed but azygos ok
Type of procedure: Balloon angoiplasty in three places in left IJV (one balloon burst - impressive!)

Procedure/drug related symptoms: Had allergic reaction to something (likely to the contrast but was also given ASA by IV and there are aspirin allergies in my family). Turned beet red and itchy - was given Benadryl.


Number of relapses since first CCSVI intervention: 2
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates): no improvement whatsoever
EDSS as of this update (self-assessed or physician-assessed?) 3.5-4 (physician)
FSS as of this update: 5
MSIS as of this update: 84

Feb 14, 2011 - trying to recover from second relapse since intervention 4 months ago - surprising because I generally have one relapse per 12-18 months and this makes 3 in 7 months. Can barely use hands, very fatigued. EDSS now 5 or 5.5. Frustrating!

CCSVI TRACKING December 19, 2010

MS HISTORY

Kate

50 b. June 22

MS in family : Paternal aunt: d. age 67
Older sister, age 60 b.November 13 less disable than I
Both Vit. D deficit per lab testing

Medical History: survived at least Five ( 5 ) moderate Rear-end MVA , 1 Concussion, ( Yikes ! )
Belle's Palsy 1997, tic bite: Lyme's Negative 1997, 2000
2000 Anti-phospholipid syndrome- 2003- Asa 325 mg, 2009 Plavix 75 mg,
2000 MRI showed 'cerebral Infarct' (hmmm, neuro. Never addressed this)

2000 RRMS
Lesion: initial MRI Brain at least 20 lesions , one in Mid-brain (balance/temp mod.)

MS treatments: Avonex, Rebif, 2003 Neuro:"you're failing all treatments ;( ' - Copaxone 2003-11/8/10

Oct.1010 Low Dose Naltrexate 3.5 mg. Hs. --alleviates MS hug, less spascity, more stable gait, bit more energy, improved mood

MS symptoms before stenosis intervention:
MS Hug, Chronic Fatique, Cog Fog, dim vision, mild bil. nystagmus, headaches: right coronal region-stabbing pain, urinary urgency/ neurogenic bladder, constipation, right foot drop, right/left leg weakness, generalized numbness, esp. of fingetips-can't palpate pulses, mood swings/mild euphoria/ , Heat intolerance, sleep disturbance.
'Tomato Head': feel ext. pressure when bending head forward- red faced
Little or no perspiration, Balance issues / vertigo, Tinnitus bil. r>l

Chronic Lower back pain- hypermobile joints ~ chiropractic x 30 yrs. ?

Number of relapses before intervention (if applicable):
EDSS before CCSVI intervention (self-assessed): 4.5

FSS before CCSVI intervention: 5.0

MSIS before CCSVI intervention: 69

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

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


STENOSIS PROCEDURE HISTORY

Testing: 11/10/10 Doppler US 11/29/10 MRV/MRA Pittsburgh,PA
Dx: Venous compression bil. IJV-possible membranous webbing in Lt. JV
--FOLLOW UP DOPPLER 2/9/11 Pittsburgh...All veins patent, no signs of complications

Date/location of testing/procedure: Dec.27,2010 Pittsburgh
Type of venographic study: (MRV, Doppler) Doppler US, MRV
Diagnosis: Venous stenosis...r/ l IJV
Type of procedure: Venogram/ angioplasty
Procedure/drug related symptoms: Brief significant Pain in Skull upon Rijv ballooning--no further pain thereafter
[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):

1/8/11~Immediate Balance more stable, Left ankle/foot: only slight swelling now, Left hand numbness gone -able to palpate pulses! Increased energy levels, min. spasticity, able to turn Head more easily, able to get out of chair easier, can now do mod. Heel/Toe "Tomato head' is absent, NO Head pressure upon bending forward
...1/14 ---gone is "walking on pebbles' sensation of feet...better able to feel textures: ie satiny comforter with foot! Improved sleeping, awake only twice during night to Void !

MS History

Scotland
M
50

RRMS Diagnosed 1990 age 30

Have used Avonex on a trial for two years, currently take 3 mg LDN only.

Ms symptoms: heat sensitivety, tight legs, cog fog, vertigo, one cloudy eye, numb feet and one numb hand. Bit of an MS hug.
Numerous relapses over the last 20 yeras, symptoms seem to be progressing now.

Current EDSS is 3.5 that was assessed by physician.

I am currently using IBT.

TESTING AND PROCEEDURE

Tested at Barrie vascular imaging, on Aug 30 this year, left jugular
100 % blocked, right 20% blocked, noted as having 5/5 ccsvi criteria.

Proceedure Venogram and Angio.
At Albany on Nov 15 2010, they ballooned both jugulars, as well as azogos.
left now operating at 80% right at 100%, confirmed by ultrasound
the next day, now down to 2/5 criteria, I will continure to be monitored by Barrie. Have appt in three months there.

NUMBER OF RELAPSES ZERO since surgery.

IMPACT ON MS SYMPTOMS

Had better clarity immediately, cog-fog is now gone. Energy and core power is much better, back doing weights and rower and biking.
Any fatigue that I had is gone, left hand no longer numb, feet feel better
but still numb. MS hug is gone. I feel about 2% better every day.
Thanks for the great support TIMS people.
Scotland

update at two months jan 15th 2011
cog fog totally gone, core power is coming back , able to work out for an hour with weights, tight legs are gone, no longer dread how far I have to walk, upper body strength is up about 30%, legs up 15%
ya, this just keeps getting better
xo
scotland

Hi all
six months in and still ok, no new attacks, strenght is good, heat tollerance
is much better. Had a brutal canadian winter but no problems. Feels like
my body is trying to heal itself after 20 years. Able to work longer and harder and push endurance back up as I go. Workouts going well
and after I do one i feel so much better. It is nice to feel a bit of contol
again. You have to be patient, but have faith.
Scotland

CCSVI TRACKING Decemeber 20th 2010

MS HISTORY
Name (if want to give other than TIMS login name): Leetz
Male/Female: Female
Age: 33
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS after about 7-8 years of "them"(the other's) telling me it was Fibromyalgia...Spinal tap Diagnosis July 14th 2008
Lesion locations (most affected side, if known), number: 4 brain 2 along spine
MS treatments: Avonex 2 mos. (dang near killed me felt like)- FDA trial for Campath (kinda held me where I was)...
MS symptoms before stenosis intervention: Left foot drag, cog-fog, bladder dysfunction, NO ENERGY, PAIN, PAIN, PAIN, walking with cane assist(scooter in groc. store/airport wheel-chair etc.), wall walking at home, couldn't stand long, spasticity, purple foot left, no balance, memory/repeat dysfunction, not able to work, cook, or even come close to wearing heel's or dance (

Number of relapses before intervention (if applicable): 4ish
EDSS before CCSVI intervention (self-assessed or physician-assessed?):
5 0r 5.5 not sure (can't remember)- Physician diagnosed.
[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: Yes!

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Albany, Ny
Type of venographic study: Venogram
Diagnosis: 50% RIJV and 30% LIJV
Type of procedure: Ballooning
Procedure/drug related symptoms: Sore neck


Number of relapses since first CCSVI intervention: 000000000
Impact on your MS symptoms in words: Okay, keep in mind, it has only been 6 day's since procedure. Balance is about 55% better and i jumped successfully for the first time in 3 years. Spasticity is well improved about 40%...no instant energy yet! no cog fog lift yet!! Left foot drag still apparent---think this means I need some PT!!!
EDSS as of this update: dunno yet
FSS as of this update:
MSIS as of this update:

***Important to note that Doctor said to base result's month by month rather than day by day!!! ) would do it again IF i need to0...Praise the Lord!!!

_________________
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

CCSVI TRACKING 12/29/2010

MS HISTORY
Name Ann:
Male/Female: F
Age:35

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.

4/21/2011
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.

6/15/2011
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.

_________________
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.

CCSVI TRACKING 1/3/2011

MS HISTORY
Name Crys:
Male/Female: F
Age:53

Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): Diagnosed RRMS Nov. 2005, first symptoms for which I consulted a doctor, tingling of toes and poor balance. Can’t have MRI because of brain aneurysm at age 10 and a metal clip in head; diagnose through spinal tap and symptoms.
Lesion locations (most affected side, if known), number: unknown

MS treatments: Rebif from Nov 2005; symptoms progressively worse, changed to Tysabri Jan. 2008 but seem to be moving from RRMS to more of a progressive course since the beginning. Stopped taking all MS drugs in June of 2010 (saw no difference in anything).

MS symptoms before stenosis intervention:
terrible balance, MS “hug” (I would call it a VISE GRIP”), fine motor control issues in left hand, bladder and bowel problems, some spasticity in feet at night or after repetitive motions, handwriting atrocious, 51 symptoms that I now keep track of...too much to write about here.

Number of relapses before intervention (if applicable): I never “remitted” on anything…simply slowly went downhill on everything.

EDSS before CCSVI intervention physician-assessed: neuro never gave me a number, but I used a wheelchair fulltime and am able to walk with a walker maybe 100 feet.

FSS before CCSVI intervention: again no number, however fatigue is not a huge issue for me (1 hour nap in afternoon).

MSIS before CCSVI intervention: not assessed, no cog issues to speak of

Are you using Inclined Bed Therapy I.B.T? No, but have slept in a reclined position for all 5 years (have adjustable bed).

Have you had testing (and possibly procedure) for blockage yet: TESTED…no. Dr. Arata said that based on my symptoms I definitely would have the deformed valves. So no need to “test” first, he just did the procedure.


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 12/30/2010 Pacific Interventionalists
Type of venographic study: venoplasty
Diagnosis: LIJV 80 % stenosed, he blew apart the valve; blood flow restored to normal, RIJV 80% stenosed; again he blew apart the valve; blood flow restored to normal. Azygous also 80%, now fine.

Type of procedure: venoplasty

Procedure/drug related symptoms: ballooning was unpleasant, felt pressure, some pain then heard the crackling of the valve exploding…then no pain or pressure. He had to blow the azygous vein up twice, I guess it was stubborn. That one hurt the most (but my husband says I’m a wimp so who knows!).

Number of relapses since first CCSVI intervention: only bettering of the 51 symptoms!

Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):

It’s only been 4 days since my Liberation, but 3 of my symptoms have totally gone away. Five have gone from a 5 to a 3 (remember I rated all of them), and about 10 I’m just not sure of yet. Ex. Foot hasn’t involuntarily “jumped” since procedure but that was typically a 3/wk thing that happened. I can stand longer. Stamina is better. Napped the 1st day after proc. but haven’t had to since!!!
I will start physical therapy this week (he said balance takes a lot of muscles and relearning of the body to regain). My MS VISE is gone!! Praise God
EVERYONE SHOULD HAVE THIS DONE.

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


MS HISTORY
Name: Daniel
Male/Female: Male
Age: 28
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): Late 2008 - RRMS
Lesion locations (most affected side, if known), number: 10+ in Brain, 2+ in lower spine
MS treatments: None
MS symptoms before stenosis intervention: Only persistant noticeable symptom is intention tremor in hands
Number of relapses before intervention (if applicable): 2
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 0?
FSS before CCSVI intervention: ?
MSIS before CCSVI intervention: ?
Are you using Inclined Bed Therapy I.B.T? Yes

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

STENOSIS PROCEDURE HISTORY

Date/location of testing: Nov 12, 2010 Barrie, Ontario
Type of venographic study: Doppler
Diagnosis: 5/5 CCSVI criteria met

Date/location of procedure: Jan 9, Albany NY - Performed by Dr. Manish Mehta
Type of procedure: venoplasty - right jugular 80% blocked (treated with 18mm balloon), azygos 60% blocked (treated with.... unsure yet)
Procedure/drug related symptoms: NA

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words: Much more energy, feeling like I'm actually rested after a full night's sleep. Intention tremors are down considerably. Eyes can focus a lot faster on objects -- especially at night time.
EDSS as of this update: TBA
FSS as of this update:: TBA
MSIS as of this update: TBA

EDIT:
Right-jugular restenosed few weeks after the procedure but the azygous has remained patent. Energy levels aren't as good as right after the surgery but intention tremors are still improved from before the surgery. Eyesight seems to be the same as before the surgery.

CCSVI TRACKING

MS HISTORY

Name: Don
Male/Female: M
Age: 53

Date(s) & type of neurological diagnosis : 1979 - RRMS, 2003 - SPMS
Lesion locations (most affected side, if known), number: Brain & Spine
MS treatments: Betaseron, Novantrone, Avonex, Tysabri (3 yrs), for the last year - Copaxone & LDN. Baclofen for leg spasms

MS symptoms before stenosis intervention: Leg weakness (gait), balance, bladder urgency, constipation, leg spasms.

Number of relapses before intervention: Too many to count
EDSS before CCSVI intervention: 6.0 - 6.5 (self-assessed)
Are you using Inclined Bed Therapy I.B.T? Y (Feb. 2011)

Have you had testing for blockage yet: Y

STENOSIS PROCEDURE HISTORY

Date/location of testing: 11/04/2011 / Albany
Type of venographic study: ultrasound
Diagnosis: CCSVI criteria met
Date/Location: 1/10/2011 / Albany - performed by Dr. Mehta

1st Procedure 01/10/2011: Left internal jugular vein catheter placement with venography indicated critical 80% proximal stenoses with severe reflux. This underwent angioplasty using an 18 millimeter balloon. Repeat venography indicated markedly improved flow with less than 20% residual stenoses.
Right internal jugular vein catheter placement with venography indicated 70% stenoses with reflux.
Azygous vein catheter placement with venography indicated critical 70% stenosis with reflux. Underwent angioplasty using a 10 millimeter balloon. Repeat venography indicated improved emptying and minimal stenoses.
Billateral anterior jugular vein catheter placement with venography indicated well developed collateral veins.

2nd Procedure 01/17/2011: Right internal jugular vein catheter placement with venography indicated 60-70% proximal ostial stenoses which underwentangiopasty with a 16 millimeter balloon. Repeat venography indicated markedly improved flow.
Left internal jugular vein selective catherezation with venography, indicated occlusion proximally. This underwent angioplasty using a 16 millimeter balloon. Repeat arteriogram indicated persistent stenoses.
Left external jugular vein with venography, indicated well developed external and anterior jugular venous collaterals with adequate drainage.

I'm on coumadin for 3 months to keep LJ from clotting further and to keep RJ from clotting.

Impact on your MS symptoms in words : After a rough two to three weeks post procedure due to either the image dye they used for venogram imaging or blood thinner side affects, things are starting to get better. Bladder urgency is better during the day and at night. Balance and fatigue is better. Other than that all other symptoms are back to preprocedure. Will update again in another month.

Update 6/13/11 - have had 2 relapses in the past month. Went on a 3 day course of solu-medrol both times.

Update 7/29/11 - Went in for US on 7/12/11 and found out that my LIJV had clotted again, no flow, no wonder I haven't been feeling well. That's probably what caused those 2 relapses. I'm setting up to have another venogram and procedure with Dr. Sclafani in Brooklyn ASAP. Hopefully he'll be able to do something for me, as my health and quality of life has gone down hill for the past couple months.

EDSS as of this update: 6.0 - 6.5 (self-assessed)

FSS as of this update:

MSIS as of this update:

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

MS HISTORY
Name: lm111
Male/Female: Female
Age: 54
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): 6/2008 PPMS
Lesion locations (most affected side, if known), number: none - diffuse damage
MS treatments: Ldn. Steroid Infusions, baclofen (60 mg daily), ampyra (works well)
MS symptoms before stenosis intervention: Slurred speech, choking, cogfog, hands cold, right hand tremor (cannot use at all), incontinence, constipation, wheelchair bound (can walk 25 feet with a walker but difficult), severe spasticity, painful leg spasms when sleeping and waking, feet cold, fatigue
Number of relapses before intervention (if applicable): NA
EDSS before CCSVI intervention (self-assessed or physician-assessed?): self-assessed 7-7.5
[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
[Some patients may wish to start with a baseline report, if Y, continue with next section]

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 10/17/2010 tested 12/17/2010 treated at Albany, Community Care
Type of venographic study: (MRV, Doppler) Doppler
Diagnosis: Stenosis in both Jugulars
Type of procedure: Angioplasty
Procedure/drug related symptoms: None
[Repeat this section if there have been more than one procedure]

Number of relapses since first CCSVI intervention: NA
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates): After 1 month Speech less slurred, choking less, cogfog gone, hands warm, right hand tremor significantly reduced-can write a bit, walking every day but still using wheelchair - was able to walk 80 feet on one day, spasticity slightly less, at times able
to standup with much less trouble, nightly leg spasms gone, feet warm, less fatigue. In general some improvement though as before symptom severity changes daily making assessment difficult.
EDSS as of this update (self-assessed or physician-assessed?) 7.0
FSS as of this update:
MSIS as of this update:

CCSVI TRACKING

First report: 01/23/2011

MS HISTORY

Name: shaydee5

Male/Female: F

Age: 51

Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): June 2006 RRMS

Lesion locations (most affected side, if known), number: One lesion on right side of brain

MS treatments: Tysabri Aug-08 to current. Rebif Aug-06 to Jul-08. Amypra Mar-10 to current. Aminopyridine-4 (4AP) '08 to Mar-10. Naproxen when needed. Tizanidine Dec-06 to current. Ankle-foot orthotic (AFO) on left foot, foot orthotics in both shoes, support braces on both knees, 4-pronged walking cane. Flexor patch twoce daily on both knees for pain.

MS symptoms before stenosis intervention:
Weakness & spasticity in left leg: can't lift left leg off the floor; poor to no balance; gait problems: inability to walk long distances or to climb up or down stairs; numbness & coldness in both feet, esp. right foot; tinnitus; initially had cog-fog, not as pronounced as before diagnosis; some bladder weakness; some problems with memory and words; fatigue due to exertion; severe heat intolerance. Pain in left shoulder; starting to experience some numbness and tingling in left hand. Secondary problems, due to poor walking gait, are pain and arthritis in both knees, esp. the right knee.

Number of relapses before intervention (if applicable): 1

EDSS before CCSVI intervention (self-assessed or physician-assessed?): 6.5 self-assessed. I use a cane at all times. Progressed from a single-pronged to a four-pronged cane.

FSS before CCSVI intervention: 4.7

MSIS before CCSVI intervention: Score is 73 (out of 145). Score 59-87. MS affects me from "A little" to "Moderately". Although there are days when it affects me more than "Moderately".

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

Have you had testing (and possibly procedure) for blockage yet: Consultation with doctor occurred on Feb 11, 2011. Testing for blockage was performed on Mar 7, 2011, which showed mild narrowing in left jugular. Venous angioplasty is scheduled for Apr 12, 2011. Will report back with results after that date.

[Some patients may wish to start with a baseline report, if Y, continue with next section]

Second report: 04/13/2011

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Performed on Apr 12, 2011 at Columbia Presbyterian in New York City.

Type of venographic study: (MRV, Doppler): MRV performed on March 7th.

Diagnosis: The MRV report was determined to be negative, but the doctor didn't use the report to make his decision to perform the procedure. His initial assessment was that there was mild narrowing in the left jugular, and he decided to go forward with the procedure. The left jugular turned out to be much more blocked than what the MRV showed.

Type of procedure: Venous angioplasty

Procedure/drug related symptoms: Venogram located no problems with the azygous vein. There was mild narrowing in the right jugular, which was opened using balloon angioplasty. The left jugular was nearly 100% percent closed. The vein was opened successfully using balloon angioplasty.

MS symptoms after stenosis intervention:
Feet felt warmer immediately after the procedure. Still had stiffness in left leg due to back pain (lying flat for several hours caused severe spasming in both legs).

By the next morning, noticed that I was able to raise my left leg up at the knee while lying in bed, something I haven't been able to do for about a year. Noticed better balance, less fogginess in my head, more stability while walking. Even though my left leg still doesn't lift very high off the ground, I can lift it higher than before, and I don't feel like I'm going to fall over for no reason when I'm standing. This is only one day after the procedure.

There was a considerable amount of pain while the veins were being opened, especially the left one, and I still feel a bit of pain in the area where the left jugular was opened. Nothing major.

I will be taking 81mg of aspirin daily, similar to what people with high blood pressure or those who've had a heart attack take. This is supposed to keep the veins open, and I'll be on this regimen for at least 6 months.