CCSVI tracking project-POST PER P.1 FORMAT ONLY

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

CCSVI Tracking

Postby PatGF » Tue Jan 25, 2011 10:45 am

MS HISTORY
Name: Pat Grace-Farfaglia:
Male/Female: F
Age: 55
Date(s) & type of neurological diagnosis : 05/09/2006 RRMS
Lesion locations (most affected side, if known), number: Lesions vary in size and shape and allocated for the most part peripherally. Also, diffuse areas of T2 hypersensitivity in both cerebral hemispheres. There were no T1 hypertense lesions in 06/20/2010.
MS treatments: Steroids, Cytoxan, Betaseron, and currently taking Capaxone.
MS symptoms before stenosis intervention: Primarily cognitive, visual, hearing, fatigue, and increased rate of infections.
Number of relapses before intervention (if applicable): 3
EDSS before CCSVI intervention (self-assessed): 4.0
FSS before CCSVI intervention: 7.0
MSIS before CCSVI intervention: 50
Are you using Inclined Bed Therapy I.B.T? No
Have you had testing (and possibly procedure) for blockage yet: Yes

STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure: 06/30/2010, BNAC (testing) and 01/07/2011, Albany, Dr. Gary Siskin (procedure)
Type of venographic study: MRV and Doppler
Diagnosis: Fufilled 3 out of 5 parameters, therefore positive for CCSVI.
Type of procedure: Jugular venous ultrasound, Angioplasty Jugulars (R) and Stents (L).
Procedure/drug related symptoms: Stent - thrombus
Number of relapses since first CCSVI intervention: 0 (18 days post-procedure)
Impact on your MS symptoms in words (01/25/2011): I am spontaneously wakeful in the morning, my memory is better, have greater energy, can hear music as more than just noise, seeing more clearly and with greater color perception, and better cold tolerance.
EDSS as of this update (self-assessed) : 4.0
FSS as of this update: 6.2
MSIS as of this update: 41
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Postby Cece » Sun Jan 30, 2011 3:07 pm

CCSVI TRACKING 01/30/2011

MS HISTORY
Name: Cece
Male/Female: F
Age: 35
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): January 2006, RRMS
Lesion locations (most affected side, if known), number: 1 periventricular lesion, 1 possible faded cervical lesion
MS treatments: previously on Copaxone but discontinued in August
MS symptoms before stenosis intervention: primarily severe fatigue, some cogfog, mild foot drop that went away, vision blurring/eye pain/special effects, very occasional numbness of left arm, general feeling of unwellness
Number of relapses before intervention (if applicable): 1 since MS diagnosis, 1 that got me diagnosed, 3 others in retrospect before diagnosis
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 0.25 last assessment – he said I was less than the 0.5 I'd been before but not quite back to 0
FSS before CCSVI intervention: 6.9 self-assessed
MSIS before CCSVI intervention: 61
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: Nov 15th in Minneapolis with Dr. Cumming
Type of venographic study: Doppler ultrasound and MRV
Diagnosis: CCSVI with valve issues in both jugulars as seen by doppler; stenosis in both jugulars seen on MRV and reflux in the azygous shown by the Haacke Protocol MRV
Type of procedure: no procedure yet
Procedure/drug related symptoms:

Date/location of testing: Feb 12th in Brooklyn with Dr. Sclafani
Type of venographic study: Catheter venogram procedure with IVUS (intravascular ultrasound)
Diagnosis: 100% blockage in left IJV by malformed valve at base of neck; 80% blockage in right IJV by fused leaflets in valve at base of neck
Type of procedure: ballooning of stenoses
Procedure/drug related symptoms:
Last edited by Cece on Mon Mar 21, 2011 1:32 pm, edited 1 time in total.
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CCSVI TRACKING

Postby KSA » Mon Feb 07, 2011 10:05 pm

MS HISTORY
Male/Female: F
Age: 37

Date & type of neurological diagnosis: SPMS and I may have had it since pre-teen. Don't recall ever having a relapse. Diagnosed Feb 2008.
Lesion locations, number: Many, spine and brain, both sides.
MS treatments: Never took DMDs. Take 4-AP, wheat-free/dairy-free diet, 5000 Vit. D3, Fish oil, etc.

MS symptoms before stenosis intervention: fatigue, loss of balance, occasional vertigo, word-finding, bladder & bowel, MS hug, insomnia, anxiety, irritability, spasticity in legs (sometimes painful), leg spasms at night, trouble waking in morning, foot drop, weak grip, heavy legs.

EDSS before CCSVI intervention (self-assessed): 6.0 in the morning, 3.5 in the afternoon. I started using a cane every morning and in crowds in February 2010, but rarely ever in the afternoon or evening.
FSS before CCSVI intervention: 5.2
MSIS before CCSVI intervention: 110
Are you using Inclined Bed Therapy I.B.T? N
Have you had testing for blockage yet: Y

STENOSIS PROCEDURE HISTORY
Date/location of testing: 09/07/2010, False Creek, Vancouver
Type of venographic study: MRV and Doppler
Diagnosis:
MRV: severe stenosis of lower left jugular, stenosis of lower and upper right jugular, azygous appears to have non-uniform shape. NOTES: Azygous was unclear in MRV due to movement. Blood flow analysis didn't work because synchronization to pulse was off.
Doppler: normal flow on right side, turbulence and flutter on the left side.

Type of procedure: Valvuloplasty of both jugulars and azygous, 02/11/2011, Costa Mesa
Procedure/drug related symptoms: Exhaustion from procedure/travel took days to get over. Mild soreness, especially in azygous.
Number of relapses since first CCSVI intervention: N/A

Impact on your MS symptoms in words:
(02/25/2011) Balance and mood have been the most dramatic improvements. I feel great in the morning. I don't use a cane anymore ever. Sleeping through the night. Leg spasms are gone. Bladder did not improve. Tried to go off 4-AP for a few days, but fatigue was awful so I went back on a half dose and feel great again.

(03/09/2011) Balance improvements lasted only 2 weeks. Zamboni-protocol ultrasound of jugulars shows no restenosis.

(5/15/2011) 3 months after treatment, I'm still not using my cane. I sleep better than I have in my life and I dream! Leg spasms are much better and never wake me up anymore. Still get fatigued. Mood is dramatically better.

(7/11/2011) 5 months after treatment. Still sleeping well, realized severe motion sickness I've had my whole life has been gone since the procedure. Back on full dose of 4-AP. Fatigue and balance are pretty bad.

(8/1/2011) I had to start using a cane again, in the mornings and in crowds.

(9/30/2011) Sleep has deteriorated. Mornings are back to pre-procedure levels: extremely stiff legs, hanging onto furniture and walls. Balance and fatigue are back to pre-procedure levels. Not remembering dreams anymore. Motion sickness is still gone. Mood is still better. Another Zamboni-protocol ultrasound of jugulars shows no restenosis. I'm going to get a CAT scan next.

(8/10/2012) After CAT scan, tried upper cervical chiropractic at CCSVI doctor's suggestion. No improvements; probably still progressing. The fact remains: I used a cane for one year, and after venoplasty I didn't use a cane again for 5 months. Good luck to all!
Last edited by KSA on Thu Nov 01, 2012 1:33 pm, edited 14 times in total.
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Postby he1en » Mon Feb 14, 2011 12:48 pm

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

MS HISTORY
Name : Helen
Male/Female: (F)
Age: 44
Date(s) & type of neurological diagnosis :12/22/2006. Clinically Isolated Syndrome. MRI was consistent with MS. Did not return to doctor for a confirmed diagnosis as will affect work

MS treatments: Diet only. Tried LDN but made me worse.

MS symptoms before stenosis intervention: bladder urgency and frequency.
Able to walk only 5 mins or on good day 10 mins. Balance worse in 2010.
2007: optic neuritis which lasted 6 months
Number of relapses before intervention : 2

EDSS before CCSVI intervention (self-assessed ): 6

FSS before CCSVI intervention: 3.5

MSIS before CCSVI intervention: 63

Are you using Inclined Bed Therapy I.B.T? Yes

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


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 01/16/2011
Egypt.
Type of venographic study: Doppler
Diagnosis: Reflux on right and left jugular and faulty valve.
Type of procedure: angioplasty of both jugulars and also azygous veins. Balloon only no stents.
Procedure/drug related symptoms: Painful during procedure when ballons were inflated.
[
Number of relapses since first CCSVI intervention: 1 -due to food poisoning
Impact on your MS symptoms in words : No change in my symptoms. May be this was due to the relapse I suffered as a result of food poisoning, I don't know.

EDSS as of this update (self-assessed ) 6
FSS as of this update: 3.5
MSIS as of this update:63
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Postby bigfoot14 » Wed Mar 02, 2011 7:23 am

Posted for my wife

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

MS HISTORY
Name Susan
Male/Female: F
Age: 56

Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): Dx 1988 RRMS moved to SPMS 2009

Lesion locations (most affected side, if known), number: mostly cervical with a few in the brain

MS treatments: Betaseron for about 1 1/2 years when first introduced, then copaxone for about a year..no DMD's since at least 1997

MS symptoms before stenosis intervention: Cog-fog, balance issuse, urinary retention, nerve pain (Dx of fibro 2006), leg spasticity, vertigo, & fatigue
Number of relapses before intervention (if applicable): 4-5

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) N

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


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Procedure done 2/23/2011
Type of venographic study: (MRV, Doppler) None, Dr felt it is a waste of money and time. He would have ordered the tests if we wanted

Diagnosis: Left jugular 70% blocked, right Jugular 50% blocked, azygos 40% blocked

Type of procedure: Balloon veinography (no stents)

Procedure/drug related symptoms: Sore neck from procedure,
Susan had lots of issues with the lovenox, many of the side effects are/were similar to MS symptoms

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words: headaches are less frequent and less severe, spasticity is reduced, sleeping better, nerve pain is reduced,
we are waiting for the lovenox to clear her system to see if any other symptoms clear up

Added 3/16/2011
Susan is doing very well, the improvements really started to show up after the lovenox (blood thinner) cleared her system....
her balance is much better...she now walks up & down the stairs without holding on to the wall or railing for balance
She drove for the first time in 5 years yesterday...
she is not having headaches as much, becoming less frequent and less severe all the time



EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
Last edited by bigfoot14 on Wed Mar 16, 2011 9:24 am, edited 1 time in total.
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Postby MaggieMae » Tue Mar 15, 2011 10:09 am

CCSVI TRACKING 03/15/2011

MS HISTORY
Name William
Male/Female: M
Age: 61
Date(s) & type of neurological diagnosis: RRMS 1974-1995, SPMS to present
Lesion locations (most affected side, if known), number: Not known
MS treatments: ACTH, prednisone, Methotrexate, Betaseron, Tysabri, Gilenya since Sept 2011
MS symptoms before stenosis intervention: Symptoms in early years were ON, weakness in legs, arm pain and weakness which seemed controlled by meds. Since the 1990’s main issue is decline in ability to walk, leg spasms, pain, use wheelchair for any distance, numbness in feet and legs, recently bladder issues
Number of relapses before intervention (if applicable):
EDSS before CCSVI intervention: self-assessed 6.5
[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: 74
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? (Y/N) Tried it – not using now
Have you had testing (and possibly procedure) for blockage yet: N

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: w/Dr. Sclafani -Testing 3/31, 2011 – Procedure 4/1/2011
Type of venographic study: (MRV, Doppler)
Diagnosis: Ultrasound showed flow problems in both IJ veins
Type of procedure: Venoplasty of both IJ veins
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): April 4th - Reduction in left side back pain after 15 years. Less numbness in feet and legs. No longer feel like walking on balls. Feet not cold. May 4th - Continue with same improvements that were initially noticed. June 4th - Continues with same improvements that were initially noticed. July 4th - Continues with same improvements that were initially achieved from procedure. Nov 30th - Continues with same improvements. Limited ability to walk hasn't improved but has not gotten worse. In Sept started Gilenya instead of Tysabri. Main difference when Tysabri was discontinued was fatigue increased and decreased when Gilenya started. No changes (positive or negative) noticed in improvements received from CCSVI procedure when Tysabri stopped or Gilenya started.
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:[/b]
Last edited by MaggieMae on Wed Nov 30, 2011 1:16 am, edited 7 times in total.
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CCSVI TRACKING - 19/03/2011

Postby ajpickers » Sat Mar 19, 2011 9:09 am

MS HISTORY
Name: Mr A
Male/Female: M
Age: 37
Date(s) & type of neurological diagnosis : SPMS
Lesion locations (most affected side, if known), number: Unknown
MS treatments: baclofen, Oxybutynin
MS symptoms before stenosis intervention: Walking issues primarily, staggering gait, spasticity in both legs, spasms, weakness. Tinnitus. Bladder urgency. Cog fog. Fatigue.
Number of relapses before intervention: 3. First in 1995 (numb arm), second in 2001 (optic nuritis dx RRMS), third and last (and worst, affecting legs) in 2006. dx SPMS in 2009.
EDSS before CCSVI intervention: EDSS 6.0 (Physician-assessed):
FSS before CCSVI intervention: unknown
MSIS before CCSVI intervention: unknown
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: Glasgow, UK
Type of venographic study: Doppler
Diagnosis:

Entire left jugular vein appears significantly narrow and severely stenosed in the mid segment measuring 0.42mm in the supine and erect position with evidence of reflux. The valve appears malformed.

The right internal jugular demonsrtates normal retrograde flow. No evidence of reflux, however the valve appears malformed.
Appearances are consitent with CCSVI.

Type of procedure: Doppler ultrasound scan.
Procedure/drug related symptoms: None

Number of relapses since first CCSVI intervention: n/a procedure is on the 29th March 2011
Impact on your MS symptoms in words :
EDSS as of this update: 6.0
FSS as of this update: unknown
MSIS as of this update: unknown

OK, I'm somewhat overdue with my follow up but here's my update. Better late than never ':oops:'
It's been 4 months since I had the procedure in Edinburgh, the surgeon found that the Azygos had some narrowing and this was ballooned. The Right IJV, whilst showing no sign of stenosis via Doppler, did show some narrowing during the procedure - this also was ballooned. The Left IJV was, as the doppler showed, extremely stenosed, so much so that the surgeon was unable to insert a catheter! Subsequently, this vein remains stenosed. I appreciated the cautious approach by the surgeon who did not want to risk rupturing the vein by trying too hard. He did explain that I ought not be too disappointed as he felt that a few issues were corrected and I should see some improvements.

My improvements, which have held, are much less fatigue, much less cog fog/much more mental energy ( I am now able to happily hold conversations for a few hours without the need to isolate myself/ sleep after 10 minutes, due to fatigue). My feet are no longer blue and ice cold, but pink and warm. They are still a little numb however.

My walking has not improved and I remain reliant on the use of a crutch indoors and a wheelchair outdoors. Balance is still terrible.

Post procedure meds = 75mg Aspirin, 1Xdaily for 6 months
current EDSS = 6.5 (physician assessed)

I wonder what effects a successful venoplasty of my left IJV would bring and whether anyone else has had such a narrow vein that the intervention could not be performed. I think the only option available would be a vein graft, but at this time I think the risk outweighs the (potential) benefits.

6 month follow up not long away and I'll post an update following.
Last edited by ajpickers on Fri Jul 29, 2011 2:33 pm, edited 2 times in total.
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Postby soapdiva884 » Mon Mar 21, 2011 1:20 pm

MS HISTORY
Name (if want to give other than TIMS login name): John
Male/Female: (M/F) Male
Age: 45
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS dxd: 6-6-06
Lesion locations (most affected side, if known), number: Brain and spine-right side weaker than left
MS treatments: Rebif x 2 years.......Tysabri presently x 2 + years
MS symptoms before stenosis intervention: Severe fatigue, mood swings, unbalanced gait, decreased appetite, lost use of right dominant hand, losing use of left non dominant hand, extreme foot drop bilateral, inability to sleep through the night, cognitive issues, short term and long term memory loss, swallowing difficulties, extreme cold hands and feet, purple feet with swelling, inability to climb stairs, unable to walk without cane for more than 5 feet, constant pain throughout body, optic neuritis on occassion
Number of relapses before intervention (if applicable): Really don't have relapses, just a steady decline.
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 6.5 per physician
FSS before CCSVI intervention: 7
MSIS before CCSVI intervention: 102
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: 11-13-10 Brooklyn NYC Dr. Sclafani---03-07-11 Brooklyn NYC Dr. Sclafani
Type of venographic study: (MRV, Doppler) Doppler and MRV
Diagnosis: Stenosis of right and left jugular veins
Type of procedure: CCSVI--ballooning of the jugular veins in seperate procedures
Procedure/drug related symptoms: Sore neck
*jugular vein clotted from first procedure, unable to break through clot in second procedure*
Number of relapses since first CCSVI intervention: none, there is no relapsing with my MS
Impact on your MS symptoms in words : November procedure produced: no more fatigue, no more cog fog, warmer hands, less moodiness, swallowing was better--within 6 weeks these issues were back and worse. (formed thrombosis)
March procedure produced: Just feel good inside, no outward results as of yet.
EDSS as of this update (self-assessed or physician-assessed?) 6.5 per myself
FSS as of this update: 7
MSIS as of this update: 102

* will continue to update this *
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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My CCSVI Tracking

Postby cmozena » Thu Apr 14, 2011 9:05 am

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 thigh 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 ballooning
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. Prior to azygos ballooning, significant reflux of blood into spinal fluid. Wonder if this accounts for the large number of lesions on my spinal cord? 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 ballooned.
[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!
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Postby kcj1963 » Sun Apr 17, 2011 7:47 pm

MS HISTORY
Name: keith j
Male/Female: M
Age: 47
Date: RRMS 12/14/10
Lesion locations: cerebellum
MS treatments: Copaxone
MS symptoms before stenosis intervention: dizziness, depression, fatigue, left-sided weakness/numbness, balance issues, bladder and bowel urgency, tinnitus, sinusitis, muscle twitching, and cognitive difficulty
Number of relapses before intervention: 1
EDSS before CCSVI intervention: self-assessed- 5.0
FSS before CCSVI intervention: 4.5
MSIS before CCSVI intervention: 54
Are you using Inclined Bed Therapy I.B.T?: N
Have you had procedure for blockage yet: Y

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 04/12/11/VAC, Tukwila, Wa.
Type of venographic study: none
Diagnosis: none
Type of procedure: venous angioplasty
Procedure/drug related symptoms: sore throat/groggy and slight nausea
Number of relapses since first CCSVI intervention:0
Impact on your MS symptoms in words: 5 days post: energy, fatigue, balance, tinnitus, and sinusitis have improved.. dizziness, weakness/numbing unchanged..
EDSS as of this update, self-assessed 4.0
FSS as of this update: 3.5
MSIS as of this update:44
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Postby dianabee » Sun Jun 12, 2011 6:38 am

CCSVI tracking 06/09/2011

MS HISTORY
Name (if want to give other than TIMS login name): dianabee
Male/Female: (M/F) F
Age: 55
Date(s) & type of neurological diagnosis RRMS
Lesion locations (most affected side, if known), number: 25+, cortical, subcortical
MS treatments: Copaxone Rebif
MS symptoms before stenosis intervention: cognitive disabilities, fatigue, balance
Number of relapses before intervention (if applicable): 1
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 5.5
FSS before CCSVI intervention: 6.5
MSIS before CCSVI intervention: 89
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: 6/9/11
Type of venographic study: (MRV, Doppler) Doppler
Diagnosis: CcSvi both jugulars
Type of procedure: venogram/balloon angio, both ijv's
Procedure/drug related symptoms: complications: fever and severe headache 24-48 hours post-op; swollen lymph node, swelling/tenderness on right side of neck 72 hours post-op. Left msg for doctor.

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:
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Postby Mathd » Wed Jul 06, 2011 5:14 am

CCSVI TRACKING

MS HISTORY
Name: Mathieu
Male/Female: (M)
Age: 31
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): PPMS 02-18-2010
Lesion locations (most affected side, if known), number: 2, but very tiny
MS treatments: ppms, no treatments
MS symptoms before stenosis intervention: Leg weakness and numbness, spasticity, strong headaches,fatigue, bladder problem
Number of relapses before intervention (if applicable): not applicable
EDSS before CCSVI intervention (self-assessed or physician-assessed?):
5.5 physician-assessed
FSS before CCSVI intervention: -
MSIS before CCSVI intervention: -
Are you using Inclined Bed Therapy I.B.T? (N)


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 04-29-2011, Newyork with Dr Sclafani
Type of venographic study: (Doppler, IVUS, )
Diagnosis: Left jugular blocked, Valve problem, Azygos Blocked, valveproblem too... left comon illiac blocked, septum
Type of procedure: Angioplasty, no stents
Procedure/drug related symptoms: non

Number of relapses since first CCSVI intervention: not applicable

Impact on your MS symptoms in words :
no more fatigue, no more headaches, more strengh in my legs, less numbness, regain control of my toes, less spasticity in my legs, lower heat intolerance but still there

restarted a "more normal" life, restarted whitewater kakaking,

EDSS as of this update 4 physician-assessed
FSS as of this update: -
MSIS as of this update:-
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Mathd
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Postby stathis » Sun Jul 17, 2011 2:11 am

CCSVI TRACKING

MS HISTORY

Male/Female: M
Age: 32
Date(s) & type of neurological diagnosis: 2004 with RRMS

MS treatments: Betaferon (2 years), Tysabri (5 months), Copaxone (1.5 years). Currently no treatment
MS symptoms before stenosis intervention:
Vertigo, fatigue, brainfog, intense headaches, feet numbness, heat intolerance, tinnitus, restless leg syndrome, Lhermitte's sign.

Number of relapses before intervention: 6 relapses
EDSS before CCSVI intervention (self-assessed): 3
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: 6th of October 2010 in Greece, Athens, Ygeia Hospital
Type of venographic study: Doppler, MRV, Venography
Diagnosis: Doppler (Fulfill 3 criterias of Zamboni protocol), MRV (indication of left jugular vein stenosis), Venography (70% stenosis of left jugular vein).

Type of procedure: Angioplasty

70% left jugular stenosis
Image

Left jugular angioplasty
Image

Left jugular flow successfully restored
Image

Procedure related symptoms:
Was given no drugs after procedure. Slight pain at entry for venography (groin), Slight pain at point of angioplasty (left jugular stenosis balloon inflation) for about 1 month.

Number of relapses since first CCSVI intervention: 0

Impact on your MS symptoms in words:

After angioplasty
Immediate positive impact on fatigue, brainfog and restless leg syndrome symptoms. Better sleep. No signs of vertigo or headaches anymore as well as left ear tinnitus. Numbness on feet remains as well as right ear tinnitus.
EDSS as of this update (self-assessed): 2.5

3 months after (07/01/2011):
Boosted energy levels. Fatigue, brainfog, headaches and restless leg syndrome symptoms still non-existant. Daily life near normal. Sports activities near normal. Numbness on feet remains as well as right ear tinnitus. Heat tolerance excellent.
EDSS as of this update (self-assessed): 2.5

9 months after (07/07/2011):
Energy levels still very high. Very active and low Fatigue, Slight Heat intolerance impact on numbness and Lhermitte's sign. Brainfog symptoms are starting to creep in again. Slight restless leg syndrome.
EDSS as of this update (self-assessed): 2.5
Last edited by stathis on Wed Mar 20, 2013 3:45 am, edited 1 time in total.
an action brings..... a reaction !
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stathis
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Re: CCSVI tracking project-POST PER P.1 FORMAT ONLY

Postby artemis » Tue Mar 19, 2013 3:17 pm

MS HISTORY
Birth Year: 1989
Date & type of neurological diagnosis: Diagnosed RRMS October 2011
MS treatments: Dietary Supplements
Lesion locations: Several visible MRI Plaques, no neck or chest plaques.

MS symptoms before CCSVI intervention:
Fatigue on both legs,
tendonitis pain in both arms, linked to fatigue as well,
brain fog,
Cold hands and feet.
Occasional numbness in both my arms, in the bottom part of my left leg and my right cheek.

Number of relapses before intervention: 2 relapses. Severe inflammation on both arms (tendonitis), optic neuritis in left eye.

EDSS before CCSVI intervention (self-assessed): 3

Are you using Inclined Bed Therapy I.B.T? N

STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure: May 2012 in Greece, Athens in Mediterraneo Hospital http://www.ccsviathens.com/

Color Doppler Ultrasound Study
Doppler ultrasound showed stenosis in the left and right jugular. The biggest problem appeared on the left. Possible reflux in the azygos vein. Conclusion: More than two criteria of Zamboni protocol fulfilled.

Venography Study
Venography study showed severe stenosis in the azygos vein. One stenosis in the left jugular and two on the right jugular vein.

Type of procedure: Balloon Angioplasty in Azygos and Jugular Veins using special distending catheters (balloon) 10x40 mm.


Procedure related symptoms: None (0).

Post procedure therapy: Salospir 100mg, once a day for 3 months.

Number of relapses since first CCSVI intervention: None (0).

Impact on your MS symptoms in words:

1 week after procedure: Can’t tell a difference, my limbs still feel cold.

2 weeks after procedure: My Fatigue has greatly reduced. Feel more capable and energetic during the day.

1 month after procedure: Fatigue levels still decreasing. My memory skills have greatly improved.

2 months after procedure: Fatigue non-existent. My hands aren't so cold anymore.
EDSS (self-assessed): 2.5

10 months after procedure: EDSS (self-assessed): 1.5
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