CCSVI tracking project-POST PER P.1 FORMAT ONLY

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

Re: CCSVI tracking project-POST PER P.1 FORMAT ONLY

Postby estrelinha » Wed Jun 16, 2010 11:41 am

MS HISTORY
Name Chris
Male/Female: M
Age: 30
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RR 2003 (first symptoms in 2002)
Lesion locations (most affected side, if known), number: don't know

MS treatments: 7years without any treatment, Avonex since December 2009 (6 months), sport 3 times/week
MS symptoms before stenosis intervention: Fatigue, balance issues, cold intolerance, walking issues (particularly when tired)

Number of relapses before intervention : physicians declared 6 relapses... I would say 3 "true" relapses

EDSS before CCSVI intervention (self-assessed or physician-assessed?): 2,5 (physician-assessed)
FSS before CCSVI intervention:

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

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: June 14, 2010 Paris
Type of venographic study: (MRV, Doppler) both

Diagnosis: Nothing wrong with jugular veins, just a little difference between right and left flows (not pathological). The azygos vein has not been investigated because, according to the physician, the azygos can not suffer from stenosis if the jugulars are normal.

END...

Type of procedure:

Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words

EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:[/quote]
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Liberation Treatment in CA

Postby val57gal » Wed Jun 16, 2010 10:16 pm

MS HISTORY
Name: Valerie
Male/Female: F
Age: 49
Date(s) & type of neurological diagnosis: 2001, PPMS
Lesion locations (most affected side, if known), number: All on spinal cord
MS treatments: None
MS symptoms before stenosis intervention: Balance, walking, weakness in hands and arms, bladder control. Use rolling walker for short distances; transport chair for long.
Number of relapses before intervention (if applicable): N/A
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 6.5 self-assessed
FSS before CCSVI intervention: 2 self-assessed (no fatigue, no brain fog)
MSIS before CCSVI intervention: 91
Are you using Inclined Bed Therapy I.B.T? No

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

STENOSIS PROCEDURE HISTORY

FIRST PROCEDURE
Date/location of testing/procedure: 05/05/2010
Type of venographic study: MRV (paid for myself)
Diagnosis: Blockage in right jugular

Date/location of testing/procedure: 06/02/2010
Type of procedure: Venogram with IVUS/angioplasty/liberation treatment (Covered by insurance based on medical need shown by MRV). Went in from right side. Found and ballooned blockage in both jugulars. Found blockage in all veins examined but couldn’t treat due to curve of vein (azygous) or bone obstruction (sub-clavian).

Number of relapses since first CCSVI intervention: N/A
Impact on your MS symptoms in words: None so far; waiting to see if progression has stopped

SECOND PROCEDURE
Date/location of testing: 06/23/2010
Type of venographic study: MRV pelvis
Diagnosis: Abnormal/possible May-Thurner

Date/location of testing/procedure: 08/25/2010
Type of procedure: Venogram with IVUS/angioplasty/liberation treatment. Went in from left. Found no MT but left ascending lumbar vein missing; instead, a "lacy network" of tiny veins. Possible reflux in ovarian vein not addressed. Found significant blockages in azygous; ballooned. Went in from right side, found both IJVs restenosed; ballooned (up to 20mm on right side).
Number of relapses since first CCSVI intervention: N/A
Impact on your MS symptoms in words: Swelling in ankles & feet much reduced; feet lighter so it's easier to go up a step, climb into bed, etc. Bladder control improved; urgency remains but occurs about 50% as often. Stiffness on awaking much reduced. Standing stamina improved.

Both venograms performed by Michael Arata MD of Newport Beach/Costa Mesa, CA. Dr. Arata has given me explicit permission to post his name here.

3-MONTH UPDATE
Dec 1, 2010
All improvements holding; bladder control actually continues to improve. Neck/veins ache on occasion.
Last edited by val57gal on Wed Dec 01, 2010 9:11 am, edited 2 times in total.
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Negative

Postby pklittle » Thu Jun 17, 2010 5:37 am

CCSVI TRACKING 06/14/2010

MS HISTORY
Name: Pam
Male/Female: (M/F) F
Age: 55
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): 2005 RRMS, 2008 SPMS
Lesion locations (most affected side, if known), number: brain, spinal chord
MS treatments: Betaseron, discontinued 2008
MS symptoms before stenosis intervention: Fatigue, poor balance, bladder control issues, leg pain, cog fog, numbness and tingling, weakness
Number of relapses before intervention (if applicable): many
EDSS before CCSVI intervention (self-assessed or physician-assessed?): self 5.5- 6
FSS before CCSVI intervention: 4.5
MSIS before CCSVI intervention: 87
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: June 14, 2010 Albany, New York
Type of venographic study: Venogram on 06/14/2010, ultrasound on 06/15/2010
Diagnosis: 1 small stenosis in right jugular, 1 small and 1 large stenosis in left jugular, azygous no blockages
Type of procedure: Angioplasty
Procedure/drug related symptoms:

Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):

As of 06/17/2010 No positive impact on MS symptoms

EDSS as of this update no change
FSS as of this update: no change
MSIS as of this update: no change

===========

As of 08/21/2010 Still no positive impact on MS symptoms. For the past 2 weeks, I have been feeling worse with more leg numbness, left hand numbness. lots of burning pain in the legs. Walking is more limited and I tire more quickly. Sometimes I now am using a walker around the house rather than nothing or a cane.


==============================


*UPDATE*
8/27/2010
Consulted and tested by a LOCAL FSIR (yeah!) on 8/24/2010. He did a great job using venogram to check my lower veins for MT and also the IJR, vena cava (don't know all the names). They entered from both sides. All was flowing great except for my left IJR which is a whole mess of collateral veins that he couldn't get the catheter by to check any further up or do angio. They provided me with a DVD of the entire test and written report as well.
The sad part is, nothing can be done. I guess I'm done. CCSVI got me.


*********************************************

*UPDATE*
9/25/2010

I have learned that my second venogram report is INCORRECT. The doctor was in the WRONG VEIN... thought he was in the left IJV when in fact he was in a smaller vein next to it. Sooooo, my left jug is not as messed up as I have been thinking it was for about a month.

*********************************************

*UPDATE*
11/25/11

2nd procedure with Dr. Sclafani on Sept 2nd, 2011. At that time DrS ballooned my azygous and right jugular. He attempted a rendevous on my occluded left jug. I was found to have the nutcracker syndrome and he stented that.
I then experienced more core strength for a few weeks and was quite hopeful. However I lost that and am as I was. I am going to have my first followup soon.
Last edited by pklittle on Sat Nov 26, 2011 10:34 pm, edited 4 times in total.
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Postby joge » Sun Jun 20, 2010 10:42 pm

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

MS HISTORY
Name JOGE
Male/Female: M
Age: 46
Date(s) & type of neurological diagnosis: PPMS since 2005
Lesion locations (most affected side, if known), number:
MS treatments: no. I use Prozac and Symvastatine

MS symptoms before stenosis intervention: TIRED, TIRED, bad walking, left hand had no power, eye problems, tinnitus, etc.

Number of relapses before intervention (if applicable): one, dec 2009 I started to get worse

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? No

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


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Dusseldorf, Germany, may 2010
Type of venographic study: MRV & Doppler/duplex
Diagnosis: stenosis 50% right IJV

Type of procedure: Ballooning in Aalst, Belgium, left & right IJV, 89-90% stenosis, june 17, 2010
Procedure/drug related symptoms:

Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):

june, 21, 2010
Less tired
Better, deeper sleeping
Better walking (straight)
Stronger left foot
Stronger left hand (eating with fork is possible again, playing piano is improving)
Picking up things is easier
Walking up en down the stairs is easier
I'm feeling better mentally, beacause of this, and I'm better company
My wife is happy!

august, 17, 2010
No change, getting used to the new feeling! Working hard with my phisiotherapist to further improve muscles etc. Started working again, part time to begin with.

EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
Last edited by joge on Tue Aug 17, 2010 5:02 am, edited 1 time in total.
I'm ready, I'm ready !
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Postby zahmeds » Thu Jun 24, 2010 5:03 am

i think its collapsed

MS HISTORY
Name (if want to give other than TIMS login name):
Male/Female: M
Age: 29
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): SPMS
Lesion locations (most affected side, if known), number:
MS treatments: copaxone, avonex, LDN in that chronological order

MS symptoms before stenosis intervention: hesitanc,y right leg weakness, right foot drop, right hand tremor, head titillation, lak of balance, upgoing nystagmus, right optic neuritis, occassional diplopia, cant write, cant typ, cant walk, cant stand
Number of relapses before intervention (if applicable): ?10
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: Y

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Max Hosp, New Delhi
Type of venographic study: MRV, Doppler
Diagnosis: Diagnosed on imiating procedur - Left IJV narrowing approx 50% with abnormal back floow
Type of procedure: Digital subtracion angioplasty
Procedure/drug related symptoms:
pain at point of of procedure - right ggroin

Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates): I can urinate freely. Nothing else - yet
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 WheelieBob » Thu Jun 24, 2010 5:50 pm

CCSVI TRACKING [Please use date format MM/DD/YYYY]
Mrs. Wheelie (caregiver), posting for WheelieBob
MS HISTORY
Name (if want to give other than TIMS login name): Bob
Male/Female: (M/F) M
Age: 51
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS 1994 SPMS 2006
Lesion locations (most affected side, if known), number: unknown
MS treatments: Avonex until about a month ago, waiting for approval for Copaxane,(not sure if he is going to go on it before having procedure done) baclofen, alertec, Citalopram, Senna, stool softeners, Vitamin D 4000 IU, Vitamin C
MS symptoms before stenosis intervention: Numbness from mid-chest down including arms and hands; weakness on left side worse than right, bladder and bowel issues, drop foot on left, fatigue, mobility significantly impaired.
Number of relapses before intervention (if applicable): 10
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 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: 119
[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) 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: Sept 12/10 Dr. Kostecki Poland
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:
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CCSVI Liberated in Lisbon, Portugal - Miguel

Postby mike70 » Tue Jun 29, 2010 6:40 am

MS HISTORY
Name: Miguel
Male/Female: M
Age: 40
Date(s) & type of neurological diagnosis : RRMS

Lesion location: Right side most affected

MS treatments: Rebif 22 (January 2000), Rebif 44 (November 2004), Sirdalud MR, Botulinum toxin (on legs)

MS symptoms before stenosis intervention: spasticity, extreme fatigue, blurred vision when tired, slightly blurred vision, double vision (on one occasion, during two weeks), ringing in the ears, numbness in the limbs (excluding the left hand), lack of balance, very rarely brain fog, drop foot, occasional pain in the shoulders , urinary urgency. My fatigue does not give me sleep and I only sleep around 5 to 6 hours each day, no naps. Tremors when very tired. In cold weather, ice cold hands and feet.


Number of relapses before intervention : January 95, March 98, October 99, September 00, November 01, 3 in 2004, January 06, April 08, May 09, May 10

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: June 24, 2010, Hospital Saint Louis, Lisbon, Portugal
By Prof Martins Pisco - http://martinspisco.hslouis.pt/en/
Type of venographic study: Doppler(couldn't see a lot) and Venography
Diagnosis: Both jugulars and azygos with stenosis,
Type of procedure: Ballooning on the azygos and left jugular. Stent on the right.
Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words:
June 24, 2010: Improved balance, less fatigue
June 28, 2010: Even more balance, fatigue is gone, climb stairs more easily, improved handwriting
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Postby colmmc » Tue Jun 29, 2010 12:42 pm

CCSVI TRACKING 06/29/2010

MS HISTORY
Name Colm
Male: male
Age:47
Date(s) & type of neurological diagnosis PPMS
Lesion locations Dalton's Fingers
MS treatments: LDN
MS symptoms before Foot drop, Fatigue,frequency,Heat intolerance, Memory issues,Left hand curled in a fist when at rest. Regular stomach issues,
Number of relapses before intervention N/A
EDSS before CCSVI intervention (self-assessed Not sure

FSS before CCSVI intervention:6

MSIS before CCSVI intervention:
[To calculate MSIS rating 91, click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? (Yes)

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


STENOSIS PROCEDURE HISTORY

24/06/2010 Euro medic Poland
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:N/A
Impact on your MS symptoms in words Day 1 Eye sight improved before I didn't even know it was a problem, Warm feet. Left Hand stopped curling up into a fist.Day2 Fatigue seems to have gone, Heat intolerance improved so I can take a shower without needing to lie down afterwards.Balance improving,Walking getting better.
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 Vee1012 » Wed Jun 30, 2010 6:02 am

CCSVI TRACKING [Please use date format 06/25/2010]
Vee
MS HISTORY
Name (if want to give other than TIMS login name): Verity
Male/Female: (M/F) F
Age: 31
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS I think, diagnosed 2004
Lesion locations (most affected side, if known), number: unknown but quite a few dotted around and one large one.
MS treatments: Avonex and Copazone in 2005 but stopped because of side effects. Have gluten and dairy free diet and have homeopathic and herbal medicine.
MS symptoms before stenosis intervention: bladder and bowel issues, drop foot on right when tired, fatigue(cant keep eyes open) burning in legs, mild swallowing and speech issues. Brain fog. Balance is terrible.
Number of relapses before interventi on (if applicable): Dont know but worse since February 2009
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 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: 119
[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
[Some patients may wish to start with a baseline report, if Y, continue with next section]

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: May Venogram in Frankfurt with Dr Vogl
Type of venographic study: (MRV, Doppler)
Diagnosis: Right jugular partially blocked
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):
Feet warmer, eyesight improved, hearing improved. Brain fog is better.
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Postby JoyIsMyStrength » Sat Jul 03, 2010 5:34 am

MS HISTORY
Name: Pam
Male/Female: F
Age: 51
Date(s) & type of neurological diagnosis:
Diagnosed 4/99 RRMS
Probably SPMS now
Lesion locations (most affected side, if known), number: 16 brain lesions plus 1 brainstem, 2 large spinal lesions at C1-C4, lumbar unknown
MS treatments: Copaxone x3 years, Betaseron x2 years, LDN x6 months (discontinued), gluten-free diet x6 months (discontinued), Swank MS Diet x1.5 years, vitamins, supplements, Neurontin. Currently not on any DMD.
MS symptoms before stenosis intervention:
- Severe fatigue
- Severe numbness in fingers, both hands
- Bilateral weakness in arms and legs
- Spasticity
- Myoclonic spasms
- Bilateral foot drop
- Severe constipation, absent sphincter
- Difficulty urinating, have to bend over and push stomach, unable to urinate at all upon waking, usually can't go until noon
- Also urinary urgency at other times with incontinence
- Severe insomnia - crushing fatigue but unable to sleep
- Weak voice

Number of relapses before intervention (if applicable): Probably about 10 when RRMS?
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 6.5 self-assessed (edited - I use rollator or w/c 99%)
FSS before CCSVI intervention: 6.9
MSIS before CCSVI intervention: 104
Are you using Inclined Bed Therapy I.B.T? Yes

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

Congenitally hypoplastic left transverse sinus, and jugular bulb. The already small left internal jugular vein, however, also appears to have a relatively significant degree of stenosis just below the skull base.


Image

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 6/26/2010 Katowice, Poland
Type of venographic study: (MRV, Doppler) MRV done both locally and in Poland
Diagnosis: Stenosis right jugular (based on venogram, not MRV), and extremely small, underdeveloped left jugular
Type of procedure: Balloon angioplasty both jugulars
Procedure/drug related symptoms: Painless procedure but for some reason my left leg experienced pain afterward even though the catheter entered through the right

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words:
June 26 (day of procedure): No change
June 27: Improved balance, 50% less fatigue, able to walk slowly unassisted, faster overall movements, just able to move better... able to urinate upon waking, insomnia completely resolved
July 1: All improvements vanished except it's a little easier to urinate plus resolved insomnia - at least I can get some rest!

July 28: One month update. I am seeing improvements that come and go. Note that previously I had occasional "good days" but symptoms did not remit to this extent so this is new post surgery.
- Voice is much stronger. (However, the other day my voice got weak again, to the point where it was annoying to speak up because of the effort. So... it comes and goes.)
- I can sing better and on pitch (voice too weak before).
- Some days I walk faster, with foot "drop" instead of "drag."
- One day typing dramatically improved, fingers suddenly flying across the keyboard without thinking about it. Usually my hands are so numb and clumsy that I have to look down at the keyboard, I hit Caps Lock constantly, and make lots of mistakes. Now typing is marginally better but not like that "one" day.
- For the last two days BALANCE has improved once more and I can make short, slow stints around the house without the rollator. :)
- Lots of prayer, lots of faith in the healing power of Jesus, lots of hope, the joy of the Lord: These are making me stronger.

EDSS as of this update: same
FSS as of this update: same
MSIS as of this update: same
Last edited by JoyIsMyStrength on Tue Jul 27, 2010 9:07 pm, edited 1 time in total.
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CCSVI Tracking

Postby MamaOf3Girls » Sun Jul 04, 2010 9:01 pm

CCSVI TRACKING 10-21-10

MS HISTORY
Name (if want to give other than TIMS login name):
Male/Female: F
Age: 36
Date(s) & type of neurological diagnosis 07/2005 RRMS:
Lesion locations (most affected side, if known), number: at least 6 lesions. 2 "new" in 2007; 3 "new" in 2010
MS treatments: Copaxone 08/2005-05/2008; 07/2009-Present
MS symptoms before stenosis intervention: Optic Neuritis R&L; tingling of face R&L; tingling in R fingertips; tingling in R&L foot; cog fog; intolerance of heat and cold; vertigo
Number of relapses before intervention (if applicable): 3 major
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)

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: 06/10/2010; Hubbard Institute
Type of venographic study: MRV
Diagnosis: As can be seen, the MR venograms shows pinching of both internal jugular veins. The flow quantification studies show slowing and reflux of both internal jugular veins. The SWI study shows iron deposition in the globus pallidus. The standard T2 and T1 without contrast shows MS-type lesions in the periventricular white matter.

Type of procedure:Scheduled 10-28-2010 in San Diego

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:
Last edited by MamaOf3Girls on Thu Oct 21, 2010 1:33 pm, edited 1 time in total.
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Postby suzq77 » Tue Jul 06, 2010 5:47 pm

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

Male/Female: (M/F) Female

Age: 32

Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): dx'd RRMS 10/26/2001

Lesion locations (most affected side, if known), number: diagnosed with lesions on spine; too many to name now

MS treatments: avonex, rebif, copaxone, ldn, betaseron, (one dose of) tysabri, novantrone, MS Recovery Diet

MS symptoms before stenosis intervention:
numb from waist to toes
spasticity in legs and lower back
clonus in both feet
hyper reflexive
spasms/twitching in feet and legs in evening
heat sensitivity
vertigo
mild fatigue
*edit: forgot left foot drop

Number of relapses before intervention (if applicable): 3-4 times/year from 2001-2006. In remission since 2006 from Novantrone

EDSS before CCSVI intervention (self-assessed or physician-assessed?): 6.5, self-assessed (use walker or forearm crutches for short distances, scooter for longer distances and hand controls in my car

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: 6/18/10, United States

Type of venographic study: (MRV, Doppler) Venogram

Diagnosis: left and right IJVs 50% occluded at base, left upper IJV (behind ear) occluded 75%

Type of procedure: balloon venoplasty 3x at base IJVs and 4 x at upper IJV

Procedure/drug related symptoms: n/a


Number of relapses since first CCSVI intervention: none

Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
spasticity in legs (lock and release upon standing after sitting or laying down) GONE
bladder much easier to empty - don't have to push down on it
leg twitching/spasms are lessened
legs are stronger
numbness is lessened/sensation returning
2 weeks post: trying to wean off of wheeled walker and use one forearm crutch around the house; starting PT

EDSS as of this update (self-assessed or physician-assessed?) 6.5 self assessed

good things are happening in fits and starts - it's slow, but sure...
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CCSVI Tracking Project

Postby notadoc » Thu Jul 08, 2010 11:36 am

Male/Female: (M/F): M
Age: 61
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): 2001 RRMS
Lesion locations (most affected side, if known), number: Right, unknown number
MS treatments: Rebif for 3 months. Stopped because of side effects
MS symptoms before stenosis intervention: Fatigue, cog-fog, balance, double-vision, restless legs, numbness in extremities
Number of relapses before intervention (if applicable): 5-10 (uncertain)
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 5.0 self-assessed
FSS before CCSVI intervention: 5.9
MSIS before CCSVI intervention: 6.7
Are you using Inclined Bed Therapy I.B.T? (Y/N) Y

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 07/07/2010 Georgetown Univ. Hosp.
Type of venographic study: (MRV, Doppler) Doppler
Diagnosis:
1. Bilateral internal jugular vein stenosis.
2. Bilateral internal jugular vein reflux is seen measuring 1.22 seconds on the right and 0.64 seconds on the left.
3. Rt TRV IJV CSA supine 1.94cm.sq. - CSA sitting 1.06cm.sq = 0.88cm.sq.
Lt TRV IJV CSA supine 0.73cm.sq. - CSA sitting 0.13cm.sq = 0.60cm.sq.

Date/location of procedure: 10/4/2010 Arizona Heart Institute, Phoenix
Type of procedure: Angioplasty
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): Immediate and profound. Virtually no symptoms since treatment.
Last edited by notadoc on Fri Nov 05, 2010 1:39 pm, edited 2 times in total.
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Postby uniduo13 » Sat Jul 10, 2010 3:16 am

MS HISTORY
Name : Sergei
Male/Female: M
Age: 37
Date(s) & type of neurological diagnosis: 7//12/2009 RRMS
Lesion locations (most affected side, if known), number: 1 lesion in spine, 1 in brian
MS treatments: Copaxone- stopped after 10 months, LDN - 2 months, no longer taking
MS symptoms before stenosis intervention: Fatigue, numbness all over with hands being affected the most. Vertigo, dizziness, heavy legs, walking only shor distances before needing a break. Headaches, frequency in urination, heat intolerance
Number of relapses before intervention (if applicable): not sure
EDSS before CCSVI intervention : 2.0 (self-assessed)
FSS before CCSVI intervention: 6.5
MSIS before CCSVI intervention: 75
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: 06/02/2010, West Palm Beach, FL
Type of venographic study: (MRV, Doppler) - Both
Diagnosis: Stenosis in both jugular veins
Type of procedure: Angioplasty, 1 stent in Left jugular and 2 in the right one
Procedure/drug related symptoms: Stenting
[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: 09/02/2010 - All symptoms improved. No more headaches, numbness in most areas is gone or is very mild. Legs are no longer heavy, fatigue is diminished by 85%, no more heat intolerance, dizziness is gone and vertigo both diminished by 90%.
EDSS as of this update (self-assessed): 1.0
FSS as of this update: 2.0
MSIS as of this update: 40
Last edited by uniduo13 on Fri Sep 03, 2010 4:00 am, edited 1 time in total.
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Postby laura383 » Mon Jul 12, 2010 7:45 am

MS HISTORY
Name : Laura (CCSVI semi-positive)
Male/Female: F
Age: 48
Date(s) & type of neurological diagnosis: 1997 RRMS, 2010 SPMS
Lesion locations (most affected side, if known), number: Brain only don't know number
MS treatments: Natural only no drugs. Acupuncture, hormones, Klenner vitamin therapy
MS symptoms before stenosis intervention: Fatigue, numbness on right side-arm, leg and face affected. Dizziness, brain fog, walking only short distances before needing a break, needing a cane, limping. Headaches, hesitation and retention in urination, heat and cold intolerance . Choking, trouble getting air to speak. Trouble gripping and writing.
Number of relapses before intervention (if applicable): 2 remitted out of to normal functioning then down hill for last year
EDSS before CCSVI intervention : 6.5 (self-assessed)
FSS before CCSVI intervention: 6.66
MSIS before CCSVI intervention: 107
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 5 2010 New Delhi India
Type of venographic study: (MRV, Doppler) - Both
Diagnosis: Stenosis in both jugular veins
Type of procedure: Balloon Angioplasty in right and left IJV.
Procedure/drug: Heparin

I first had the procedure 5 July in India, felt great and was healing but re-stenosed. I went to Los Cabos Mexico and had it re-done 5 Aug. Now it will be 5 September tomorrow, 2 months since first time, 1 month since second time.
I have good and bad days, but the trend is upward. On a good day now (like yesterday) I drove my car and actually ran an errand. Then I went out to dinner with my husband. That was a big day for me. I can walk 100-200 meters without a cane. I have improved stamina, improved vertigo.
I hadn't been driving before the procedure, the vertigo was just too bad. Or walking more than about 50 feet, even with my cane.
I have a ways to go, but I am feeling better and better about it.

This lasted about 6 months, but then symptoms returned.

Had the procedure again, but veins were open. No help. Trying nuritional therapies.

[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: 07/12/2010 -one week today- Many symptoms improved. No headaches or bladder problems, numbness in arm and leg improving. Fatigue is diminished, no more heat intolerance, no more dizziness. Stronger, balance better. No cane for shorter distances, no wall walking. NO BRAIN FOG.
Still limp, still some numbness in arm leg and face
Still a long way to go but feel I can heal now not get worse
EDSS as of this update (self-assessed): 5.5
FSS as of this update: 2.88
MSIS as of this update: 51

update as of 30 July 2011
1st procedure was great July 2010, lasted a few weeks, but symptoms back.
2nd procedure even better, lasted 6 months, Aug 2010, but symptoms back and new ones as well
3rd procedure Mar 2011 no results, kept all sympotoms including new ones. Right side weaker, limp badly, hard to write, bleeding into left. Voice lighter, and slurred when tired
Last edited by laura383 on Mon Oct 10, 2011 7:24 am, edited 3 times in total.
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