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

Postby magdaln » Thu Apr 08, 2010 3:23 am

CCSVI TRACKING 07/04/2010

MS HISTORY
Name (if want to give other than TIMS login name): Magdalena
Male/Female: (M/F) F
Age: 36
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS diagnosed in October 2008
Lesion locations (most affected side, if known), number: several
MS treatments:none
MS symptoms before stenosis intervention: Double vision, spacity in legs, weird feeling ( tingling) in legs and arms
Number of relapses before intervention (if applicable):1
EDSS before CCSVI intervention (self-assessed or physician-assessed?):
FSS before CCSVI intervention:

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

Date/location of testing/procedure: 7 April 2010 / EUROMEDIC Katowice , Poland
Type of venographic study: (MRV, Doppler) MRV and Doppler and Phlebography
Diagnosis: Stenosis left and right IJVs
Type of procedure: angioplasty (PTA)
Procedure/drug related symptoms: none

Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates): feeling of "relief" in my neck, vivid mind, energy surge

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 Becia » Fri Apr 09, 2010 1:55 am

CCSVI TRACKING 04/07/2010

MS HISTORY
Name Beata:
Male/Female: (F)
Age:37
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): PPMS
MS treatments: , Betaferon, Rebif, Ldn, Avonex,FTY720, Tysabri
MS symptoms before stenosis intervention: Left side effected, poor balance ,left foot drop, weakness in left leg and hand, dizzines, fatigue
Number of relapses before intervention (if applicable): 10
EDSS before CCSVI intervention (self-assessed ?): 5.5-6
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: 04/07/2010 KATOWICE
Type of venographic study: (MRV, Doppler)
Diagnosis: left int jugular
Type of procedure: Ballooning
the balloon angioplasty I had on my left jugular has re-stenosis so back for a stent
My symptoms have not change from before the 1st procedure in April and the 2nd procedure on the May 2010


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): one week after procedure -no changes
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
Last edited by Becia on Mon May 24, 2010 9:58 pm, edited 4 times in total.
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CCSVI tracking project

Postby petebou » Sun Apr 11, 2010 1:09 pm

CCSVI TRACKING 04/11/2010

MS HISTORY
Name : Pierre
Male/Female:M
Age: 46
1991 RRMS
MS treatments: interferon 1999-2010; best-bet diet
MS symptoms before stenosis intervention: fatigue, brain fog, MS hug, numbness from toes to belly, poor balance and coordination, poor bladder control, weak legs, heat sensitivity, left foot drop, cold purple feet, vision in left eye affected, numbness of finger tips in right hand
Number of relapses before intervention (if applicable): >12
EDSS before CCSVI intervention : 4.0 (physician-assessed)


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


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 03/31/2010 Katowice, Poland
Type of venographic study: MRV and angiography
Diagnosis: CCSVI caused by left and right malformed IJV valves and stenosed azygous vein.
Type of procedure: percutaneous balloon angioplasty right and left jugular veins and azygous vein. Stent implantation into azygous vein.
Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words : much, much less fatigued. stronger legs. Brain fog gone. Left foot drop almost gone. Better bladder control. Gained sensitivity in both feet.
EDSS as of this update: 3.5 (self-assessed)
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Postby Inge67 » Mon Apr 12, 2010 7:59 am

CCSVI TRACKING 04/12/2010

MS HISTORY
Inge (Inge67)
Female
42

Date(s) & type of neurological diagnosis RRMS started in 1999, diagnosis in 2002

Lesion locations
most affected side: right. number: initially 14, now probably more than 20

MS treatments:
2002 - august 2007 Rebiff interferon
september 2007 - may 2009 Tysabri
october 2009 - present Copaxone

MS symptoms before stenosis intervention:

- Heavy legs
- disturbed feeling sensations under feet
- purple and ice cold feet and lower legs
- heavy leg spasms (especially at night)
- not able to walk very well: indoors with rollator and on socks, outdoor wheelchair)
- right leg is paralyzed
- not able to bend knees and take a normal step
- not able to lift legs (right and left) from either sitting position or standing position.
- not able to drive car
- not able to cycle (also not on a home trainer)
- not able to walk stairs
- not able to turn in bed: sleeping on one side (left) only
- not able to get in and out of bed easily
- bladder issues (urgency, then trouble releasing)
- numbness in right hand: stiff and no clear handwriting
- balance issues
- not able to stand "alone"without support (table, chair etc), otherwise I fall backwards
- not able to stand verly long (max 3 minutes)
- not able to reach high
- not able to put on trousers easily/standing: getting dressed needs to be done sitting.
- Torso balance poorly

Number of relapses before intervention (if applicable):
10
In total 7x Methyl Prednison

EDSS before CCSVI intervention 6 - 6.5 (self-assessed):
FSS before CCSVI intervention: 1,44
MSIS before CCSVI intervention: 93

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: January 26th 2010, Frankfurt, Dr. Vogl.

Type of venographic study: (MRV)
Diagnosis: 70% stenonisis in Right Internal Jugular

Date/location of testing: April 9th 2010, Dusseldorf, Prescan
Type of venographic study: (MRV)
Diagnosis: 70% stenonisis in Right Internal Jugular

Type of procedure:

April 27th 2010, Katowice, Poland, Dr. Simka (doppler) and Dr. Kazibuski (procedure)

Procedure/drug related symptoms: ballooning of Right Jugular failed, so a stent (40mm x 14mm) was placed behind my collar bone.

Number of relapses since first CCSVI intervention: 0

Impact on your MS symptoms in words:
May 13th (2,5 weeks after)

I noticed the following improvements over the past weeks:
1. warm hands and feet (on and off)
2. better balance
3. more strength in my right hand
4. oedeem (fluid) in my lower legs and feet have disappeared
5. able to stand up more straight and stand longer (I showered standing up instead of sitting!)
6. able to lift right foot higher and able to make a start of a normal step.
7. able to walk a little bit faster.


If I look at the symptoms I described before, I can report the following changes:

- Heavy legs: still the same, but now more due to muscle ache than MS
- disturbed feeling sensations under feet: same: feet more sensitve
- purple and ice cold feet and lower legs: not alle the time, on and off. Purple feet only in the shower, oedema is gone
- heavy leg spasms (especially at night): same, eveb worse, but that probably also have to do with more exersise.
- not able to walk very well: indoors with rollator and on socks, outdoor wheelchair): same, bt I walk bigger steps, and faster.
- right leg is paralyzed: not paralyzed, but asleep so to call it. I notice differences. I can flex my right foot and sometimes lift my right knee a bit. I can lift my right foor higher.
- not able to bend knees and take a normal step: I am training to get it back. It is slightly improving. The setback is no muscle strength what soever
- not able to lift legs (right and left) from either sitting position or standing position. Able to lift left leg and sometimes also right leg. Strength is getting back.
- not able to drive car-same
- not able to cycle (also not on a home trainer) same
- not able to walk stairs: same
- not able to turn in bed: sleeping on one side (left) only: getting better
- not able to get in and out of bed easily same
- bladder issues (urgency, then trouble releasing): getting better
- numbness in right hand: stiff and no clear handwriting same
- balance issues: much better! able to stand and look over my shoulder, not tipping over when pulling up pants
- not able to stand "alone"without support (table, chair etc), otherwise I fall backwards: nearly gone. I can't move though, so I "fix myself in standing position and do not fall over.
- not able to stand verly long (max 3 minutes): better, 5-7 minutes
- not able to reach high: much better
- not able to put on trousers easily/standing: getting dressed needs to be done sitting.: see balance issues. I am able to put on jacket while standing.
- Torso balance poorly: better. Building up strength.


EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:[/quote]
Last edited by Inge67 on Thu May 13, 2010 8:27 am, edited 1 time in total.
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Postby Fred1208 » Sun Apr 18, 2010 12:14 pm

CCSVI TRACKING 04/18/2010

MS HISTORY
Name: Fred
Male/Female: M
Age: 48

Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other):
1993, First relapse
1998 Dx RRMS
SPMS since 2007, self assessed
Lesion locations, number: low number

MS treatments: None
MS symptoms before stenosis intervention: Heat sensitivity, sleep disturbance, sensitivity problems on hands, weakness in legs with fatigue to walk, writing difficulties.
Number of relapses before intervention : 4

EDSS before CCSVI intervention : 2 physician-assessed
FSS before CCSVI intervention: 3
MSIS before CCSVI intervention: 70

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: 11/20/2009 Paris
Type of venographic study: Neck doppler
Diagnosis: Nothing detected

Date/location of testing/procedure: procedure planned in Katowice the 25th of May 2010
Type of venographic study:
Diagnosis:
Type of procedure:
Procedure/drug related symptoms:

Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words :
EDSS as of this update:
FSS as of this update:
MSIS as of this update:
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Postby jimmylegs » Wed Apr 21, 2010 1:57 pm

msf, as previously posted (see below), please adhere to the rules of this sticky by asking questions of tracking project posters via private message only.
moderator's note: welcome to TIMS, ms.
please note, this sticky is strictly controlled for off-format posts.
please post questions and comments in the main forum or by private message.
thank you!
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Postby girlgeek33 » Wed Apr 21, 2010 7:54 pm

MS HISTORY
Name (if want to give other than TIMS login name): Denise G.
Male/Female: (M/F) F
Age:43
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS
Lesion locations (most affected side, if known), number: Frontal lobe heavily affected
MS treatments: LDN
MS symptoms before stenosis intervention:
Worst:
Fatigue
- unbelievable beyond tired, zero energy, life sucked out of me tired
Insomnia
- sleep trigger all messed up, inability to fall to sleep regardless of how tired I am, sometimes even ambien does nothing for the sleep but get real trippy!
Cognitive impairment
-can't stay on top of anything
-easily confused
-time spacial relationships affected
-lack of organizational ability
-can't read books anymore, can only read in short bits and constantly have to re-read things
-constantly lose what I'm trying to do, ie. can't stay on task
-can't follow a conversation
-wrong things come out of mouth instead of what I'm trying to talk about, something in my field of vision may come out instead
-difficulty writing what I have on my mind
-get fixated on things and even if I want to stop, I can't
-the more going on around me, the harder it is to process what I'm observing
-easily distracted
-can't find the words
-memory recall is crap (so many memories just don't come to mind)
-things I know I should know how to do, everyday things, are sometimes lost on me
-Names, HA forget about it!!!
I'm sure there are more cognitive things but i can't recall right now... lol

Other Symptoms, not as bad:
pain in my extremities
spasticity
pain when walking
drop foot
migraine headaches
itchy, itchy, itchy
speech
choking on nothing
degraded handwriting
cold toes
ringing in ears
tremor in my hand, typically at night
heavy feeling in my legs
numbness
balance
diminished emotional affect
minor bladder issue
heat sensitivity (put this here but avoid heat at all costs)
Number of relapses before intervention (if applicable): 1 a year brought on by allergy season in the spring
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 ] 5.5
FSS before CCSVI intervention:
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ] 7
MSIS before CCSVI intervention: 93
[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: 4/20/2010 Philadelphia, PA
Type of venographic study: (MRV, Doppler) MRV & Doppler Ultrasound
Diagnosis: Bilateral jugular stenosis
Type of procedure: venography
Procedure/drug related symptoms: slight tenderness at incision site

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):
**** update 5/23/2010****
-I have not had any fatigue since the procedure. I have been tired, even run down due to allergies but it is nowhere near as bad as fatigue was.
-I can sleep without sleeping pills again! i only needed to take them 1 night since the procedure. That was probably more to do with the excitement of going for 1 month follow up exam.
-I can walk distances without pain or walking into things.
-I can tolerate the heat again! :)
-I feel clearer thinking but still experience cognitive issues.
-the only other MS symptom I have experienced, in addition to cognitive issues is some minor speech issues here and there.

EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
Last edited by girlgeek33 on Sun May 23, 2010 11:20 am, edited 1 time in total.
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Postby coach » Mon Apr 26, 2010 3:34 pm

Name: Ladelle
Male/Female: F
Age; 54
Date and Type of neurological: CIS (ON 1984, 5 O bands. elevated IgG synthesis rate, asymptomatic until 1998 then slow progression with rapid progression 2009-present)
Lesion locations: ?
MS treatments: Antibiotics for 1 ½ to 2 years, Prokarin, no DMD’s use, supplements
EDSS before CCSVI Intervention: 6-6.5 (self assessed)
FSS before CCSVI intervention: 6-6.5 (self assessed)
MSIS before CCSVI intervention:
Have you had had a procedure for stenosis yet? Y
STENOSIS PROCEDURE HISTORY:
Date/location: 11/11/2009(testing) 11/12/2009 (procedure) at Stanford, one 12x29mm stent in azygous and one 10x29mm stent in left IJV below clavicle
Type venographic study: Doppler, MRI, MRV
Diagnosis: Inconclusive, but several places that needed a closer look. No IJV stenosis in the neck
Procedure/Drug related symptoms: None. Currently on 81 mg. aspirin only
Number of relapses since intervention: None since my MS did not follow an RR course
Impact on your MS symptoms: Increased energy, better quality of sleep, decreased frequency of headaches, decreased nocturnal enuresis. Walking and balance issues remain unchanged.
EDSS as of this update: 6 (self-assessed)
FSS as of this update: 4.5-5 (self-assessed)
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Postby AMcG » Tue Apr 27, 2010 9:21 am

MS HISTORY
Name A. McGowan
Male/Female: (M/F) M
Age: 59
Date(s) 2006 -2010 RRMS still unconfirmed.
Lesion locations (most affected side, if known), number: 4 vertical fingers, one on each quarter of brain small not proven to be relevant. Left side of body mainly affected.
MS treatments: No drugs; BB diet + supplements, massage weekly, accupuncture weekly.
MS symptoms before stenosis intervention: Dizziness and vertigo, overwhelming fatigue, weak legs, poor balance, spasticity in back and neck, restricted breathing, cog fog, urinary urgency/incontinence, bowel problems, vision not sharp
Number of relapses before intervention (if applicable): 3
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

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 23 -25 April 2010, Tychy Poland
Type of venographic study: Doppler + MRV + Venography
Diagnosis: Stenosis and greatly reduced flow in LIJ, Stenosis, pathologic valve and reflux in RIJ. Venography showed reflux both sides.
Type of procedure: Balloon of left internal jugular and balloon + stent in right internal jugular, azygous checked and OK.
Procedure/drug related symptoms:
None worth mentioning.
02/05/2010 Sides of neck a bit sore. Some remaining pain from injections in legs/stomach. Occasional headache to back of head (not severe or persistent.)

Another thing I noticed the day after the procedure was I had a lot of swirly dark eye floaters in my eyes. This has cleared up now. Was this dye getting up into my eyes?

14/5/2010 Every time I injected the clexane I got a bruise which didn't go away. So I ended up with 14 of them. A bit painful. Three days after I stopped the clexane they have gone. Acupuncture seems to have sorted the stiffness/pain in thel neck. Actually four of my bruises persisted and were painful for another three weeks.

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words

27/04/2010
Feel warmer, enjoy sunshine, dizziness almost gone, bowel problem gone, balance OK, walking OK, feel alert, no appreciable fatigue yet. So far brilliant! Hope it keeps up.

28/04/2010
Had a poo last night with very little effort. Usually a gargantuan struggle.
Went thru night without going to toilet!
Can do really big yawns. (spasticity in rib-cage much less.)
Dizziness very very gentle.
Entered room carrying tea in one hand, bowl of cereal in other, used my bum to open door and closed door behind me with right leg while balancing on left leg (left side is my bad side) without even thinking about it. Wow!
Wife commented on my walking in the Supermarket. Used to shuffle now stride.

30/04/2010
Muscles behind left ear relaxing – strange popping or crunchy noises in ear – in fact neck muscles relaxing all round. Can turn head easier.
Very clear-headed
Very sharp eyesight
Can do 1 foot in front of another walk
Strangely have had small but persistent skin infection on both hands for over two years. It is now clearing up.
Ears continue to improve – I did not expect this so it cannot be placebo.
No headache and sense of weight on head and shoulders when wake up. Head feels light.
NO FATIGUE – I have been getting up before 8:00 a.m. and by 11 p.m. I have been pleasantly tired and easily fallen asleep. So normal!

02/05/2010
Previous improvements have been maintained. Small things I have noticed: Notice air-movement on face when outside. Hands are pink and skin slightly shiny. Legs feel like a pair again. Looking in a mirror eyes are shiny. Still very gentle dizziness.

23/05/2010
A month out now. I am nervous about being too positive but I am almost ready to say I have no MS. I am sure people looking at me cannot see any symptoms. I am still gently dizzy but it is a kind of background thing that I can easily ignore. I can still balance perfectly in spite of it. On occasions when I sit still (or driving) I feel 100% normal. No fatigue, no pain, no cog-fog. My thinking is much faster I can now keep up with conversations and I am getting just as argumentative as I used to be. I enjoy feeling tired at the end of the day. If I was being picky I would say my legs are still somewhat weak and my lower back still has some spasticity. But I am expecting that will improve when I start doing some proper exercise. I am still unsure how long to give my stent to heal so I am only doing gentle exercise. I will probably wait another fortnight to start.

06/06/2010
Six weeks gone but I have chest/throat infection so I am not feeling too good. I have started doing a bit more. I am doing the mile walk up the hill behind our house almost every day (about 100m up and down). I was on a bike for the first time in over three years yesterday - I did eight miles there and back along the canal and carried the bikes over stiles and things. Muscles were tired but no MS fatique. Soon as I get over the infection I shall start doing some weights and if I can Yoga. I have been taking betahistine for four years to help the dizziness. I foolishly stopped taking it to see what would happen and the dizziness has got worse. It is still not real problem. I will probably carry on for a month and go back on if the dizziness does not improve.

27/07/2010
Three months from liberation. Unfortunately during the last three months I have had three chest infections and one epididymitis so I have not been feeling good a lot of the time. I don't know if that is anything to do with liberation but I am quite careful about hygiene so it baffles me. Anyway I have recovered quickly each time and I needed anti-biotics twice. As far as the MS goes I am now doing at least a two mile walk each day and I have done ten miles on more than one occasion, of course each time I get an infection it nocks me back a bit. All improvements I have already mentioned have been maintained and I continue to notice things I can do now which I could not before.

I would call myself more or less normal now but not nearly as fit as I want to be. I still on occasion notice diziness. I keep thinking it has gone and then I do something which just starts it a little bit. Perhaps I am being to picky. Frends tell me that normal people can make themselves dizzy too!
Getting ill always seems to bring at least some MS symptoms back but I am wondering whether this is simply my way of looking at it. I am not sure whether I am making an association with MS for what are normal symptoms of other diseases. Perhaps after having MS I am always going to interpret any normal symptoms of other infections as MS like.

I still don't feel able to say I am completely cured. But I certainly am able to live a normal life. And I do feel I am still improving. So I will report after six months. I intend to have a very active and enjoyable summer!

21/09/210

Only five months since Liberation but I have changes to report so I am posting now. I have had a definite worsening of symptoms. Perhaps due to infections (I have had six now) perhaps not. I also have been back to be re-tested by Kostecki. My right jugular (stented) is now fine and flowing average to above average. My left Jugular does not show reflux but is flowing poorly, almost as bad as before liberation. And I have had what I can only call a mini-relapse twice. On two separate days (a week apart) I have thought I was no better than before treatment. I stuggled to do the half mile walk behind my house and was very unsteady and dizzy. I also had a lot of back pain and spasticity and severe headaches. But I have improved again since. I now feel perhaps 80% as good as I was before treatment. I am thinking maybe I am now borderline for CCSVI.

Having said that I have been very active the past two weeks and have driven several hundred miles non-stop on two occasions. I am also doing quite a lot of DIY and not having a problem. On two days I have walked five miles. I am still clear headed, my eyesight is sharp. I do not have MS fatigue and my balance is again very good. This is not like my MS was before liberaton. I never recovered as quickly as this (except with prednisolone).

The difference is mainly that I have to concentrate more now. For example I can still do the walk where you put your feet heel to toe. Four months ago I could do that effortlessly. I have to pay attention now. I now sometimes wake up with a bit of a headache (I used to wake up with bad headaches) but it goes a few minutes after I get up. I just tried standing up and closing my eyes and walking round the room touching things to see where they were. I can do it. I have an accurate picture of the room in my head and I can accurately judge my own movements even with my eyes shut. And of course I am not stumbling or falling. So I am still pretty good really. But I was definitely better than this.

So I am left wondering. Did the successive infections cause it? If so I might continue to improve. Has the failed angio in my left jugular slowly worsening caused it? Has the treatment done something to my immune system to cause me to get all these infections?

Most of all, do I need another treatment perhaps with entry from the left femoral? I am thinking that might be a good idea at some point. But I am not about to rush into it

So I am optimistic again. I will be voting in part 3 of the Liberation Survey soon. I had decided to vote 'moderate' but I am not sure now. I think if I can go another month without an infection I might be back to dramatic. We shall see.

EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update
Last edited by AMcG on Tue Sep 21, 2010 3:38 pm, edited 15 times in total.
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Postby openmind » Wed Apr 28, 2010 12:46 pm

MS HISTORY
Name Jo Chant
Male/Female: (M/F) F
Age: 43

Lesion locations (most affected side, if known), Spinal SPMS C2,C3
MS treatments: None
MS symptom before. Right leg dropped foot, weakness, Right hand weak, spasms in legs and stomach, bladder urgency and frequency, bowel urgency. Dizziness, balance, cant cope with loud noise or two noises at same time. Getting up once a night, urgency on rising, spasm on rising. fatigue on exercise ie cant walk at all after cycle machine for two minutes.
Headached pretty regularly.
Number of relapses before intervention (if applicable): 1990 -2005 4 2005 -2010 none progressing
EDSS before CCSVI intervention (self-assessed or physician-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:
[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/N)
Y

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 18th March 2010 Katowice, Poland
Type of venographic study: Doppler + MRV + Venography
Diagnosis: left internal jugular narrowed and slight narrowing on right
Type of procedure: Balloon of left internal jugular and balloon right internal jugular, azygous checked and OK.
Procedure/drug related symptoms:
None worth mentioning

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words

After initial bladder infection which took me off my legs for a week, y legs feel worse than before Poland but i put this down to two weeks of not being on them all day.
Lots more energy
More stamina
More concentration
Emotions seem calmer not as edgy and jumpy
Sleep better legs now more fluid upon rising and no spasm even when legs outstretched.
Still get up once in the night but not as urgent
Bladder no where near as frequent in day time, no longer planning around toilets!!
Bowel is behaving so far.
Dreaming
Runny nose
Sweaty feet
Had a cold for the first time in three years.
Havent had any major headaches apart from bladder infection when i had a bad headache for days, but headache were also regular.
Have had moments of better walking but generally seems worse still, now left leg is playing up more. But maybe signs of getting a bit further again.
can do a few mnutes on cycle and still walk after instead of being done in.


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 Vhoenecke » Thu Apr 29, 2010 4:07 am

Patient Name: Val Hoenecke

MS History
Female
Age: 46
Diagnosed 2009 RRMS
Lesion locations : subratentorial brain right frontal region
MS treatments: Copaxone march 2009, Vitamin D and Omega 3
MS symptoms before stenosis intervention:right side weakness, foot drop, loss right palmar muscle wasting, brain fog, slight imbalance when ambulating, extreme fatigue, heat intolerance
EDSS before stenosis intervention 2

Stenosis Procedure History
April 28, 2010-Euromedic Katowice, Poland
MRV/MRI - Ultrasound
Diagnosis: Narrowing of the right jug vein.
Procedure:Percutaneous balloon angioplasty of the right jugular vein Balloon 14x40.

Incline bed therapy Yes

EDSS Self Assessed 2 (before)
MSIS Self Assessed 80 (before)[/b]
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Postby Miia » Fri Apr 30, 2010 6:17 am

CCSVI TRACKING

MS HISTORY
Name: Miia
Female
Age: 33
Diagnosis: 04/2009 PP, 03/2010 RR (the doctors change my type based on MRI, I'm not convinced.)
Lesion locations (most affected side, if known), number:
MS treatments: Diet (BBD, Terry Wahls), since 10/2009
MS symptoms before stenosis intervention (approx in order of appearance, every symptom is not primarily MS related):
- dyslexia (80's)
- problems concentrating (90's)
- a little bit poor hearing
- depression (1996)
- lazy bowel
- poor balance and coordination (also Benign paroxysmal positional vertigo, 2001)
- fatique, cognitive
- brain fog
- overactive bladder (2005)
- heat sensitivity
- lungs don't feel to fill up (2007)
- numb feet and ankles (makes balance even poorer), (2007)
- ataxia, body control problems (also affecting to balance)
- muscle weekness
- spasticity, legs
- right foot drop (2008)
- fatique, physical
- facial muscle weekness, left side, antisymmetric face
- tremor
- double vision (2008)
- numb fingertips (2009)
- I've also got slowed thinking, speaking and swallowing, a little bit of working memory problems and l'Hermitte sign

Number of relapses before intervention (if applicable): Can't say
EDSS before CCSVI intervention (self-assessed or physician-assessed?):
FSS before CCSVI intervention: 6.2 (01/15/2010), 4,8 (04/15/2010)
MSIS before CCSVI intervention: 104 (out of 145) (01/15/2010), 67 (04/15/2010)
Are you using Inclined Bed Therapy I.B.T? Y, and I sleep well now after 1 months of IBT (updated 09/13/2010)

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 01/18/2010 in Finland
Type of venographic study: Doppler
Diagnosis: nothing unusual was found (I was the doctor's first patient)
Type of procedure:
Procedure/drug related symptoms:

Date/location of testing/procedure: 05/11/2010, Katowice, Poland
Type of venographic study: MRV
Diagnosis: Right IJV stenosis

Date/location of testing/procedure: 05/12/2010, Katowice, Poland
Type of venographic study: Doppler
Diagnosis: Right IJV stenosis and reflux

Date/location of testing/procedure: 05/12/2010, Katowice, Poland
Type of procedure: Balloon angioplasty of right IJV (balloon 12x40)

Post op feelings:

Immediately or almost immediately (few days):
lighter legs
better hearing
remarkable physical fatique progress
faster thinking and speaking, easier to speak physically (mouth works better)
less brain fog and cognitive fatigue

4-week-update
I've had 1 relapse post op, but it was because I had sinusitis and fever. The infection made me use a cane again. But now I'm again fine:
+ I'm able to kick a football, which was difficult last summer because of my lousy balanse and weak legs/feet.
+ cognitive functions are still the same as a few days post op, I enjoy to do things again!
+ I can concentrate a lot better now than pre op
+ I also read faster and I don't have to read texts many times like before.
+ I think my right eye dominates now more and that makes me faster reader
+ I've been jogging a few meters without any assistance like treadmill handrail (balance is better)
+ my legs are not so stiff anymore (jogging is possible)
+ I feel that my muscles are getting stronger because I'm able to use them
+ I don't feel much of either cognitive or physical fatique
+ I think I'm much more confident both mentally and physically
+ I sweat when it's hot
- Negative thing is that I feel some kind of pressure close to my left ear and it also buzzes, like I would need some kind of treatment also for that side (ballooning was made to my right side)
- First I slept quite well, but I've started to flop like a fish when I go to bed. No idea what's happening. Maybe I should try IBT.


5-6-week update
I tried IBT but my feet become very numb. I stopped after 4 nights and now my feet are ok. A bit numb, but not very much.
+ YouTube video shows how I am at the moment:

CCSVI Makes Difference

4-months-update

I still feel the same. My energy levels both physically and cognitively are high. I've got the energy to do things I had to stop one year ago, like astanga yoga and taiji. I'm much stronger than before and I don't have to rest so often. I'm still a bit weaker than the rest of my groups but I feel totally different than earlier.

I've also started conserving some wooden furniture, which would have been too much for me earlier both physically and mentally with my former fatique.

If I sleep too few hours, I'm not so exhausted like I used to be. But anyway I sleep quite well now with IBT.

6-month-update 11/21/2010

I'm still feeling ok.
But: Babinski is back and I think my heat toleranse is a little bit worse. I also think my ankles and fingertips are more numb now than in the summer.
+ my bladder is quite good!

My check up in Katowice is 23th of november. I'll let you know later about that.
Last edited by Miia on Sun Nov 21, 2010 9:16 am, edited 7 times in total.
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Postby Salvatore24 » Mon May 03, 2010 6:12 pm

MS HISTORY
Name: Matt
Male/Female: Male
Age: 22
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): Minor symptoms since age 18-19 (2007), first major attack 08/23/2009
Lesion locations: No lesions on brain or spine
MS treatments: Diet & exercise (screw the drugs)
MS symptoms before stenosis intervention:
Before my first major relapse these were my somewhat “mild” symptoms. At first I thought it was a combination of smoking and being tired, I was working 6 days a week from 7-5 in a physically demanding job. After I stopped smoking, that’s when the fatigue and cog fog hit pretty hard, I thought it was part of the withdrawal period, nicotine being a stimulant. When my symptoms were still present 2 years after quitting, I thought something else was at play. I thought I needed cigarettes to function normally, so I started again just before I turned 22. Coincidently, most of my fatigue and cog fog went away.

Prior to relapse, age 19, 2007:
- Mild to severe fatigue
- Somewhat regular headaches/migraines
- Male problems (Again, I thought this was due to smoking, but this stayed even 2 years after I had quit)
- Cognitive impairment has been my worst symptom; I was ridiculously sharp and quick witted prior to the age of 19, then seemingly out of nowhere I got dumb. Adding/multiplying/dividing numbers is almost impossible now. I find it difficult to think of the words I want to use and have trouble pronouncing and spelling them. Previously I was a straight A student in English, and had a very large vocabulary. I have trouble multi-tasking, whereas before I could have 100 things on my mind and get through them all without a hitch. Hand eye co-ordination worsened a bit, playing ball games was a bit more difficult.

After first relapse, age 22, August 2009:
- Slight numbness & tingling from my waist down. Four hours later: intense burning pain, unable to walk or stand, loss of bladder/bowel function. Treated with IVIG for one week, in rehab for 1.5 months, able to walk unassisted after about 4 weeks.
- Cog fog daily, rarely can I concentrate
- Constant fatigue
- Dizziness/head spins while sitting, or from sitting to standing
- Numbness/tingling/pain to varying degrees in arms/legs/chest/face
- Difficulty swallowing at times, irregardless of whether I'm eating or drinking
- Constant headaches (even upon waking)
- Further hand/eye co-ordination problems
- Extreme sensitivity to heat
- Hands and feet always ice cold
- Further male problems
- Blurry/altered vision at random times & durations
- Lhermitte’s sign (No lesions though, WTF?)
- Balance fluctuates hourly/daily
- Shortness of breath at times
- Unstable moods, almost bi-polar like

These symptoms are a daily occurrence for me, fluctuating/changing by the minute/hour. So it should be easy for me to tell if there is a difference or not.

Number of relapses before intervention (if applicable): 1
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 4 (Self-assessed)
FSS before CCSVI intervention: 24 (This sounds high, is it possible?)
MSIS before CCSVI intervention: 88-116
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: 02/26/2010, Melbourne Radiology Clinic, Australia
Type of venographic study: Doppler
Diagnosis: See post http://www.thisisms.com/ftopicp-98571.html#98571
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:


I’m hoping my procedure will be performed this month. I will update this post, and I will also start my own thread (because I’m so special and important haha :D) Just kidding, I know how easily posts get buried in the tracking thread, and I’ll make sure to give an update every few days/weekly at least.
Last edited by Salvatore24 on Mon May 03, 2010 10:07 pm, edited 1 time in total.
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CCSVI Tracking

Postby fiddler » Mon May 03, 2010 8:49 pm

MS HISTORY
Name: Ted
Male/Female: M
Age: 56
SPMS Diagnosed in February 2004. Earlier symptoms (starting in 2002) included mini seizures on right side of body, then footdrop and weakness in right legs. Then numbness/tingling started in both hands, after which weakness subsided in the right side of my body, but started and worsened in the left side of my body (leg and arm). For more current symptoms, see below.

Lesion locations, number: To be completed later

MS treatments: Betaseron since April, 2004. Solumedrol was tried in 2007, but without any benefit

MS symptoms before stenosis intervention:
1. My left leg is weak and somewhat unresponsive, with a definite "dropfoot" tendency when I walk. Since I've had this symptom for more than two years, my muscles in the entire leg and buttock are weaker and smaller than those on my right side, despite the fact that I exercise at least an hour almost every day. I can now only walk a few hundred feet and use a cane when I do that. My left arm is also weak, to the point that shopping bags slip out of my hands. I've been working with the physiotherapist to establish some mobility benchmarks, so any improvement I might see after Poland can be more objectively measured.
2. I sometimes get the strangest feeling, like something between a shiver and a slight seizure of some muscles when I do things like get up out of a chair, stick my foot in cold water, or accidentally stand on some small object with a bare foot (walking on crushed rock in my bare feet is absolute torture).
3. Both hands are always numb... like the feeling you get when you're hands have been exposed to very cold wind or water for too long. Some days it's mostly just the numb/tingly feeling with a sense that I have lost a lot of sensation in them (like I'm wearing rubber gloves), while other times it gets so bad that they feel like hams at the end of my forearms. At those times both arms also feel heavy, like they're made of concrete. At all times now I find I drop things from between my fingers without realizing it's happened. On bad days I find that I have trouble with eating utensils slipping out of my hands or turning around in them.
4. My fatigue varies considerably from day to day and week to week. Some (rare) days I only have a few spells of suddenly feeling quite tired, but on bad days I might have to have several naps during the day, with a feeling of such fatigue that I can hardly keep my eyes open. On the other hand, I almost never get to sleep without using a sleeping pill.
5. I always have a pain or irritation in my left hip, which at its worst can be a radiating burning (sciatica) pain all the way down to my heel that lasts so long that it upsets my stomach. At its best it's an irritation that makes it uncomfortable to sit still any length of time. This symptom might not be directly an MS symptom, but rather a result of my unnatural gait.
6. I haven't had as many "bathroom problems" as I did a few years ago, but then I've been taking pills that mean I don't feel I need to "go" as often as I did in the past, so that might be part of the improvement. Of course, one of those pills that didn't work out gave me a really dry mouth and throat, and seems to have resulted in a chronic post-nasal drip... or at least I hope that's why I've had more swallowing difficulty since I tried that pill.
7. Although I've had the feeling that I've been getting more forgetful (names, words), I did do a battery of tests where I was found to be OK "for a guy of my age"... I guess I can't blame it on my MS after all.
8. I notice that I haven't had those phantom pains (especially in my legs or groin), the ones that feel like someone stuck a pin in you, as often for the last year or so.
9. On the other hand, I have been experiencing cold feet and, to a lesser extent, cold hands. It's a feeling that comes and goes, but at it's worse my feet feel like blocks of ice, to the point that it feels painful. Not only do my hands and feet feel cold to me at those times, but they are cool to the touch, as well, according to my wife.
10. The back of my neck (just below my skull) seems to be always sore/stiff lately... but maybe that's just something I've noticed more since I learned about CCSVI.
11. I've had my eyesight checked recently, and though I no longer have the "better than 20/20 vision" of my youth, it's probably just deterioration related to my age. Nonetheless, my optometrist is going to give me a copy of the results of the battery of tests he did so that I can take them to Poland with me.
12. Something that I haven't had for a long while (or at least as badly) is heat intolerance, which manifested itself as great fatigue and lethargy if the weather was very hot.

Number of relapses before intervention (if applicable): N/A
EDSS before CCSVI intervention (self-assessed): 6.0
FSS before CCSVI intervention: 5.2
MSIS before CCSVI intervention: 78
Are you using Inclined Bed Therapy I.B.T? Yes (but no obvious benefit after more than 2 months of use)

Have you had testing (and possibly procedure) for blockage yet: Yes (but only in Poland, just prior to intervention)

STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure: April 28 and 29, 2010 in Katowice, Poland
Type of venographic study: MRV and Doppler
Diagnosis: Right jugular narrowed, left jugular had a malfunctioning valve
Type of procedure: Venoplasty of right jugular, Venoplasty then stenting of left jugular
Procedure/drug related symptoms: Tender neck, especially at location of stent, which lasted a week.
Number of relapses since first CCSVI intervention: N/A

Impact on your MS symptoms in words:
May 3, 2010 (5 days after procedure):
Too early to tell. No obvious changes that can’t be attributed to normal variation in my MS symptoms

May 11, 2010: Noticed an improvement in the strength of my left arm last week, though afterward I was warned not to overdo exercise for the first 2 weeks after a stent so can't test to see if it was a transient thing. My fatigue MAY be a bit better, not sure. Otherwise, nothing noticeable.
EDSS as of this update (self-assessed): 6.0
FSS as of this update: 5.2
MSIS as of this update: 78

May 19, 2010: I've worn button shirts for the last two days for the first time in months... and I buttoned them myself! And my walking is better... better than it's been in a long while: I walked around at work today and my colleagues marveled at the change. And I've noticed a higher energy level for several days now.

June 3, 2010: Five weeks since I was liberated, and I'm definitely feeling stronger... in my walking, in my exercises, in the energy I have to do things, I continue to see small improvements. They come slowly, in dribs and drabs, they sometimes regress, but overall I continue to see a gradual improvement in my strength, my balance and my endurance.

June 29, 2010: My energy is still way up. I have more strength in my left arm. My mobility and balance are still a bit better - I haven't used a cane in a month. My manual dexterity is still better: I wear shirts with buttons on a regular basis again, and only have problems if I'm really tired from exercising or from walking around.

Sept 2, 2010: No more improvements since June 29th. In fact, my mobility sometimes seems to have regressed, though with the day-to-day and hour-to-hour changes that I have, it's really hard to tell. I still don't use a cane (except in airports), so it can't have regressed much.

Feb 7, 2011: Over 9 months now. I had my veins checked at the end of last September and the flow is still good. I have had some continuing small improvements since last fall. My fatigue levels are still greatly reduced, my mobility seems to be improved a little, my strength has improved a little, while my other improvements have been maintained.
Last edited by fiddler on Mon Feb 07, 2011 3:57 pm, edited 11 times in total.
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby judipom » Wed May 05, 2010 6:27 am

MS HISTORY
Name: Judi Chatowsky (Judipom)
43 year old female
Diagnosed in 1997 with RRMS
Lots of lesions on brain and spine
I used Avonex for 8 months, now use diet, supplements and lifestyle change (i.e. low stress, rest, meditation etc.)
MS symptoms before stenosis intervention: Daily-lack of balance, numbness, fatigue, poor bladder control. During exacerbations--loss of motor control, vision impairment, lead legs, head feels like a bowling ball, large areas of numbness, extreme fatigue, extreme vertigo, nasaeu.

Number of relapses before intervention: Many. My MS seemed to have gone into a type of remission during pregnancy and while I was breast feeding (3 years total) but has been flaring up more frequently the last two years.

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

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: May 5 2010 (tomorrow!). I am scheduled to see Dr. Lee at Georgetown University Hospitals Reston, VA office. I am also scheduled for a doppler ultrasound and a venograph.

I will complete this post upon my return from Georgetown.

I saw Dr. Lee, but Georgetown is requiring the recommendation/involvement of a neurologist before proceeding with diagnosis. I return to Georgetown on June 21 for follow-up and will update my post at that time. Thanks, Judi

I had an MRV and a Doppler Ultrasound
Diagnosis: The Doppler Ultrasound showed considerable reflux in my left and right Internal Juggler Veins.
The MRV showed no stenosis or blockages. My venogram is still up in the air. Dr. Mora (neurologist) and Dr. Neville (vascular) are to consult and let me know if they think I should go ahead with the venogram. I will post again once I know that.

Type of procedure:Balloon venoplasty performed July 7, 2010
Although the MRV showed normal veins with no stenosis or blockages, the venogram showed considerable stenosis of my right Internal Jugular Vein. Dr. Neville ballooned it. My left IJV and my Azygous vein were both normal and healthy.

Presently I can't say what the impact on my MS is. I am tired post-op and my right neck is very sore. The catheter incision on my groin is healing very well and does not hurt at all. I can't tell if any of my MS symptoms have gone yet, my walking is still wonky and I tire easily. I think I will know more once I have completely recovered from the procedure itself. The staff at Georgetown was outstanding.
Last edited by judipom on Sun Jul 11, 2010 9:25 am, edited 3 times in total.
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
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