CCSVI tracking project-POST PER P.1 FORMAT ONLY

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

Postby mags4short » Mon May 17, 2010 12:29 am

CCSVI TRACKING 01/05/2010

MS HISTORY
Name: Margaret
Male/Female: (F)
Age: 45 at time of procedure
Date(s) & type of neurological diagnosis 2001 diagnosed with RRMS after years of symptoms
MS treatments: Copaxone – 6 years, Rebif- 2 years, various tablets for fatigue, pain etc.
MS symptoms before stenosis intervention: Pain in neck, numb shoulder arm and hand on left hand side, loss of sensation in lower legs, purple feet, cold hands and feet, balance issues, pain, urinary issues, tremor , fatigue, cog fog, optic neuritis, memory issues, word finding etc. Also hard of hearing wear two hearing aids, profoundly deaf to high pitches but can manage with hearing aids although difficult in noisy environments, have a feeling that is this connected?
Number of relapses before intervention , varying from year to year, but the everyday symptoms have become more problematic over the last two years, mainly the balance, pain and loss of sensation in arms/hands
EDSS before CCSVI intervention ranges between 5.5
FSS before CCSVI intervention: 2.2
Are you using Inclined Bed Therapy I.B.T? Y

Have you had testing (and possibly procedure) for blockage yet: Y Poland 04/05/2010
STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 5/5/10
Type of venographic study: (MRV, Doppler)
Diagnosis: CCSVI left jugular vein
Type of procedure: angioplasty left jugular

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 post procedure... will update monthly
Better balance
Warm hands and feet
More energy

7th June 2010

One month update.


My balance is 90% better than it was before the procedure.

Hands and feet are still warmer, my feet still change colour from time to time, but nothing out of the ordinary really.

I am sleeping well and have more energy during the day.

I seem to have been plagued with infections this month, first a UTI after the catheter, now a chest infection due to a cold. As such I can't really get a real measure of the full benefits as yet, but it gives me something to look forward to :)

My head is much clearer, the cog fog seems to have lifted, although I am finding that as it gets towards the end of the day I can still have problems word finding. But then again I suppose this can be said for many people who are tired?

I am still trying to be realistic and am not looking for miracles, but that does not stop me looking :)

I will update again in another month, hopefully the infection will be long gone by then.



6 MONTH UPDATE.{/b}

Well things have been OK these past 6 months. My balance is still very much improved, my feet are still warm most of the time.

The initial lifting of the cog fog only lasted about 6 weeks. I had thought that this may be due to the numerous infections that I had in the summer, but unfortunately the infections are gone, but the fog still remains.

I still have numbess in my left arm and pain in my neck, these were all issues for me before the procedure.

I am due back in Poland on the 1st Dec for a check up and a second procedure if nec. If I have restenosed then maybe they will give me a stent the next time. We will see...
Last edited by mags4short on Sun Oct 17, 2010 2:09 am, edited 2 times in total.
Alone we can do so little, together we can do so much :)
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Postby costumenastional » Mon May 17, 2010 12:48 am

MS HISTORY :
diagnosed on 12/03/2008 after a severe left eye optic neuritis bout. First symptom was in 2004 when my fingertips went numb and remained like this ever since.

Male/Female: M

Age: 35

Date(s) & type of neurological diagnosis: RRMS (?) Who knows...dxed 2nd of December 2008 (worst day in my life...so far...)

Lesion locations (most affected side, if known), number: 2 In Cervical Spinal Cord (C2, C4-5)

MS treatments: 3 month regime of Campath 1-H right after dx with a total of 230 mg.

MS symptoms before stenosis intervention: severe left eye optic neuritis accompanied by nystagmus and scotoma, numbness in hands and feet, mild left side weakness, bilateral tinnitus, cog fog, dizzyness, balance symptoms and of course fatigue which comes and goes. Worst sy,ptom is that "poisoned mind syndrome" of mine.

Number of relapses before intervention (if applicable): 1

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

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 05/02 Patra, Greece and 03/May/2010 Sofia, Bulgaria

Type of venographic study: (MRV, Doppler) Doppler
Diagnosis: both Dopplers showed critical stenosis of both jugulars

___________________________________________________________

Type of procedure:
03/May/2010 PTA by dr Petrov.

No stents. They found stenoses in 2 places in my left jugular vein and a twisting, one mild (30%) in my right and one severe in my azy vein.
Procedure/drug related symptoms: NOTHING

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

____________________________________________________________

26/May/2010.

3 weeks pre op my left eyelead was dropping very often. Also, my wrists felt very weak without any real lack of power. These two last appeared symptoms seem to be milder but not vanished. My brain issues, which are the worst, are still there. Tinnitus, bad eyesight, numbness etc the same. No drastic, immediate improvements for me.
Instead, new symptoms appeared. Very mild tingling in 2 or 3 new places. I take it as it has something to do with altered blood drainage from my cervical spine, affecting already damaged nerves.

EDSS as of this update (self-assessed or physician-assessed?) 2 physician-assessed

__________________________________

For what it s worth here is my epicrisis:
__________________________________
Pre op doppler:
Highly advanced stenosis of both of the jugular veins with a minimum diameter of Left - 0.03 mm and Right - 0,3mm, V. Vertebralis sin. -2.5mm, V. Vertebralis dex. -3.2mm

Invasive diagnostic and therapeutic procedures performed:
Venography: V. Jugularis dex (i think this means right), -30% stenosis in the confluence, V. Jugularis sin (left) annuli in two areas, one near the bulbous and one near the confluence. V Azygous withhighly advanced stenosis. PTA and balloon dilation angioplasty was contucted with a 9/12 mm balloon on both jugular veins and 12/40 balloon on the Azygous.

Doppler post op:
Lying position: V Jugularis sin diameter 5mm and V Jugularis dex diameter 4.3mm
Sitting position:V Jugularis sin diameter 2.5mm and V Jugularis dex diameter 2mm

I will update if something changes for better or worse.
I am not on any MS drug.

There are some pics in my blog.

__________________________________________________________

16/July/2010

It is 2 month and a half post op. I had a follow up doppler a few days ago and my jugs are still functional. At least they are way better than pre op.

Symptom speaking i am a bit better. The dizzyness and that awful poisoned brain feeling are still here but not like before. On the down side, everything else is the same. Hopefully, i wont progress. I will update in 3 months.
__________________________________________________________
30/August/2010

I am sorry to report that my legs have started giving me trouble. A month ago when first noticed, i thought it was all in my mind. But it s not. Weakness is apparent. I am way better than pre op as far as it concerns brain issues. Also my arms are better. Go figure...
__________________________________________________________

http://www.thisisms.com/ftopic-14005-da ... sc-60.html

Good luck.
http://www.thisisms.com/ftopict-14005.html
Last edited by costumenastional on Mon May 09, 2011 9:46 am, edited 12 times in total.
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Postby willm » Mon May 17, 2010 6:57 am

MS HISTORY
Name : willm
Male/Female: Male
Age: 49
Date & type of neurological diagnosis: Diagnosed PPMS September 2007 (first symptom 1998)
Lesion locations: Unknown
MS treatments:
Baclofen (45 - 60 mg per day)
LDN (4.5 mg per day)

MS symptoms before stenosis intervention:
Progressive weakening of legs and stomach muscles
Spasticity in legs
Physical fatigue
Urinary urgency
Heat Intolerance
Cold hands and feet

Number of relapses before intervention: NA
EDSS before CCSVI intervention: 5.0 (self assessed)
FSS before CCSVI intervention: 6 (self assessed, 90% physical)
MSIS before CCSVI intervention: 90 (self assessed)
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: 05/12/2010 - Euromedic, Katowice, Poland
Type of venographic study: MRV, Doppler and X-Ray Venography

Diagnosis:
Left IJV: Constriction in vein at base restricting flow - vein dilated above
Right IJV: Malfunctioning valve at base restricting flow - vein dilated above
Azygos Vein: No problems observed

Type of procedure: Balloon angioplasty to constrictions in left and right IJVs

Procedure/drug related symptoms: None
Number of relapses since first CCSVI intervention: NA

Impact on your MS symptoms:

05/17/2010
No change
EDSS as of this update: 5.0 (self assessed)
FSS as of this update: 6 (self assessed)
MSIS as of this update: 90 (self assessed)

05/26/2010
No change
EDSS etc as above

06/16/2010
No change
EDSS etc as above

08/19/2010
No change
EDSS etc as above

11/22/2010
No change
EDSS etc as above
Last edited by willm on Mon Nov 22, 2010 7:21 am, edited 5 times in total.
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CCSVI TRACKING continued

Postby Olive » Mon May 17, 2010 8:29 am

CCSVI TRACKING [Please use date format 5/11/2010]

MS HISTORY
Name: Olive/Soond777
Male/Female: F
Age: 39
Date(s): first MS symptom 1993, diagnosed 1994 with RR.
Still RR before treatment
Lesion locations (most affected side, if known), number:
no idea how many, but saw lots smallish plaques all over
white matter in 2007 (MRI)
MS treatments: Copaxone, 1yr then break to have baby, then 12 mths
after baby
MS symptoms before stenosis intervention:
Year 1: went indoor rock climbing, next day fingerstips and toes were numb, spread up to both knees during day, function fine just sensory. This passed after say 2 weeks.
Year 3: awoke blind in left eye, this cleared after 1 day gradually returning to normal.
Year 10: left arm useless, could feel some sensation but unable to move from upper arm down with hand. Expereinced drop foot in left foot, especially coming down stairs. Came back to normal after 2-3wks

left leg stiff and foot not responding as well

Number of relapses before intervention (if applicable): 1-3 per year
EDSS before CCSVI intervention (self-assessed): 1.0
FSS before CCSVI intervention: 1.67
MSIS before CCSVI intervention: 34 out of 145

Are you using Inclined Bed Therapy I.B.T?: Y since 6mths

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: 11th May 2010
Type of venographic study: MRV, Doppler (both)
Diagnosis: Dopplar implied both sides, but left side worse, MRV showed
stenosis (I think, do have scans)
Type of procedure: PV (percutaneous venography) on the left side only. Venography of right side too, but no need for PV here.
"Percutaneous balloon angioplasty of the left varotid vein
(balloon Invatec 12x40, Cordis 14x40)"

Procedure/drug related symptoms: none at day 6
[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):

Day 1: after operation had very warm hands (unusual)
Day 3: walking better
Day 5: walking much more fluid
Day 10/11: walking into town and around in hot weather and no longer
feel I have MS!
Day 13: left leg still needs to be used to regain lost strength and tone.
Speech much better (no longer see people not being able to
understand my speedy, garbled speech!)

7 MONTH UPDATE:

Feeling very good still.
Speech much better except when I'm tired, but I have to control it/the speed!
Leg only stiff in cold weather (recently)
Hand normally cold again as they have been all my life
Feeling very optimisitic for my future now as something CAN help MS!!
Have not restarted Copaxone since Poland and feel much better for losing that constant reminder too..... :(



EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
Last edited by Olive on Sun Dec 12, 2010 8:50 am, edited 9 times in total.
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Postby alanbrowne » Tue May 18, 2010 5:53 am

CCSVI TRACKING 18/05/2010

MS HISTORY
Name: Alan
Male/Female: (M)
Age: 43
Date(s) & type of neurological diagnosis 2001 diagnosed with RRMS, no more problems until 2008, now diagnosed SPMS.
MS treatments: LDN for 18 months, Amatriptyline at night.
MS symptoms before stenosis intervention: Numbness in hands and legs, bad fatigue after any exercise, weak/cold left leg, walk with stick only for about 50m before resting.
Number of relapses before intervention 0 (never really had a relapse)
EDSS before CCSVI intervention ranges between 6.0
FSS before CCSVI intervention:
Are you using Inclined Bed Therapy I.B.T? N

Have you had testing (and possibly procedure) for blockage yet: Y Poland 11/05/2010
STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 10/05/10 - 15/05/10 Tychy Poland
Type of venographic study: (MRI, Doppler)
Diagnosis: CCSVI right jugular vein completely blocked, left jugular vein 50% blocked
Type of procedure: angioplasty left jugular, stent right jugular

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):
4 Days post procedure
Warm left foot
Lhermitte gone
Left leg spasm gone
Brain clearer
Much improved fatigue

Update 1 month post-procedure
Fatigue vastly improved, virtually gone
Walking seems to be improving gradually, some days there is no foot drop at all and I can walk "normally", but this comes and goes
Last edited by alanbrowne on Wed Jun 16, 2010 1:37 am, edited 1 time in total.
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DevinH CCSVI TRACKING 05/17/10

Postby devinhubbard » Tue May 18, 2010 11:17 am

CCSVI TRACKING 05/17/10

MS HISTORY
Devin Hubbard
Male/Female: M
Age: 27
Date(s) RRMS
Lesion locations (most affected side, if known), number:
MS treatments: Rebif, gluten/dairy free diet, supplements like vitamin D and Nattokinase
MS symptoms before stenosis intervention: double vision, facial paralysis, hyper skin sensitivity, balance problems, brain fog, fatigue, headache.
Number of relapses before intervention (if applicable): 2
EDSS before CCSVI intervention - n/a
EDSS rating - n/a
FSS before CCSVI intervention: n/A
MSIS before CCSVI intervention: n?A
Are you using Inclined Bed Therapy I.B.T? (N)

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

STENOSIS PROCEDURE HISTORY

05/07/10/omitted/balloon angio on both jugulars and azygous
Type of venographic study:Haacke Protocol MRV, Hubbard Venous Undershoot Test
Diagnosis:
Type of procedure: /balloon angio on both jugulars and azygous
Procedure/drug related symptoms: small bruise two days

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): brain fog, double vision, fatigue gone. Mild l-hermitte
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update: 29
Devin Hubbard<br />devinhubbard@mac.com<br />
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Johnson on the CCSVI tracking project

Postby Johnson » Thu May 20, 2010 2:29 am

CCSVI TRACKING

05/17/2010 - Pre-procedure

08/04 2010 - UPDATE after procedure
10/08 2010 - 2nd procedure

MS HISTORY

Johnson

Male

Age: 48

RRMS - Spring 1993 to Summer 2009,
SPMS (self-diagnosed) Summer 2009 to present

Lesion locations: Many lesions bilaterally in White Matter. None observed on brain stem or spine.

MS treatments: Meditation, Homeopathy, Acupuncture, Massage Therapy ("regular" and Cranio-sacral), Cannabis Sativa, Vit. D3 @ 0 IU/day, fish oils @ 5-10 grams/day, Vitamin E8 @ 1200 IU/day, selenium, zinc, magnesium, grape seed extract (anti-inflammation), turmeric, MSM, Green Tea Extract, various other supplements, positive attitude, etc.

MS symptoms before stenosis intervention:

Visual; Optic neuritis on left side (light perception only), Nystagmus, Diplopia, Oscillopsia, blurry vision, tired, dull eyes, scintillating scotoma? (neon purple grids in visual field), "translucent" spinning disc in central vision in low light (green/white), sensitivity to bright light and fluorescent light.

Sensory/physical; vertigo/falling to right, random numbness, "pins and needles", very sensitive hands, sensitivity to cold (hands numb, and shivering below 60 Fahrenheit). "icy" patches on cheeks, twitching eyelids, occasional mild spasms in thighs, deaf in right ear, with screaming tinnitus, mild dysphagia, apraxia, aphasia, tight head band ("MS HUG" on head?), headaches, feeling of hand around throat, severe weight-loss, extreme fatigue, developing spasticity in legs since May 1st, a happy depression, increasingly emotional, cognitive problems...



Number of relapses before intervention: >40

EDSS before CCSVI intervention self-assessed - 1.5 March 2010
5.5 May 2010
physician-assessed - 2.5 (Feb. 2010)

Sept. 2010 - 5

FSS before CCSVI intervention: 6.5
:6

MSIS before CCSVI intervention: Dec. 2009 - 86... May 2010 - 118
Sept. 2010 - 110


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

Have you had testing for blockage yet: Y - @ False Creek, Vancouver, March 2010

Stenosis at ~jaw level both IJVs, and in the ~supra-clavian region both IJVs. Azygous not definitively imaged

STENOSIS PROCEDURE HISTORY Done! X 2

Date/location of testing/procedure: June 8, 2010 - Katowice, Poland
Oct. 8, 2010 - Katowice


Type of venographic study: MRV (3T, no contrast), Doppler, venogram
Oct. 2010 - Doppler US, venogram



Diagnosis: Same as above

Type of procedure: Balloon venoplasty

Procedure/drug related symptoms: 7 small bruises on abdomen from Fraxiparine (blood thinner) injections. Small (1 cm) bruise at incision site.

[Repeat this section - there has been more than one procedure]

Number of relapses since first CCSVI intervention: no "relapses", but old symptoms (constant) slowly returning.
Having relapse 3 weeks after second procedure and after increasing anti-bacterial medication.


Impact on MS symptoms in words:

EDSS as of this update: June 9, 2010 (one day after venoplasty): 1.5
August 4, 2010: 4.0 (self-assessed)
Sept. 2010 - 5



FSS as of this update: 3
Oct. 28 2010 - 4

MSIS as of this update: 66
Oct. 2010 - 90

More to come; still working on report, and will be returning in Autumn to Poland for 2nd balloon venoplasty...

Returned to Katowice for second procedure October 8, 2010 - 4 months to the day. I was even in the same room, in the same bed. The experience was quite different this time, in many ways. At my request, the doctor used bigger balloons (18 mm), higher pressure inflation (8 atmospheres) for longer (8 minutes), but a stent was recommended - which I declined. He said that he would use a cutting balloon, but they don't make them big enough.

I was slightly ill with a cold when I left, and it got worse before and after my procedure. I received little notable benefit this second time. I won't seek another procedure, unless with Dr. Sinan or Sclafani, and then, only after I have tested the anti-bacterial protocol that I have undertaken. I will not take a stent until it is designed for use in the jugular, and is bio-absorptive.

I maintain that the procedure was very beneficial to me, if not a permanent solution.


Images, medical reports, etc.


Click herefor videos of procedure, Doppler images before, video of spasticity before, etc.
Last edited by Johnson on Fri Oct 29, 2010 1:35 am, edited 6 times in total.
My name is not really Johnson. MSed up since 1993
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Postby esta » Fri May 21, 2010 12:15 pm

MS HISTORY

Name:_esta
Male/Female: (M/F) F
Age: 60
Diagnosed in 1980, typical book case, now since severe car accident 5 yrs ago PPMS. In a wheelchair. Mostly left side, but now right side getting weaker too

MS HISTORY
-optic-neuritis damage – right eye – blind spots
-left eye-torn retina from car accident-now, just so damaged its basically blind. I can see a bit, but everything has a brown haze and blind where i focus.
MY HEALTH HISTORY AND CURRENT PROBLEMS :--
diagnosed after my son was born, all the usual symptoms. i have had one MRI 12 years ago. Never had a spinal tap. Went to alternative medicine after too many rounds of prednisone and all the side effects. Did naturopathy, acupuncture, traditional chinese medicine, and currently homeopathy.
brain fog, headaches every morning before i get up. My hair even hurts to touch somedays
-bladder good due to homeopathy. Depending on how deep i sleep, don't have to go, or just once, then i don't get back to sleep, just doze.
-night sweats around 2 or so, can't get back to sleep
Bowels grossly constipated, always have to take a natural remedy
-stiff, sore whole body, mostly hips, shoulders, neck back too
-legs from waist down freezing cold in evening, even wrapped in comforter and blanket on top plus socks. Can't get warm, its like i'm insulating the cold to stay in.
-hands cold too mostly right one.
-left foot drop, few months ago. Legs spasm when i get up from recline position.
-feet swollen and very purple

My main complaint lately is i am getting weaker everywhere, and loosing my motor skills rapidly. Over the last year or so, i am having trouble in the pool walking, painting, typing, combing my hair, using electric toothbrush, holding a pen, recent memory problems
-low blood pressure and heart beat
-fingernails lots of ridges, especially left thumb.
-lots of liver spots on arms
-boils
-hearing worse, ears always ringing
I don't do doctors, am now into homeopathy for the past 5 years. No drugs.

IBT: Y 7” 02/2010
instantly I could breath deeper
it took me 2 weeks to get mostly rid of the aches and pains-back, hips, neck . shoulders, sleep much sounder, very vivid dreams , hardly go to the bathroom during the night

update sept 11/2010
back to 4" 5/9/10 after stent placement 26/8/10 - legs still purple/cold r hand
[/b]
STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 06/05/2010, Katawice, Poland

2nd procedure 26/08/2010 received stent, RJV, katowice, Poland


Type of venographic study: MRV, Doppler plus eye exam and blood test
Diagnosis: RJ stenosed
2nd time just doppler and venography. entered from left side, due to fear of iliac vein problems because of swollen feet

2nd time-on blood thinner and asprin for 1 year, then just asprin

Type of procedure: Angioplasty only
2nd time stent
Procedure/drug related symptoms: also incurred -atrial fibulation during procedure
2nd time no prolems with heart
Number of relapses since first CCSVI intervention: NONE/SAME 2ND TIME
although all my old symptoms returned within 4 weeks after angioplasty

DAY 1- warm hands and feet 70% -still purply but warm
DAY 2- brain fog 80% gone, stronger legs 30%improved, speech improved 60%
2 WEEKS LATER - brain fog gone, cold hands and purple feet gone, fatigue gone, speech impairments gone!
EDSS as of this update (self-assessed at 8.0 - down by .5) (NOT DONE 2ND TIME)
FSS - was at 6 - now I have way less fatigue, self assessment too soon to judge - as i am still limited in what i can do, just not limited by fatigue
(NOT DONE THIS TIME)
2 WEEKS LATER 2nd time: -slower recovery,
purple feet and cold r hand still,
brain fog gone
pain subsiding
legs stronger
fatigue not as strong
hand coordination is coming, strength is better
slurred speech gone
stronger voice
bereath stronger

1 MONTH UPDATE - 2ND PROCEDURE
-great news -BP is more normal than its ever been 113/78; its always been a joy if its even 90/60
-feet pinky. R hand still cold, but not freezing
started pool exercising-paying price, still unbelievably sore neck and arms
-fatigue less each week, but i'm tired, so i rest more ?????
-went back to pool where i walk in the water my legs hold easy, but neck and shoulders are killing me -this next month deeper water, more leg movement.
-hands better, still claw, but stronger each week-unhooked dog leash, took off coat - first time in well over a year, maybe 2.
-so clear in my head-feel so much happier, going forward, not backward

.
Last edited by esta on Thu Sep 23, 2010 11:08 am, edited 7 times in total.
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Postby ankro » Sun May 23, 2010 1:07 pm

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

MS HISTORY
Name (if want to give other than TIMS login name): Ankro, I think one of the first Norwegian people liberated.
Male/Female: (M/F) Female
Age: 41
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other):november 1993 RRMS, may 2008 SPMS(own evaluation).
Lesion locations (most affected side, if known), number: The plaques are situated in the left side of the brain. Two plaques in the spine.
Right side leg , foot, arm, hand very weak. I am not sure about this, but I had 15 - 20 spots one year ago.
MS treatments : Rebif 06.2008 - 10.2008 Ended this because of sideeffects. 12.2008 tysabri . I am still on Tysabri
MS symptoms before stenosis intervention:
May 2008: I had a huge exacerbation. Before that, I could walk between one and two km. I had a job with lots of walking and standing. My biggest problem then, was fatigue. In october 2006 I had a son. That was a bigger strain than I had expected

Now I Can walk ca. 500 metres unassisted. But it is a lot of work. Mild fatigue, numb hands and feet. I am feeling much sicker after may - 08 than I did before.
Number of relapses before intervention (if applicable): ca. 10 - 14. I was going to university, and before each exam, I had new symptoms or old symptoms flarring up. ( Intense reading for three months with my neck bent. Increased pressure on my neckveins?).
I also have problems with my bladder. It is almost impossible to empty it properly. Cystitis almost all the time.

EDSS before CCSVI intervention (self-assessed or physician-assessed? 4,5 neurologist assessed.
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandedd ... scale.html ]
FSS before CCSVI intervention: 6,0
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]
MSIS before CCSVI intervention: 63
[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, started when I came back from Frankfurt.

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: 27.04.2010, Frankfurt, Dr. Vogl
Type of venographic study: (MRV, Doppler) MRV
Diagnosis: Right jugular 30 - 50 % narrowed. He measured that there was a difference in pressure over and below the narrowing. Therefore he decided to open up with a balloon..
Type of procedure: balloon angioplasty
Procedure/drug related symptoms:
[Repeat this section if there have been more than one procedure]

Number of relapses since first CCSVI intervention: None
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates): three hours after the procedure my face, my hands and feet were very warm. My face is still warm after two and a half weeks. My hands and feet not so much at daytime. But in the mornings when I wake up, my feet and hands are burning.
My bladder has changed. I feel like it`s easier to empty. I am only up once a night. Used to be up two or three times. And it was often painful.
• My pelvis has not been straight for the last six or seven years. Now I feel like I am more “straight”.
• My right leg has been weaker than the left leg. Now something is changing. I can manage to bend only my right leg with my knee against the floor, and I almost manage to get up again. That`s incredible!
• My bladder has changed. I feel like it`s easier to empty. I am only up once a night. Used to be up two or three times. And it was often painful.

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 tellum » Thu May 27, 2010 11:01 am

[Quote = "mags4short"] CCSVI Seuranta 01.5.2010

MS HISTORIA
Nimi: Margaret
Mies / Nainen: (F)
Ika: 45
Päivämäärä on (t) JA tyyppi neurologinen diagnoosi 2001 diagnosoitu RRMS vuosien Ajan oireiden
MS hoitoja: Copaxone - 6 VUOTTA, Rebif-2 VUOTTA, ERI tabletit väsymys, kipu bannerivaihto.
MS-taudin oireet före ahtauma interventio: kipu niska, tunnoton hartia Käsivarren JA käsi vasemmalla puolella, menetys Tunne alempi jalat, lila jalat, kylmät kädet JA jalat, tasapaino Kysymyksiä, kipu, virtsan Kysymyksiä, vapina, väsymys, koneisto sumu, näköhermon tulehdus, muistiongelmia SANA löytää bannerivaihto. Myös huonokuuloisille käyttää kahta kuulolaitteet, erittäin välinpitämättömästi korkea kentillä, mutta Voi hoitaa kuulokojeiden kanssa, vaikka vaikeaa meluisissa ympäristöissä, on Tunne, Etta TÄMÄ liittyy?
Lukumäärä pahenemisvaiheita före interventio vaihtelee vuosittain, mutta arkipäivän oireet ovat ongelmallisempia kahden viime vuoden AIKANA, Lähinnä tasapaino, kipu JA menetyksen Tunne aseita / käsissä
EDSS före CCSVI interventio vaihtelee 5,5
FSS före CCSVI interventio: 2,2
Käytätkö kallistettu Bed Therapy I.B.T? Y

Onko se sinulla ollut testaus (ja mahdollisesti Menettely) tukoksia vielä: Y Puola 05.4.2010
Ahtauma AASIAN HISTORIA

Date / sijainti testaus-Menettely: 5/5/10
Tyyppi venographic TUTKIMUS: (MRV, doppler)
Diagnoosi: CCSVI vasen kaulasuoni
Menettelyn laji: pallolaajennus vasen kaulavaltimoa

Lukumäärä pahenemisvaiheiden julistamisen jälkeen ensimmäinen CCSVI interventio: 0
Vaikutus MS oireita Sanat (sisältää päivämäärä on suluissa JOS on useita päivityksiä):
Viikko post Menettely ... päivittää kuukausittain
Parempi tasapaino
Lammin kädet JA jalat
Enemmän energiaa [/ quote]

Mikä on tilanne nyt myöhemmin?
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hei

Postby tellum » Thu May 27, 2010 11:06 am

[Quote = "esta"] [b] MS historia [/ b]

Nimi: _esta
Mies / Nainen: (M / F) F
Ikä: 60
Diagnosoitu 1980, tyypillinen kirja tapauksessa, nyt sillä vakava auto-onnettomuus 5 v. sitten ppms. Pyörätuolissa. Enimmäkseen vasemmalla puolella, mutta nyt oikealla puolella saada heikompi liian

[B] MS historia [/ b]
-Optiset-tulehdus vahinko - oikea silmä - sokeita pisteitä
-Vasen silmä runtelemassa verkkokalvon auton onnettomuus-nyt, juuri näin vahingoittanut pohjimmiltaan sokea. Näen vähän, mutta kaikki on ruskea auer ja sokea kun olen keskittyä.
[B] MINUN terveystiedot ja ajankohtaisista ongelmista: - [/ b]
diagnosoitu jälkeen poikani syntyi, kaikki tavanomaiset oireet. minulla on ollut yksi MK 12 vuotta sitten. Ei ole koskaan ollut Spinal Tap. Meni vaihtoehtoinen lääketiede jälkeen liian monta kierrosta prednisonia ja kaikki sivuvaikutuksia. Oliko Naturopatian, akupunktio, perinteinen kiinalainen lääketiede, ja tällä hetkellä homeopatia.
aivot sumussa, päänsärkyä joka aamu ennen nousen. Hiukseni edes kipeää koskea somedays
-Rakon johtuen hyvä homeopatiaa. Riippuen siitä, miten syvä nukun, ei tarvitse mennä, tai vain kerran, niin en saa takaisin nukkumaan, vain torkkua.
-Yöhikoilu noin 2 tai niin, ei voi saada takaisin nukkumaan
Suoli törkeän ummetusta, on aina otettava luonnon korjaamiseksi
-Jäykkä, kipeä koko kehon, lähinnä lonkat, olkapäät, niska takaisin liikaa
-Jalat vyötäröstä alaspäin pakkasta ilta, vaikka kääritty lohduttaja ja huopa päälle ja sukat. Ei voi saada lämmin, sen kuin olen eristävät kylmä jäädä tuumaa
Hands kylmä liian enimmäkseen oikea.
-Vasen jalka pudota, muutama kuukausi sitten. Jalat kouristus, kun saan ylös kallistaa asema.
-Jalat turvoksissa ja erittäin purppura

Pääasiallinen valitukseni tapahtumat on Saan heikompi kaikkialla, ja menettää minun motorisia taitoja nopeasti. Viime vuonna tai niin, Minulla on ongelmia altaaseen kävely, maalaus, konekirjoitus, kampaus hiukset käyttäen sähköhammasharjalla, kädessään kynä, miesmuistiin ongelmia
-Matala verenpaine ja syke
-Kynnet paljon harjuja, varsinkin vasen peukalo.
-Paljon maksaläiskiä aseita
-Kiehuu
-Kuulo huonompi, korvat aina soittoäänet
En tee lääkärit, nyt olen osaksi homeopatian viimeiset 5 vuotta. Ei huumeita.

IBT: Y 7 "02/2010
heti voisin hengitys syvemmälle
Kesti 2 viikkoa päästä useimmiten eroon kivut ja säryt, selkää, lantiota, kaula. olkapäät, nukkua paljon kaikuluotain, hyvin eloisia unia, tuskin mennä vessaan yöllä

[B] ahtauma ASIAN HISTORY [/ b]

Date / sijainti testaus-menettelyn: 06.05.2010, Katawice, Puola

Tyyppi venographic tutkimus: MRV, Doppler sekä näöntarkastus ja verikoe
Diagnoosi: RJ stenosed

Menettelyn laji: pallolaajennus vain

Menettely / huumeisiin liittyvistä oireista: Myös aiheutuneet-eteisen fibulation aikana menettelyssä
Lukumäärä pahenemisvaiheiden jälkeen ensimmäinen CCSVI interventio: EI

DAY 1 - lämmin kädet ja jalat 70%, silti purply mutta lämmin
Päivä 2 - aivojen sumu 80% mennyt, vahvempi jalat 30% parempi, puhe parani 60%
2 viikkoa myöhemmin - aivot sumussa mennyt, kylmät kädet ja violetti jalat poissa, väsymys poissa, puhevammaisia mennyt!
EDSS koska tämän päivityksen (itse arvioitu 8,0 - alas 0.5)
FSS - oli 6 - Nyt olen niin vähemmän väsymys, itsearvioinnin liian aikaista arvioida - olen edelleen vähäistä, mitä voin tehdä, mutta ei rajoita väsymys [/ quote]


How are you now later?
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Postby StentorKate » Thu May 27, 2010 3:28 pm

MS history
Name: Kate (Female)
Age: 51
RRMS - diagnosed in 1979
Lesions primarily in brain (limbic and basal ganglia) and cervical spine.

Testing:
Mylogram spinal tap 1979
CT scan 1979
MRI 1999, 2003, 2010
VEP 1999
Poland 2010 Doppler Ultrasound, MRI, Venogram

Meds:
ATCH in 1979 and 1980
Copaxone 1999 - 2005
Rebif - 2005
Since then nothing - side effects too severe and benefits not existent.

Vitamin D - 4,000 IU


MS symptoms:
optic neuritis for 4 weeks in 1979 - nothing since
Weakness left leg, l'hermittes - since 1979
left leg foot drop, balance issues, cold hands and feet since 1999
bladder weakness, numb and tingling hands, fatigue since 2008
Severe flare up in Jan 2010 caused problems swallowing, losing words- (brain fog)

EDSS before CCSVI intervention (self-assessed or physician-assessed? 6.0 neurologist assessed.
FSS before CCSVI intervention: 6
MSIS before CCSVI intervention: 46
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: 15.05.2010 Tychy Poland Dr. Kostecki
Type of venographic study: MRI, Soppler and Venogram
Diagnosis: in the LIJV there was no evidence of any significate stenosis. The lower portion the pathological valve was noted with a signification decrease of the flow. The right side no stenosis and no significant decrease in flow. Collateral circulation via the thyroid gland and anterior veins of the neck was noted especially on the right side. There was normal flow in the left vertebral veins both in the upright and supine position - on the right side in the supine position there was an increase in the flow.
Examination suggested CCSV

Type of procedure: balloon angioplasty - left side was ballooned 4X before a Cordis S.M.A.R.T. Control Stent was placed.
Procedure/drug related symptoms: bruising due to blood thinners, nti-coagulatants - to be expected.
Number of relapses since first CCSVI intervention: None
Impact on your MS symptoms in words: Immediately noticed warm feet and hands.
- so far the brain fog and most of the fatigue has disappeared.
- Although the top section of the thumb and my little finger on the right hand are still numb, the tingling has almost gone away and the flexibility and strength are far better than before.
- I have much more control over my bladder and bowel
- the swallowing is much better
- The l'hermittes is gone.

I hoped my hand and foot temperature, swallowing and fatigue would be resolved. My expectations were exceeded.

EDSS as of this update (self-assessed) too soon to judge
FSS as of this update:
MSIS as of this update:

I think it is CRITICAL to go into the procedure, if you are having it done, with realistic expectations. Several people I know have not had their expectations met, unrealistic or not, and and are totally devastated - not good for your mental health and not good for your recovery.

Update - July 13, 2010 - 2 months

-Still have warm feet and hands.
-the brain fog and fatigue are much better.
-Able to sleep through entire night
-Hand flexibility and strength are far better than before. (Can twirl a whole plate o spaghetti instead of cutting it up)
-Tingling in my hands is gone, although the sensitivity has not come back in the fingertips
- I have much more control over my bladder and bowel
- the swallowing is much better
- The l'hermittes is gone.
-Balance is much better - I can wash my hair with both hands and my eyes closed in the shower - don’t need the grab bar.
-Can balance on right leg for 1minute+, left is about 10 seconds and getting better as time goes on - was not able to balance on either leg before.
-Walking is still not great - foot drop etc. left leg, but the balance and fatigue are better so I can walk further and longer- still not pretty but I get there!
-Have not had a migraine since May 15 - was getting 2-5 per month before. Will wait until winter because bizarre weather make my head worse, but I am encouraged.
-Strange occurrence and not that welcome but my GP thinks it might be evidence that I am becoming more “normal” - I am getting menopausal hot flashes about 5-15 times a day. I entered menopause about a year or so ago and besides the odd acne breakout, had no symptoms. Now I’m getting hot flashes! Strange!

Follow up Doppler in Calgary - June 27
On the 27th of June I had an appointment at the Sunridge Diagnostic Imaging Center in Calgary CANADA for a followup "Surveillance Doppler" Blood flow was checked in all the neck veins - all good and stent placement was also checked.
The technician doing the doppler followed some type of protocol that was written down, she kept referring to it. After the test she brought in Dr. Steed, one of the owners of the Center and one other doctor, who was not introduced. Dr. Steed looked at the pictures on the screen and was extremely interested. I was apparently the first post -op patient with a venous stent that he had seen at his clinic. I'm not 100% sure of his background, but he said he used to place stents 10-15 years ago and this one looked very good, had been totaly incorporated into the vein and the placement was "textbook". Very happy about that and have requistions for follow up in September and January. Received the report and CD of the images which has been forwarded to Poland. Plan to visit Dr. Kostecki in Poland at around the one year date - May 2011.
Last edited by StentorKate on Tue Jul 13, 2010 11:13 am, edited 1 time in total.
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Angioplasty 26th May 2010

Postby smokey » Fri May 28, 2010 12:08 am

MS HISTORY

Name: Smokey

Male/Female: F

Age: 55 Diagnosis August 2009

Date(s) & type of neurological diagnosis: CIS/RRMS?

Lesion locations: number: 5

MS treatments: Avonex, Lexapro

MS symptoms before stenosis intervention:
ON in LEFT eye/dizziness/heat intolerance/LEFT side of face feels slightly odd-numb/some pins and needles in hands and feet occasionally.

Number of relapses before intervention: 0

EDSS before CCSVI intervention:
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandedd ... scale.html ]

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

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

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

Have you had testing for blockage yet: Y

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 26.05.2010

Type of venographic study: Initially doppler followed by venogram

Doppler found stenosis in RIGHT jugular x 2

Type of procedure:
Venogram. Stenosis found in LEFT jugular x 2m but not in right jugular, despite the results from the doppler or azygos. Balloon angioplasty performed. This is why is it so important to go beyond doppler for accurate results.

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):
Strange feeling in left side of face disappeared immediately. No other changes to date. Too early to judge.

EDSS as of this update:

FSS as of this update:

MSIS as of this update:

2nd June 2010
Far less fatigue. I didn't realise how fatigued I felt until this symptom ceased. Pins and needles significantly decreased. Odd feeling in left side of face decreased. Eyesight improved. Not sure about heat intolerance as yet, heat and exercise still affecting vision. No headaches.
Last edited by smokey on Sun Jun 13, 2010 8:00 pm, edited 1 time in total.
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Postby Justliberated » Thu Jun 10, 2010 1:41 am

Just liberated

Male

Age 36

PPPMS, most lesion in lower brain, cerebellum. I can give a number but I now that they are not particulary prominant and my neurologist had difficulties in diagnosing me.

My sympyoms before liberation fatigue, brain fog and foot drop.

EDSS before liberation 4.5 (self assessed).

Before going to Bulgaria I went to see Crowe, who did a doppler and MRV. He told me I had nothing wrong with my veins.

02/06/10 – Sofia Bulgaria

Doppler and venography.

CRITICAL stenosis in right jugular and azygous (50 – 75%) and minoe stenosis in left jugular (20 – 30%).

Angioplasty in all three veins. No stenting.

My brain fog went immediately. My EDSS was assessed by a neurologist as 3.5 the next day.

7 days after the treatment, I feel fantastic; have walked 1 Km and held conversations for 4 hours without becoming tired and needing to retreat to a cold dark room! My little girl (3) no longer runs circles around me. I had forgotten what hope for the future feels like.

I think my EDSS may be down to 2.5 7 days after liberation (self assessed.
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Re: CCSVI tracking project-POST PER P.1 FORMAT ONLY

Postby tipsyturtle » Sun Jun 13, 2010 3:22 pm

CCSVI TRACKING [10/06/2010]

MS HISTORY
Name Jo (TIPSY TURTLE)
Male/Female: F
Age: 44
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RR 1987
Lesion locations (most affected side, if known), number: don't know

MS treatments: have refused all meds- including steroids. Take supplements recom'd by naturopaths, do reg. Massage, tried accupuncture.
MS symptoms before stenosis intervention: Fatigue, fatigue, balance issues, heavy legs, walking with limp when tired, right hand numb, dizziness/vertigo.

Number of relapses before intervention : not sure but the long term impairment has happened over the past 4 years. Last relapse was January 2009.

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


Are you using Inclined Bed Therapy I.B.T? (Y/N) YES but only 3 inches

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: April 8, 2010 Katowice, Poland
Type of venographic study: (MRV, Doppler) both
Diagnosis:
Type of procedure: angioplasty right and left jugulars, one stent left side

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):

Initially, major improvement in fatigue, walking gait improved, balance better, started regaining feeling in right hand- handwriting improved, morning stiffness improved, no more cramping in legs, felt like I was given my life back- very euphoric, dizziness much better.

(June 10, 2010)
Initial improvements have abated slightly, still hopeful,

EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
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