CCSVI tracking project-POST PER P.1 FORMAT ONLY

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

Postby lilaclomax » Wed Mar 03, 2010 9:20 am

CCSVI TRACKING 03/03/2010

MS HISTORY
Name: Lilaclomax
Male/Female: F
Age: 32
Date & type of neurological diagnosis: RRMS - since 2006
Lesion locations (most affected side, if known), number: Multiple lesions in cerebral hemispheres, lesion in right temporal fossa (potentially unrelated). Changes in L. 1/2 and 3/4 discs.
MS treatments: Avonex
MS symptoms before stenosis intervention: Optic Neuritis (loss of sight in left eye), L'hermittes (electric shocks down my back), Paresthesias (loss of sensation in multiple locations), Myelopathic exacerbation (weakness and inability to walk at times), fatigue, Trigeminal Neuralgia (labour pain in my right hand side of my jaw!), Diplopia (seeing double)... typing these out makes me sounds like a walking medical directory.
Number of relapses before intervention: 8
EDSS before CCSVI intervention (physician-assessed): 3.0
FSS before CCSVI intervention: 5.5
MSIS before CCSVI intervention: 71
Are you using Inclined Bed Therapy I.B.T? Y

Have you had testing (and possibly procedure) for blockage yet: Yes, both testing and Liberation Treatment

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 17th March, Katwice, Poland

Type of venographic study: MRV, Doppler

Diagnosis: Stenosis right and left jugular vein

Type of procedure: Percutaneous nalloon angioplasty right and left jugular vein (Cordis 14 x 40mm)

Procedure/drug related symptoms: Procedure took around 45 mins and was painless, Fraxiparine prescribed for 7 days. No pain after procedure, some aching in neck where ballooning took place.


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): (18/3/2010) To date feeling of warmth all over although this could be related to the IV from surgery. The fatigue has dissapeared and my double vision takes longer to appear.

(1/5/2010) Wow - has it been this long! The fatigue is non-exsistant, the double vision is always in the background but doen't make an appearance unless I have had a long day at work and even then it clears up after a couple of hours of relaxing.
I have had no other symptons and the feeling has returned in the thumb and first two fingers on my left hand. My ring finger and little finger still have a 'tingling' feeling but at least I can now feel what I am picking up.
I am still not taking any DMDs or other medication.

(2/6/2010) I have to hold my hands up... I have not been on this forum for a few weeks now, is this what happens when you get most of your life back? I am now back at work full time which for me says it all really, I have not noticed any new symptons and my fatigue has completely gone. My hands and legs work without any problems and even though I have not regained all the feeling in my ring and little finger on my left hand I have complete use of my hand.
The double vision is still an issue if I am hot or have done lots of exercise but (and this is the best part) it goes away by itself within half an hour of inactivity.
CCSVI - has it worked for me? So far so good, I know that I am only approaching the 3 month mark, yet just having 3 months of not even thinking about MS was worth the treatment... I just hope that I remain stable xx

EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
Last edited by lilaclomax on Wed Jun 02, 2010 4:52 am, edited 3 times in total.
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Tracking Sophie

Postby sophie » Thu Mar 04, 2010 4:25 am

CCSVI TRACKING

MS HISTORY
Name: "Sophie"
Male/Female: F
Age: 31
Date(s) & type of neurological diagnosis: RRMS on 11/29/2009
Lesion locations (most affected side, if known), number: 11, not sure where.left more affected
MS treatments: Swank Diet, food supplements
MS symptoms before stenosis intervention:
- Numbness in legs, arms
- Optic Neuritis
- Faitigue
Number of relapses before intervention (if applicable): 2
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 0-0.5, self assesd
FSS before CCSVI intervention: 5
MSIS before CCSVI intervention: 58

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

Have you had testing (and possibly procedure) for blockage yet: Y; Katowice 03/10-11/2010

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 03/10-11/2010, Dr. Simka, Euromedic, Poland
Type of venographic study: MRV, Doppler
Diagnosis and phlebography of the Jugular veins.
Type of procedure:The phlebography showed insufficiënt reason for further treatment; no balloning or stents took place. The bloodflow could be improved do to only the phlebography alone according to Dr. Simka. (Previous test showed narrowings in my left and right veins).

Procedure/drug related symptoms:
After the phlebography my neck was swollen.

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):
03/21/2010

- Lots of energy; I'm working, exercising and takeing care of my 3 kids
- Pain in my eyes is gone
- Sight improved (the "fog" is gone)
- The funny feeling/numbness in the legs is diminished to almost nothing

EDSS as of this update (self-assessed or physician-assessed?)0
FSS as of this update:0
MSIS as of this update:
Last edited by sophie on Sun Mar 21, 2010 1:06 pm, edited 1 time in total.
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Postby Donnchadh » Fri Mar 05, 2010 9:25 am

CCSVI TRACKING 03/05/2010

MS HISTORY
Name (if want to give other than TIMS login name): Donnchadh
Male/Female: (M/F) M
Age: 61
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): 06/27/2003 MS; 03/08/2005 Chronic Cervical Myelopathy; 02/04/2010 PPMS
Lesion locations (most affected side, if known), number: MRI 05/16/2003 results. Chronic bilateral cerebral periventricular MS plagues; not active. Abnormal signal within the cervical cord at the C2 and C3 vertebral body levels.
MS treatments: B12 injections, recommended 3,000 IU vitamin D-3 daily supplementation
MS symptoms before stenosis intervention: hands-numbness and tingling, loss of dexterity, insensitive to heat, muscle atrophy. Hands tighten up with use. Walking is spastic, shuffling, foot dragging, tripping on objects, legs feel like "concrete pillars", balance problems. Chronic fatigue, requiring afternoon naps. Loss of hair on head; nickel-sized circles. Tinnitus in both ears; started about 6 weeks ago.

Number of relapses before intervention (if applicable): slowly worsening
EDSS before CCSVI intervention (self-assessed or physician-assessed?):

FSS before CCSVI intervention:

MSIS before CCSVI intervention:

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

Have a color Doppler ultrasound following the CCSVI protocol scheduled on 03/08/2010. If venous problems detected, an interventional radiologist will perform procedure to correct.

Update 16 March 2010: One abnormality present per Dr. Zamboni's criteria. The differences between the surface areas of the internal jugular veins (right & left) from the supine and sitting positions were about 90%. However an ultrasound is unable to determine status of azygous vein; which Dr. Zamboni claims is significant (90%) in PPMS cases.

Venogram scheduled for 18 March 2010.

Follow up color Doppler ultrasound (same CCSVI protocol and locations as initial testing) scheduled on April 16th to compare post procedure results.

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 18 March 2010; venogram
Type of venographic study: (MRV, Doppler)
Diagnosis: bilateral stenosis on upper internal jugular veins; numerous collateral vein formation
Type of procedure: balloon
Procedure/drug related symptoms:

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

Because there was no problems with the azygous vein, I am starting to think that I really have SPMS, not PPMS as per Dr. Zamboni's paper.

EDSS as of this update (self-assessed or physician-assessed?) self 4.5
FSS as of this update:
MSIS as of this update: 70 (out of 145)
Last edited by Donnchadh on Thu May 27, 2010 10:07 am, edited 6 times in total.
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Ella Findlay

Postby Dovechick » Sun Mar 07, 2010 12:20 pm

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

MS HISTORY
Name: Ella
Male/Female: F
Age: 30
Date(s) & type of neurological diagnosis RRMS, SPMS, still steroid responsive
Lesion locations (most affected side, LEFT), number: ?
MS treatments: no DMDs
MS symptoms before stenosis intervention:
Number of relapses before intervention (if applicable): multiple
EDSS before CCSVI intervention 6.5 physician-assessed
FSS before CCSVI intervention: 6.7
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? N

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 17th and 18th February 2010
Type of venographic study: MRV, Doppler, venography
Diagnosis: Severe Stenosis Upper Right Jugular
Type of procedure: PTA
Procedure/drug related symptoms: severe bruising on injection site and in groin area
Suspected restenosis 9th March return for check up 17th March

STENOSIS PROCEDURE II HISTORY

Date/location of testing/procedure: 17th and 18th March 2010
Type of venographic study: venography
Diagnosis: Severe Stenosis Upper Right Jugular restenosed
Type of procedure: Stent
Procedure/drug related symptoms: some bruising on injection site and in groin area


Number of relapses since first and 2nd CCSVI intervention: O
Impact on your MS symptoms in words 6th March better strength, better balance better walking
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
Last edited by Dovechick on Fri Mar 19, 2010 5:55 am, edited 1 time in total.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby savouryourlife » Mon Mar 15, 2010 8:11 am

MS HISTORY
Savouryourlife: (F)
Age: 43
RRMS dx 1996
Left INT jugular x2
MS treatments: alternative therapies
MS symptoms before stenosis intervention: fatigue, numbness in fingers, drop foot [right side], muscle atrophy, eyesight weakness & scaring, vision problems, colour distinction problems
Number of relapses before intervention (if applicable): 13
EDSS before CCSVI intervention (self-assessed 5.5]

Are you using Inclined Bed Therapy I.B.T? (N but looking into it)

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: March 10, 2010 Frankfurt Germany Dr. T. Vogl
Type of venographic study: (MRV, Doppler)
Diagnosis: left INT jugular x2
Type of procedure: Ballooning

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words :
March 11 - feeling in fingers returned and clear thinking, actually energetic thinking
March 12 - lost all feelings, returned to pre CCSVI state, if not worse, headaches and pressure around neck
March 15 - was able to shower, wash hair, still unsteady but spirits good
March 22 - eyesight definitely improving, fatigue seems better
March 26 - Fatigue returned
April 6 - Eco doppler done showing re stenosis of left int jugular.
Procedure failed. Most probably restenosed 2 days post.
Last edited by savouryourlife on Tue Apr 06, 2010 7:53 pm, edited 2 times in total.
Feb 18, 2010 Eco-Doppler Vaughan, MRV Frankfurt, left INT Jugular valve problem x2, RRMS since 1996, Angioplasty in Frankfurt March 10/10<div>Inclined bed therapy - 09/09/10</div>
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Postby Richardk » Mon Mar 15, 2010 5:06 pm

===========

CCSVI TRACKING

MS HISTORY
Name : Richardk
Male
Age: 61
Date& type of neurological diagnosis: SPMS, original dx'd 1996
Lesion locations , number:
MS treatments: Previously: Rebif, LDN, 2aminopyridine
Presently: Elavil, Tegretol

MS symptoms before stenosis intervention: Considerable fatigue, wheelchair bound but can walk very short distances w/ walker, spasticity and neural pain in legs, right hand weak and cold, muscle atrophy in right arm, purple/swollen feet, loss of balance
Number of relapses before intervention : N/A
EDSS before CCSVI intervention : 7.5 self assessed
FSS before CCSVI intervention: 35 self assessed
MSIS before CCSVI intervention:
Are you using Inclined Bed Therapy I.B.T? Not yet
Have you had testing (and possibly procedure) for blockage yet: yes


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Katowice Poland February 10, 2010
Type of venographic study: MRV, Doppler
Diagnosis: Right Jugular and azygous had stenosis
Type of procedure: Had angioplasty in both affected veins
Procedure/drug related symptoms:
Number of relapses since first CCSVI intervention: N/A
Impact on your MS symptoms in words : I have waited a month to report on any effects in order to get a better assessment...there have not been any dramatic results, rather glimmerings of changes that may improve over time...previously I was unable to sleep at night on my back as pain and spasticity in my legs developed, but I can do so now....swollen feet considerably better...I seem able to exercise better my legs, which appears to strengthen them, heat tolerance, ie in shower, improved
EDSS as of this update: slightly better
FSS as of this update: no real change
MSIS as of this update:
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Postby lucky125 » Wed Mar 17, 2010 4:59 pm

MS HISTORY
Name: Nicole
Male/Female: F
Age: 40
Date(s) & type of neurological diagnosis: RRMS Dx; 1990
Lesion locations (most affected side, if known), number: "innumerable"
MS treatments: since 2000: Avonex-4yrs, Rebif- 2yrs, Tysabri- 3yrs, Zenepax- 6mo.
MS symptoms before stenosis intervention: fatigue, balance, spasticity in legs, walking problems
Number of relapses before intervention (if applicable): too many to count!
EDSS before CCSVI intervention: 6.0 self-assessed
FSS before CCSVI intervention: 5.9
MSIS before CCSVI intervention: 78
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: 2/1/10 ultrasound, 3/3/10 Liberation@ Georgetown U., Washington, DC
Type of venographic study: Doppler ultrasound
Diagnosis: Reflux in both IJVs
Type of procedure: balloon angioplasty
Procedure/drug related symptoms: none!


Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words: Immediately noticed warmer fingers and toes! At 2 weeks balance is improving!
EDSS as of this update: 2 weeks- no change
FSS as of this update:
MSIS as of this update:

updates at my blog: myliberationadventure.blogspot.com
Last edited by lucky125 on Sun Apr 11, 2010 1:34 pm, edited 1 time in total.
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby berriesarenice » Thu Mar 18, 2010 7:05 pm

MS HISTORY
Name Berriesarenice:
Male/Female: F
Age: 34
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): 10/15/08 diagnosed RRMS
Lesion locations (most affected side, if known), number:
MS treatments: IVIG, Tysabri
MS symptoms before stenosis intervention: bilateral numbness, extreme fatigue, brain fog, memory issues,
Number of relapses before intervention (if applicable):
EDSS before CCSVI intervention (self-assessed or physician-assessed?):
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandedd ... scale.html ]
FSS before CCSVI intervention:
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? (Y/N) Y

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 4/7/10-4/8/10 Katowice, Poland
Type of venographic study: (MRV, Doppler)
Diagnosis:
Type of procedure:
Procedure/drug related symptoms:
[Repeat this section if there have been more than one procedure]

Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
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ccvis

Postby sofia » Sat Mar 27, 2010 1:51 am

CCSVI TRACKING 12th May 2010

MS HISTORY
Female
Age: 34
Date(s) & type of neurological diagnosis 2002 RRMS
Lesion locations (most affected side, if known), number: Brain, multipple leasions all over. 6 C-spine 2 t-spine
MS treatments: Avonex for 18 months, Copaxone 1 months, Tysabri 7 months (stopped all because of side-effects)
MS symptoms before stenosis intervention:
Vertigo
Fatigue
Weakness
Weak legs

Number of relapses before intervention (if applicable): At least 15
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 0.0 by neurologist
FSS before CCSVI intervention:
MSIS before CCSVI intervention:
Are you using Inclined Bed Therapy I.B.T? Yes

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


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 12th of May Bulgaria
Type of venographic study: Doppler, Venogram
Diagnosis: Azygus 90%, Left Jugular 70%, right jugular 50%
Type of procedure: Jugulars ballooning, Azygus stent
Procedure/drug related symptoms: Bloodthinners for 6 months to prevent stent stenosis.


Number of relapses since first CCSVI intervention: Possibly 1
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
2 days after procedure: Legs stronger, been for long walk, still dizzy. Feel better, more energy.

3 week update: From procedure untill now its just been great, I was doing better and better. Vertigo suddenly cleared after a week. Life was almost back to normal.
I got busy. And now vertigo is back. Optic nerve problems are back. Only just happened the last few days. Asking myself if it was down to overdoing it, or if I have restenosed. Procedure defenetly worked, I was constantly improoving, small setbacks if to much activities. Now it is slowly increasing with symptoms again. I have contacted Bulgaria to see if I can have follow up apointment just to check for restenosis.

5 week update: GP spoke with neurologist, not sure if flair up of old symptoms or new attack. Would wait and see if cortison needed. Optic nerve problems disappearing again, no need for steroids. Been back to Bulgaria for check-up. No restenosis.
Defenetly better then before procedure, even with my set back begiunning of this month. Fatigue is not back. Vertigo comes and goes, but less then before procedure. Eye probelms gone again. Leg strenght remains good.
Boyfreind is saying I don't seem half as bad now, as I did before procedure.

2 month update: I still have vertigo issues, but it is very much reduced. The vertigo issues are easier to deal with when the fatigue and the MS blanket feeling has disappeared. I still have optic nerve issues, but it is not that often and bothersome. My legs hardly ever feel weak anymore. Whatever little urgency issues I had, is gone. Symptoms get worse when I am tiered.
Unfortunately I am not one of these people that can sya they feel like they haven't got MS, but my quality of life has improoved tremendously, it has made such a huge difference to me and my family. It is huge!

4 month update: Still have my symptoms from time to time. I am not a cured person, I do not feel like a person without MS. But I am so much better and stronger. My partners comments are " It is a remarkable difference. It has exeeded all his expectations. It is a new life for him and the kids as well"
Last edited by sofia on Sun Sep 12, 2010 12:13 am, edited 8 times in total.
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My tracking history.

Postby Badger » Sat Mar 27, 2010 4:05 am

CCSVI TRACKING 27th March 2010

MS HISTORY : diagnosed 2004 RRMS.

Male/Female: (M/F) MALE
Age: 27

Lesion locations (most affected side, if known), number: 6 plaques, all over brain, spinal unknown.
MS treatments: beta-interferon, tysabri

MS symptoms before stenosis intervention: I had relatively mild symptoms for the first two years but received methyl-prednisolone steroids after mild attacks. Left side became weak and slight foot drop. Fatigue after walking over 200yrds. Dizziness and poor balance. Bladder problems.
Got blurred vision on left eye, more or less all the time.

Number of relapses before intervention (if applicable): 10

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


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Katowice, Poland 24/03, Dr Ludyga.
Type of venographic study: (MRV, Doppler)
Diagnosis: Blocked azygos vein.
Type of procedure: 1 stent (40mmx10mm)
Procedure/drug related symptoms:
[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): Warm hands and feet, better balance,no dizziness, steadier stance and better posture. Walking improved greatly and can tackle stairs better.
12/03 - 3 WEEKS SINCE PROCEDURE
My walking has improved, my heat tolerance has almost gone. I have sat in the sun for the past two days without any of the effects of MS.
I still have blurred vision in my left eye.

19/03 - 4 weeks

My walking continues to be steady. I still get fatigue after walking for long periods. I was in Ikea yesterday and despite the fact I was able to walk around for 30 minutes, I still required a seat after I was finished.

EDSS as of this update (self-assessed) : 2.0

17/08 - 5 1/2 months

I had been continuing with my improvements until 3 weeks ago when I started to feel my right leg becoming weak. I am now unable to move my right leg and I am required to hold on to someone/something when walking. I have just returned from holiday and I have checked this site, where I have come across May-Thurner Syndrome, which I hope is at the cause of my recent decline in health. I am awaiting to arrange an MRI to hopefully diagnose me with this and hopefully I can return to the way I was previously.xx
Last edited by Badger on Tue Aug 17, 2010 7:00 am, edited 3 times in total.
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Postby Nasti » Sun Apr 04, 2010 5:13 pm

CCSVI TRACKING 4th April 2010

MS HISTORY : diagnosed 2000 RRMS.

Male/Female: F
Age: 27

Lesion locations (most affected side, if known), number: many plaques, all over brain, spinal a few minimal plaques
MS treatments: Rebif for 6 years, LDN for 3 years, steroids during acute relapses

MS symptoms before stenoses intervention: no permanent symptoms, apart from fatigue, which was easily cured by LDN. A variety of different symptoms during acute relapses: optic neuritis (twice), tingling, stiffness, no skin sensitivity in face, walking problems, dizziness, poor balance, bladder problems...

Number of relapses before intervention (if applicable): approximately 20, right now in a state of relapse, small brain affected, nausia, vertigo, right side of the body stiff

EDSS before CCSIV (self-assessed) : 1.5

FSS: 4.5 (it was a lot worse without the LDN)

MSIS: 39

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

STENOSIS PROCEDURE HISTORY

3rd June - Tokuda, Bulgaria

Diagnosis: right jugular very narrow (1.3 mm), narrower at ear height, left jug 1.7 mm, suspected stenosis of azygos

Treatment: stent 6 cm x 6 mm right jug, left jug and azygos ballooning

Condition after surgery: I was having a relapse at the time of the surgery, everything is the same, the relapse is better on some days and worse on other, I feel like the surgery didn't have the effect I was expecting, but it is too early to say; shoulder pain slowly lifting off

EDSS after surgery: same

Therapy after surgery: aspirin 100 for 1 year or more, Pradaxa 2x110 mg for at least 6 mos, Diosmin

update 10th Sept 2010

EDSS 1.5
FSS 1.2

3 mos after the LS, I feel great. I have the energy to live normally. On the 7th Sept went for a check-up with Dr. Grozdinski, both the jugs were approximately 4.5 cm open, no reflux...

The symptoms that used to show up when i was in an extreme situation (tiredness, excessive heat or cold) still do, like my palms freeze in cold weather, my toes get stuck when turned downwards, I easily get kind of stiffness (actually, as if ants are walking all over my limbs) if I keep my limbs too long in an awkward position. My neck only hurts in few not so natural positions, and my right eye temple (right side stent) hurts when I turn my head towards the right shoulder.
Some symptoms, such as tightness in my back and legs when I lower my chin towards my breast and fatigue are completely gone. Now I can do all sorts of activities all day long (sometimes it only takes my 5 min to rest, quite enough).

All in all, with some people maybe it takes time to get things going, so don't give up hope!
Last edited by Nasti on Thu Sep 09, 2010 4:39 pm, edited 7 times in total.
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Postby moochsid » Tue Apr 06, 2010 6:39 am

CCSVI TRACKING 5th April 2010

MS HISTORY : 1989 Attack of optic Neuritis, loss of balance.
NOT diagnosed as MS but "Viral infection"
Numbness and limbs and fingers 1995 onwards still not diagnosed as MS.
Walking difficulties 2001 onwards. ULTIMATELY diagnosed 2003 SPMS

Male/Female: (M/F) FEMALE
Age: 54

Lesion locations (most affected side, if known), number: at least 11 in brain and one major in spine
MS treatments: BBD LDN Esperanza Acupuncture FES Omega 3 Vit D supplements Chlorella
MS symptoms before stenosis intervention:
Permannt symptoms Extreme cognitive difficulties/Brain fog,Slurred speech. Mood swings lack of grip and weakness in right arm and hand.
Bad balance only a few steps unaided.100 meters with walker otherwise wheelchair bound. Bladder OK but some spasms sometimes. Stiffness and spasticity in legs after siting. Very cold hands and feet. Bad heat tolerance. Hot head. L'hermite's sign. Afternoon fatigue and after eating.

Number of relapses before intervention (if applicable):

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


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Katowice, Poland 29/03, Dr Ludyga.
Type of venographic study: (MRV,) NO Doppler
Diagnosis:
Type of procedure: 1 stent left jugular through valve
ballooning right jugular valve Azygous clear.
Procedure/drug related symptoms:
[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): Warm hands and feet, better balance. Brain fog almost gone more confidence Voice stronger Bladder better.Grip stronger. HAPPIER.
EDSS as of this update (self-assessed) : 5.5
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Postby Gmac » Tue Apr 06, 2010 1:47 pm

CCSVI TRACKING 04/06/2010

MS HISTORY
Name gmac
Female
Age:45
2000 (RRMS)
Lesion locations (most affected side, if known), number: 2 pin points mid top of brain
MS treatments: Copaxone and LDN
MS symptoms before stenosis intervention:numbness, tingling entire right side. heat intolerance, bladder spasms, right foot drop, limp, extreme weakness in right leg, weakness in left, balance
Number of relapses before intervention 1
EDSS before CCSVI: 3.5
FSS before CCSVI intervention: No fatigue
MSIS before CCSVI intervention:
Are you using Inclined Bed Therapy I.B.T? Yes

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


STENOSIS PROCEDURE HISTORY

03/30/2010 Katowice, Poland Euro Medic balloon angioplasty of right IJV, balloon angioplasty of left IJV and stent
Venogram,MRV and Doppler performed in Poland. MRV & Doppler done also at False Creek, BC
Diagnosis:stenosis of both right and left IJV
Type of procedure:balloon angio and 1 stent
Procedure/drug related symptoms:
[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: Numbness and tingling is gone, limp is gone, foot drop is gone, legs feel stronger, balance has improved
EDSS as of this update 2
FSS as of this update: none
MSIS as of this update:
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Postby tzootsi » Wed Apr 07, 2010 7:12 am

TRACKING 04/07/2010
MS HISTORY
Name : Melanie
Male/Female: F
Age: 60
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other):
RRMS (?) dx’d August 2007
Lesion locations (most affected side, if known), number: several in brain, one on spine
MS treatments: LDN, MS recovery diet, supplements, exercise
MS symptoms before stenosis intervention: heavy right leg, hammertoes on right foot, slightly weaker right arm, cold right foot & hand, slight balance issues, burning skin, l’hermittes
Number of relapses before intervention (if applicable): Even though dx’d as RRMS, never had any relapses or attacks, however, some days are better than others
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 3.0
FSS before CCSVI intervention: No fatigue to speak of
MSIS before CCSVI intervention: 58
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 - Doppler in November 2009
[Some patients may wish to start with a baseline report, if Y, continue with next section]

STENOSIS PROCEDURE HISTORY

Updated April 17

Date/location of testing/procedure: venography and possible ballooning on April 9
Type of venographic study: (MRV, Doppler)
Diagnosis: both juglars have high grade stenosis
Type of procedure: angioplasty ballooning of both jugs (3x on each)
Procedure/drug related symptoms:
[Repeat this section if there have been more than one procedure]

Number of relapses since first CCSVI intervention: never had any
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:

Melanie is now 8 days out from her procedure, some small but noticeable improvements:
- less morning spasticity
- a sense that the world is more 'high definition'
- warmer right hand
- slightly better balance
- more energy
- heavy right leg not as draggy after prolonged standing

Update 5/14/2010 - 5 weeks out from procedure.

Just had her monthly followup with IR. Everything looks good on the doppler, both jugs are flowing well. As to her symptoms:
- less morning spasticty continues
- generally warmer right hand
- balance is sometimes better
- more energy
- diminished l'hermettes
- heavy right leg is sometimes less heavy, usually in the evening

Update 6/24/2010

- all above improvements holding
- right hand strength improving
- painful right shoulder subsiding

Will update every few weeks
Last edited by tzootsi on Thu Jun 24, 2010 7:05 am, edited 3 times in total.
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Postby nono » Wed Apr 07, 2010 7:35 am

CCSVI TRACKING 7-04-2010

MS HISTORY
Name:Nanda
Male/Female: F
Age:43
Date(s) & type of neurological diagnosis: RRMS/SPMS dx 2007 first signs optic neuritis 1998
Lesion locations :lots of leasions mostly left and one big and few small spinal
MS treatments:rebif stopped in 2008 because of side effects and no result
MS symptoms before stenosis intervention: Numbness in legs and arms ,optic neuritis 5x , fatigue ,walking problems etc. ect.
Number of relapses before intervention (if applicable):lots
EDSS before CCSVI intervention: 5.0 adjusted after survey dr.Vogl
FSS before CCSVI intervention:6.5

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

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


MRV on 01-02-2010 in Frankfurt by dr. Vogl shows severe problems in blood flow on the left , a lack of confluence of sinuses, hypo plastic veins lots of collaterals, thin int. l. jug but no stenosis found.

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure:11-03-2010 Frankfurt J.W.Goethe Univ.
Type of venographic study:01-02-2010MRV no stenosis found/11-03-2010 venography :
Diagnosis:stenose in left int. jug. "caudal" (high stenose)
Type of procedure:Venography , balloon dilatation 3x
Procedure/drug related symptoms: no drugs given, a little cramp in veins L+R, aspirin prescribed by GP for 3 month's


Number of relapses since first CCSVI intervention:0
Impact on your MS symptoms in words :
First hours:
Warm feet , warm all over
eyes improved
less vertigo
First day's
More energetic
Clearer head
3 weeks p.o. 07-04-2010
better bladder control
lesser cramps
walking improved 300 mtr without dragging or limp
less stiffness
no more "wiggle toes"
no more vertigo
Loads of energy!
3 months p.o. 1-06-10
++walking improved even more 1000mtr without dragging or limp
++stiffness almost gone
++verigo gone
++ feet stil warm
-- lesser bladder control
-- eyes are less better(pain/flashes)
-- energy is not as good as it was
-- pain increased ( legs)
EDSS as of this update: 4
FSS as of this update:
MSIS as of this update:

6 months update 12-09-2010
++walking improved 5km and more without limb but a little pain
++stiffness almost gone only in the morning
++verigo gone
++ feet stil warm
++ Bladder control without problems
++ Eyes just a little blurry vision
++ Energy is back
-- Pain is still a problem
-- cycling or walking on mountains is still a problem.The left leg is still powerless.
After six months all improvements seem to be consistent.
But after a stressful period with little sleep the problems returned a bit, it costs about a week or two to recover but I always recover.
Still taking bloodthinners , stopped for about a month but was feeling less better so started again.

Almost one jear now , still doing fine.
Check up in Belgium (doppler) showed a wide open jugular.
2010 was the first jear since a very long time that showed improvement for me !

EDSS as of this update: 4
FSS as of this update:
MSIS as of this update: :P
Last edited by nono on Wed Jan 12, 2011 5:54 am, edited 4 times in total.
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