This Is MS Multiple Sclerosis Community: Knowledge & Support

CCSVI TRACKING 01/03/2010
MS HISTORYName: Phyllis (Bobbi); Female; 56 years of age
Diagnosis: 1992 @ St.Joesph’s, London, Ontario; MRI of Brain & Cervical Spine "..... multiple areas, predominantly at C2-3 level posteriorly on the left, C3-4 level posteriorly on the right as well as C4-5 and C5-6 levels and the T7-T1 levels”; No treatment needed
1999 Reassessed @ Hamilton Health Sciences Centre (MS Clinic) with Dr. P.;
Diagnosis SPMS; EDSS 4.0.; Treatment: REBIF 44 ug;
2002 New MRI of Brain; “larger and many more lesions”
From 2003 to 2009 EDSS 5.0 to 6.0
2009 Dr. STOPS REBIF due to showing little benefit at present.
MS Treatments: REBIF; physiotherapy; yoga; other drugs for depression, incontinence and sleeping; supplements
MS symptoms: weakness in right hand with tingling, progressing to difficult writing, buttoning clothing; Leg spasms, fatigue and lack of stamina, sensory deficit in toes, reduce sensation below knees in both legs and feet, leg spasticity, toes turn purple, hot & cold, left drop foot when tired; Disturbed sleep; up 2-3 times to void, urgent bladder and bowel, incontinence issues; Imbalance when standing or walking, use of cane, walker, wheelchair;
EDSS before CCSVI intervention: 6.0 (physician assessed)
FSS before CCSVI intervention: 6.0
MSIS before CCSVI intervention: 107
Not using inclined bed therapy.

STENOSIS TESTING HISTORY
Date/Location of testing: Jan 5 2010, Buffalo, New York
Type of testing: 2D, Doppler ultrasound
Diagnosis: Inconclusive evidence regarding jugular thrombosis or stenosis.
Date/Location of testing: Jan 19 2010, Niagara Vascular Lab, Canada
Type of Procedure: Ultrasound: Bilateral non-invasive assessment veins. B-mode and duplex imaging were employed. Compression maneuvers were performed.
Diagnosis: RIGHT SIDE: The max transverse diameter of the internal jugular vein is 1.4 cm, proximally, 1.8 cm in mid portion and 1.2 cm distally. Non-occlusive thrombus (unobstructed).
LEFT SIDE: The max transverse diameter of the proximal internal jugular vein is 1.4 cm, in the mid portion .8 cm and in the distal part .8 cm. Narrowing of the left jugular with possible "calcuim" deposits.
My Summary: Dr would not comment on connection to CCSVI ... but to me it looks like my left jugular vein has narrowing and some blockage issues.
NEXT STEP: Wait and see what happens with study results. Possible MRV in US.

SammyJo
Female
Age: 45

MS History:
1995 diagnosed RRMS, 2002 diagnosed SPMS
Lesion locations: Brain MRIs show various lesions, black holes & Dawson's Fingers, but no new brain lesions since 2000. Long lesions along the spine (C2, C3-7, T3-4, T6, T12) and one section shows spinal column atrophy. Devic's antibody test=negative. Optic nerve atrophy found 2008, blank spot in right eye vision.
MS treatments:
1995-98 Corticoidsteroids (MS worsened).
1998-02 Copaxone (MS worsened).
2002 Novantrone chemo 1 year, 7 doses (MS worsened, heart function decreased).
2003 Avonex & monthly steroids for 6 months (MS worsened).
LDN since 2/2004 (MS improved 4 years, worsened last 2 years).
Exercise, Physical Therapy, Feldenkrais, Cranio-Sacral. Healthy MS type diet, Vit D3, Fish Oil, many supplements.

Inclined Bed Therapy: Yes. 12/25/09 elevated 3", night time leg spasms stopped immediately. 1/3/10 elevated 6".

MS symptoms before stenosis intervention:
Violent onset with relapses every 3-6 months for first 2 yrs, optic neuritis, temporary blindness, dizzy, loss of balance, urinary urgency, fatigue, chest tightness, heavy legs, heat intolerance, cold hands/feet, numbness/burning sensory issues, leg spasms at night, cognitive/memory problems, word mix-ups.

MS got worse during/after chemo, started using cane first time 02/2003, R. leg atrophied and dragging. All symptoms worse, 2-4 falls/month, extreme ataxia, house bound. 12/2003 doctor recommends powerchair. 01/2004 had to stop monthly steroids because veins so scarred from Novantrone; doctor suggests chest port.

02/2004 Started 2mg LDN; for first time in years, slept 8hrs straight with no leg spasm, no bathroom. 4/6/04 last day I used my cane, cancelled powerchair and chest port, all MS issues and physical strength improved for next 4 years until 2008, then decline set in again and returned to cane use. Cognitive function has remained good since 2004. Details on LDN experience (link). Stopped LDN for CCSVI procedure.

Condition going into procedure: haven't driven myself, or left the house much since 06/2009, due to fatigue, inability to walk far with cane, urgency, fear of falling. For the trip to Stanford Doug had to push me in a wheelchair everywhere.

Number of relapses before intervention (if applicable):
9 relapses 1995-2000, 3 relapses 2008-09 triggered by fever from flu.

EDSS before CCSVI intervention: 5.5 4/2009 (MS doctor assessed)
EDSS 6.0 10/2009 (self assessed)
FSS before CCSVI intervention: 6.0 (range 1-7)
MSIS before CCSVI intervention: 74 (range 1-144)
Have you had a procedure for stenosis yet: YES

STENOSIS PROCEDURE HISTORY

Date/location of testing & procedure:
Stanford Hospital Medical Center, MRV test & Stent procedure 10/29/2009 .

Type of venographic study: MRV top of head to thoracic area.
Diagnosis: Stenosis in left and right internal jugular veins, behind mid-ear, and stenosis in mid-left jugular. Extensive collateral pathways. Flow pattern abnormally delayed at valve of left jugular & subclavian vein.

Type of procedure: Absolute A Pro 9.0 Stents were placed in following locations:
Right internal jugular (8mm diameter, 40mm long) inserted at C1-C2 level
Left internal jugular (7mm diameter, 40mm long) at C1-C2.
Mid-left jugular (8mm diameter, 30mm long). Lower left jugular valve balloon dilated 10mm, no stent.
Images here of MRV & stent placement (link).

Procedure/drug related symptoms: Week 1 no strength in arms, extreme neck pain, very bad headaches, need walker around house. Week 2 shoulder pain started, became very intense, started to improve about week 7. Just using Tylenol for pain. Week 4 had trouble with warfarin, low hematocrit (near transfusion level) due to heavy menstruation for 19 days lead to passing out and 2 trips to the emergency room. Dr. said to stop warfarin & plavix 11/29.

2 month follow-up MRV: Scheduled for 1/14/10.
Number of relapses since first CCSVI intervention: 0

Impact on your MS symptoms in words:
[11/19/2009] Week 3: First thing I noticed immediately after procedure was the heavy leg syndrome disappeared. Can walk farther with support, but now I get tired from exertion, rather than legs turning to cement and refusing to move. Saw physical therapist and was surprised when he asked me to tap my right foot, and I could, 10 times. Then I held a support and jumped on my toes. Neither of these maneuvers was possible for the past year. Morning extensor leg spasms are not as bad now, but nighttime leg spasms are back.

[12/05/2009] Week 6: still weak from warafin problem, but shoulder pain starting to lift finally. Foot drop improving.

[01/09/2010] Week 10: shoulders much better, headaches gone, can sleep on my side again. Morning extensor spasms are gone, and night time leg spasm stopped with IBT on 12/25. Urgency is still an issue, but improved. Energy picking up, yesterday I tidied up the kitchen for the first time. Doug was able to take a 3 month leave from work while I recovered, and he has done all the housework & cooking. Only painful thing is a twinge in left mid-jugular stent area when I turn my head to left suddenly. Returning to Stanford this week for 2 month follow up. I will post an update on those results, then monthly.

[01/14/2010] Follow up at Stanford with Dr. Dake. Left jugular previously 95% blocked, right juggler 85% blocked are now both at 100% open flow, everything looks good, I did not have to go in for 2nd procedure. No cell overgrowth or build up. My stenosis where caused by mechanical obstructions, the high internal jugs were crushed against cervical vertebrae, the lower left jug was impinged by the carotid artery mashing into it. I took a print out of the earlier MRV images so I could label it properly, new images are posted (here). Leg spasm are gone, but I still have some tone/stiffness in legs, but it is abating. No more icy hands and feet, they are now warm, and I don't have to wear wool socks to bed. Urgency has lessened by 50%. Energy has picked up, and balance has improved.

[01/25/2010] 3 months post CCSVI procedure:
Shoulder pain is almost gone, I can rotate my shoulders. Can now sling my coat over shoulders and slip my arms in, without assistance. Minor pain from stents when turning neck is gone. Feeling stronger, starting to do minor exercises while prone. I still walk with a cane and not very far.


As of this update: EDSS=6.0 (self-assessed), FSS=5.5, MSIS=60

For discussion or questions on my updates see
http://www.thisisms.com/ftopict-8626-hematocrit.html
All my updates and images in one place at http://healingpowernow.com

_________________
RRMS '96 SPMS '02 | Dual jugular vein stenosis (CCSVI) | 10/09 3 stents, 1 angioplasty. Details http://healingpowernow.com

CCSVI TRACKING 12/07/2009

MS HISTORY
Name: Christian
Male/Female: M
Age: 39
Date(s) & type of neurological diagnosis: RRMS dx June 2009
Lesion locations (most affected side, if known), number: 3 - left
MS treatments: Avonex
MS symptoms before stenosis intervention: Optic Neuritis, fatigue, annoying left leg syndrome (loosing ability to control leg for 4-5 seconds), L'hermittes sign, reduced vision on both eyes, back problems, hands shaking, headaches, dry eyes
Number of relapses before intervention (if applicable): 1
EDSS before CCSVI intervention (self-assessed): 1.0
FSS before CCSVI intervention: 2.5
MSIS before CCSVI intervention: 67
Are you using Inclined Bed Therapy I.B.T? Yes for 1.5 months. I'm also on dr Jelinek's diet (http://www.takingcontrolofmultiplesclerosis.org)

Have you had testing (and possibly procedure) for blockage yet: Y (no procedure)

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Dec 7, 2009 - Poland, dr Simka
Type of venographic study: MRV and Doppler
Diagnosis: Doppler:


MRV:


Type of procedure: None (yet) I have been sleeping inclined for over a month - and my MS symptoms seems to be fading away now! I am not sure if I want the operation yet. I will wait and see.
Procedure/drug related symptoms: The Avonex is no fun for me. The day after the injection my muscles are aching, and I am tired.

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms: Well - the IBT is quite simply doing wonders for me. I am a mild MS-case, so I'm hoping it will all go away some beautiful day!
EDSS as of this update (self-assessed): 0.5 (my left eye is still suffering a bit from my Optic Neuritis)
FSS as of this update: 9 (my fatigue has gone - thank you IBT)
MSIS as of this update: 37[/url]

_________________
RRMS Dx'd 2009

MS HISTORY
Male/Female: (M/F) M
Age: 31
Date(s) & type of neurological diagnosis RRMS
Lesion locations (most affected side, if known), number:
MS treatments: betaseron rebif copaxone campath
MS symptoms before stenosis intervention: many

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: Katowice Poland
Type of venographic study: (MRV, Doppler) Color Doppler
Diagnosis:
Color Doppler sonography of internal jugular veins and vertebral veins

Right internal jugular vein - The vein is occluded by membrane, which is situated just above the junction with brachiocephalic vein, the flow in the vein is very low

Left internal jugular vein - normal

Vertebral veins - normal

Steffi
Female, Age: 39

RRMS
MS diagnosis Jan 2006 (MRI brain&spine and lumbar puncture) after 1 year strong instability relapse (complete loss of balance summer 2005). Optic neuritis 1996 without diagnosis, then 9 years symptom-free. During 2005-mid 2006 three MS relapses. No more relapses, but some slightly increasing symptoms since 2007.
Lesion locations seen in brain&spine MRIs of Dec 2005, 2007 and 2010 (MRI results remained unchanged from 2006-2010!):
- brain: white matter (periventricular and subcortical in both hemispheres, without association to brain barrier damage).
- spinal cord: cervical area C1-C5, C7 and also D4, D6-D8, D11

Swank diet since Jan 2006
Interferone (Rebif 44) since April 2006
Inclined Bed Therapy since Feb 2010
Angioplasty (without stent) left and right internal jugular veins end May 2010

MS symptoms BEFORE jugular veins intervention:
- common periods of fatigue, instability (balance disturbance) and cloudy brain spells
- pins&needles and sensation of stiffness in both hands (but not visible)
- pins&needles and sensation of stiffness in both feet/numbness in parts of feet/toes and half-numbness/decreased sensation in lower part of legs. Often feeling feet like heavy blocks - right foot more affected. Distribution/extention of numbness slowly worsening with time since 2007. But always walking/running normally.
- light bladder emptying dysfunction (weakened force of contraction) causing common urinary tract infections.

Number of relapses before intervention: 4 (first in 1996, other 2005-2006)
EDSS before CCSVI intervention (physician-assessed): 1.5

CCSVI procedure history:
1. 19 Jan 2010, Katowice (Poland): Extracranical color-doppler sonography of internal jugular veins and vertebral veins
Diagnosis: "Left internal jugular vein - The vein is occluded by pathologic valve in the junction with brachiocephalic vein. Nearly no flow in the vein, the vein does not change its diameter in the sitting and supine position. Right internal jugular vein - normal. Vertebral veins - normal."
2. Feb 2010 Ferrara (Italy): Extracranical eco color-doppler "doppler combinata (Doppler CW e Duplex Scanner ad alta risoluzione)"
Diagnosis: "A carico dei tronchi sopra aortici venosi esaminati si evidenza a carico della vena giugulare di sinistra stenosi a carico della valvola terminale prima dell'ingresso nel tronco comune. Nella norma il circolo destra." (= identical diagnosis via doppler as in Katowice).
3. 25 May 2010, Katowice (Poland): MRV
4. 26 May 2010, Katowice (Poland): Final diagnosis deducted from doppler, MRV and venography: Stenosis right and left jugular veins
Treatment: Percutaneous balloon angioplasty right and left jugular vein (Invatec 12x40 mm and Invatec 12x40 mm). No stents.
During catether venography a narrowing of the right jugular was found that had not been detected via the doppler exam. The left jugular valve problem causing stenosis confirmed. No stenosis found in azygos vein which was also checked during the procedure.
Bloodthinner injections Fraxodi 0.6 ml prescribed for 7 days.
5. 28 Sept 2010, Belgium: CCSVI doppler check of both jugular veins. Result: No restenosis (valve in left jugular still nicely squeezed to the wall and right jugular open). Normal blood flow in both jugulars.

Impact on MS symptoms:

Immediate effects perceived within first 24h after procedure:
- decreased intensity of pins&needles/swollen hands sensation in both hands (felt immediately pins&needles very much lighter as of moment of angioplasty) Quote: >>I could hardly sleep first night since the sensation was so exciting getting better every hour...and now 24 h later feel really none of this swollen hand feeling anymore, just still a bit very light tingling...<< However, unfortunately the intensity came back later with time again.
- improved bladder function (as of night of intervention + remained)
- warm feet, but feet disturbance symptoms of before unchanged. Quote: >>my feet were boiling hot immediately after the angioplasty<<
- felt at first energetic/alert, but then got tired
- next day in afternoon/ evening had migraine, but following day (2nd day after angioplasty) felt perfect again and was full of energy.

Quote: >>I cannot judge on fatigue/instability yet, as today got very tired (but guess this can be judged as normal 1 day post-angioplasty and not having slept that much in hospital!), rested a bit and now woke up with a strong headache. Directly after he angioplasty felt very alert though. Cannot really say that any change of numbness in my feet, although they feel a bit lighter, not so heavy icy blocks as before.<<

First month:
- 5 days after procedure: strong migraine-like headaches for 10 days
- Headaches then diminished slowly, end of month were completely gone
- generally more energy, but still some periods in first weeks, when stress from work and travel of 2-3 days where fatigue/instability (balance disturbance)/brain fog spells came back - then went away again.
- Hands&feet disturbance symptoms of before: generally unchanged, except that pins&needles in hands still a bit less than before, but later increased again with time.
- Generally ups and downs on symptoms.

Quote towards end of month:>>Otherwise still feel generally more energetic, no brain-fog/dizziness and had no fatigue/instability spells as commonnly (lately always?) had in afternoons. Weard to say that I prefer a light one-sided headache at my temple and feeling "present in this world" to the fatigue I had before...also because I have hope that as soon as the headache will disappear completely, I may feel much better than before!<<
>>I have to admit that my feet are just as before, no change - I still have numbness in some of my toes and parts of my feet and also a bit feeling of more stiffness in my feet...as long as does not progress I can live with those feet, since no pain. My hands also still feel a bit swollen but the pins&needles are less than before (while in my feet no change on that).<<

Weeks 5-7:
- No Headaches at all anymore, seemed a transient period - for whatever reason - it's over
- No longer fatigue/instability (balance) spells at all (but admit as of week 6 was on holidays)
- Bladder perfect since intervention
- Improved quality of sleep - it's not that I'm more tired, but if I lie down at whatever time of day or night can just fall asleep within minutes like a baby (was never able to do so during day before! So this amazed me recently! Before only resting)
- Hands&feet symptoms: generally unchanged in comparison to before intervention (better on fresher days, worse on hotter days). Only a bit less heavy block feeling in feet.

Quote after week 4:>>My head clearer/lighter and feel more alert - have been working this morning and have had no fatique or brain fog so far. No instability(=body balance)/dizziness spells. Always felt so tired in afternoons after work before with this cloudy with cotton enwrapped brain and not really feeling present and body often out of balance. And it is astonishing I feel so good since we have humid hot weather!<<
>>My headaches gone...for the moment no doubt feel better than before. More energy, no fatigue/instability spells over the last 3 days - I'm awake!<<

Weeks 8-9:
As above, but had 1-2 days inbetween some fatigue/brain fog spells, which however were only occasional and next day gone.

3 months (week 10-14):
- Fatigue/instability (balance) spells completely gone - YESSS
- More energy
- Bladder perfect since intervention
- Improved quality of sleep
- Hands&feet symptoms: generally unchanged in comparison to before intervention

4 months (week 15-19):
- No change of symptoms/improvements compared to 3 months report
- doppler check 4 months after procedure showed no restenosis and normal blood flow in both jugulars Was told that if after 4 months no restenosis yet, very likely the veins will continue to stay open.

7-8 months:
- No change of symptoms/improvements compared to 3 months report
- feel much more energetic and less tired!

Number of relapses since first CCSVI intervention: None (headache episode 5 days after intervention was not a relapse - neurology told me so and they asked me if had been stressed...and Dr Beelen told me at the doppler-check that headaches after procedure, even for longer terms had also been common in his patients and should not be considered as MS relapse).
EDSS as of this update (self-assessed): 1

María
Female
Age: 53

MS History:

1996 diagnosed RRMS, since 2003 SPMS

MS treatments:

2000-2009: Betaseron
Since 2009: Tysabri
Since 2003: BBD
Since 2010: IBT

MS symptoms before stenosis intervention:

Loss of balance, fatigue, stiffness, urinary urgency, heat intolerance, cold hands/feet, short memory problems, slow thinking, swallowing problems, double vision etc.

EDSS before CCSVI intervention (self-assessed): 5,5

Are you using Inclined Bed Therapy I.B.T?: Yes. Since January, 2010.

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure:

Testing: Euromedics-Katowice-Poland- Dr. Simka; 12/08/2009
Procedure: Euromedics-Katowice-Poland; 01/18/2010

Type of venographic study:

Eco-Doppler Color and MRV

Diagnosis:

"There are sonographic signs of the chronic cerebrospinal venous insufficiency due to pathologic valve in the junction of left internal jugular veins with brachiocephalic vien."

Type of procedure:

Percutaneous ballon angioplasty left internal jugular vein. No stent.

Procedure/drug related symptoms:

No pain at all. No headaches. No side effects.

Impact on your MS symptoms in words:

(01/25/2010) Week 1: The only thing I noticed is: hands are a bit warmer than before the procedure.
(02/17/2010) 1 month after the procedure we can report the following improvements:

1.- Warmer feet.
2.- Better balance and stability.
3.- Better dexterity (agility). Less clumsiness.
4.- She can walk without having to look at the floor.
5.- Now, she can walk everyday 3 km. without fatigue.
6.- The spots (like big frekles...no birthmarks...) she has in her left leg are lessening, toning down. These spots appeared several years ago, and now are vanishing.
7.- Faltering, dificult, labored...breathing while sleeping. Gone.
8.- Bruxism (teeth grinding) while sleeping. Gone.

(04/20/2010) 3 months after the procedure we can report the following:

The last month she did not notice any special improvement...but, there were not steps back. The improvement process seems to have stopped...but, she did not move back. She feels as stronger as the first two months...no better...no worse. Fatigue and warmer feet are the most remarkable improvements. No more wheelchair since the procedure! Never! She did not need it!

(07/21/2010) 6 months after the procedure we can report the following:

The situation of Maria is the same as I reported 3 months ago:no better...no worse. We are very...very...very happy. Fatigue is gone. She can walk the whole day with a cane without fatigue. Yesterday we visited Dr. Simka to do a new eco-doppler...and the flow in the left internal jugular vein is normal: lower than the other jugular vein but normal, so it is not necesary to do anything. This time we travelled to Poland without our wheelchair...We are very...very happy.

_________________
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.

Name: Sharon (Nees)
Male/Female: F
Age: 31
Diagnosis: RRMS in 11/2007
Lesion locations: Not known

MS treatments:
Best Bet Diet plus supplements (Omega3, D3, B12, B complex, magnesium, calcium, zinc, CQ10, gingko) from Jan 2009
LDN from June 2008 to Nov 2008
Tysabri from Nov 2008 to March 2010

MS symptoms before stenosis intervention:
At the start of my Tysabri treatment I was measured as having EDSS 6.0; I could only cover about 50m on 2 crutches, was totally numb from the ribs down to the point where I didn’t know where my limbs were unless I was looking at them, almost no balance, weakness, cognitive impairment and crushing fatigue. With Tysabri and diet I have improved dramatically and my EDSS was measure Nov 2009 at 3.5. Leading up the intervention treatment I could drive, walk unaided half a mile or more and had enough energy to work full-time, about 85% the energy of pre-MS level. I still had poor balance and coordination, some allover weakness and partial numbness in my hands, feet and legs like I was wearing thick woolly gloves and woolly stockings (thicker round my feet and ankles)

Number of relapses before intervention: 5 (11/2007 – 11/2008)
EDSS before CCSVI intervention: 3.5 doctor assessed 11/2009, 3.0 self assessed 1/2010
FSS before CCSVI intervention: 2.3
MSIS before CCSVI intervention: 56

Are you using Inclined Bed Therapy I.B.T? Yes, since beginning of Feb
Have you had testing for blockage yet: Yes

STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure: Poland, procedure 20th Jan
Diagnosis: Doppler show membrane across both jugular veins, worse on the right. During procedure discover mild stenosis in the right jugular vein, but didn't see anything in the left jugular vein
Type of procedure: Balloon angioplasty in right jugular vein only to clear membrane and treat stenosis
Procedure/drug related symptoms: Did feel more tired than usual the following week, due to herapin?

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):
(29/1/10) First thing I noticed was warm feet, by the next morning I had slightly more feeling in my feet, particularly my left. Over the week the improved feeling has progressed up my legs to the point of being able to feel clothes against my knees and shins. A few days after the procedure I had more energy; 3 days later I flew back to London from Poland, had a nightmare public transport journey home and still went out in the evening! I’ve felt tired the last 4/5 days, maybe the herapin has kicked in? I think my balance and strength in my legs may have improve slight in the last couple of days, but that could be wishful thinking. Difficult to tell, if other people notice without prompting then that’ll be a good sign.

(12/2/10) Yesterday I reached the point where I can say, yes I'm definitely better! I met some friends and walked quicker than some of them for half a mile, and they commented, 'What's happened to you?', 'Poland!' I replied. The feeling in my feet is very nearly normal, just some fuzzy patches round my heels. Same with my hands, just the very tips of my finger and my thumbs. Weirdly both my right hand and foot is slightly better than my left. Balance and coordination are not keeping pace with my strength gain, I guess that'll take more time.

(14/3/10) Its 7 weeks post procedure and I'm feeling good overall, my balance and coordination have improved. I'm steadier on my feet, have better posture through improved core strength, and can carry a full glass across the room without spilling a drop. My walking is better, a comment from a work colleague was, 'that you wouldn't know I had MS from my walk'. However, how good I feel is variable and depends very much on what I eat. When my diet is high in veg and I stick to the BBD I can walk up and down stairs without a handrail, walking is easy, sensitivity is 90% and I feel my ultimate goal of running is just around the corner. When my eating isn't so healthy, my balance, core strength and sensitivity deteriorate so my goal of running seems like a dream. Bring on the veg!

(1/4/2010) Last night I joined the gym, no joke! I'm going to start with yoga and Pilates with the aim of completing a 5km run I've signed up for in June. So yes feeling better and better. No massive improvement, I just look back every week or so and realise that my energy levels and walking has improved slightly. I joined the gym as now I'm bored in the evenings. Even after a full-days work with over an hour's commute on the trains each way I now still have energy to do stuff in the evenings. Even though I'm feeling better, I don't think my EDSS has dropped as I still have problems with balance, coordination and sensation, though improved so that still puts me in the 3 bracket. I no longer have any strength issues. Well need to build up my muscles, but jars no longer defeat me.

14/4/2010) Well after 2 weeks of Pilates and gym, I feel fantastic! Fatigue is a thing of the past, my walking is stronger and quicker. Coordination is still an issue, I tend to trip over my own feet if I walk too fast on the treadmill. And balance, I pick a spot near the wall in Pilates. But my strength and stamina are improving rapidly, and I think its only by challenging myself that new neural connections will be made and balance and coordination will improve. And I've decided to come off Tysabri, my last infusion was end of March, no more for me!

(15/7/2010) Its been awhile since my last update because the improvements have been pretty subtle and I did my knee in which put me back on crutches for 3 weeks. Now I'm back at the gym I can really see how much I've improved, even after being a couch potato for a few weeks. My balance, strength and energy continue to improve, I now have more energy than I've ever had in my life! I went to Iceland 2 weeks ago and it was my dodgy knee rather than lack of energy that stopped me walking for more than an hour at a time. Though I confess that walking on uneven, rocky surfaces did expose my less than perfect balance, on normal pavements I'm fine! A note on coming off Tysabri, it took about 2-3 month for it to leave my system and I feel better for it. I'm no longer grumpy and menopausal (not a good feeling at the age of 31) my body is getting back to normal on that front, and I don't have the dread of going to hospital every 4 weeks. Now I'm counting down to my round the world trip in less than 2 months!

EDSS as of this update: 2.5 self-assessed
FSS as of this update: More energy than I've ever had in my life!
MSIS as of this update: 36

CCSVI TRACKING 02/08/2010


MS HISTORY
Name BRYNN
Male/Female: F
Age: 41 YRS
Date(s) & type of neurological diagnosis SPMS
Lesion locations (most affected side, if known), number: FOUR LESIONS
MS treatments: AVONEX, REBIF, TYSABRI, LOW DOSE NALTREXONE
MS symptoms before stenosis intervention: RIGHT FOOT DROP,NO BALANCE, BLADDER INCONTINENCE, FATIGUE, LABORED BREATHING, WEAK VOICE, CIRCULATION PROBLEMS IN FEET- PURPLE AND COLD, RECENTLY RIGHT HAND MOSTLY UNUSABLE AND UNABLE TO BEAR WEIGHT MOST OF THE TIME.
Number of relapses before intervention (if applicable): TOO MANY…
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 6.5
Are you using Inclined Bed Therapy I.B.T? NO
Have you had testing (and possibly procedure) for blockage yet: YES!

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Katowice, Poland Surgery January 21, 2010
Type of venographic study: MRV and Doppler completed
Diagnosis: Blockages in both jugular veins
Type of procedure: Ballooning both veins with the insertion of a stent on the right jugular.
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:
Before CCSVI, annual relapses until RELAPSE IN 11/2004. Took the original version of Tysabri in 01/2005 until it’s cancellation in 03/2005 with terrific results. Proceeded without MS meds until the birth of my son in 10/2006. Following labor, shifted from RRMS to SPMS with continual deterioration until surgery.
My symptoms/condition prior to CCSVI surgery: Right foot and leg are basically non-functioning, use WalkAide stimulator on my right leg, using walker in home with labored walking, Wheelchair use outside of home, no balance, daily fatigue with need for frequent reclining and daily naps, incontinence, circulation problems in both feet- purple coloring and cold, neck pain each day on left, rear side of neck, difficulty taking deep breaths, do not sweat, heat intolerance, very low blood pressure (typically 100/60.)
Condition following CCSVI surgery:
01/22 Day One following procedure: Warm feet and normal coloring, better balance, could bear weight a bit, no pain in my neck. The Dr. sent me away with one month's worth of Clexane blood thinning shots.
01/30: Set back by the flu.
02/08: First day back to full strength following the flu. Started physical therapy last week to begin building lost muscle with goal of rebuilding walking strength, Fatigue is gone, naps are not necessary to get through the day, neck pain is gone, can bare weight for longer periods of time, improving balance, warm feet and hands, normal coloration although a bit of swelling in my right foot, can sit in a straight backed chair without losing core strength for several hours, can now take normal, deep breaths, voice strength is 80% improved, beginning to see improvements in the functioning of my right hand, am beginning to sweat. My blood pressure has consistently risen to 120/70. I am VERY pleased with my current condition and look forward to more improvement as I get stronger. I thank God and Dr Simka’s team every day for all these life improvements.
02/27/2010 Boy, time flies! I am still feeling good. My physical therapy is productive, but rebuilding will be a long process. I am so anxious to get stronger, that I get impatient with that at times. My most pleaurable thing is the swimming pool. The bouyancy and some boards allow me to walk laps in the pool and really concentrate on correct walking. It feels great and really stretches me out, too. I would REALLY recommend it! Here are my ongoing benefits:
Warm hands and feet, more normal color. The swelling is gone.
Stronger bladder
Normal breathing
Neck pain is gone
Better balance
Right foot is becoming increasingly responsive
Fatigue is largely gone
Stronger core muscles/trunk strength

On the downside, which really isn't down, is the emotional side of recovery. I am now walking the line of overdoing it physically, in my efforts to rebuild muscle. That can cause frustration due to pure unreasonable impatience. And YES, I do still have about one day out of ten that is truly a bad day. But I will say that my BAD Days now are better than my best days last December, before the procedure...
I have finished my blood thinning shots that I brought home from Poland and would recommend to everyone going to Poland, that you get a better explanation of after care issues than I did. I did not ask those questions and have not been able to get my emails through. I just went to the Supplement store and got several items for vein health and that promote thinner blood. I will post those after I have been on them ffor a few days. For the most part, it's all good!

03/14/2010 So, I had my surgery on January 21st. At that time, I had angioplasty with a stent placed into my right jugular and had the angioplasty only on my left. I saw tremendous improvements with no fatigue, improved balance, warm hands and feet, a stronger voice, better breathing, no more sore neck and my constantly low BP of 100/60 had gone to a normal 120/80. I felt so good that I began physical therapy and pool work. Fast forward to about 6 weeks later, and I began to have some bad days and in the first week of this month, I realized that all of the gains I had made are gone. Of what I listed above, my breathing is still better, but everything else has gone back. It is probable that the left jugular has become restricted again. Euromedic has been good enough to squeeze me in for a probable second stent on my left side toward the end of April. It will be a bit hard to wait, but now I know the improvement that I can look forward to getting back! I believe in this treatment now, more than ever because after 6 weeks of proper BP readings following my surgery, my BP last Wednesday was back down to 100/60. Obviously for my body, having the proper flow on one side is not enough to keep me well and improving….So, back to Poland I go and the adventure continues!

_________________
41 years old, dx 1998, current EDSS 6.5

MS HISTORY
Male/Female: M
Age: 28
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS since 1998, CDMS 2000
Lesion locations (most affected side, if known), number: can't remember but many small lessions
MS treatments: 2000-2006 Rebif, 2006-2008 Betaferon, 2008 - Tysabri
MS symptoms before stenosis intervention:
severe fatigue, trouble walking, left eye vision impair, severe spasticity in the legs, severe vertigo when lying flat supine, cold hands and feet
Number of relapses before intervention (if applicable): 2/year
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 4.5-5.0 self assessed
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: Testing 12/4/2009, procedure 1/6/2010
Type of venographic study: (MRV, Doppler) Doppler
Diagnosis: pathologic valve in the right jugular, mild stenosis in the left jugular
Type of procedure: balloon angioplasty

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
1. Spasticity down by 80%
2. Vertigo down by 80%
3. No overwhelming fatigue
4. Better stamina while walking
5. Warm hands and feet
6. Higher libido
7. Deeper sleep
8. Better stair tackling (both ways)
9. Easier driving (operating the pedals)
10. 80% better heat tolerance (hot showers)
11. Stronger muscle tension
12. Normal blood pressure. Used to be 100-115/60-80, is 120-130/75-85

EDSS as of this update (self-assessed or physician-assessed?) 4.5 self assessed

note: please do not post in this thread unless you have or are scheduled for ccsvi treatment!

CCSVI TRACKING (15 Feb 2010)

MS HISTORY
Name: Dunkempt
Male/Female: M
Age: 47 at procedure (born 1962)

Date(s) & type of neurological diagnosis:
dx rrms August 2009. dx Chronic Fatigue Syndrome 1988 (drs and I assume CFS was really MS all along).

Lesion locations (most affected side, if known), number: About 11 - seem evenly distributed.

MS treatments:
Avonex for 3 months only. Clonazepam, Wellbutrin, Modafinil,

MS symptoms before stenosis intervention:
Physical, cognitive fatigue. Impaired short-term memory, difficulty finding the right word. Slight limp, heavy right foot. Went from tireless walker to 2-mile limit (much worse in acute phases). Loathe hot weather. Numbness in fingers and toes, mouth; some difficulty with speech, swallowing; heavy right eyelid. Depression, emotional lability. Cold hands/purple feet. Spells of Vertigo

Number of relapses before intervention (if applicable):
2 since 2008; 2 or 3 major disabling spells of CFS ~20 years earlier.
Most symptoms swim up and down over the course of any month.

EDSS before CCSVI intervention: 1.5 self-assessed
FSS before CCSVI intervention: 4.3 (but have struggled with fatigue for 20+ years, so I may be under-reporting)
MSIS before CCSVI intervention: 61 (caveat as above)

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

Have you had testing (and possibly procedure) for blockage yet:
Yes - testing and procedure at EuroMedic clinic 24-25 March 2010

Type of venographic study: MRV + Doppler

Diagnosis:

Type of procedure: Ballooning, stent on right side; ballooning only on left.

Procedure/drug related symptoms:
Sore neck, some dizziness - I am guessing a side effect of the blood thinners. Groin sore. Increased intolerance for Neurologists.

Number of relapses since first CCSVI intervention: 0

Impact on your MS symptoms in words:
From time I returned to hospital bed following procedure, warm hands and feet. From morning after, much reduced cognitive and physical fatigue. Up till 11pm talking and socializing the night after. Walked around Katowice for hours the 2nd day. Walked around Krakow for longer hours the 3rd day, etc..

More alert and energetic than I have been for more than 20 years. Colour better. Stronger voice. Sudoku times improved by 50%...

also had improvements in swallowing and bladder function noted below almost at once

*6-Month Update* 20 Sept 2010

All improvements remain; have probably been gaining in energy and ability even more.

-At about 3 months I found myself getting down just because the initial improvements had been so strong and then I had to face that I still have MS - and a good deal of the "neurological" symptoms - patches of numbness, etc. - may never get much better than they are now. There are good days and bad days still for those, though they cycle at a higher level. And they are all *EASIER TO COPE WITH* because of my vastly improved energy, but still...

ON SLEEP:
Since the procedure my sleep improved greatly and almost at once: I fell asleep quickly, slept deeply, wake easily, and began dreaming properly again, in a way I hadn't for many years. Probably I have been *sleepy* more often than the procedure, but much less *exhausted*.

-At about 4 months, I started the long process of getting off Clonazepam (Klonopin), which I had required to sleep for 15 years. The last drop (from 1/2 a pill a night to none) certainly the worst: took about three weeks to sleep properly, and for withdrawal symptoms to (mostly) pass. But I have nights like a nearly normal person now: no repeatedly waking with a jerk and a gasp, etc.. I sleep deeply and wake well. Also I can just have a nap in the afternoon and wake refreshed, something which hasn't been possible for 20+ years.

- now that we're through the summer I can report that my heat intolerance has disappeared. We have pretty hot summers here in the centre of the continent, and it is often nearly unbearable for me, but this last summer, people would complain about the heat and I would be surprised. I sweat more too, which means more laundry.

- swallowing much improved (has been from the start, though I forgot to note it)

- bladder function much better. In fact, I hadn't realized I was having any significant bladder problem; I "hesitated" when starting and often dribbled a bit afterwards. I just thought I was in my 40s. Both of those issues disappeared almost at once: now urination begins and ends in a pretty binary way. Again, noted this almost at once though I forgot to note it earlier.

*Just past the five month mark I suddenly developed non-pulsive tinnitus in my left ear. Is this a sign that blood flow in my left jugular (which was only ballooned, not stented like the right) is beginning to deteriorate? Or that it is moving to some even better level. Don't know yet!

Most important result: half a year in, and I becoming stronger and more myself every month. I am *Nearly Normal Man!*

*7-month update*
Doppler scanning shows stent, angioplasty, still functioning. Tinnitus continues, numbness/stiffness still comes and goes, apparently triggered by stress/allergies, etc. O/W, life is good.

CCSVI TRACKING

MS HISTORY

Name: Cindi
Female
Age: 50

Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): Probable MS 4/2003 and RRMS 4/2008

Lesion location: Brain, number: 8

MS treatments: Rebif for 9 months then Tysabri 11 Infusions

MS symptoms before stenosis intervention: Headaches, fatigue, numbness, spasms, tinnitus, itching, memory loss, cognitive issues, speech issues, weakness on left side, constipation

Number of relapses before intervention: 6+

EDSS before CCSVI intervention – self-assessed: 6.5

FSS before CCSVI intervention: 6.1

MSIS before CCSVI intervention: 89

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

Have you had testing and procedure for blockage yet: Yes


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 9/3/2009 Stanford

Type of venographic study: (MRV, Doppler)

Diagnosis: Stenosis in Left Julgular, Occluded Right Jugular due to Arachnoid Cyst in Sigmoid Sinus

Type of procedure: Stent in Left and Right Jugular and balloon in narrowing where L and R Jugular meet.

Procedure/drug related symptoms: none


Number of relapses since first CCSVI intervention: none

Impact on your MS symptoms in words: Less fatigue, less headaches, stronger left side, less heat intolerance, better concentration, better mobility

EDSS as of this update: 2.5

FSS as of this update: 3

MSIS as of this update: 50

UPDATE: 4/4/10

I had my last Tysabri infusion February 1st. No more no more no more! Feeling better since stopping Ty and I don't want to ever do that again.

The winter has been a bit depressing, it has rained and rained and rained and I have not been able to get out much nor have I wanted to get out in the wet cold weather. I also attribute some of the depression to the Tysabri since it made me very sick a week to 10 days after each treatment for a week to 10 days each month. That is gone!!

Spring is exciting. I look forward to spending lots of time outside and not feeling like a zombie from the heat! I know I need to get my butt off the couch and get moving and that excited me since the weather has been great the last few days.

All in all I am so much better than before the procedure.

_________________
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

MS HISTORY
Name (if want to give other than TIMS login name):
Male/Female: (M/F) M
Age: 37
Date(s) & type of neurol‚1ogical diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS
Lesion locations (most affected side, if known), number:
MS treatments: steroids
MS symptoms before stenosis intervention: Numbness, fatigue, unable to stand or walk even with canes
Number of relapses before intervention (if applicable):
EDSS before CCSVI intervention (self-assessed or physician-assessed?): 8
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandedd ... scale.html ]
FSS before CCSVI intervention:
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? (Y/N) N

Have you had testing (and possibly procedure) for blockage yet: (Y/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: testing in Belgrade on 11.12.2009, procedure in Nis on 11.01.2010
Type of venographic study: (MRV, Doppler) dDopler
Diagnosis: Stenosis in left jugular vein. 4 mm
Type of procedure: baloon
Procedure/drug related symptoms: aftear procedure pjlebodia andf aspirin
[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): less numbness, less fatigue, able to walk with canes for 20 m. with resting even more
EDSS as of this update (self-assessed or physician-assessed?) 6.5
FSS as of this update:
MSIS as of this update:

NOTE: For more details and comments go to:
(Liberation) http://www.thisisms.com/ftopict-10392.html
(Diary) http://www.thisisms.com/ftopict-10391.html

MS History
Alby
Male
Age: 52
Diagnosed 1990 RRMS. Since 2001 SPMS
Lesion in brain and spinal cord. Affected both sides.
MS treatment: Novantron (will stop taking it)
MS symptoms before stenosis intervention:

1. legs, arm, fingers, back, abdominal muscle weakness.
2. severe foot drop
3. balance loss
4. sensation loss (numbness) all over in various degrees.
5. fatigue.
6. brain fog.
7. edema.
8. spasticity of legs
9. spasm of legs
10. stiffness of legs
11. shortness of breath (sometimes)
12. heat intolerance
13. depression (side effect of MS)
left side worse than right.

Number of relapses before intervention: since 1990 more than 15 times.

Condition (self assessed): EDSS 7 - FSS 6.5 - MSIS 116 out of 145

I use partial Inclined Bed Therapy. (4” high at head inclined down to flat at waist.)

Doppler done, didn’t hear the results - Poland (Feb. 11, 2010)
MRV, showing narrowing of both jugulars and azygoth - Poland (Feb 10, 2010)

Impact on your MS symptoms:
improvements are selective, random, and in various degrees.
The following are my results to 9 days after the procedure by date:

Feb 11 to Feb. 15, 2010: no improvement.

Feb 16, 2010:

A – some leg muscles stronger (5%), can get off and on wheelchair without help.
B – brain fog less (5%).

Feb 19, 2010 (9 days after):

A – more arm muscle strength (5%)
B – better fingers control (10%)
C – better abdominal muscle strength (20%)
D – better back muscle strength (15%)
E - less fatigue, more alert (5%)
F – less depression, more confidence (50%)

(update March 2, 2010)

Since yesterday, I can stand for 30 seconds, being able to look around and move my arms around, without losing my balance. I only tried 30 seconds, I might be able to stand more.

(update March 22, 2010)

I now can stand without support for one to two minutes depending on the day and the level of my stiffness. I can do more exercise. fingers are stronger and grip better I am more alert, brain fog is 90% gone. Prior to the procedure I used to lie down after shower to rest for half n hour to an hour, now I don’t.

sunlounger
Male
Age: 34

http://www.thisisms.com/ftopict-9667.html 13th Jan 2010
http://www.thisisms.com/ftopict-11593.html 7th May 2010

MS History:
2003 diagnosed RRMS, 2005 diagnosed SPMS

Lesion locations:

MS treatments:
2005 Best Bet Diet various supplements
2007 LDN (26 months didnt feel it was helping)
2009 DMSA chelation (6months)
2010 CCSVI treatments

Inclined Bed Therapy: Yes since Nov 2009

MS symptoms before stenosis intervention: spasticity and extreme stiffness, fatigue, loss of strength in lower limbs ,bladder urgency ,heat intolerance, standing and balance problems,cold feet and right hand

EDSS 6.5 8/2009 (self assessed)
FSS before CCSVI intervention: 6 (range 1-7)
MSIS before CCSVI intervention: 99 (range 1-144)
Have you had a procedure for stenosis yet: YES

STENOSIS PROCEDURE HISTORY

Date/location of testing & procedure: MRV 11th and Doppler 12th and procedure 13th Jan Katowice Poland,found I had restenosis in March so returned 7th May left jugular implantation 2 stents (Wallstent 16x60 & 16x 20),right jugular balloon (cordis 14x40)

Type of venographic study: Eco-Doppler Color and MRV (FIESTA and 2D TOF scan of veins in the neck and azygous ,one + T2 fatsat of the neck in axial and coronal views)

Diagnosis: Stenosis in left & right internal jugular veins.

Type of procedure: Balloon angioplasty and stents

http://www.youtube.com/watch?v=mS8hRladS5M 13th Jan 2010
http://www.youtube.com/watch?v=OOhoumPfzPk 7th May 2010

Procedure/drug related symptoms: None

6 month follow-up: Scheduled for Nov 2010. (Doppler)
Number of relapses since first CCSVI intervention: 0

Impact on your MS symptoms in words:

My symptoms have not change from before the 1st procedure in Jan and the 2nd procedure on the 7th May 2010

As of this update: EDSS=6.5 (self-assessed), FSS=6, MSIS=114 (range 1-144)

_________________
You might find that you’re not lost

Sunny
Male
Age: 45

http://www.thisisms.com/ftopict-10493.html
http://www.thisisms.com/ftopict-10492.html

MS History:
2007 diagnosed CIS

Lesion locations:

Brain, Spina Cord

MS treatments:
2007 Avonex
2008 AVonex
2009 April Onwards started LDN

Oil massage, walking

MS symptoms before stenosis intervention: spasticity and stiffness, fatigue.


EDSS None
Have you had a procedure for stenosis yet: YES

STENOSIS PROCEDURE HISTORY

Date/location of testing & procedure: MRV 16th Feb and procedure 25th Feb, Mumbai

Type of venographic study: Eco-Doppler Color and MRV 3T (dr. Hacke's)

Diagnosis: Stenosis in right upper internal jugular vein.

Type of procedure: Stent

Procedure/drug related symptoms: Pain around stent area

Impact on your MS symptoms in words:

My symptoms have not change from before the procedure