EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Joined: Dec 29, 2009 Posts: 38 Location: Southern Ontario, Canada
Posted: Sun Jan 03, 2010 3:29 pm Post subject: CCSVI
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.
Last edited by Bobbi on Thu Feb 04, 2010 2:50 pm; edited 5 times in total
Posted: Sat Jan 09, 2010 8:18 pm Post subject: SammyJo Baseline Status & Tracking Log Since CCSVI Proce
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
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 (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:
Quote:
Color-doppler sonography of jugular and vertebral veins:
Stenosis in the lower portion of left internal jugular vein, which is caused by a pathologic valve. Flow
rate in left internal jugular vein in the supine position is relatively low and the entire vein is collapsed.
Right internal jugular vein is normal. No pathologic reflux has been found in vertebral veins.
Interpretation of the examination
There are sonographic signs of the chronic cerebrospinal venous insufficiency due to pathologic valve
in the junctions of left internal jugular veins with brachiocephalic vien.
MRV:
Quote:
Internal jugular veins assymetry (P>L).
Internal jugular vein on the left markedly narrow especially along the
upper part.
Marked anterior jugular and deep cervical veins.
Mildly dilated external jugular vein on the left.
Internal jugular vein on the right narrowed at C5-7 level.
Hiperintense signals within internal jugular veins (slowing of the flow);
using 2D TOF sequence moderate flow disturbances within those vessels.
Azygos vein is not dilated with well seen flow within.
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
Joined: Feb 12, 2009 Posts: 865 Location: London, UK
Posted: Sun Jan 17, 2010 4:20 am Post subject:
A NOTE TO POSTERS:PLEASE DO NOT POST IN THIS TRACKING THREAD UNLESS YOU ARE REPORTING HAVING THE LIBERATION TREATMENT OR ARE DUE TO HAVE IT!!!
CCSVI TRACKING
MS HISTORY
Name: LR1234
Male/Female:F
Age:32
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other):RRMS (however I think it progresses without relapses too)
Lesion locations: 10, 9 on Brain and 1 on cervical spine C4/C5
MS treatments: LDN (never tried DMD), supplements ( Vit D, Q10, Multi vit,B12, B1,Niacin, Choline and inositol, Magnesium and Calcium, Spirulina, Best Bet diet (with increase of green veg).
Planning on doing Chelation therapy soon.
MS symptoms before stenosis intervention:
1. Weak and numb arms
2. Loss of sensation: Areas: Pelvis, mouth, head, arms
3. Visual issues: Nystagmus, unable to focus, pain/eye strain, floaters
4. Fatigue
5. Vertigo (with a bad relapse, seems to have gone pre op anyway)
6. Feeling of being unwell/fluey, (nausea, mild dizziness, spaced out)
7. Needing to use toilet more than the average person
8. L'hermittes and pins and needles down legs after walking
9. Mild tremors in morning
10.Diminished sense of taste
Number of relapses before intervention:5
EDSS before CCSVI intervention: 1.5-2 according to neuro)
FSS before CCSVI intervention:
MSIS before CCSVI intervention:
Are you using Inclined Bed Therapy I.B.T? (Y) Have been for a few months now.
Have you had testing for blockage yet: Yes
I have a blockage in the lower left jugular. Something seen on Doppler and MRV by Dr Dake and Dr Simka/Ludgya. Nothing seen by Dr's in the UK.
STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure: Poland, procedure 13th Jan
Diagnosis: Venography revealed blockage of left jugular vein (low)
Type of procedure: Balloon angioplasty
Procedure/drug related symptoms: Had slight problem with wound clotting,but once that healed I was able to resume heparin.
I have only had the procedure recently and so far have not noticed any major changes (sorry to dissapoint but I want to be honest!) My arms are still numb/weak and no sensation has returned to the areas mentioned above. Fatigue might have lifted slightly. I will report if I feel any changes positive or negative.
18/1/10: Woke up this morning with arms not weak and no tremors. I took a heavier dose of LDN last night 3.5mg and also took my first dose of spirulina again.
20/1/10 Feeling a feeling of pressure in the left jugular the last 2 days. Not sure if I have a mild infection or if my vein has restenosed so waiting to hear back from Dr Simka to have a check just to make sure everything is ok. I think there is probably some inflammation there causing the feeling of pressure.
25/1/10 The feeling of pressure in the neck seems to have died down a lot, I do have slight pain when sneezing or breathing deeply but its not painful.
I feel that my fatigue has improved a lot and I don't feel MSy (in my head) anymore which is massive. However I still have issues with my eyes,still have numb arms and when I wake up this can be pretty bad on some mornings, my L'hermittes is still present as well. I def feel better since procedure and I am not afraid to do 2 things in one day! it is still early days so I will keep you all posted.
28/1/10
Not a good report today I am afraid. My energy is still good and my eyes do feel better but my arms and legs the last day or 2 have been quite weak and numb especially at night (the left arm is the worse). ( should also add I am a lady and its the time of the month in 1/2 days and I have upped my LDN to 4mg 2 nights ago)
31/1/10 Arms no longer weak. (I have been taking a new regime of supps and increased my green tea intake and doing situps) Another issue has come back though, cold feet with mild Pins and needles in left foot. I really feel things go up and down. The things that are constant are my new energy, my eyes being a bit better, the tremors have stopped again in the morning. I do not feel that MSy feeling in my head. (I have gone for long periods of time without this though pre-op so I will have to wait to see if it stays).
Here are my scans: Thanks to Mark for putting them on the net for me:)
7/1/10
Been away (and am still away) in a hot country. First few days still had issues with weak legs when walking up stairs but 5 days into the holiday with lots of sun, good food and lots of exercise i don't feel MSy at all...I hope it continues.
20/2/10 Arms feel a lot better, have fatigue occasionally, ocaasionally feel pressure at the back of my neck. Been recently trying to detox heavy metals and was drinking large amounts of Green Tea and on a high sulphur diet. My floaters have got a lot stronger and I have had some eye pain. I have also been suffering with a bad cold. So I don't know whether this has caused a flair up of issues with my eyes or whether the green tea etc has. Gonna stop the detox for a while to see if things settle.
26/2/10 Still suffering with really bad cold:( Have been told by optician that I have some degeneration behind my eye (left eye, same side as the jugular vein that was operated on) Not sure if it was there before the op but I think it was as I could see floaters in that eye before the angio and I have had about 5 attacks on that eye in the last year. My vision is still perfect (except for the floater)Going to specialist in March to see whats causing it. Going back to Poland on the 9th March
4/3/10 Floaters still in left eye but seem less prominent. Eyes no longer bad, last 4 days been feeling really well! (no feeling of MS at all) I have been able to do 30 mins cardiovascular exercise as well. When I used to do cardio stuff I would get dizzy and my vision would go bad, now I can exercise without getting dizzy. (I haven't pushed myself too hard so it might happen if I work harder but I am able to workout now properly and I couldn't before) Taken lots of new supps as well. Gonna stick with this regime as it seems to all be working. (also been having reflexology)
7/3/10 Eyes playing up again. Slightly painful and nystagmus in right eye. Still do not feel MSy at all and can exercise. Still thinking I might have stenosis issues higher up in the jugular (as found with Ella) Will see what Dr Simka says. Maybe also there is still the issue of iron that will linger and trigger the immune system for a while.
BEFORE
AFTER
Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
Last edited by LR1234 on Sun Mar 07, 2010 3:24 pm; edited 15 times in total
Posted: Tue Jan 19, 2010 9:15 am Post subject: CCSVI TRACKING 01/19/2010
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
Did doppler same day as electric1 (nice to meet you again here!):
MS HISTORY
Male/Female: (M/F) F
Age: 39
Date(s) & type of neurological diagnosis: RRMS (diagnosis 2006 after strong instability relapse - but already optic neuritis 1996 - then 10 years symptom-free)
Lesion locations (most affected side, if known), number: most in vertebral column C3-C5.
MS treatments: Rebif
MS symptoms before stenosis intervention: did not have intervention yet. My constant symptoms are relatively light (invisible) - in particular needles in hand and feet/numb toes and fatigue.
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 colour doppler. Procedure: Not yet.
STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure: 19 Jan 2010, Katowice Poland
Type of venographic study: (MRV, Doppler) Color Doppler
Diagnosis:
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."
(My own remark: Saw the jugular vein problem myself on the screen - doctor showed me/stopped pics:
While the common carotid artery (CC) was fully red, the jugular vein (IJVl) had just no colour at all(black whole!) = no blood flow. And at another point inside the left jugular one saw just like tiny coloured blue dots, moving like little worms = disturbed/obstacled blood flow. On the other hand: On the right side, where no problem one could observe a red artery and full jugular (IJVr) blue vein. Also, in another view of the left side (think not cross section) in the IJVl one saw wishy white things at a certain point, like a valve block in the vene. Seeing all this was quite convincing!) _________________ Zamboni and Simka: Heureka!
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.
(01/17/2010) 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. _________________ 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.
Last edited by Pepe on Wed Feb 17, 2010 2:02 pm; edited 2 times in total
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
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? No
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.
EDSS as of this update: 3.0 self-assessed
FSS as of this update: 1.6
MSIS as of this update: 51
Last edited by Nees on Fri Feb 12, 2010 9:01 am; edited 2 times in total
Joined: Nov 29, 2009 Posts: 66 Location: Spokane, Wa
Posted: Mon Feb 08, 2010 11:29 pm Post subject:
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!
I look forward to the day when everyone can benefit from this procedure! BRYNN _________________ 41 years old, dx 1998, current EDSS 6.5
Last edited by Brynn on Sat Feb 27, 2010 2:19 pm; edited 3 times in total
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
Joined: Nov 30, 2009 Posts: 61 Location: Heart of the Continent
Posted: Sun Feb 14, 2010 3:38 pm Post subject:
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
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: -
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:
Scheduled for EuroMedic clinic 24-25 March 2010
Last edited by dunkempt on Tue Feb 23, 2010 8:50 am; edited 1 time in total
Joined: Jun 02, 2008 Posts: 756 Location: Mississippi
Posted: Sat Feb 20, 2010 10:54 pm Post subject:
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 _________________ 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/expandeddisabilitystatusscale.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:
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.
Last edited by alby on Tue Mar 02, 2010 4:38 pm; edited 1 time in total
MS History:
2003 diagnosed RRMS, 2005 diagnosed SPMS
Lesion locations:
MS treatments:
2005 Best Bet Diet various supplements
2007 LDN
2009 DMSA chelation (6months)
2010 Starting Klenner Protocol http://www.mymultiplesclerosis.gr/
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
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 lower internal jugular vein.
All times are GMT - 6 Hours Goto page Previous1, 2, 3, 4Next
Page 3 of 4
You cannot post new topics in this forum You cannot reply to topics in this forum You cannot edit your posts in this forum You cannot delete your posts in this forum You cannot vote in polls in this forum
We encourage you to also visit our Multiple Sclerosis support community on Experience Project.
Experience Project is a vast and powerful community where people connect anonymously through life experiences. It's made by the same people who built This is MS,
on the premise that no single life experience-- like having MS-- defines a person. EP now covers over 5 million true stories about every possible life experience. Find and share yours!
Forum FAQ
Search
Usergroups
Profile
Log in
