Multiple Sclerosis (MS) Support Group

radeck
Family Elder

http://www.thisisms.com/ftopict-83...
Joined: Feb 17, 2009
Posts: 235

Posted: Mon Oct 05, 2009 10:34 am Post subject: CCSVI tracking project
[The following introduction and example format is open for edits based on comments from TIMS users. Comments can be discussed in the thread that initiated this one here: http://www.thisisms.com/ftopic-829... or via pm. Thank you.]

The purpose of this thread is to get an overview of the experiences of patients affected by CCSVI who received/are going to receive testing and procedure (ballooning, stents, open neck surgery, or other), be it in Italy, Poland, USA, or elsewhere (we hope to include translations of this introductory post in the near future). Now there has been a "patient log" thread here already, but it ended up loosing structure as newbie's and other's who got exited commented on patients logs. Here we hope to collect as many accounts as possible, neatly organized without interruptions so that newbie's and others can get an overview of side effects and subjective as well as objective efficacy of the treatment. For quantitative tracking purposes, the FSS, MSIS, and/or EDSS scores, as well as number of relapses (if applicable) will be important. Once tabulated, this will allow us to show a snapshot of group progress.

So, the idea of this thread is to have one post per patient, each of which will hopefully be updated regularly using the "Edit" feature, basically however often patients like (though probably not too often as this might make the long term development hard to follow). Edits should be to the point and could include past MRI and other test results, original CCSVI testing results, side of major IJV stenosis (if applicable), side of most lesions as well as symptoms, experiences with the treatment and post-treatment medications, and perhaps most importantly, CCSVI/MS symptoms pre and post treatment.

Finally, if you could post MRV images of your stenosies, that would be fantastic to give people a feel for what kinds of malformations we're looking at. I found http://photobucket.com/ a hassle-free site for uploading and hosting images anonymously.

For the sake of keeping the thread neatly organized, we ask others to refrain from posting comments on patients logs. Comments outside of personal CCSVI accounts will be erased by the moderator.

=======================================================

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

MS HISTORY
Name (if want to give other than TIMS login name):
Male/Female: (M/F)
Age:
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other):
Lesion locations (most affected side, if known), number:
MS treatments:
MS symptoms before stenosis intervention:
Number of relapses before intervention (if applicable):
EDSS before CCSVI intervention (self-assessed or physician-assessed?):
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expa... ]
FSS before CCSVI intervention:
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fati... ]
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]



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

STENOSIS PROCEDURE HISTORY

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

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

Last edited by radeck on Sat Oct 24, 2009 1:20 pm; edited 17 times in total
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Sharon
Family Elder


Joined: Nov 08, 2004
Posts: 838
Location: Colorado
Posted: Mon Oct 05, 2009 11:00 am Post subject:
Patient Name: Sharon

MS History
Female
Age: 66
Diagnosed 2003 RRMS
Lesion locations : cervical spine C2-C4; low lesion burden in subcortical and periventricular white matter.
MS treatments: Diet, exercise, LDN since May of 2008
MS symptoms before stenosis intervention: left side weakness, foot drop, loss left palmar muscle wasting, little cognitive impairment, slight imbalance when ambulating, tinnitus. Use WalkAide
EDSS before stenosis intervention 4-4.5
Stenosis Procedure History
June 2, 2009 - Stanford Hospital
MRV/MRI - Ultrasound
Diagnosis: Narrowing of the left IJ vein extending approx. 6 cm below
the left jugular bulb. Left jugular venography showed long segment of stenosis with significant collateral venous channels.
Procedure: Stenting of the left IJ vein with a 10 mm self-expanding stent and 2nd stent placement at valve at the junciton with left brachioceohalci vein.
Procedure/drug related symptoms: Major problems with muscle spasming in neck (levator muscle) and shoulder; treated with massage, muscle relaxors, acupuncture. Four months out from surgery and shoulder is at 90%.
Number of relapses since CCSVI intervention: -0-
Impact on MS symptoms: Less spasticity in left leg; facial pain is gone; right side back pain is gone; normal sweating; high altitude headaches gone; walking gait is smoother. No progression since intervention.
EDSS 10/5/2009 - 4.0
FSS 10/5/2009 - 2.88 - Fatigue has not been a symptom for me
MSIS 10/5/09 - 61 -
Sharon

Last edited by Sharon on Fri Oct 16, 2009 3:34 pm; edited 1 time in total
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mrhodes40
Family Elder


Joined: Sep 24, 2004
Posts: 1812
Location: USA
Posted: Mon Oct 05, 2009 12:27 pm Post subject:
MS HISTORY for Marie
Female
Age: 48
Diagnosis: 1991 Dx RRMS, May of '08 SPMS
Lesion locations: 4 Perventricular lesions left hemisphere seen on 1.5 MRI, right sided weakness. All spinal MRI's clear. No inflammation for years on MRI, no enhancement.
MS treatments: Copaxone, supplements, failed treatments: LDN, ABX x 3+yr,
MS symptoms before stenosis intervention: Severe drop foot right (foot is totally incapable of function, can't even willingly move a toe; really limp) right sided hand weakness, writing is difficult. Cane depenent, Rollator for long distances (mall etc). No cognitive issues. Mild urinary retention and voiding 4-5 times at night. Flexor spams at night requiring Baclofen and Requip for many years. A test of a Walkaide functional electrical stimulator failed due to spasms. Stiffness upon standing. Sleeping difficulties; wakefulness and chronic daytime fatigue with Epworth sleepiness scales ranging from 11-17 over the last 2 years on MD assessment sheets.
Number of relapses before intervention (if applicable): none.
EDSS before stenosis intervention: 6+ self assessed. I use the rollator for long distances which is "bilateral support" but I can walk with the cane for 100 yards so is that a 6 (unilateral support) or more?

MSIS (estimated 10/09) before procedure 106
FSS before procedure (from my own MD records) 6

STENOSIS PROCEDURE HISTORY
Date/location of testing&procedure: May 19 Stanford
Type of venographic study: MRV, MRI Doppler
Diagnosis: Bilateral jugular occlusion 80-90% with extensive collateral circulation.
Type of procedure: Stents 8x40mm left, 12x40 right
Procedure/drug related symptoms:
1. I have spinal accessory nerve damage from the right stent. It is expected to heal in 9 more months. This is painful and causes weakness in the right shoulder.
2. I also had a rectus sheath hematoma-a bleed into my stomach muscles from the surgery that kept bleeding because of the coumadin.
3. Blood clot in the left calf.

Number of relapses since first CCSVI intervention: None.
Impact on your MS symptoms: [10/09]My changes are mostly very subtle. I feel energetic and awake, can walk for much longer without the drop foot tripping me, and am awake all day. I can even do back to back days of activities where before I would have to have days off between. Rest rejuvenates me so that a few minutes of rest allows me to go again, for example at the mall. Heat bothers me less. I no longer feel unnaturally cold all the time; I can keep my body warm as others can.
I no longer take Baclofen or Requip at bedtime and have very few spasms at all at night, fewer than I used to have ON the drugs. Can now use a Bioness functional electrical stimulator to correct the drop foot as spasms are so greatly reduced. I sleep well and wake to void perhaps once a night. Epworth sleepiness scales are now 4-5 (normal)
EDSS as of 10/09: no change at this point 4 months out from surgery..This is expected due to 18 year history of MS with progressive course,

MSIS as of 10/09 85 (down from est. 106) Biggest changes are in spasms, anxiety confidence sleeping feeling unwell worrying. These were significant before 1's now.

FSS as of 10/09 4.5. My own doctor keeps this record so the difference is from actual medical records. Biggest difference is overall it is much less a factor in my life. I still get tired but I recover so I can still do things.

As a comment I do not feel "cured": I feel like a woman with MS, my hope is for no progression. I also have a longer regimens thread "Marie's Stents CCSVI"
_________________
I am not offering medical advice, I am just a patient too! (clickable)Bilateral jugular stents for severe jugular blockage 80-90% at Stanford may 19 '09

Last edited by mrhodes40 on Tue Oct 27, 2009 4:34 pm; edited 2 times in total
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cheerleader
Family Elder


Joined: Sep 11, 2007
Posts: 2108
Location: southern California
Posted: Mon Oct 05, 2009 1:16 pm Post subject:
MS HISTORY
Jeff
M
46
RRMS diagnosed 3/07 (age 43) after first serious exacerbation
20 small, round lesions (Steiner's splashes) most in corpus callosum. One spinal lesion at C-3.
Program: Copaxone, endothelial health program (exercise, Swank diet, many antioxidant and vasodilating supplements)
MS symptoms: Fatigue, depression, emotional lability, heat intolerance, urgent bladder, leg pain, spasms, disturbed sleep, sleep apnea
Jeff has no peripheral vision. Diagnosed with bilateral drusen as a child. Depression and fatigue had also been around for 15 years prior to diagnosis.
Only one relapse, at time of diagnosis
Fatigue Severity Scale 6.5 (fatigue was hugely disabling)
1.5 EDSS
Had procedure to relieve stenosis at Stanford May 12, 2009


STENOSIS PROCEDURE HISTORY
MRV and doppler completed at Stanford University
Diagnosis: dual jugular stenosis, left closed 95% with many small collateral veins, right closed 80%
Blockage was very high, between C2-C4
Type of procedure: two telescoping, self-expanding stents on left side, one on right side
Procedure/drug related symptoms: Severe nausea during procedure, head and neck pain after, relieved with extra strength tylenol. Shoulder pain and spasms from accessory nerve pinching, relieved with hot towel and pain relievers, gone after 9 weeks.

Second procedure done at Stanford, July 21, 2009
Ballooning of left stent to remove thickening of the endothelial lining at the bottom of the stent. Did much better, no nausea, no pain. Did not take any medications during this procedure. Slight headache after relieved with tylenol.

No relapses since procedure

Impact on MS symptoms. Immediate and profound affect on fatigue. No longer has that sense of "I can't keep my eyes open one more minute." Clearer perception, better mood. Much better heat tolerance, able to exercise in heat with no fatigue. Vastly improved sleep. No more sleep apnea or jarring spasms. Now sleeps deeply and is dreaming again. Smooth regular breathing, wakes up refreshed and ready for new day. Gets up once a night at most to void...much improved bladder.
Still has occasional leg pain and spasms.
1 EDSS
Fatigue Severity Scale 3
_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Last edited by cheerleader on Sun Oct 11, 2009 11:02 am; edited 1 time in total
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Sport
Getting to Know You...


Joined: Jul 06, 2009
Posts: 24
Location: Midwest, USA
Posted: Mon Oct 05, 2009 1:59 pm Post subject:
Patient Name: Sport

MS History
Male
Age: 43
Diagnosed 2005 PPMS

Lesion locations : T9 posterior to the spinal cord, midline and to the left. Probable lesion in the dorsal cord at C2-3. In the brain, a few periventricular lesions in the left side of the pons. One of these is hypointense on T1 weighted imaging (aka a black hole). All lesions show normal enhancement.

MS treatments: Mitoxantrone (3 courses, 2006), Rituxan (4 courses, 2006 - 2008), Copaxone (5/09 - current)

MS symptoms before stenosis intervention: bilateral leg/flexor weakness, foot drop, little cognitive impairment, significant imbalance when ambulating, moderate/severe leg spasticity.

EDSS before stenosis intervention 6-6.5

Stenosis Procedure History
Sept 24, 2009 - Stanford Hospital
MRV/MRI - Ultrasound
Diagnosis: Left IJV markedly narrowed over a 5cm segment from the jugular bulb centrally. In addition, a tight narrowing of IJV at the level of the valve above the clavicle. In the right IJV, a high-grade flattening was noted at the level of C1-C2.

Procedure: Stenting of the left IJ vein with a 8 x 60 mm self-expanding stent and 2nd stent, 14 x 30 mm at the level of the valve. The right IJV was treated with 9 x 40 mm self-expanding stent at the C1-C2 level. No stenosis noted in the azygos vein.

Procedure/drug related symptoms: Moderate problems with muscle pain in neck (levator muscle) and right shoulder; muscle weakness in right arm.

Number of relapses prior to CCSVI intervention: -0-
Number of relapses since CCSVI intervention: -0-

Impact on MS symptoms: less spasticity in both legs. Slight bilateral increase in leg strength and stamina noted when riding recumbent bike.

EDSS 10/5/2009 - 6 - 6.5.
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Arcee
Family Elder


Joined: Jan 06, 2005
Posts: 248
Location: Massachusetts, USA
Posted: Tue Oct 06, 2009 1:38 pm Post subject:
MS HISTORY
Name: Randi
Male/Female: F
Age: 41
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS Spring 2004
Lesion locations (most affected side, if known), number:
Brain: Right Internal capsule. Bilateral periventricular white matter. Corona radiata and centrum semiovale. Right cerebellum. Ventral left medulla.
C-spine: most significant lesions are at C3/C4 levels
MS treatments: Betaseron for about a month until bad liver reaction. Copaxone, on and off, due to injection site reactions and current wait-and-see approach. Tysabri when first available, and then again when re-introduced, but allergic reaction stopped that treatment after 4 doses total.
MS symptoms before stenosis intervention: occasional tingling in my forearms and hands, a bit of fatigue or perhaps a lack of stamina, some heat sensitivity
Number of relapses before intervention (if applicable): 1 unbeknownst to me but showed on an MRI
EDSS before stenosis intervention :
0 - .5

Have you had a procedure for stenosis yet: Y


STENOSIS PROCEDURE HISTORY

Date/location of testing&procedure: 07/15/2009 Stanford University
Type of venographic study: MRV, Doppler
Diagnosis: tight narrowing at C2 that extends 3cm in left jugular vein; a 'functional occlusion'
Type of procedure: 7mm stent placed in left jugular vein
Procedure/drug related symptoms: Hardly any initial discomfort after procedure and none after a few days. Excessive bruising on aspirin/Coumadin/Plavix combo so discontinued Plavix


Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words :
While still at Stanford, feeling of going from digital cable to HD. Greater clarity visually and overall energized feeling. That sense of enhanced stamina remains. Heat intolerance has gone away.
EDSS as of this update: 0
_________________
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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gibbledygook
Family Elder


Joined: Feb 15, 2005
Posts: 1024
Location: London
Posted: Wed Oct 07, 2009 10:08 am Post subject:
Name: gibbledygook
Male/Female: Female
Age: 38
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): 03/24/2004 RRMS
Lesion locations (most affected side, if known), number: brain and cervical spine
MS treatments: avonex, antibiotics, herbs, stents
MS symptoms before stenosis intervention: difficulty walking, bladder control, bowel control, swallowing difficulties, sensory deficits in leg and hands, torso and face, inability to sleep owing to spasms, movement induced phosphenes, depression
Number of relapses before intervention (if applicable): 6
EDSS before stenosis intervention (self-assessed or physician-assessed?): 6.5 by physician


Have you had a procedure for stenosis yet: Yes

STENOSIS PROCEDURE HISTORY

Date/location of testing&procedure: 06/23/20009 Stanford University Hospital
Type of venographic study: MRV
Diagnosis: bilateral jugular stenoses at C1 to C2
Type of procedure: 2 4cm stents placed in left and right jugular, extra 2cm stent placed in left jugular
Procedure/drug related symptoms: severe pain post-operation, initially all around head, left cheek and shoulders. Later, for 2.5 months severe pain in both shoulders


Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms:
Significant improvement in bladder control; less urgency, greater control, able to partially void using sphincter muscles
Significant improvement in night spasms; far weaker spasms, sometimes even absent spasms, spasms respond to stretching and am able to sleep before 1am most nights
Improvement in spasticity and walking. Recently walked the furthest I have walked since becoming ill in 2004. Less severe spasticity on standing and in the mornings.
Greater resilience to humid conditions
Sensory deficit affecting left leg much quieter

EDSS as of this update: 5 (self-assessment)
_________________
1st symptoms Jan 01, last edss by doc 6.5. 06/09 bilateral jugular occlusions treated with 2 4cm stents and 1 extra 2cm stent on left side

Last edited by gibbledygook on Fri Oct 23, 2009 1:36 pm; edited 1 time in total
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Jamie
Family Elder


Joined: Jan 08, 2008
Posts: 566

Posted: Thu Oct 08, 2009 2:22 pm Post subject:
MS HISTORY
Melissa
F
33
RRMS diagnosed 8/07 (age 31) after first serious exacerbation
8 lesions, 2x black holes, including lesion on brain stem.

Program: Rebif, High Dose Chemotherapy (HiCy/Revimmune), Copaxone.


MS symptoms: Fatigue, depression, emotional lability, heat intolerance, left side weakness, clonus, disturbed sleep, no dreams.

Depression had also been around for 15 years prior to diagnosis. Heavy bout of constipation, double vision and severe depression immediately prior to diagnosis.

5+ severe relapses (bedridden for several days) pre-HiCy. 2x clinical but not supported by MRI relapses post HiCy and pre-stents. Dr.Kerr at Hopkins agreed that Mel was indeed relapsing despite the absence of MRI activity. Mel was losing left side ability (particularly leg) at the time of intervention.

1.5 EDSS

Had procedure to relieve stenosis at Stanford July 7th 2009.

STENOSIS PROCEDURE HISTORY

MRV and doppler completed at Stanford University

Diagnosis: Dr. Dake discovered 3x jugular veins in Melissa, the left side veins were twisted around each other in such a way as it was impossible to tell which was 'real' and which was collateral.

Her left jug is congenitally 'weird', twisted with poor flow and a very small sinus.

He fixed one stenosis there and would have liked to open up the sinus with a stent but considered it too risky.

Her right jug is very dominant and normal flow has been restored with a large stent and all the collatoral veins have disappeared.

Type of procedure: Fitted one 12mm stent in right jug and one 7mm stent in left. No azygous occlusion. The stents were on the jawline.


Procedure/drug related symptoms: Neck pain for 5-7 days post surgery. for 3 days after surgery Mel ground her teeth in her sleep (loud enough to wake me up!), other than that - no issues.


Zero relapses since procedure.

Impact on MS symptoms: Immediate and profound affect on fatigue, weakness, heat tolerance etc etc. Mel has so far had a complete clinical response to intervention. Mel has stopped her prozac and no longer needs any psychotherapy and her bowel control is now normal. Restarted a running regime (treadmill), long term goal to get back to full fitness. Prescription for eyeglasses changed to a weaker lens as vision has improved dramatically. Milking the cliche here but she too went from Cable to HD almost immediately and has remained there since.

EDSS 0.5 (Doctor assessed, essentially very few remnants of her MS symptoms apart from muscle/nerve damage to left eye means it doesn't track properly when tested by doctor but no longer interferes with Mel's vision.)
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SammyJo
Family Member


Joined: Mar 11, 2004
Posts: 78

Posted: Thu Oct 08, 2009 11:24 pm Post subject:
Thank you contributors!
If you haven't read instructions at the top of this tread please do before posting. This is a moderated thread, Comments outside of personal CCSVI accounts will be erased by the moderator.
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questor
Family Member


Joined: May 23, 2006
Posts: 78
Location: Northern Calif Monterey Bay Area
Posted: Mon Oct 19, 2009 6:21 pm Post subject:
Tracy (Questor)
Male
Age: 53

MS History:
1981 CIS (first episode of optic neuritis)
1987 Diagnosed RRMS (private neurologist)
2000 Diagnosed SPMS (UCSF MS Center)
Lesion locations:
Extensive areas of T2 and FLAIR abnormality within the periventricular white matter including an approximate 8mm lesion adjacent to the left frontal horn. Rather prominent T2 hyperintense lesions within the middle cerebellar peduncles, more prominent on the left and within the pons and medulla. Some of the more prominent lesions demonstrate decreased signal intensity on T1 weighting.
MS treatments:
Betaseron 1993 through 1996.
Copaxone since 1998.
LDN since 9/2008.
Exercise, Tai Chi, gluten- and dairy-free diet (BBD).
MS symptoms before stenosis intervention:
Gradually worsening problems over the years related to body fatigue, heat sensitivity, bladder and bowel problems, nausea, sexual impotence, migraines, lower body weakness, diminishing physical and mental stamina, nystagmus, poor left-eye vision and muscle control, gait instability, reduced sensation below the knees in both legs, lower leg spasticity (particularly at night), mental cloudiness, word slurring, and cognitive and short term memory weakness.
Number of relapses before intervention (if applicable):
Entire MS course has been relatively relapse free (except for the first few years in which relapses of optic neuritis, and episodes of double vision were not uncommon), disease course characterized instead by slow and steady progression,
EDSS before CCSVI intervention: 4 (UCSF MS Clinic 9/2008)
FSS before CCSVI intervention: 6.3
MSIS before CCSVI intervention: 70
Have you had a procedure for stenosis yet: Yes

STENOSIS PROCEDURE HISTORY

Date/location of testing&procedure:
Stanford Hospital Medical Center
Test completed 9/15/2009
Stent procedure 9/16/2009
Type of venographic study: MRV, MRI, Doppler
Diagnosis:
Stenosis in left and right internal jugular veins, at a location approximately behind mid-ear, extending down to upper jaw
Type of procedure:
Absolute Pro 9.0 Stent (9mm diameter, 4cm long) inserted into left IJV, right side stent diameter slightly smaller (7mm or 8mm).
Procedure/drug related symptoms:
Neck and shoulder pain, a couple of very bad headaches (in the first week), nausea and weight loss (about 12 pounds). Pain meds discontinued after 2 weeks, still us Tylenol at night to sleep. After 4 weeks, I am still only able to sleep flat on my back, using a neck pillow, but pain is pretty much gone. Unusual neck and shoulder muscle tightness continues, with slow improvement. Right arm is still very weak in certain positions when raised above right shoulder (right pectoralis major muscle does not activate in support of the movement). I have started light exercise again to speed recovery.
Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words:
[10/20/2009]
Significant reduction in nighttime spasticity in lower legs, and reduction in burning, tingling, numbness in legs/feet. Some reduction in heat sensitivity, but impossible to quantify. Increased dreaming activity. Moments of much improved mental clarity and broadened mental scope (including memory access). Haven't needed to self-cath since procedure, but wake-up 5+ times at night to void. Continue with ear acupuncture treatment and kegel exercise to control bladder leakage.

-- to be continued (upon recovery from procedure)

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

Last edited by questor on Wed Oct 21, 2009 2:58 pm; edited 21 times in total
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skydog
Family Elder


Joined: Feb 25, 2009
Posts: 249
Location: North Oregon Coast
Posted: Mon Oct 19, 2009 6:32 pm Post subject:
Mark (skydog)
M
52 yrs
PPMS
02 to 04 some periodic double vision and constant dull headache that would not respond to most over the counter medications.
04 to 05 same double vision, dull headache, occasional tremors in right hand and pins and needle feeling in left foot. Up to this point all Dr. visits were answered with go easy your just getting older and need to slow down a little.
05 to 07 I was thinking possible MS and was sent in for my first MRI by a Dr. I see too this day and trust will always listen to me!



Patient: Mark diagnosis: PPMS 5/07 ( at age 50 ) lesions: scattered foci of the T2 hyperintense signal within the pariventicular and subcorttical white matter with involvement of the corpus callosum and colossal skeptical margin. Mild T2 shine through involving largest lesion within left perivvenrticular white matter measuring 7 mm Symptoms: left drop foot, pins and needle feeling in left foot, left leg weak, severe headaches, double vision, loud noises and ringing in ears, urgent bladder and bowel issues, stiff neck, left hand numbness and weakness, not able to perspire, heat intolerance, eyes would twitch for days at a time, left side of face would tighten, left foot looked purple, head felt hot and feet and hands cold. EDSS: Physician assessed 5.5 Treatments: Candida cleanse, antibiotic ( lime disease protocol ), anti viral, Swank diet, chelating therapy 3 months, low dose naltraxone 3 months, reduced stress load from work, 85% raw food diet, eat home grown organic foods, Exercise daily. Despite all my lifestyle changes, treatments and diet changes I was still progressively getting worse.

Diagnosis at Stanford 6/29/09 MRV, MRI, Doppler, Ultrasound showed anomalies of both jugular veins very high up near the base of skull in upper sinus area, right side jugular had a major twist and short area of stenosis ( resembled a pigs tail ) left side sharper than normal bend high up. On 6/30/09 two 7mm diameter stents were placed high up in the right jugular.

Enjoyed a two week period directly following surgery of reduced symptoms. Certain issues that I had not even thought about had disappeared, and some still remained the same. Most noticeably my hearing had improved. No longer heard the sounds in my head of a busy welding shop, just a steady ring that would be expected of the years of exposure to loud diesel engines fishing and operating heavy equipment. Fatigued less, and heat tolerance was better. The 7 years of dull to severe headaches had vanished, and aside from an occasional twinge of pain near the stented area was pain free. I was able to lift my left leg a little higher, but the drop foot remained the same. The left hand still got numb and week but would recover quickly with a little rest. Still faced bladder control issues, but the urgency seemed less. I broke into a good sweat the second night of our trip home, just the arms and chest area but sweating for the first times in 3 yrs. My forehead would dampen, but only when nearly overheated and starting to fatigue. The scaly dry legs were starting to get oily and was hopefully the precursor to sweating there also.
Now after a noticeable downturn 4 weeks post surgery all former issues have returned plus a rather stiff sore neck. EDSS at present is 6.5 self assessed.

9/01/09 Follow up at Stanford revealed new stenosis of both jugulars much lower down in the neck area below the jaw. No reasons given for this yet. Waiting for a reply and new direction to take.

Last edited by skydog on Sat Oct 24, 2009 1:08 pm; edited 1 time in total
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CNClear
Family Member


Joined: Aug 29, 2009
Posts: 58
Location: Near Atlanta, GA
Posted: Fri Oct 23, 2009 1:18 pm Post subject:
MS HISTORY
Name: Lisa aka, CNClear
Male/Female: (F)
Age: 50
Date(s) & type of neurological diagnosis: RRMS dx 1983
Lesion locations (most affected side, if known), number:
MS treatments: Copaxone - 2 years, Avonex - 2 years
MS symptoms before stenosis intervention:
Number of relapses before intervention (if applicable):
EDSS before CCSVI intervention (self-assessed or physician-assessed?):
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expa... ]
FSS before CCSVI intervention: 6.5
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]



Have you had a procedure for stenosis yet: scheduled for Dec 8th & 9th, 2009 at Stanford with Dake

STENOSIS PROCEDURE HISTORY

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

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


Joined: Sep 11, 2009
Posts: 79
Location: Charlotte, NC
Posted: Tue Oct 27, 2009 2:33 pm Post subject:
Patient Name: Rhonda
MS history
Female
41
11/2003 RRMS
8 lesions total, some healed/disappeared from MRI : 6 mm flair abnormality in the right periventricular white matter with T2 white focus, right posterior frontal deep white matter lesion, Enhancing lesion right middle cerebellar peduncle, T2 hyper intensities at the right pontomedullary region and the right frontal region, Suspected spinal cord lesion, physical evidence only.
MS Treatments: Betaseron, Tysabri and Copaxone
MS symptoms before stenosis intervention: Migraines, right sided neck, back and shoulder pain, severe fatigue, numbness, balance issues, dizziness, stiffness, cognitive problems, anxiety, urinary urgency, weakness, MS hug, trembling,
Relapses: 7-9
EDSS: 5.5
FSS: 5.5
MSIS:100
Stenosis Procedure History
10/19/2009 - Stanford, testing and procedure, Dr. Dake
MRI of ther brain /MRV of the head and neck
Diagnosis: High grade narrowings of the upper jugular segments bilaterally at C1 and C2. Pressure gradients of 5 mmHg on left and right.
Procedure: 2 self expanding stents placed on each side, following stent placement pressure gradients were obliterated. The collateral pattern was no longer filling, and both veins were normal in calliber.
Procedure/Drug related symptoms: Extreme head pain during and after procedure. I had muscle twitching in neck and back for 3 days. Morphine and percoset caused nausea and vomiting. Intense pain and nausea persisted for 4 days. At days 5+ nausea ceased and pain lessened to daily headaches. Headaches relieved by laying flat and not using neck muscles. Normal fatigue as expected from recovery. I have had some left shoulder muscle stiffness.
Number of relapses since CCSVI: 0
Impact on MS symptoms:One week after procedure:
Fatigue is noticably better. I have an awake feeling all day. I do not feel the need to rest throughout the day.
Right sided pain is gone.
Stiffness in legs and arms is gone.
No urinary urgency.
No migraines.
Cognitive ability seems improved.
_________________
Rhonda~~
10/16/2009 diagnosed with cyanotic lesions involving the jugular veins bilaterally. (Stanford-Dr. Dake) 10/19/2009 Stent placement on each side, pressure gradients obliterated, collateral pattern no longer filling, and both veins normal.
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