CCSVI tracking project-POST PER P.1 FORMAT ONLY

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

Postby Mattia » Sun Aug 29, 2010 8:44 am

Mattia
Male
Age: 41
MS RR diagnosed on September 2008.
Lesion locations (most affected side, if known), number: 11 lesions
MS treatments: Copaxone since September 2008
MS symptoms before stenosis intervention: dizziness, fatigue, reduced endurance in walking, heat intolerance, back-pain, brain fog, loss of words during speaking.
Number of relapses before intervention (if applicable): > 3
EDSS before CCSVI intervention: 3.5 (self-assessed)
FSS before CCSVI intervention: 3.67 (self-assessed)
MSIS before CCSVI intervention: 59 (self-assessed)
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: July 2010, Katowice
Type of venographic study: MRV, Doppler, Venography
Diagnosis: Allegedly a membrane in the left jugular vein, mild stenosis in the right jugular vein; no problem with Azygos vein.
Type of procedure: Angioplasty in left and right jugular veins
Procedure/drug related symptoms: Neck-pain (both right and left)

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):
- better tolerance to heat
- less fatigue
- less dizziness
- improved endurance in walking as before MS
- no more back-pain
- no more brain fog
- no more loss of words during speaking.

I'll do in 3-4 months a new self assessment
EDSS as of this update (self-assessed or physician-assessed?): -
FSS as of this update: -
MSIS as of this update: -
User avatar
Mattia
Newbie
 
Posts: 6
Joined: Sat Aug 28, 2010 3:00 pm

Advertisement

Postby BamBAM » Sat Sep 11, 2010 12:21 am

CCSVI TRACKING 09/08/2010

MS HISTORY
Name ( BamBam)
Male/Female: Male
Age: 44
RRMS, Diagnosed, Oct 2009
Lesion locations: 3 white matter lesion's, Rightside of Brain, Cervical spinal lesion's
MS treatments: Copaxone, Nuvigil, Cymbalta
MS symptoms before stenosis intervention:
Dizzyness.
Fatigue.
Brain fog.
Loss of word's while talking.
Numbness from the waist down.
Numbness in bottom of left arm and fingers and around chest at the level of left shoulder. Burning pain in both legs. Right leg worse than left. Hypersensitivity in both legs and feet.
Weakness in left leg.
Heat sensitivity.
Trouble swallowing.
Ringing in right ear.
Optic Neuritis.

Number of relapses before intervention 2
EDSS before CCSVI intervention 5 Self assessed
FSS before CCSVI intervention: 3.87 self assessed
MSIS before CCSVI intervention: 62
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: 02/08/2010
Type of venographic study: (MRV, Picture link at bottom of page, SWI, Venography. )
Diagnosis: RRMS
Type of procedure: Angioplasty of left Jugular, Angioplasty of Band Squeezing or possible bad valve in Azygous
Procedure/drug related symptoms: Minor pain in Neck and Chest

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words Dizzyness mostly gone.
Cog fog reduced.
Fatigue reduced.
Hypersensitivity and Burning pain in both legs almost gone.
Weakness in left leg better.
Swallowing is better.
Improved Balance.
Heat sensitivity gone

Will do another Self assessment in 3 Month's

EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
http://s738.photobucket.com/albums/xx28/BrianChambers214/MRV%20pics/
Its not about the disability, Its about the ability!
User avatar
BamBAM
Family Member
 
Posts: 25
Joined: Sun Dec 20, 2009 4:00 pm

Postby Onthelake » Sun Sep 12, 2010 3:48 am

CCSVI TRACKING

MS HISTORY
Name: Onthelake
Male/Female: F
Age: 43

Date(s) & type of neurological diagnosis: 10/2002 possible RRMS dx, 07/2009 firm rrms dx

Lesion locations, number: 2002 -Signal in callosal septal junction bilaterally, 2 of these lesions radiate out in a perpendicular fashion to the ventricles. Signal in the white matter of the left cerebellar hemishere 1.2 cm, no signal in cervical spine. 2009 - following major vertigo attack in early 2009, new MRI shows 1 new lesion on the brainstem, location of lesion matches vertigo symtoms per neuro's comments. Summary 11 lesions.

MS treatments: None after "possible" dx in 2002, following "firm" dx in 2009 started LDN (gave me huge improvements) Vit D, B6, B12, ibuprophen, baby aspirin, inclined bed therapy starting this spring (much better mornings). Refused CRABs.

MS symptoms before stenosis intervention: ON and eye pain for 16 weeks in 2002 but then completely resolved, since 96 as follows: Bladder (frequent and up in the night alot, bowel (spasms), brain fog, fatigue,(better wiith LDN) dizziness, difficulty balancing and walking straight line, mood swings, shooting pains in the head, periodic visual disturbances eg flashing in line of vision, periodic choking on food and liquids, choking on saliva in the night, mild foot drop, cold feet, heat intolerance (much better with LDN), joint pain and stiffness, facial numbness and tingling, tingling arms and hands (falling asleep), buzzing, clicking and vibration sensations in head and arms all mainly in the morning (inclined bed therapy really helped this), no dreams or dreams that skip like a broken record, acid reflux, memory problems, word fishing, tinnitus in past year almost constant, loss of train of thought, cognitive confusion, difficulty writing, pain in neck and shoulders, difficulty socializing.

Number of relapses before intervention (if applicable): 2 ,one in 2002 - ON, one in 2009 - Major Vertigo

EDSS before CCSVI intervention (self-assessed or physician-assessed?): Self -3.5

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

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: jan 2010, Barrie
Type of venographic study: Doppler
Diagnosis: Venous insufficiency was evident with reflux in the internal right jugular and vertebral veins at 90 degrees.
Type of procedure: Venography and ballooning
Procedure/drug related symptoms: a lot of pain during ballooning part of the procedure, brutal!! back in hotel now, slight ache in neck, feels like bruising, no big deal.


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): the day of treatment immediately following: able to look up at the ceiling and not be dizzy and light headed (have not been able to do this in 17 months), no tinnitus!! ( I have had tinnitus every day for the past 6 months, it especially kicks up a notch at 4pm each day, it is now 9pm and no sign of it! ), I can stand with my feet together and my eyes closed and not fall over after 5 seconds! ( I tried this test the day before the procedure and could not do). Anyway that's it for now. Will carefully monitor how I feel over the next days and months.
EDSS as of this update (self-assessed or physician-assessed?) Self assessed 0, no symptoms at all, but its only been 8 hours! I am cautiously optimistic. Hoping for the best, preparing for the worst. : )
FSS as of this update:
MSIS as of this update:
Last edited by Onthelake on Sat Oct 30, 2010 5:57 pm, edited 2 times in total.
Onthelake

I am a great believer in luck, and I find the harder I work, the more I have of it.  Stephen L.
User avatar
Onthelake
Family Member
 
Posts: 31
Joined: Tue Apr 06, 2010 3:00 pm

Postby Wichita » Fri Sep 17, 2010 8:24 pm

CCSVI TRACKING

MS HISTORY
Name: Jasmine
Male/Female: (M/F) F
Age: 53
Date(s) & type of neurological diagnosis:
03/01/1979 Optic Neuritis
10/01/1981 RRMS

Lesion locations:
Numerous lesions in periventricular white matter, corpus callosum, and in the brachium pontis. No lesions in the brainstem or proximal cervical spinal cord.

MS treatments:
Avonex, now replaced by Rebif
IV Prednisone (during some relapses)
Oral Prednisone (pulse steroids) as needed

MS symptoms before stenosis intervention:
Numbness in hands, legs (worse at night in bed)
Occasional spasticity
Bottoms of feet like walking on rocks
Foot drop
Walk limited to a few hundred yards max, due in part to severe leg pain. Left leg tends to swing out rather than stride normally.
Walk with a cane
Heat sensitivity. Never wear a hat or clothing around the neck, makes me hot.
Red swollen hands and feet
Mild cog fog
Bladder retention requiring self-cath 5X per day
Balance issues
Fatigue
Number of relapses before intervention (if applicable):
5

Are you using Inclined Bed Therapy I.B.T?
Used for 6 months prior to treatment, quit after liberation

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure:
09/02/2010 Albany

Type of venographic study:
No MRV, No Doppler, only venogram immediately before balloon

Diagnosis:
Narrowing and reflux in left and right IJV and Azygous
Doctor said impressive collateral veins in right jugular. Tight and stubborn stenosis on left IJV, required larger balloon on 3rd try to open

Type of procedure: Balloon angioplasty

Procedure/drug related symptoms:
Mild headache and soreness, gone after a few days

Number of relapses since first CCSVI intervention:
0

Impact on your MS symptoms in words:
On day 1, no more red swollen hands and feet
Skin felt cool to the touch (dramatic difference noticed by my husband)

1 week post-procedure:
Balance improvements – can now bend at the waist without falling over, look up at ceiling without falling
Now walking one mile per day, pace has improved each day. Leg pain diminishing.
Numbness in hands and feet reduced.
Can now stride normally on left leg heel to toe, but requires concentration.
Reduced fatigue.
Still have some foot drop, so still walk with the cane. No improvement in bladder retention.
Choose Liberation.
User avatar
Wichita
Getting to Know You...
 
Posts: 18
Joined: Mon Dec 28, 2009 4:00 pm
Location: Wichita, KS

Post angioplasty

Postby Hooch » Mon Sep 20, 2010 8:33 am

I am a 56 year old female. I have been diagnosed with RRMS for 13 years. I started with Optic Neuritis, almost blind for a week in Left Eye. Other major symptom was numbness and tingling in Left Leg and Foot. EDSS 1 to 1.5.
On Rebif 22mcg for 2 years.
On rebif 44 mcg for 8 years.
On Rebif 22 mcg for one year to the present.

Symptoms included:
Fatigue
Vision problems - glaucoma
Leg pain at night.
Heat sensitivity - this summer needing icepacks front and back.
Balance problems on the left.
Heaviness in right leg.
Headaches, especially in left side of head
Headaches ++ in am before IBT started in March
Dizzyness when bending down to the right or up.
Tinnitus - worse in evening and worse on left side.

Procedure in Albany Fri. Sept. 17th. Both jugular veins stenosed moderate to severe - the left in two places. Ballooned and holding. No azygos seen. Many attempts made to image it. I may not have one!

Results to date - 6 hours after procedure seeing better, more vibrant colours, more depth to objects. Possible improvment in balance. No leg pain at night.
User avatar
Hooch
Family Member
 
Posts: 57
Joined: Thu Feb 18, 2010 4:00 pm

tracking

Postby aliyalex » Wed Sep 22, 2010 3:04 am

CCSVI TRACKING 09/2012

MS HISTORY
Name Aliyah
Male/Female: F
Age: 57
Date(s) & type of neurological diagnosis RRMS 2003, LYME 2004, SPMS 2005
Lesion location- C4-5 at first for years, then many in brain and lumbar recently identified until 06/2010 stem cell tx. demyelination left in cervical and thorasic area.
MS treatments: vit D, S-12, antimicrobials, immune support, etc. CRABs and chemo refused.
MS symptoms before stenosis intervention: dry eyes and ulna nerve neuropathy 1st sx, ON, leg weakness, fatigue came later. non-amb, sxs for 20 years before venoplasty.
Number of relapses before intervention (if applicable): ?
EDSS before CCSVI intervention (self-assessed): 8.0

FSS before CCSVI intervention:
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? N

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 8/30 and 9/13 Albany
Type of venographic study: Doppler, v'gram
Diagnosis: CCSVI
Type of procedure: v'plasty
Procedure/drug related symptoms: 90% stenoses in both ijvs and valve issue in azygous. all corrected w/ plasty. lumbar, etc not evaluated.

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):

9/22/10 less spasticity in legs.

EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
Last edited by aliyalex on Wed Sep 22, 2010 8:14 am, edited 1 time in total.
User avatar
aliyalex
Family Elder
 
Posts: 124
Joined: Tue Jan 05, 2010 4:00 pm

Postby JCB » Wed Sep 22, 2010 8:05 am

CCSVI TRACKING

MS HISTORY
Name : Jim
Male/Female: Male
Age: 45
Date(s) & type of neurological diagnosis: PPMS November 2007

Lesion locations (most affected side, if known), number: 5 lesions in brain 1 at top of spinal cord.

MS treatments: Copaxone, Prednisone, clonazepam

MS symptoms before stenosis intervention: Weak right side, right drop foot, can't hold on to things for any length of time with my right hand, weak right leg, bowel and bladder urgency.

Number of relapses before intervention (if applicable): 0

EDSS before CCSVI intervention (self-assessed or physician-assessed?): Self Assessed 6
FSS before CCSVI intervention: Self assessed 6.4
MSIS before CCSVI intervention: Self Assessed 94

Are you using Inclined Bed Therapy I.B.T? (Y/N) No

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 9/13/201 Albany, NY

Type of venographic study: (MRV, Doppler) Catheter Venography
Diagnosis: 100% blockage in left juggular, large collateral above blockage taking most of the blood flow. Over 50% blockage in right juggular. No Blockage found in Azygous.

Type of procedure: Balloon angio on right side, stent placed on left side. Plavix for 6 months.

Procedure/drug related symptoms: None

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):
(9/22) one week post procedure, more ability to move right arm, feel more clear in my thinking. Still can't move my right toes. Grasping with my right hand still difficult. Overall color is better. Giving it some time

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

Update 09/22/2011

It has been a year since this ride started by travelling to Albany, NY.

After multiple procedures, my left internal jugular is open, due to the covered stent placed there by a good friend.
I have moved my big toe on my right foot 8) how cool is that?
I awoke this morning at 5 am and went to breakfast w/out using an alarm. I love feeling awake in the morning!
My right hand and foot are normal size, no swelling.
Still have right drop foot.
Walked over a mile, not a triathlon (yet) but it is activity.

Update 02/22/2012

Left jugular still open, still on the blood thinner Arixtra. I am hoping after my next good US appointment I can kick the habit.
Still have right drop foot and right arm/hand weakness. Still feeling more awake and over all a healthy energy level.

Update 06/14/2012

Still on blood thinner, still feeling good. Had a procedure 5/2 to open up narrowing at the top of the stents in the left jugular. Heat no longer affects me, I have begun to sweat again. Cold causes my right arm to behave badly still. Right leg still has spasm's at night. Can walk/limp a mile no problem.

Update 08/29/2013

Left jugular closed, right jugular still open. I can still sweat, right leg spasms still persist, MS stable, can still walk/limp a mile (even in high heat and high humidity)
Last edited by JCB on Thu Aug 29, 2013 12:43 pm, edited 5 times in total.
User avatar
JCB
Family Elder
 
Posts: 141
Joined: Wed Apr 21, 2010 3:00 pm

Postby fogdweller » Mon Oct 04, 2010 1:34 pm

MS HISTORY

Name: Fogdweller
Male
Age: 58
PPMS first diagnosed in 1977.
Because my I told my employer of the diagnosis in 1977 and was promptly fired, I decided not to open about the disease. It was very mild and I was "In the closet" untiil 2004. At that time I went on partial disability but continued with my jobpart-time (self-employed at desk job, no phylsical exertion requred).
Location of lesions and number: Unknown. Right side slightly more affected than left.

MS TREATMENTS PRE-CCSVI INTERVENTION:

Originally saw neurologist about once a year, no treatment. Eventually that increased to about 4 or 5 visits a year.
In 1998 I began tegretol for neuropathic pain. Originally about 200 mg per day. Slowly increased as needed to about 1200 mg per day.
No DMD ever. I participated in an LDN trial but did not continue on the drug after the trial. I partilcipated in a methtroxate trial but did not continue the drug after the trial.


No relapses or remissions. I have PPMS.

PRE-CCSVI EVALUATION, ALL SELF-ASSESSED

EDSS: 6.0
FSS: 3.1
MSIS: 50

I do not use Inclined Bed Therapy.


STENOSIS PROCEDURE HISTORY

I have been tested.
Tyupe Of Test: MSV for initial diagnosis at Pacific Interventionalists. They treated me two days later, and during the treatment did full, detailed vcatheter veinography.

Diagnosis: The initial MRV showed the left jugular 50% stenosed, the right juguclar and azygous apperared clear. The veinography showed that the left jugular was 75% stenosed and the left jugular was 50% stenosed. The azygous was clear.

Type of Procedure: Balloon angioplastly. No stents, no follow-up drug therapy of any kind.

Results immediately after procedure: Flow restored to 100% in left jugular, 25% in left jugular.

I will update quarterly or after any major event.
User avatar
fogdweller
Family Elder
 
Posts: 412
Joined: Tue Dec 08, 2009 4:00 pm

Linda's experience

Postby djurliv » Mon Oct 04, 2010 8:40 pm

CCSVI TRACKING [10/04/2010]

MS HISTORY
Name: Linda (data entered by David)
Male/Female: (M/F) F
Age: 61
Date(s) & type of neurological diagnosis: Dx 1995. Currently SPMS.
Lesion locations (most affected side, if known), number: brain
MS treatments: LDN, Diazepam, vitamin b-12, vitamin d, Solumederol infusion, physical therapy, supplements, diet restriction; no CRAB drugs
MS symptoms before stenosis intervention: fatigue, heat sensitivity, left leg spasticity (almost rigid, walking with walker and foot drop compensator), spasms, tingling, poor thermoregulation (cold hands, feet), diminished left arm and hand mobility, significant pain, poor balance, increased bladder urgency
Number of relapses before intervention (if applicable): uncertain

EDSS before CCSVI intervention (self-assessed): 6.5
FSS before CCSVI intervention: 7.0
MSIS before CCSVI intervention: 124

Are you using Inclined Bed Therapy I.B.T? NO

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 09/20/2010 Albany Medical Center
Type of venographic study: (MRV, Doppler) Catheter venography
Diagnosis: Both jugulars stenosed, lesser problem in azygous
Type of procedure: Balloon angioplasty both jugulars
Procedure/drug related symptoms: Aspirin only, no symptom

Number of relapses since first CCSVI intervention: NONE
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
[09/20/2010]
1. Energy – Good improvement. Linda self reports about 50% improvement in energy level.
2. Pain level – Dramatic improvement. She says her pain level averaged “8” pre-treatment and now averages “1” or a little more.
3. Left hand – Good improvement. This was an immediate effect, and growing. She is able to type now with the left hand, but only poorly pre-treatment. The large muscles in the arm are growing in strength, but not as quickly.
4. Mobility – Some improvement. Because of the improvement in energy, Linda gets around more and better. Pre-treatment, we had come to the place where I was taking her most places and bringing her inside with the transport chair. Post treatment, she is much more willing AND able to drive herself (the right leg was not much affected by the disease) and get inside a building.
5. “Molasses” – Dramatic improvement. Pre-treatment, Linda would be “in cold molasses” in the afternoon and evening…..that is to say, hard to move. That effect has disappeared in her legs, but persists in her left arm, although it is better.
6. Temperature – Dramatic improvement. Linda’s hands and feet are warmer. I can feel that when she touches me.
7. Depression – Dramatic improvement. Hope has been restored.
8. Balance – Good improvement. She can now stand without support for several minutes.
9. Tingling – Some improvement. Her left leg tingles sometimes, but has improved. The left thumb tingles constantly still.

EDSS as of this update (self-assessed): 6.5
FSS as of this update: 3.3
MSIS as of this update: 66
User avatar
djurliv
Newbie
 
Posts: 6
Joined: Fri Mar 12, 2010 4:00 pm
Location: Alaska

Postby nagsy » Tue Oct 12, 2010 7:03 am

CCSVI TRACKING 06/24/2010 (24th June 2010)

MS HISTORY
Name: This tracking is for my wife….
Male/Female: F
Age: 34

Date(s) & type of neurological diagnosis: Diagnosed 2004 with RRMS
Lesion locations (most affected side, if known), number: Not known

MS treatments: Will check and add info…….but from what I can remember my wife had Gabapentin for 1yr when dx’d and some oral steroid for a number of weeks. Over the years she has had courses of methylpredisolone and amytryptyline a number of times.

MS symptoms before stenosis intervention:
Since Jan 2010
• Physically no disability is apparent when looked at but…..
• Minimum of 4 spasms a day in both arms lasting from 10secs to a couple of minutes each (possibly a couple of days per month where there were less spasms).
• One day before and during each menstrual cycle spasms would be more severe i.e. uncontrollable swinging of arm(s) and severe pain
• Legs would collapse totally at least once a month
• Tripping up and hitting the floor at least once a month when walking
• Really SEVERE pins and needles EVERY evening (mainly in lower back), sometimes in hands if have used them a lot, sometimes in legs. Then again sometimes the onset of pins and needles would happen at anytime!
• Leg spasms (sometimes just twitches) at night (at least once per night)
• Excruciating pain in left foot and calf muscle (side of calf) lasting upto 15 minutes and occurring at least once a month (absolute killer pain!!!!)
• Fatigue usually worse from late afternoon unless it was a work day. On a work day (3 times per week) would finish 6hr shift at 1pm and then come home and in need of sleep and absolutely knackered the next day. Then again sometimes the onset of fatigue would happen at anytime!
• General physical weakness
• Brain Fog
• MS hug – tight chest pretty much all the time
• Shortness of breath (sometimes)
• Cold intolerance – generally much much colder than everyone else (needs the heating on most of the time) and wears layers of clothing even when the sun is out
• Jumbling up of words in a sentence - intermittent
• Poor Concentration – did not like reading letters/books/instructions/signs etc etc
• Difficulty doing buttons up (morning only) – intermittent

Pre Jan 2010
• As above and…
• Has had complete numbness in hand and/or foot over the last 3 years at least twice a year lasting between 4 to 8 weeks at a time
• Blurry vision – on waking for an hour or so (very intermittent)

Number of relapses before intervention (if applicable):

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


Are you using Inclined Bed Therapy I.B.T? Y (since Feb 2010)

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

STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure: 24th June 2010, Katowice, Poland

Type of venographic study: MRV and Doppler
Diagnosis: Doppler showed minor occlusion in left Jugular and major occlusion in right jugular

Type of procedure:
Balloon Angioplasty of right Jugular only (Venography showed that left jugular was ok)
Heparin injection for 7 days.

Procedure/drug related symptoms:
• 5 hours post procedure: Upon getting up from bed had numbness in hand and right leg was extremely heavy, pins and needles in lower back. Also balance seemed an issue (no balance problems experienced before).
• 16 hours post procedure: Leg hurt at point of incision. Leg felt heavy but all other procedure related symptoms ok
• Day 1 Leg hurt at point of incision and felt sore
• Day 2 Leg hurt at point of incision – now unable to bend leg due to soreness
• Day 3 As day 2 and very sore – huge Hematoma forming on leg
• Day 4 Back in UK – On flight journey felt excruciating pain in left foot and calf but thankfully calmed down quickly
• Day 5 Visited GP and got cream for hematoma, very sore but doc said no infection present
• Day 10 Able to walk up and down stairs now – soreness still present but ok
• Day 20 Hematoma still present but able to better now. Leg soreness has diminished considerably but cannot sit on floor cross legged as pain at point of incision. Cannot touch inner thigh as painful. Now on 5 day course of Amoxicillin to counter any possible infection.
• Day 60 Hematoma cleared. Still slight pain at point of incision. Can now sit on floor cross legged. Have appointment with vascular surgeon to get incision point checked.
• Day 70 - Vascular surgeon advised all is well and pain would ease on its own.

Number of relapses since first CCSVI intervention:

Impact on your MS symptoms in words:
• During Procedure: Tightness feeling (MS Hug) disappeared during or just after the ballooning procedure.
• After Procedure: Felt different but could not explain
• Day 1 - No spasms, no fatigue, no pain, no pins and needles = OK.
• Day 2 - As above but had excruciating pain at 5am in left foot and calf (side of calf) lasting about ten minutes otherwise OK.
• Day 3 - OK + can read faster, can speak a lot more as concentration is better i.e no brain fog, feel confident = OK.
• Day 10 - OK – Wow! Feel normal!!!!!!!
• Day 20 - OK.
• Day 38 - Stayed at friends last night on flat bed (no IBT) – had 3 second spasm in arm in daytime. OK - but in evening felt short of breath and very tight neck (intermittent over 2hrs).
• Day 39 – OK - but in evening felt short of breath and very tight neck, lay down in bed and OK after a while.
• Day 40 - Had blood tests done – about 2 hrs later had 3 second spasm in arm (pre-CCSVI after a blood test would have spasms in both arms/body within minutes), otherwise OK.
• Day 45 - 4 Spasms in day  - but otherwise OK.
• Day 46 - 4 Spasms in day  - but otherwise OK.
• Day 55 - Last 9 days it appears that the spasms are slowly returning but all other symptoms i.e. poor concentration, fatigue, cognitive issues, pins and needles have not reoccurred. Generally feels normal apart from when she has a spasm.
• Day 60 to 65 – As above and strange chest pain lasting 10-20mins. Have stopped all supplements and will slowly re-introduce as there could be a possibility that the spasms are caused by a vitamin/mineral imbalance or an intolerance to an ingredient in the supplements.
• Day 67 – OK and sweated for the first time in ages!
• Day 68 – The spasms appear to have leveled off – still happen occasionally but not on some days. No other symptoms have re-occurred.

Monthly Updates -
30th August 2010 – My wife felt ‘normal’ for more than 4 weeks. Although the spasms have kind of returned she is sooo much better than before - she feels normal most of the time but still does have a spasm or two most days. Pre CCSVI if she had a spasm she would have to lie down and her day would be ruined – now she is fine after a couple of minutes and gets on with her day-to-day activities. We are optimistic and hope that at least she remains as is (or gets better) – but only time will tell. For now, we will take each day as it comes and explore further any vitamin/mineral imbalance (or intolerance to a supplement ingredient).

My wife’s concentration is so much better: She has read three books since having the treatment (pre-CCSVI the last book she read was in 2003!!!!) and she is now able to check through and read all of our post which she never did pre-CCSVI. Her vocabulary and choice of words has improved drastically and she wants to learn more as she now feels she has the ability to digest more. Each evening she stays up till at least 9pm (usually 10pm) whereas previously she would go to bed as soon as I got in about 6.30pm.

31st September 2010 – Same as last month and we have found that if my wife has a glass or two of red wine in the evening she will not have a spasm the next day. In October she will start on 100mg of Ginkgo Biloba extract twice per day (as a tea concoction). Also considering Aspirin and/or Proteolytic Enzymes.

31st October 2010 – Same as last month - my wife still has a spasm or two every other day. No sudden on-set of fatigue or any fatigue for that matter. No other symptoms.

30th November 2010 – Same as last month - my wife still has a spasm or two every other day. No sudden on-set of fatigue or any fatigue for that matter. No other symptoms. Got cramp/pain in leg once.

31st December 2010 – Same as last month - a couple of glasses of red wine usually prevents the spasms the following day. No sudden on-set of fatigue or any fatigue for that matter. No other symptoms (No pins and needles, no cog fog etc). Got cramp/pain a couple of times.

31st January 2011 – Same as last month. Started getting some cramp-like pain in leg each night. Have stopped using Inclined Bed Therapy and pain as stopped.

28th February 2011 – my wife still has a spasm or two every other day. A couple of glasses of red wine usually prevents the spasms the following day. No sudden on-set of fatigue or any fatigue for that matter. No other symptoms (No pins and needles, no cog fog etc, no cramp, no legs collapsing etc etc.

March to 31st May 2011 - as previous months.

Additional notes:
Diet: My wife has been on the BBD since 2007 (and basic list of BBD supplements)
IBT: Using Inclined bed therapy since Feb 2010 - the trips to the loo at night have reduced dramatically allowing for a sound nights sleep 
IBT: Stopped IBT Feb 2011

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


Cheers,

Pinda
Last edited by nagsy on Thu Jun 09, 2011 9:00 am, edited 9 times in total.
User avatar
nagsy
Family Member
 
Posts: 26
Joined: Thu Sep 24, 2009 3:00 pm

CCSVI TRACKING 10/14/2010

Postby JaneM » Sat Oct 16, 2010 9:02 am

MS HISTORY
Name Jane M
Male/Female: F
Age: 56
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS 4/97 SPMS 1/05
Lesion locations (most affected side, if known), number:
MS treatments: Avonex 97 - 05, amantadin -98, baclofen - 2003, gabapentin - 2007
MS symptoms before stenosis intervention: Fatigue, r leg spasticity, r &l hand numb, r & l feet numb, fog, insomnia, constant pain
Number of relapses before intervention (if applicable): N/A SPMS
EDSS before CCSVI intervention: 6.5 self-assessed

FSS before CCSVI intervention: 5.8
MSIS before CCSVI intervention: 103

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

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 9/28/2010 (testing) 10/14/2010 (procedure)
Type of venographic study: (MRV, Doppler) Dopple
Diagnosis: Azygous 90 blocked, left jugular blockages, right jugular ok
Type of procedure: Catheter venography, Balloon angioplasty
Procedure/drug related symptoms: Aspirin only, no symptom

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): spasticity r leg improved for short period of time. Pain in back is gone. Fatigue not as severe.
EDSS as of this update (self-assessed or physician-assessed?) 6.5
FSS as of this update:
MSIS as of this update:
User avatar
JaneM
Newbie
 
Posts: 5
Joined: Sun Mar 14, 2010 4:00 pm
Location: New York, NY

Postby tonisa » Sat Oct 16, 2010 10:18 pm

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

MS HISTORY
Name (if want to give other than TIMS login name): Tony
Male/Female: M
Age: 28
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): 08/15/2010, not sure of type
Lesion locations (most affected side, if known), number: C spine, 2 lesions
MS treatments: none
MS symptoms before stenosis intervention: Numbing of legs from belly button down when walking. Prevented anything more than a slow walk. Inadequate bladder drainage, frequent urination, MS hug when stressed, leg muscles cramping and leg pain(4 out of 10), extremely low energy, Cog fog,

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: 10/12/2010, Arizona Heart Institute, Phoenix Arizona.
Type of venographic study: (MRV, Doppler) CT scan, Doppler, cath venogram
Diagnosis: Severe stenosis on left IJV, faulty valve in right IJV, Azygos was open.
Type of procedure: Balloon angioplasty, 12 MM balloon.
Procedure/drug related symptoms: None
[Repeat this section if there have been more than one procedure]

Number of relapses since first CCSVI intervention: None
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
(10/16/2010)Numbness and tingling reduced by 80%, Bladder working better, Energy is back to normal, cog fog is GONE, Leg pain is gone, ms hug is gone, Feel extremely well, I have my life back. I had only been diagnosed for 2 months when I had my procedure. My symptoms had started approx 1 year prior. I now feel like overall I am 80-90% back to normal.
(10/19/2010) Noticing that I can think a lot clearer, eyesight in sharper, I feel like I can follow conversations a lot better. I have a lot better stamina. I have been cycling on a stationary bike before my procedure to try to stay in shape. 3 days before procedure, with bike resistance set at level 5, My heart rate would hit 180-185 after 5 minutes of cycling at 85 rpm. After the procedure on got on the same bike, level 5, same heart rate monitor, and cycled at 100-105 rpm for 17 minutes before my heart rate hit 180. I had a full sweat going on, which was very difficult for me to do before. I didn't have plugged ears when I was done, which I thought was normal for working out:) Every day it seams that I feel better. Tons of energy.
I WOULD STRONGLY RECOMMEND THIS TO EARLY DIAGNOSED PATIENTS, AS I THINK EARLY INTERVENTION IS KEY. IT WORKED FOR ME!!!
Last edited by tonisa on Tue Oct 19, 2010 8:23 am, edited 1 time in total.
User avatar
tonisa
Newbie
 
Posts: 1
Joined: Sat Oct 16, 2010 3:00 pm

Postby Interrupted » Thu Oct 21, 2010 7:33 am

MS HISTORY
Name: Jacqui
Male/Female: Female
Age: 30
Date(s) & type: Allegedly RRMS but also CFS since 2000. 10yrs.
Lesion locations: Spine never scanned. Some on brain but I don't know specifics.
MS treatments: Tried LDN, Avonex, Rebif, Copaxone, Steroids. ALL made things worse.
MS symptoms before stenosis intervention: Extreme fatigue, ON, derealisation, feeling of immense pressure in skull, tingling, numbness, migraines, dizziness, nausea, digestive problems, tremors, cold hands/feet, anxiety. concentration problems, random pain, feeling of lack of oxygen, constant illnesses.
Number of relapses before intervention: Never counted.
EDSS/FSS/MSIS before CCSVI intervention: Never used these scales, they are biased towards mobility problems and useless when mobility ios not the main symptom present.
Are you using Inclined Bed Therapy I.B.T? Yes, have done for apx. 6 months. Hasn't helped anything.

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 12/10/10 Euromedic, Poland
Type of venographic study: MRV, Doppler, Venography
Diagnosis: Mild stenosis in RIJV on levels of valve with delay outflow. In LIJV severe stenosis with delay outflow.
Type of procedure: Balloon angioplasty.
Drugs post procedure: Fraxiparine (7 days), aspirin 75mg/day
Immediate effects: High off sleep depravation, buzzing from procedure but no immediate improvement. Crashed big time 2 days after.

Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words:
9 days later: Much worse all round. Neck still pretty painful, and now have numbness and tingling in new areas. Falling asleep everywhere, feel almost fluey even thought i'm not. Vision worse. Energy AWOL. Pretty upset. All in all a disaster so far, let's just hope it's a temporary kickback.
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
User avatar
Interrupted
Family Elder
 
Posts: 212
Joined: Sun Jan 14, 2007 4:00 pm
Location: UK

Postby naychergirl » Fri Oct 22, 2010 6:20 am

CCSVI TRACKING 10/08/2010

MS HISTORY
Name naychergirl
Male/Female: F
Age: 48
Date(s) & type of neurological diagnosis: RRMS 8/2007
Lesion locations (most affected side, if known), number: right side 3 lesions.
MS treatments: Copaxon 2008-2010, Rebif currently, baclofen, gabapentin, dextroamphetamine and temazapam.
MS symptoms before stenosis intervention: stiffness and leg drop on right leg, spasticity in both legs, tingling in both legs, but mostly right side, right hand weakens when writing, fatigue and insomnia. Not sure if the insomnia is from the amphetamine or the spasticity. Also, bladder urgency.

Number of relapses before intervention (if applicable): 3 or 4

EDSS before CCSVI intervention (self-assessed or physician-assessed?):
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandedd ... scale.html ]
F
SS before CCSVI intervention:
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]

MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? N

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

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Albany N.Y 10/8/2010
Type of venographic study: (MRV, Doppler) both
Diagnosis: blockage in right jugular and azygos
Type of procedure: angioplasty with no stents
Procedure/drug related symptoms:


Number of relapses since first CCSVI intervention: None

Impact on your MS symptoms in words: immediatly my fatigue was gone, my feet got warm, and I walked a bit better. I slept that night without taking a sleeping pill. My memory seemed a bit better as well. My bladder issue is gone too.

10/23/2010: I am getting stronger every day. I no longer take the amphetamine or the temazapam. Walking better every day, just not long distances. I still have to keep my cane and walker at close range. tingling comes and goes, but I'm not sure if it's the meds working....or not. I'm afraid to stop the baclofen just yet because the spasticity was horrible.


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

[/b]
User avatar
naychergirl
Family Member
 
Posts: 50
Joined: Tue Jun 22, 2010 3:00 pm
Location: South Florida

Postby PointsNorth » Fri Oct 22, 2010 4:42 pm

MS HISTORY

PointsNorth
M
42
RRMS diagnosed 2003 (age 35)
1-2 lesions

No CRABS ever used
Experimented with LDN in '05 and have used sporadically since. Fantastic side effect: superb (silver bullet) for my Crohn's Disease (IBD)

MS symptoms: Significant fatigue, depression, heat sensitivity, urgent bladder/bowel, sleep problems, cog-fog
Remission is infrequent
Treated in Albany, October 7, 2010

STENOSIS PROCEDURE HISTORY
MRV and doppler completed at False Creek Surgical (Vancouver) in June 2010. Many new lesions since my original MRI in 2003.
Subsequent evaluation of MRV by Dr. Haake
Stenosed RIJV, no reflux noted.

Albany
Ballooned 12 times.
Stenosis treated in both jugulars with collaterals identified in the left (not identified in the MRI/V) Small issue with azygous
Procedure very well tolerated. Benefitted from Dr. M & team's experience.

Impact on MS symptoms.
Immediatly after procedure experienced the "HD affect", cog-fog lifted completely.
Significant relief from fatique and cog-fog for exactly one week. Then back to pre-treatment levels.
Heat tolerance has been maintained.

Using LDN again to tackle problematic bowel. Working nicely.
Will do a 3-month doppler u/s check-up at FCSC in early Jan 2011.
PointsNorth
Family Elder
 
Posts: 525
Joined: Mon Sep 04, 2006 3:00 pm
Location: LeftCoast Canada

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service