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

Postby Rokkit » Wed Nov 04, 2009 3:41 pm

MS HISTORY
Male/Female: M
Age: 46
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): No official diagnosis. It's probably PPMS.
Lesion locations (most affected side, if known), number: 0
MS treatments: None
MS symptoms before stenosis intervention: Symptoms started Jan/2007. Leg weakness, numbness, R > L. Neurogenic bladder, mild swallowing issues, some fatigue. Sensitive to cold and stress.
Number of relapses before intervention (if applicable): 0


Have you had a procedure for stenosis yet: Y

STENOSIS PROCEDURE HISTORY

Date/location of testing&procedure: 10/6/09, Stanford
Type of venographic study: MRV
Diagnosis: significant stenosis, right and left internal jugulars about ear level. Also some stenosis in both jugulars just above the clavicle. Only the left lower jugular needed to be stented.
Type of procedure: 3 Stents. Pressure gradients of 6, 5 and 4 were associated with the stenoses.
Procedure/drug related symptoms: Percocet made me throw up. Very bad headache for a few days, very sore neck for a couple of weeks. But hey, I played guitar in church the Sunday after my Tuesday procedure. It wasn't fun, but I did it.

Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words:
11/4/09 Can't tell for sure.
02/08/10 I have more energy and drive, less fatigue, although fatigue wasn't a huge problem for me. Other than that, I haven't improved.
Last edited by Rokkit on Mon Feb 08, 2010 10:47 am, edited 2 times in total.
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Postby Ruthless67 » Thu Nov 05, 2009 2:30 pm

CCSVI TRACKING

MS HISTORY
Name: Lora
Male/Female: (F)
Age: 57
MS treatments: Currently taking NO medications, only supplements recommended for the anti-candida diet. Have not tried IBT.
MS symptoms before stenosis intervention: Right side weakness, right hand is particularly bad, writing is difficult, buttoning clothing is next to impossible, occasional tingling in my forearms and hands, also itching under skin that no amount of scratching can help, leg pain, spasms, fatigue and a lack of stamina, sensory deficits in leg and hands, slight imbalance when ambulating, reduced sensation below the knees in both legs, and feet, lower leg spasticity (particularly at night), left foot drop when fatigued, reduced sensation in torso and face, itchiness all over head, thought it was just dandruff but now face is itchy as well and dry flaking on both face & neck, body bloat feeling, disturbed sleep, up 2-4 times a night to void, urgent bladder, extremely painful bowel elimination at times even though stool consistency is excellent, poor left-eye vision from Optic Neuritis damage, left eye twitches for days at a time, mental cloudiness, word slurring, cognitive and short term name/memory problems, constantly can’t remember what I was thinking, name, item, dates, where I was headed in the house and why, some call it brain fog, mild dizziness, tinnitus/ringing in ears, body warm but feet and hands cold, back and shoulder pain.

Number of relapses before intervention : Like most of us, multiple episodes, but the most notable were two bouts of optic neuritis.
EDSS before CCSVI intervention :
FSS before CCSVI intervention:
MSIS before CCSVI intervention:

Have you had a procedure for stenosis yet: (N)
Paperwork started 11/03/09, waiting for phone call for appointment.

STENOSIS PROCEDURE HISTORY

Date/location of testing & procedure:
Type of venographic study: (MRV, Doppler)
Diagnosis:
Type of procedure:
Procedure/drug related symptoms:

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 Ruthless67 on Thu Dec 24, 2009 2:58 pm, edited 1 time in total.
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Postby CRHInv » Thu Nov 05, 2009 4:22 pm

Name: Beth
Female
Age: 46
Date(s) & type of neurological diagnosis: 4/09 Atypical MS
Lesion locations(most affected side, if known), number: MRI Brain: A few periventricular lesions. One in the right peritemporal horn and one in the left splenium of the corpus callosum enhance. MRI Cervical Spine: lesions at C4, C2, and C3-4.
MS treatments: Diet, Exercise, Daily Copaxone Injections
MS symptoms before stenosis intervention: Numb hands, Fatigue, Mental fog, Worm feeling on right torso, Trouble swallowing, Word slurring, Slight arm tremors, Left shoulder pain, Headaches from stress and weather change, Possible vision issues, Slight numbness across knees, Lhermitte sign.
Number of relapses before intervention (if applicable): One, symptoms much less severe now, but still lingering.
EDSS before CCSVI intervention (self-assessed): 1.5
FSS before CCSVI intervention: 6.4
MSIS before CCSVI intervention: 64/145

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

Have you had a procedure for stenosis yet: (Y/N) y

STENOSIS PROCEDURE HISTORY

Date/location of testing & procedure: 11/09/2009 and 11/10/2009 Stanford, CA
Type of venographic study: (MRV, Doppler) MRV
Diagnosis: Blocked valve with large collateral (I will try to get a better diagnosis from Dr. Dake.)
Type of procedure: endovascular procedure, one stent in low, left jugular
Procedure/drug related symptoms: Stiff and sore neck for a couple of days.
[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 :

(11/18/09) Eight days out - It is very early, but I think my fatigue has diminished significantly. My brain fog is gone! (Did I say that out loud?) I am not having any word slurring issues and I am not having any word finding issues. I have not felt the slight numbness across my knees since the procedure, but that did come and go a little…

(12/4/09) Three and a half weeks out - Improvements: Fatigue has diminished substantially, although I still like one short nap in the afternoon. Brain fog is really gone. Speaking issues have resolved. Swallowing seems improved, vision may be a little better.
These things that are pretty much the same: numb hands, worm feeling on right torso, slight arm tremors, Left shoulder pain,
FSS as of this update: 3.2
MSIS as of this update: 50/145

(1/14/10) Two months out – Improvements: Fatigue continues to diminish. Numbness and sensitivity in hands seems to recover quicker than before, worm feeling seems to be diminishing but does reappear, arm tremors are diminishing. Here’s the big one: My Lhermitte sign is gone. Yep, really. I was really sick of that, very glad it is gone.
These things that are pretty much the same: Right now I can say that nothing is the same except my headaches. This was a bad weather headache month, maybe worst ever. I had about four headaches that I attribute to the weather and one lasted an unheard-of two days. Everything else has improved or is diminishing. I do get some tingling in my legs when I exercise. I do still have a strange sensation in my neck, is it MS or muscle issues from the procedure? I don’t know. I need to work on my left shoulder pain from the procedure.
FSS as of this update: I don’t think this is a good measure for me anymore. Let’s just say, I would like a nap, but don’t have to have one and I go to bed early and wake up early. About nine hours of sleep per night. Almost normal? What is normal???
MSIS as of this update: 39/145

5/18/10 Six months out – Haven’t updated in awhile. I had become very tired again and some of my old symptoms had crept back in, including numbness, tremors and urgency. Dr. Dake ordered an ultrasound of my stent and that came back fine. I increased my iron intake and I am feeling pretty darn good again. My other symptoms have subsided as has the fatigue. I am not quite as crazy energetic as I was two months ago, yet. I am going to my internal medicine doctor today. I will update again shortly, after I see what he finds. This is a lot of changes in a short period of time, that is 2/09 ms symptom onset to now.
Here is a summary of how I am right now. Fatigue continues to diminish again. Numbness and sensitivity in hands seems to have increased a little over the last 2 months. It is very positional. If I lay on my back or in a recliner, my hands get somewhat numb. The worm feeling seems to be diminishing but does reappear. I have had some very slight neck tremors at night, but they too seem to be positional. My feet are a little stiff when I wake up. The Lhermitte sign is still gone. I have not had a headache for a long time, even though we have had some weather that would have usually brought one on.

8/18/10 Nine months out - I am doing very well. The urgency has resolved. I think the fatigue has pretty much resolved. I only recently went off the Plavix and shortly after that I noticed an improvement in my energy level. My hand numbness is still there. The stiffness in my feet is there. Maybe the feet are stiff because I am running two miles most days and often walking another few.

3/8/2011 Sixteen month out – Sorry for the lapse. I am still doing very well. My hands are a little numb, but not painful and they work good. Fatigue, Mental fog, Worm feeling on right torso, Trouble swallowing, Word slurring, Slight arm tremors, Slight numbness across knees and Lhermitte sign are gone or just very minor when I am very fatigued or stressed. Left shoulder pain in certain positions is there and I have not figured that out yet. Headaches from stress and weather change continue only very rarely. I do have some positional numbness, if I lay on my back or in a recliner, my hands and arms get somewhat numb. If I roll to my side this resolves.
Last edited by CRHInv on Tue Mar 08, 2011 1:00 pm, edited 8 times in total.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby ErikaSlovakia » Sun Nov 08, 2009 4:46 am

CCSVI TRACKING

MS HISTORY
Name: Erika
Male/Female: (F)
Age: 37
MS treatments: only LDN, vitamins B, C, E, D and 300 mg of EGCG daily
Number of lesion: about 30 in brain, about 3 in C spine
MS symptoms before stenosis intervention: weakness (left side is worse), fatigue and a lack of stamina, heat intolerance, balance problems, bad coordination, urgent bladder - but not all the 13 years, poor left-eye vision from Optic Neuritis damage, cognitive and short term name/memory problems, constantly can’t remember what I was thinking, name, item, dates, where I was headed in the house and why, brain fog, dizziness, tinnitus/ringing in ears - only mild, central neuropathic pain in my right arm, muscle stiffness, very often headache and often extremely strong headache, impossible to fall asleep withou sleeping pills, tremor, ataxia, sometimes walking like a drunk Robot - during attacks

Number of relapses before intervention : about 12
EDSS before CCSVI intervention : 5,5 (MS doctor assessed since 2005)
FSS before CCSVI intervention: 7
MSIS before CCSVI intervention: 107
LP: negative

Have you had a procedure for stenosis yet: (Y)
Are you using Inclined Bed Therapy I.B.T?: Yes, since Oct. 15, 2009 until Jan 15, 2010
One stent in left lower jugular vein, Katowice, Poland, Nov. 3, 2009

STENOSIS PROCEDURE HISTORY

Date/location of testing & procedure:
Type of venographic study: (MRV, Doppler)
Diagnosis: patologic valve in left lower jugular vein
Type of procedure: endovascular procedure
Procedure/drug related symptoms: NO

Number of relapses since first CCSVI intervention: 2, exactly 13 months after the procedure an 17 months after the procedure
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates): Nov. 4th - less brain fog about 15%, no fatigue, not pushing my bladder anymore to be able to empty it, no collapse feeling after washing my long hair
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
Improvements after the procedure
- after 2 hours: 15% less brain fog
- since day 1: 85% better fatigue (the first 33 days after) and 90% better bladder (no more pushing with my hands to empty it), 50% better feeling to faint
- since day 1: 80% better pulse (too fast heart beating)
- since day 8: 15% better vision but only when I look far (not the text)
- since day 10: 50% better heat tollerance
- since day 14: 20% faster movements, more confident while walking
- after 6 weeks better walking
- after flu (6 weekes after the procedure) worse fatigue again
- 82 days after - still problems with fatigue but walking is really better - my neuro is surprised
- flu is a complication for sure!!!
- when I don not exercise I almost do not feel fatigue - my anemy is a complication

10 months after my procedure in Poland
My fatigue and heat intolerance are the same as before the procedure. Fatigue is better when I lie down for at least 10 minutes. My nerve pain is maybe gone - I am 60 days without the pills against neuropathic pain. I am not worse, I do not have any new symptoms. My flow in my left jugular was very slow during the follow-up in January 2010. My next follow-up is October 1, 2010.I am still on LDN, I have never been on any DMDs.
1 year after my CCSVI procedure in Poland (EuroMedic, Katowice).
I feel the same as before my procedure. My main problem is and was fatigue. It depends on how much action I do during the day. I am not worse, I do not have any new symptoms. I have not had any relaps. I had more energy only the first 33 days. I still take LDN. Never on DMDs. My stent if fine, without a clot, without intimal hyperplasia.
My blood-drainage is very slow but it was zero before.
I DEFINITELY would do it again!
1 year and 4 months after
I have the same symptoms as before the procedure. I just feel weaker.

18 months after
From the right eye pain has developed another relapse. My vision really got worse. My arms are weaker and I also feel pain in them. I am lucky I do not have it in my legs. I would not be able to walk. It is very slowly getting better but I know it will not be as good as before. I am not able to drive anymore.
Well, so this is my second relapse after the procedure and 14th during my MS diagnosis.
I still have all my old symptoms and some of them are getting worse. I do not have any new symptoms. Heat, weather changes and headaches are still huge problem for me.
Some of my other problems: fatigue, sleepiness, tinnitus, nerve pain in my right arm, poor memory, vertigo, nausea, cog fog...

Erika
Last edited by ErikaSlovakia on Wed May 04, 2011 12:31 pm, edited 24 times in total.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby BBE » Sun Nov 08, 2009 11:03 am

MS HISTORY
Name: My wife
Male/Female: F
Age: 26
Date(s) & type of neurological diagnosis: 04/2008 RRMS
Lesion locations (most affected side, if known), number: up to 30
MS treatments: Copaxone, supplements
MS symptoms before stenosis intervention: Fatigue, occasional headaches, middle insomnia, optic neuritis in left eye, occasional tingling and numbness on various parts of the body, mood swings, little brain fog, little dizziness.
Number of relapses before intervention:
EDSS before CCSVI intervention (self-assessed): 1.5 - 2.0
FSS before CCSVI intervention: 4.7
MSIS before CCSVI intervention:
Are you using Inclined Bed Therapy I.B.T? Yes since 11/2009.

Have you had a procedure for stenosis yet: N

STENOSIS PROCEDURE HISTORY

Date/location of testing&procedure: Testing - 6 Oct 2009 Euromedic Katowice, PL
Type of venographic study: Doppler
Diagnosis: RIJV is stenosed in its middle portion, narrowed to 3 mm.
Pathologic valve/septum in the junction of LIJV with brachiocephalic vein.
No pathologic reflux in both IJVs.

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:

Update 05 Jan 2010:
Great fatigue, occasional headache and burning sensation in fingertip as the most affecting symptoms. Quitting(Changing) very stressful job as a result. Inclining bed to 6 inch (15cm).

Update 03 Feb 2010:
Some headaches accompanied by vision problems and some eye pain (may be because of strong glasses), with some fatigue as the only symptoms. Trying to maintain 8 hrs sleep daily.

Update 08 Mar 2010:
Small numbness feeling on the whole left side of body, mainly fingertips. Left eye vision problem/pain remains.

Update 13 Apr 2010:
Numbness in left hand/fingers accompanied by occasional neuralgic pain lasting more than one month. Left eye vision problem/pain remains. MRI Scan showing 10 new lesions. Total 30 (although for me not so clearly visible). Bed declined from approx. 16cm to 14.

Update 20 May 2010:
Previously mentioned symptoms are slightly better (or accustomed to?)

Update 21 July 2010:
IBT stopped since July 2010. Left eye vision in bright light 30%, in dark 90%. Occasional neuralgic left hand pain.
Last edited by BBE on Wed Jul 21, 2010 5:04 am, edited 13 times in total.
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Postby CureIous » Sun Nov 22, 2009 1:22 pm

CCSVI TRACKING
MS HISTORY
Name: Mark M.
Male
Age: 40
Date(s) & type of neurological diagnosis:
Initial onset severe optic neuritis 2004. Right eye turned inwards, aka "diplopia". Extreme fatigue accompanied first onset.
"Official" diagnosis RRMS in 2008 after multiple relapses.
Lesion locations number: Mostly left side, same as the most significant stenosis. I'll verbatim it from the pathology report for my latest MRI for the technically minded:
"Small and confluent foci of T2 hyperintensity are seen in the periventricular and subcorical white matter the thalmi, the pons on the left. Some are perivenular and at the callosal septal margin consistent with multiple sclerosis. Less than 15 lesions are seen. A 7mm lesion in the left frontal subcortical paramedian white matter is of ring enhancing consistent with active demyelination. No other foci of abnormal contrast enhancement demonstrated.
MS treatments: Avonex.
MS symptoms before stenosis intervention: Fatigue, depression, loss of balance, complete inability to concentrate, total loss of any short term memory. Dizziness on change of head position (pick something up off floor, tilt head back etc.) Slurring words, inability to maintain conversation, disorientation in open noisy places with lots of activity, malls, stores, etc. Vertigo.
Number of relapses before intervention (if applicable): 2-4. Not "full blown" until 2008 then things seemed to be progressing faster than in years previous. (my assessment)
EDSS before CCSVI intervention 1.5-2.0 Self-assessed.
FSS before CCSVI intervention: 6.5, definitely.
MSIS before CCSVI intervention: 103

Have you had a procedure for stenosis yet: Yes!

STENOSIS PROCEDURE HISTORY

Date/location of testing&procedure: 08/03/2009 Stanford University
Type of venographic study: MRI/MRV+Doppler
Diagnosis: Significant stenosis on left and right side at ear level, on left and ride side at clavicle level.
Type of procedure: Orthoscopically placed stenting. No angioplasty even attempted at my request.
Procedure/drug related symptoms: All the typical stuff, nothing spectacular worth mentioning since it all went away after 2 months. Typical areas for pain. Sinuses were going through a strange adjustment period wherein my right ear got "blocked" but not an infection more like fluid pressure. That's all gone for good now.

Number of relapses since first CCSVI intervention: None.
Impact on your MS symptoms in words. Where to begin? Fatigue is nearly just background noise if there at all. Mental acuity is STELLAR. Short term memory improved 100% from immediately before surgery. No more balancing issues, no more wall rubbing, no stumbling, tripping, running into things. Much inertia to get up and do things for once. Depression has lifted, outlook is bright. Problems are addressed instead of ignored because they took too much brain power. Will put more later as they come to me.
EDSS as of this update Not worth mentioning. 0.2. Just some tinnitus still but that's not disabling!
FSS as of this update: 0-1, maybe .25. Closer to zero.
MSIS as of this update: 34

What wasn't even possible 1 year ago is now living reality every day.
Last edited by CureIous on Fri Feb 12, 2010 1:02 am, edited 3 times in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Liberation January 2009

Postby jennifero » Sat Nov 28, 2009 12:15 pm

CCSVI TRACKING
Moved story here,originally added Mon Oct 26, 2009 6:24 pm;
MS HISTORY

Male/Female: F
Date(s) & type of neurological diagnosis: RRMS:
Number of relapses since first CCSVI intervention:0

In January 2009, I left my home & country and went to Italy for Liberation at the University of Ferrara Vascular DiseasesCenter,all in hopes to help my brothers&sisters around the globe end the suffering!

3 years in to my MS diagnosis, tried Avonex, MANY IV's Steroids,Copaxone, GammaGuard-IVIG and CellCept.

First night after of liberation(1/12/09) I was able to get undressed & dressed standing in middle of room w/o holding on to chair or having to sit down. Which has not happened for me in 3 years. I have also driven approx 10 times which I was not able to do before the liberation and I missed my 4X4,that's for sure! My last neuro visit was better news,I have to share first I dropped an entire point off my EDSS rate and second,shared how I believe this happened. My mobility has improved and I keep the body moving with my WiiHab@home. I use the Wii Fit& Wii Active and truly enjoy the challenges in the games yes,even on the easy settings it is still challenging.
HUGS from your sister around the globe. GOD BLESS
I am sorry that I failed to mention,I was the first US patient in CCSVI's first study for liberation. If I had to go back & do it again,my answer is YES,YES,YES.

1/8/10>> using Inclined Bed Therapy I.B.T? No

*December 19, 2009, 11:50 PM*
http://www.buffalonews.com/home/story/899766.html
The Buffalo team is also collaborating with Italian researchers, including Zamboni, on a second study in which 16 multiple sclerosis patients — eight from Buffalo and eight from Italy — were assessed in Buffalo using MRI and then had their blockages cleared in Italy
http://www.buffalonews.com/home/story/899766.html
Last edited by jennifero on Fri Jan 08, 2010 4:55 pm, edited 2 times in total.
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Postby jr5646 » Sat Nov 28, 2009 11:39 pm

CCSVI TRACKING

MS HISTORY
Name: John
Male Age: 44
Diagnosis: RRMS - DX 2002
Lesion locations (most affected side, if known), number: MRI 4-09 Multiple focal areas of abnormal increased flair and T2 signal which are located in the periventricular white matter adjacent to the ventricular surfaces.

I recently found an old Cervical MRI report that I found interesting (possibly CCSVI related). Jan. 6th 2003 - "The focal area of increased signal noted within the cervical cord posterior to the C3/4 level is again noted and has not changed significantly when compared to prior exam of 8-7-2002. No significant cord enlargement or enhancment occurs at this level. As noted on the previous examination, a small focal posterial protrusion of C4/5 inverteratebral disc occurs just to the left of midline and has not changed significantly since the prior study. A more prominent right posterior osteophyte and disc protrusion is noted at the C5/6 level which appears to impress on the right anterior aspect of the cervical cord. This is also similar to the prior exam. There is generalized congenital spinal canal narrowing from C3 to the top of C7 also similar to the previous study. No significant abnormal areas of gadolinium enhancement noted. No suspicious signal changes in the imaged bony structures."

Since 8-7-2002 not one Neuro. and (I've seen a few) have even commented on this report nor referred me to an Orthopedic Dr. to further examine my neck...

MS treatments: LDN, Rebif, Tysabri (last 3 years).. getting ready to discontinue because of the PML risk, not to mention that it's not working.. Couple of steroid treatments along the way and some LP's (neg. for proteins). A bunch of other meds for symptom control with minimal success which add to the confusion - meaning what symptoms are from MS and what are the side effects of the meds., so I've pretty much given up on them unless absolutely necessary..

MS symptoms before stenosis intervention: Slooooow downward loss of function. Extreme fatigue, terrible balance issues, heat intolerance, depression, vertigo with nausea, urinary frequency, optic neuritis, permanent left arm/hand numbness, right leg drag, muscle weakness, cog fog - short term memory problems, severe (taking a bullet would be less painful) headaches, and last but not least, lower back muscle spasms (the best).

Number of relapses before intervention (if applicable): relapses are not clearly defined now

EDSS before CCSVI intervention: 6 (self-assessed)

FSS before CCSVI intervention: 7

MSIS before CCSVI intervention: 101

Have you had a procedure for stenosis yet: NO WAS Scheduled for testing and potential balloon angio. on April 19th 2010 - Dr. Sclafani required to submit to IRB, No further treatment.. Who knows when and IF I can get treated.

BNAC: Testing May 24th-25th 2009 - I only presented with one of Zamboni's doppler criteria (#2), so technically I tested negative for CCSVI. Possible valve issue (lower right), but may have been an "artifact". The radiologist who read my MRV commented on high stenosis, and elliptical / flattened / twisted IJV's but was given the following report: "Essentially normal MR Venogram"-- whatever that means? The MRV was not reviewed by a vascular specialists.

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 jr5646 on Wed Jun 02, 2010 7:46 am, edited 4 times in total.
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Postby wonky1 » Mon Nov 30, 2009 2:03 pm

CCSVI TRACKING 11/08/2009

MS HISTORY
Name : Wonky1
Male
Age: 43
Diagnosed March 1997 with primary progressive multiple sclerosis
My only MRI at time of diagnosis revealed a lesion in the pons area of brain and one in spinal column IF I recall.
MS treatments: LDN for 3 years, supplements, bladder botox, Modafinil, occasional tizanidine.
MS symptoms before stenosis intervention:
Two crutches but mainly in wheelchair when out.
Wall walking and clambering on furniture at home.
Intention tremor, worse in right hand. I only use a fork to eat.
Losing voice intermittently but often, I sound drunk.
Poor sleeping, usually five hours or less per night.
Fatigue during day, often have a couple of hours sleep or dozing during day.
Myclonic jerks in bed when tryng to fall asleep.
Diplopia when looking to left but vision is perfect.
Intermittent spasticity in legs.
Always spasticity in legs when waking or after prolonged immobility.
Cognitive problems when fatigued.
Mild tinnitus – (May be the rock music not M.S.)
Generally elevated mood, sometimes mania.
Intermittently choking on food, often on fluid.
Occasional pain in trapezius muscle, lasting for days or weeks, feels like stress or tension but can happen when I’m totally chilled and relaxed.
Very occasionally, insane itching on forearms.
Week legs, I often collapse when trying to stand. I pull myself upstairs with banister rails.
Numb hands, worsening with fatigue.
Clumsy, poor co-ordination.
Constipation
Always very bad balance.
Heat intolerance over 19°c, easily paralysed completely by heat. Cannot tolerate humidity.
Motion sickness when moving head.
Often have frozen feet.
Unable to write, or maybe a few words using both hands on pen.
I need carers to cook and clean, I spend most of my time laying on sofa.
I manage personal care myself, just.


Number of relapses before intervention (if applicable): N/A but exacerbations in spring and autumn/fall
EDSS before CCSVI intervention : EDSS =6.5 self assessed.
FSS before CCSVI intervention: FSS=6.4 self assessed.
MSIS before CCSVI intervention: MSIS=117 self assessed.





Have you had a procedure for stenosis yet: O yeh!

STENOSIS PROCEDURE HISTORY

Date/location of testing&procedure: 11/26/2009 Poland
Type of venographic study: (MRV, Doppler) Both and MRI
Diagnosis:Inverted valve in my right jugular, a membrane blocknig the left one.
Type of procedure: Balloon angioplasty.
Procedure/drug related symptoms: Mild sedation
[Repeat this section if there have been more than one procedure]

Number of relapses since first CCSVI intervention: N/A
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):



1. My bladder no longer goes into spasm. – From day 1
2. Myclonic jerks in the evening and at night have stopped - From day 3.
3. My mind is clearer and sharper - From day 4
4. I no longer choke on food or fluid, even if I rush – From day 1
5. My voice is strong and clear - From day 4
6. Today (11/30/09) I had my first hot shower in 13 years. Steam would normally paralyse me but there were no problems – From day 4
7. I am less fatigued, just normal tiredness –From day 4
8. I have started sweating again – From day 1, really noticeable from day 4
9. My sense of taste has returned – From day 6
10. My sense of smell has returned – From day 6
11. My pride prevents me talking about a well known male M.S. problem that has something to do with lead and pencils-Big improvement from day 1, well kinda medium.
12. Not feeling sick when bending over or rotating my head fast – From day 5

I have stopped LDN, Tizanidine and Modafinil from day 5 They are no longer required

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

More to follow and pictures.
Last edited by wonky1 on Thu Dec 03, 2009 4:43 am, edited 1 time in total.
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Postby Algis » Thu Dec 03, 2009 2:05 am

Algis
M 47 Yrs.
SPMS 04/1998

Lesion locations (most affected side, if known), number:
??

MS treatments:
Prednisolone, Mitoxantrone (3 injections), Methotrexate since 09/2004, LDN since 02/2008.
Vit.D3 started 2010/01/07 0.5g/2 days
Catheterized bladder for 18 months, been solved after LDN intake.
Surgery for cataracts due to steroids (Prednisolone) in 09/2007.

MS symptoms before stenosis intervention:
Paralyzed waist down, right arm/hand barely moving; last limb already weakened. Incontinence, Moments of "black conscious state" (<10secs), difficulties swallowing; constantly need help (wake-up, clean, change diapers, clothing....). Spasms, stifness, clonus of the left hand (remaining functional limb).
*(Huge improvement by the use of external catheter - Only during the night I need a diaper - Cheaper and much more convenient - I recommend that.)
I hope to think I have no cognitive problem :roll:


MRI 2010 July 7th at Tai Da Hospital Taipei

MRI Study without and with enhancement showed:
1. No evidence abnormal DWI or SWI lesion.
2. Focal bright SI on T2WI, low on T1WI, with negative mass effect and no definite abnormal enhancement was shown in right medulla, bilateral cerebral peduncles, periventricular and subcortical white matter.
3. The ventricles and sulci were dilated diffusely and symmetrically.
4. The major vessels are unremarkable at the Willi's circle.
5. Atrophic cord shown with abnormal SI on T2WI at C4 to C7
6. Degenerative disc shown in the levels of whole C Spine with probably OPLL. The study wasn't for spine so the detail is not enough.

Impression: multiple old insults. Leukoaraiosis? Atrophic cord, chronic change? MS?





Number of relapses before intervention (if applicable):
EDSS before CCSVI: 8+
FSS before CCSVI intervention: N/R
MSIS before CCSVI intervention: 121 (?)

Are you using Inclined Bed Therapy I.B.T? Y/Not now
Started 2009.12.27
2009.12.27 => No signifying difference.
2010.01.07 => Blood pressure change? Cant verify.
2010.01.11 => Raised to full 16cm, no obvious changes.
2010.01.26 => No changes - But wife's feeling better :o
2010.02.05 => Legs and feet burning 'inside' during the day.
2010.02.26 => Legs/feet burning stop. Spasms and stiffness subsided.
2010.03.11 => Nothing to report; +ve or -ve.
2010.06.02 => No changes.
2010.06.07 => Lowered back to 0°, still nothing changed.
2010.07.12 => No more attempts; temporarily.
<<Will report when/if resume>>


Have you had a procedure for stenosis yet: Y
STENOSIS PROCEDURE HISTORY

Date/location of testing&procedure:

(1)
12.03.2009 National Taiwan University Hospital
Doppler
Diagnosis:
01.26.2010
No anomalies detected
But "standard protocol" was used

03.31.2010 National Taiwan University Hospital
MRx w/ Gadolinium (not sure what has been checked)
Diagnosis:
No stenosis reported in both jugulars. NTUH will not go further if no obvious stenosis found.

(2)
Second opinion seeking
07.02.2010 Veteran General Hospital Taiwan (VGH)
07.05.2010 Echo Doppler and intracranial (VGH)
07.12.2010 MRV with contrast (VGH)
07.13.2010
<result>
Your Left jugular vein is compressed by the cervical spine at level of C 1. The lumen of Lt jugular vein is very small at the level of C1, >90% stenosis by MRV study. The jugular venous valves are functioning normal. Because there is no any stent designed for the vein, therefore Dr. XXXX, who is responsible for the intervention treatment, will find a suitable stent available on the market, though designed for the artery, for the special location of the vein. The detailed study of azygos vein needs conventional venogram, and MRV of azygos vein only can provide limited information.
<stand by>



{NA}
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:
{/NA}
Last edited by Algis on Sat Sep 11, 2010 1:30 am, edited 23 times in total.
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Postby shoshin » Tue Dec 08, 2009 5:30 pm

MS HISTORY

Name: Shoshin
Male/Female: F
Age: 39

Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other):
Dx’d with MS 11/07; previously mis-dx’d with idiopathic peripheral neuropathy for six years
Gave up on the question of type; in 1998 one clear mild sensory relapse with seemingly complete remission; several years gap until in 2001 became very sick with strep throat and began having ongoing mild symptoms, some of which (the more transitory and less bothersome ones) went away; since then I have not had clear relapses and remissions, although there are perhaps shallow waves; I cannot usually detect progression over short periods of time, but over six months or a year, I continue to get slowly and steadily worse; my neuro’s last opinion on this was that I am having “subtle relapses with lots of residual deficits.”


Lesion locations (most affected side, if known), number:
Dx’d with a couple “small spots” on the brain; brain MRIs continue to read along the lines of “minimal bihemispheric findings consistent with MS”
Dx’d with three lesions on c-spine; follow up c-spine MRI describes more, but smaller lesions and some improvement (although I got worse in the interim)

MS treatments: FTY720 trial (June 2008 to present; an RRMS trial for which I am probably not technically qualified, but since I got in several MS neuros have told me I should stay put since the fact that I’m not having acute relapses leaves me with no other promising options); probably on real drug as my WBC at my last physical was low enough that my PCP was trying to figure out how to ask me if I ought to have an AIDS test

MS symptoms before stenosis intervention:
Spasticity, fatigue, balance; foggy brain, muscle fatigue, difficulty walking far, fast or in a straight line; bladder issues (up once a night; hesitancy; retention); don’t have constipation per se, but more trouble than I used to have; reduced sensation (most of body); paresthesias (widespread); lack of coordination; unable to do fine work with hands, especially left

Number of relapses before intervention (if applicable): 1-2 ??

EDSS before CCSVI intervention (self-assessed or physician-assessed?): 3.5 (9/09; physician-assessed; based on my experience with this, I’m not really sure how you could self-assess accurately unless you’re at the numbers where it’s totally determined by how far you can walk; here is a link to more detailed EDSS scoresheet: http://www.neuromaas.nl/Neurostatus%20form_29AUG05.pdf)

FSS before CCSVI intervention: 6.0

MSIS before CCSVI intervention: 83


Have you had a procedure for stenosis yet: (Y/N) Y

STENOSIS PROCEDURE HISTORY

Date/location of testing & procedure: testing on 12/3/09; procedure on 12/4/09; both at Stanford
Type of venographic study: (MRV, Doppler): MRV
Diagnosis: MRV was non-diagnostic; no significant narrowing of jugulars, but Dr. Dake saw a suspicious black line on the valve on the right jugular and a large collateral vein that looked like a big, fat cup handle going more or less just around the valve. The collateral vein was larger than the main vein and there was also some tapering above the valve. He also said he couldn’t tell if there was a problem with the azygous and pointed to a black spot where it should be (I’m not sure now if was a problem with my azygous or the MRV just doesn’t do the azygous well). He thought the MRV was suspicious enough to proceed with the CT venography, which showed that the valves were malfunctioning and flapping open and closed when they were supposed to stay open as blood was draining. This caused slowing and reflux of the blood. He didn’t see any problems with the azygous.
Type of procedure: balloons in valves of both jugulars
Procedure/drug related symptoms: N/A

12/20/09
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): improvements in temperature regulation (I feel warm!), fatigue, cog fog, endurance, balance.
EDSS as of this update (self-assessed or physician-assessed?) 3.0 (physician-assessed; better than the 3.5 pre-procedure, but as my EDSS has vacillated between 3.0 and 3.5 over the last eighteen months for reasons not always discernible to me, I am not sure this is particularly significant)
FSS as of this update: 3.6
MSIS as of this update: 64

For the long story, see my journal entries at http://www.medhelp.org/user_journals/list/333672
Last edited by shoshin on Tue Dec 22, 2009 5:21 am, edited 2 times in total.
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Boopieup

Postby hoodyup » Thu Dec 10, 2009 1:40 pm

MS HISTORY
Sharon AKA Boopieup
Male/Female: F
Age: 36
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): RRMS in 2005, however continual progression since that time
Lesion locations (most affected side, if known), number: 1 8mm lesion right frontal lobe and numerous smaller lesions
MS treatments: Copaxone discontinued after 1 month due to site reaction, hyperbaric oxygen therapy discontinued after 6 treatments due to worsening optic neuritis, Rife Resonator Therapy (for Lyme) discontinued, oral antibiotics discontinued after 1 month (for Lyme), LDN for leg pain
MS symptoms before stenosis intervention: Symptoms started June 2004 Optic neuritis, Leg weakness (bedridden), numbness, purple feet, bladder incontinence, constipation, emotional instability, fatigue, sensitive to heat and stress. Cognitive difficulties: can't multi-task, short term memory loss, difficulty finding correct words
Number of relapses before intervention (if applicable): Continued progression from 2004 on
EDSS (self-assessed): 8.5


Have you had a procedure for stenosis yet: Y

STENOSIS PROCEDURE HISTORY

Date/location of testing&procedure: "Unnamed LOCAL interventional neuro radiologist" 4-14-10
Type of venographic study: MRV and doppler
Diagnosis: Narrowing of R IJV, slow flow lots of collaterals
Type of procedure: angioplasty of R IJV flow restored, azygos and LIJV looked ok on venogram
Procedure/drug related symptoms:

Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words: Day 1 patient is resting, feet and legs feel less stiff, can now lie down flat without freaking out
Day 2 more feeling in fingertips
more feeling in legs (can pass the paper clip test now)
better strength in left hand
improved vision
easier to transfer to potty chair
fatigue is less
arm strength is better -- able to lift self on potty chair (pushups) with arm strength only
voice quality is stronger
feels a lot more clearheaded
took a hot shower for the first time in 5 years and it felt great
transferring back to the bed from the shower chair was easier
breathing feels less labored -- hasn't felt the need for the O2
no vertigo when leaning head backward or lying flat
freakout mode not happening when feet are on the floor
standing while holding self on wheelchair for 30 sec without 02 (pre procedure was 15 sec w/out O2 and 30 sec with O2)

Week 2 UTI setback and bad anti-biotics reaction causing fatigue and stomach pain and feeling of unwellness. After switching to Keflex she feels much better. Heat intolerance, vertigo still gone. Memory improved.

Day 13 Seems to be reverting back to pre-angio. Numbness returning, cold(er) feet and legs, feels agitated, vertigo back, heat intolerance back, double vision back--need to set appointment for follow-up.

follow her progress on FB

http://www.facebook.com/profile.php?id=100000563792746
Last edited by hoodyup on Wed Apr 28, 2010 11:39 am, edited 5 times in total.
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Postby Loobie » Fri Dec 18, 2009 2:35 pm

CCSVI TRACKING 12/18/2009

MS HISTORY
Name: Lew (Loobie)
Male/Female: Male
Age: 43
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other): 8/01 Diagnosed RRMS Sometime in 05 (forget month!) changed to SPMS
Lesion locations (most affected side, if known), number: Unknown
MS treatments: Avonex (1st 3 years), tovaxin trial (1.5 years), Tysabri (seven infusions) Currently on LDN (been on 3 months)
MS symptoms before stenosis intervention: Optic Neuritis (Uthoff's sign), over active bladder AND detrussor sphincter dissynergy, chronic constipation, balance, dizziness, anorgasmia, leg pain, leg weakness, foot pain, spasticity
Number of relapses before intervention (if applicable): on the order of a dozen or so.
EDSS before CCSVI intervention (self-assessed or physician-assessed?): physician assessed 4.0
FSS before CCSVI intervention: 3.33
MSIS before CCSVI intervention: 110


Have you had a procedure for stenosis yet: YES


STENOSIS PROCEDURE HISTORY

Date/location of testing&procedure: 7/15/09 Stanford & 9/15/09 Stanford
Type of venographic study: MRV and Doppler (not sure if doppler data was used)
Diagnosis: Double jugular stenosis
Type of procedure: Placement of Jugular stents on both sides
Procedure/drug related symptoms: reacted to Morphine, Percocet and Coumadin - Spinal Accessory Nerve damaged and have shoulder defecits now.


Number of relapses since first CCSVI intervention: 0 but I don't relapse anymore, just progress
Impact on your MS symptoms in words: Very positive impact on my life read: http://myhopefuljourneyintoactualmsreco ... gspot.com/
EDSS as of this update: 3.0 Self assessed, but have good knowledge having been in a trial and having been administered the test so many times.
FSS as of this update: 2.33
MSIS as of this update: 83

The surgery has served me well. I definitely can still flare my MS up if I overdo it with too much exercise, work or stress (and oddly enough, too much sleep). My shoulder is still not well enough to build strength in, but my range of motion is back and I can now exercise it, just not build strengh yet in it.

I'd do this again tomorrow as it is the only thing that can allow me to say this:

"the last six months were better than the previous six, and that's something I couldn't have said for 8 years".
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Postby jean-la-grenouille » Mon Dec 28, 2009 4:29 am

MS history

Name : Jean
Male
Age 30
DATE/Type of neurological diagnosis : 1/1995 (RRMS) 3/2002 (SPMS) 2008 (benign MS). My sister has PPMS

Lesion locations : for MS ? for CCSVI : not blood flow in both internal jugular veins.

MS symptoms before stenosis intervention : no intervention yet. But CCSVI diagnosis using echo-doppler technology. (Paris).

Number of relapses before intervention : no relapses for 8 years without any MS medication.

EDSS before CCSVI intervention (self assessed) : 2.5

Have you had a procedure for stenosis yet : No
Have to try if inclined bed therapy can relieve some symtoms (as being tired)

May have intervention in Paris.
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Postby whyRwehere » Mon Dec 28, 2009 5:44 am

MS HISTORY
Name : Mr WhyRwehere
Male
Age: 40
Diagnosed with probable MS 2002, later accepted this was progressive, but no one actually wanted to say those words and we didn't want to hear them anyhow.

Lesion locations, number: Last MRI end of October 2009, a few tiny lesions on right side of the brain, didn't see anything on the spine, Doctor wouldn't have thought MS, if he didn't know about the LP being positive, and obvious problems

MS treatments: Avonex 1.5 years (?) 2002(felt awful, had aversion to injecting, and was not helping), Copaxone 1 yr 2004 (seemed to be allergic to it: chest reaction then chills, then hives, plus it didn't help), ABX Wheldon protocol for 2 years...needed to do more pulses, but stopped at end of Oct 2009, because of UTI, then had the phlebographie done. May try again at a later date. Best Bet Diet since 2002

MS symptoms before stenosis intervention: Heat sensitivity, bladder problems (etc), walking problems, fatigue, lack of core strength, occasional numbness in hands, Leg spasms, especially at night in bed.
constant worsening of symptoms, although slowly.
EDSS before CCSVI intervention: 4.5 at neuro Sept 2009/ wife's guess 6

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

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


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: June 2009 doppler Paris/ Nov 25 and Dec 23 2009 Phlebographie with angioplasty Paris

Diagnosis: 3 blockages in left internal Jugular, missing pre sacral venous plexus
Type of procedure: angioplasty, but not for PSVP

Dec 28 2009
Nothing to report yet. Trying to get over past UTI/Foley Catheter usage and on antibiotics for that, which is causing weakness and a further inability to pee...self-cathing now.

Feb 11, 2010
Not much to say, but self-cathing still. Peeing seems to be improving. He doesn't seem as tired, but he still can not walk well.
Has started physio 2 times per week. Will update if there is anything to report.

March 23,2010
Had another doppler done on March 8th. The left Jugular is functioning well. My husband seems to me, to be less tired, but he doesn't notice any difference. Still no fix for the sacral plexus veins, so legs still weak, peeing not great, but still self-cathing, and with that and and taking D-Mannose plus cranberry tablets, he has had no more UTIs and only one accident. Feet still get cold. His balance seems better to me, he was swaying from wall to furniture before, now it is just a painfully slow awkward walk.
April 20, 2010
Nothing positive to report, but my husband is holding on to all the walls again. From the waist up, he seems quite well. Everything below the waste is the same.
Last edited by whyRwehere on Tue Apr 20, 2010 7:13 am, edited 3 times in total.
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