Name A. McGowan
Male/Female: (M/F) M
Date(s) 2006 -2010 RRMS still unconfirmed.
Lesion locations (most affected side, if known), number: 4 vertical fingers, one on each quarter of brain small not proven to be relevant. Left side of body mainly affected.
MS treatments: No drugs; BB diet + supplements, massage weekly, accupuncture weekly.
MS symptoms before stenosis intervention: Dizziness and vertigo, overwhelming fatigue, weak legs, poor balance, spasticity in back and neck, restricted breathing, cog fog, urinary urgency/incontinence, bowel problems, vision not sharp
Number of relapses before intervention (if applicable): 3
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
FSS before CCSVI intervention:
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm
Are you using Inclined Bed Therapy I.B.T? (Y/N) Y
Have you had testing (and possibly procedure) for blockage yet: (Y/N)
STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure: 23 -25 April 2010, Tychy Poland
Type of venographic study: Doppler + MRV + Venography
Diagnosis: Stenosis and greatly reduced flow in LIJ, Stenosis, pathologic valve and reflux in RIJ. Venography showed reflux both sides.
Type of procedure: Balloon of left internal jugular and balloon + stent in right internal jugular, azygous checked and OK.
Procedure/drug related symptoms:
None worth mentioning.
02/05/2010 Sides of neck a bit sore. Some remaining pain from injections in legs/stomach. Occasional headache to back of head (not severe or persistent.)
Another thing I noticed the day after the procedure was I had a lot of swirly dark eye floaters in my eyes. This has cleared up now. Was this dye getting up into my eyes?
14/5/2010 Every time I injected the clexane I got a bruise which didn't go away. So I ended up with 14 of them. A bit painful. Three days after I stopped the clexane they have gone. Acupuncture seems to have sorted the stiffness/pain in thel neck. Actually four of my bruises persisted and were painful for another three weeks.
Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words
Feel warmer, enjoy sunshine, dizziness almost gone, bowel problem gone, balance OK, walking OK, feel alert, no appreciable fatigue yet. So far brilliant! Hope it keeps up.
Had a poo last night with very little effort. Usually a gargantuan struggle.
Went thru night without going to toilet!
Can do really big yawns. (spasticity in rib-cage much less.)
Dizziness very very gentle.
Entered room carrying tea in one hand, bowl of cereal in other, used my bum to open door and closed door behind me with right leg while balancing on left leg (left side is my bad side) without even thinking about it. Wow!
Wife commented on my walking in the Supermarket. Used to shuffle now stride.
Muscles behind left ear relaxing – strange popping or crunchy noises in ear – in fact neck muscles relaxing all round. Can turn head easier.
Very sharp eyesight
Can do 1 foot in front of another walk
Strangely have had small but persistent skin infection on both hands for over two years. It is now clearing up.
Ears continue to improve – I did not expect this so it cannot be placebo.
No headache and sense of weight on head and shoulders when wake up. Head feels light.
NO FATIGUE – I have been getting up before 8:00 a.m. and by 11 p.m. I have been pleasantly tired and easily fallen asleep. So normal!
Previous improvements have been maintained. Small things I have noticed: Notice air-movement on face when outside. Hands are pink and skin slightly shiny. Legs feel like a pair again. Looking in a mirror eyes are shiny. Still very gentle dizziness.
A month out now. I am nervous about being too positive but I am almost ready to say I have no MS. I am sure people looking at me cannot see any symptoms. I am still gently dizzy but it is a kind of background thing that I can easily ignore. I can still balance perfectly in spite of it. On occasions when I sit still (or driving) I feel 100% normal. No fatigue, no pain, no cog-fog. My thinking is much faster I can now keep up with conversations and I am getting just as argumentative as I used to be. I enjoy feeling tired at the end of the day. If I was being picky I would say my legs are still somewhat weak and my lower back still has some spasticity. But I am expecting that will improve when I start doing some proper exercise. I am still unsure how long to give my stent to heal so I am only doing gentle exercise. I will probably wait another fortnight to start.
Six weeks gone but I have chest/throat infection so I am not feeling too good. I have started doing a bit more. I am doing the mile walk up the hill behind our house almost every day (about 100m up and down). I was on a bike for the first time in over three years yesterday - I did eight miles there and back along the canal and carried the bikes over stiles and things. Muscles were tired but no MS fatique. Soon as I get over the infection I shall start doing some weights and if I can Yoga. I have been taking betahistine for four years to help the dizziness. I foolishly stopped taking it to see what would happen and the dizziness has got worse. It is still not real problem. I will probably carry on for a month and go back on if the dizziness does not improve.
Three months from liberation. Unfortunately during the last three months I have had three chest infections and one epididymitis so I have not been feeling good a lot of the time. I don't know if that is anything to do with liberation but I am quite careful about hygiene so it baffles me. Anyway I have recovered quickly each time and I needed anti-biotics twice. As far as the MS goes I am now doing at least a two mile walk each day and I have done ten miles on more than one occasion, of course each time I get an infection it nocks me back a bit. All improvements I have already mentioned have been maintained and I continue to notice things I can do now which I could not before.
I would call myself more or less normal now but not nearly as fit as I want to be. I still on occasion notice diziness. I keep thinking it has gone and then I do something which just starts it a little bit. Perhaps I am being to picky. Frends tell me that normal people can make themselves dizzy too!
Getting ill always seems to bring at least some MS symptoms back but I am wondering whether this is simply my way of looking at it. I am not sure whether I am making an association with MS for what are normal symptoms of other diseases. Perhaps after having MS I am always going to interpret any normal symptoms of other infections as MS like.
I still don't feel able to say I am completely cured. But I certainly am able to live a normal life. And I do feel I am still improving. So I will report after six months. I intend to have a very active and enjoyable summer!
Only five months since Liberation but I have changes to report so I am posting now. I have had a definite worsening of symptoms. Perhaps due to infections (I have had six now) perhaps not. I also have been back to be re-tested by Kostecki. My right jugular (stented) is now fine and flowing average to above average. My left Jugular does not show reflux but is flowing poorly, almost as bad as before liberation. And I have had what I can only call a mini-relapse twice. On two separate days (a week apart) I have thought I was no better than before treatment. I stuggled to do the half mile walk behind my house and was very unsteady and dizzy. I also had a lot of back pain and spasticity and severe headaches. But I have improved again since. I now feel perhaps 80% as good as I was before treatment. I am thinking maybe I am now borderline for CCSVI.
Having said that I have been very active the past two weeks and have driven several hundred miles non-stop on two occasions. I am also doing quite a lot of DIY and not having a problem. On two days I have walked five miles. I am still clear headed, my eyesight is sharp. I do not have MS fatigue and my balance is again very good. This is not like my MS was before liberaton. I never recovered as quickly as this (except with prednisolone).
The difference is mainly that I have to concentrate more now. For example I can still do the walk where you put your feet heel to toe. Four months ago I could do that effortlessly. I have to pay attention now. I now sometimes wake up with a bit of a headache (I used to wake up with bad headaches) but it goes a few minutes after I get up. I just tried standing up and closing my eyes and walking round the room touching things to see where they were. I can do it. I have an accurate picture of the room in my head and I can accurately judge my own movements even with my eyes shut. And of course I am not stumbling or falling. So I am still pretty good really. But I was definitely better than this.
So I am left wondering. Did the successive infections cause it? If so I might continue to improve. Has the failed angio in my left jugular slowly worsening caused it? Has the treatment done something to my immune system to cause me to get all these infections?
Most of all, do I need another treatment perhaps with entry from the left femoral? I am thinking that might be a good idea at some point. But I am not about to rush into it
So I am optimistic again. I will be voting in part 3 of the Liberation Survey soon. I had decided to vote 'moderate' but I am not sure now. I think if I can go another month without an infection I might be back to dramatic. We shall see.
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update