A (almost) 3 month update.

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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A (almost) 3 month update.

Post by lilaclomax » 8 years ago

Hi all

Yes I am being lazy and just copying and pasting my latest report from my tracking status... I do have a good excuse though as I am at work :D

Just to summarise - I have had a great 11 weeks! :lol:


Name: Lilaclomax
Male/Female: F
Age: 32
Date & type of neurological diagnosis: RRMS - since 2006
Lesion locations (most affected side, if known), number: Multiple lesions in cerebral hemispheres, lesion in right temporal fossa (potentially unrelated). Changes in L. 1/2 and 3/4 discs.
MS treatments: Avonex
MS symptoms before stenosis intervention: Optic Neuritis (loss of sight in left eye), L'hermittes (electric shocks down my back), Paresthesias (loss of sensation in multiple locations), Myelopathic exacerbation (weakness and inability to walk at times), fatigue, Trigeminal Neuralgia (labour pain in my right hand side of my jaw!), Diplopia (seeing double)... typing these out makes me sounds like a walking medical directory.
Number of relapses before intervention: 8
EDSS before CCSVI intervention (physician-assessed): 3.0
FSS before CCSVI intervention: 5.5
MSIS before CCSVI intervention: 71
Are you using Inclined Bed Therapy I.B.T? Y

Have you had testing (and possibly procedure) for blockage yet: Yes, both testing and Liberation Treatment


Date/location of testing/procedure: 17th March, Katwice, Poland

Type of venographic study: MRV, Doppler

Diagnosis: Stenosis right and left jugular vein

Type of procedure: Percutaneous nalloon angioplasty right and left jugular vein (Cordis 14 x 40mm)

Procedure/drug related symptoms: Procedure took around 45 mins and was painless, Fraxiparine prescribed for 7 days. No pain after procedure, some aching in neck where ballooning took place.

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): (18/3/2010) To date feeling of warmth all over although this could be related to the IV from surgery. The fatigue has dissapeared and my double vision takes longer to appear.

(1/5/2010) Wow - has it been this long! The fatigue is non-exsistant, the double vision is always in the background but doen't make an appearance unless I have had a long day at work and even then it clears up after a couple of hours of relaxing.
I have had no other symptons and the feeling has returned in the thumb and first two fingers on my left hand. My ring finger and little finger still have a 'tingling' feeling but at least I can now feel what I am picking up.
I am still not taking any DMDs or other medication.

(2/6/2010) I have to hold my hands up... I have not been on this forum for a few weeks now, is this what happens when you get most of your life back? I am now back at work full time which for me says it all really, I have not noticed any new symptons and my fatigue has completely gone. My hands and legs work without any problems and even though I have not regained all the feeling in my ring and little finger on my left hand I have complete use of my hand.
The double vision is still an issue if I am hot or have done lots of exercise but (and this is the best part) it goes away by itself within half an hour of inactivity.
CCSVI - has it worked for me? So far so good, I know that I am only approaching the 3 month mark, yet just having 3 months of not even thinking about MS was worth the treatment... I just hope that I remain stable xx

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Post by BooBear » 8 years ago

Lila, thank you for posting your incredible results and progress!

God bless you, and I hope to join the Liberated ranks soon!
Three veins angioplastied.  One renewed life.  

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Post by mmcc » 8 years ago

Hooray - it is great to hear about your success!

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Post by sofia » 8 years ago

Happy for you :-)
There is no doubt in my mind that liberation works. I've experienced it. Just like you :-)
But had a couple of days now, where symptoms are coming back, and not clearing after rest. But now I know that it works, and if they can get the lasting results with the operation, more stents or more angio I know that it will be good again. And its good to know that the down will not last longer then the next procedure, that its not going to be like this for rest of my life.
Enjoy your new/old life :-)
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>

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Post by Asher » 8 years ago

lilaclomax, boy am I happy for you. Now, every day must feel like a celebration of life. I'm off to Poland on June 26th. Your story gives me, and all of us I guess, something to look forward to. Thank you.

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Post by Zeureka » 8 years ago

Lilaclomax that's wonderful news! Thanks for posting! And keep us updated on the next 3 months :D

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Post by colapesce » 8 years ago

hi Lilaclomax,

this is brilliant news! many thanks for the update


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Post by Badger » 8 years ago

That is great news and I hope you continue feeling good.

I was in Katowice 23/24th March, so just after you. I have had improvements but I still get fatigue while walking. Hopefully that will be gone soon.

I am also not on any medication apart from Aspirin and Arreplex that they prescribed in Poland.

A;; the best on your continued improvemets. :D
RRMS 2004</em>
Appt Katowice 23/24th March

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Post by skincoll » 8 years ago

Very happy for you, and thank you so much for some much needed good news!

I'm going to Katowice on Monday and was starting to crap myself after hearing all these doom and gloom posts!

Wishing you all the best for the future.

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