In Katowice, Poland now :D

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

In Katowice, Poland now :D

Postby lilaclomax » Tue Mar 16, 2010 2:56 am

Good morning,

After a few delays we arrived here in the early hours, off for the diagnostic procedure (and hopefully to bump into a couple of TIMS people) this evening. Fingers crossed I have something to report back with later :D
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Postby eric593 » Tue Mar 16, 2010 3:20 am

Wishing you the very best!
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Postby colapesce » Tue Mar 16, 2010 4:34 am

Best of luck. Am so excited for you!
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Postby Pepe » Tue Mar 16, 2010 8:12 am

All the best to you!
Good luck!
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby sunlounger » Tue Mar 16, 2010 9:26 am

fingers crossed for you :D
please keep us posted
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Postby ozarkcanoer » Tue Mar 16, 2010 9:28 am

lilac... I am hoping and wishing for the very best for you !!

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Postby mags4short » Tue Mar 16, 2010 11:35 am

Good luck, keep us posted :) Mags xx
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Postby Brynn » Tue Mar 16, 2010 8:46 pm

Lilaclomax, I wish you the very best tomorrow! It will all go smoothly! :D :D Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby lilaclomax » Thu Mar 18, 2010 9:04 am

Thank you for all your messages of support, I have a few people who visit TIMS over the last couple of days and the atmosphere is so positive and people very supportive.
The scans, eye test are all organised well and the actual procedure over surprising quickly and without any major worries.
I will update more on my return home but for now all is good :D

Here is my history...

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.

Will update next week on my return to the UK - to date definate warmth in feet and legs.
Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:
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Postby tipsyturtle » Thu Mar 18, 2010 11:26 am

congratulations! Hope you continue to post good news.
jo :D
Katowice, April 7/8
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Postby ComfortablyNumb » Thu Mar 18, 2010 12:13 pm


Congratulations on finally getting there. :D :D
Best wishes and keep us all informed of your progress.

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Postby ClaireParry » Thu Mar 18, 2010 1:10 pm

Hooray Lilac,

Hope all is well and look forward to yoiur updates

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Postby pgm1 » Thu Mar 18, 2010 3:56 pm

Hi Lilaclomax,

Sounds like it all went well,i wish you continued success

Pam :)
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Postby Vhoenecke » Thu Mar 18, 2010 8:15 pm

So glad to hear things went well. Hugs from Canada.
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Postby hope410 » Thu Mar 18, 2010 11:43 pm

Wonderful! So glad you are on the "other side" now and I look forward to hearing how you do!
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