annbbe - second day after procedure

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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sunlounger
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Post by sunlounger » Mon Apr 05, 2010 4:01 am

Hi Anna,

thanks I'm looking forward to it.
hopefully 3rd time lucky :D

can you tell us more about the rehabilitation hospital ?
i am trying to find somewhere like this in U.K.

do you notice if the tysabri is helping ?

good luck on the 22nd

best wishes
You might find that you’re not lost

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Pepe
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Post by Pepe » Mon Apr 05, 2010 7:51 am

Hi Anna,

Thank you for your update!
We are very happy for your improvements!
All the best to you next April 22th!

Take care and please keep us informed!
Maria is doing well. We will travel to Katowice in summer to do the ordinary control.

A big huge from Maria and Pepe.
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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annbbe
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Post by annbbe » Thu Apr 08, 2010 6:37 am

Hi everybody!
I had my 14 Tysabri inf. yesterday. I am not sure if I still need it, but my doctor said I should stay on Tysabri at least for 2 years - so: 10 infusions to take.
I feel better. I don't have this dropping foot anymore. My balance is better but still not ideal. My left hand is a bit stronger, but still is weak. If I am not tired and stressed I walk NORMALLY. I still can't run (or maybe I am afraid of running), but things are going in a good direction:).

My rehab hospital it is normal polish hospital. I got a referral and I spent 3 weeks exercising. It was good time for me, but my doctor didn't see any change in EDSS. I came with 3,5, I finished my stay with 3,5.
Polish, 33yrs, dx 2000 RRMS, 2013 RSPMS EDSS 6.

liberated in february the 2nd 2010:). Currently just on LDN.

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Pepe
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Post by Pepe » Fri Apr 09, 2010 7:41 am

annbbe wrote: I feel better. I don't have this dropping foot anymore. My balance is better but still not ideal. My left hand is a bit stronger, but still is weak. If I am not tired and stressed I walk NORMALLY.
:D :D :D Congratulation :D :D :D
Pepe.
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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annbbe
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Post by annbbe » Fri Apr 23, 2010 8:08 am

Hi everybody!
I was in Katowice today morning- I visited Euromedic to check my left neck vein 3 month after procedure. Everything is ok- the vein is still wide enough:).

Next checktime in three months.

:)
Polish, 33yrs, dx 2000 RRMS, 2013 RSPMS EDSS 6.

liberated in february the 2nd 2010:). Currently just on LDN.

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Pepe
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Post by Pepe » Mon Apr 26, 2010 1:20 am

annbbe wrote: Everything is ok- the vein is still wide enough:)
Hi Anna,

Great!

Are you improving? Do you feel better?

All the best,

Pepe.
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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sunlounger
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Post by sunlounger » Mon Apr 26, 2010 1:46 pm

Hi Anna,

thats great news :D

please keep us posted
You might find that you’re not lost

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Johnson
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Post by Johnson » Mon Apr 26, 2010 1:57 pm

annbbe wrote:Hi everybody!
I was in Katowice today morning- I visited Euromedic to check my left neck vein 3 month after procedure. Everything is ok- the vein is still wide enough:).

Next checktime in three months.

:)
I thought that I was going crazy when I saw your "second day after procedure" because I thought you had it months ago. I'm glad your check up was positive!
My name is not really Johnson. MSed up since 1993

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annbbe
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7mnths after liberation!

Post by annbbe » Wed Aug 25, 2010 11:03 am

Hi Guys!
Almost 7 months after procedure! My balance is much better. If I have to, I am able go go up/downstairs without handrail or wall for help. Or even with something in both hands. My left arm/hand is much stronger. I am able to keep going with a plate of pizza in the left hand. However, I am still afraid of carrying a cup full of drink in it. My left leg is stronger as well. I feel like if everything went sloooowly better and better:). Just not my english, sorry;)
Polish, 33yrs, dx 2000 RRMS, 2013 RSPMS EDSS 6.

liberated in february the 2nd 2010:). Currently just on LDN.

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msgator
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Post by msgator » Wed Aug 25, 2010 4:58 pm

thanks for the update. Keep healing.

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.

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blossom
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veins

Post by blossom » Wed Aug 25, 2010 8:45 pm

so glad to hear of continued improvements.

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Pepe
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Post by Pepe » Fri Aug 27, 2010 3:51 am

Hi Anna,

Thank you very much for your update!!!

Great!!! Congratulation!!!

We have been in Katowice on July and everything was OK. María is doing well too.

All the best to you!!!
Pepe.
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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annbbe
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Post by annbbe » Sat Sep 04, 2010 2:04 am

Hi!
Yesterday I tried to run and...I did it! I haven't run for ages! I wasn't able to do so.

It wasn't beutiful run, but I was able to move my legs normally. :)
Polish, 33yrs, dx 2000 RRMS, 2013 RSPMS EDSS 6.

liberated in february the 2nd 2010:). Currently just on LDN.

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sunlounger
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Post by sunlounger » Sat Sep 04, 2010 3:07 am

Hi anna,

it's great to hear your doing so well,
really impressive your able to run again :D
hoping your continue to improve,

thanks for the update,

best wishes,

sunlounger
You might find that you’re not lost

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garyak
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Post by garyak » Sat Sep 04, 2010 10:35 am

annbbe, so inspiring and thanks for the periodic updates. Best of luck, gary

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