Alby in Poland 'liberation'

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

Alby in Poland 'liberation'

Postby alby » Mon Feb 22, 2010 2:33 am

THIS IS MY LIBERATION INFORMATION.


***THE WEAKNESSES***

Before procedure:

1. legs, arm, fingers, back, abdominal muscle weakness.
2. severe foot drop
3. balance loss
4. sensation loss (numbness) all over in various degrees.
5. fatigue.
6. brain fog.
7. edema.
8. spasticity of legs
9. spasm of legs
10. stiffness of legs
11. shortness of breath (sometimes)
12. heat intolerance
13. depression (side effect of MS)

left side worse than right.

Condition (self assessed): EDSS 7 - FS 6.5 - MSIS 116 out of 145


***THE RESULTS***

After the procedure of Feb. 11, 2010:

improvements are selective, random, and in various degrees.
The following are my results to 9 days after the procedure by date:

Feb 11, 2010 – liberation procedure: left and right jugulars ballooning. Azygos with one stent (size 3mm x 34mm).

Feb 11 to Feb. 15, 2010: no improvement.

Feb 16, 2010:

A – some leg muscles stronger (5%), can get off and on wheelchair without help.
B – brain fog less (5%).

Feb 19, 2010 (9 days after):

A – more arm muscle strength (5%)
B – better fingers control (10%)
C – better abdominal muscle strength (20%)
D – better back muscle strength (15%)
E - less fatigue, more alert (5%)
F – less depression, more confidence (50%)

WHAT TO WATCHOUT FOR?
I have to take Aspirin for life, blood thinner for two month minimum, was recommended to extend to one year.

Have to be extra cautious to not get injured because of less coagulation.

Have to monitor blood PT/INR level.

WHAT NOW:

Have to start exercise, gradually and build up muscle mass and strength.

Improve diet

IMPORTANT WARNING NOTES

MRV CD that is given is good and in English, although with no written documents for details, so for untrained eyes it’s difficult to figure out what is what. Blocked or narrowed areas are not highlighted.

CCSVI Liberation procedure CD was in Polish, aside from that no explanation was given, so it’s hard to know what’’s what again. I couldn’t see where the stents were.

As critical as the stents were, locations were not identified, at least I couldn’t see. It’s important to know where they are for possible dismounting and moving.

I will post any further information and improvements.
Last edited by alby on Sat Feb 27, 2010 11:36 am, edited 1 time in total.
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Postby costumenastional » Mon Feb 22, 2010 2:52 am

Thank you very much for all the info and i wish all my best for you.

I recommend that you take this to the thread that is made for tracking patients after liberation, otherwise your improvements will be hard not to miss in here ;)
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Postby TFau » Mon Feb 22, 2010 7:08 am

Congratulations and thanks for sharing. I hope for your continued recovery.

Can you please tell us what kind of MS you were diagnosed with and when? Thanks!
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Postby TFau » Mon Feb 22, 2010 7:10 am

TFau wrote:Congratulations and thanks for sharing. I hope for your continued recovery.

Can you please tell us what kind of MS you were diagnosed with and when? Thanks!


Sorry, just saw your entry in the tracking thread. Thanks and congratulations again!
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UPDATE

Postby alby » Mon Mar 22, 2010 3:08 pm

(update March 2, 2010)

Since yesterday, I can stand for 30 seconds, being able to look around and move my arms around, without losing my balance. I only tried 30 seconds, I might be able to stand more.

(update March 22, 2010)

I now can stand without support for one to two minutes depending on the day and the level of my stiffness. I can do more exercise. fingers are stronger and grip better I am more alert, brain fog is 90% gone. Prior to the procedure I used to lie down after shower to rest for half n hour to an hour, now I don’t.

I was diagnosed in 1990 with RRMS. It got considerably worse from 2003 until this year.

I added my update here as well as tracking. The reason I added it here is because people don’t necessarily review every post in the traking.
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Postby Johnson » Mon Mar 22, 2010 3:30 pm

Thanks for the update, Alby.

I am about 3 years behind you (RRMS 1993), but am still walking. That is getting harder though (my wife thinks I need a cane). Mostly, I fall over a lot, and I am weak. My biggest complaint is what is happening to my mind, and The Fatigue. Your report is very encouraging, as your EDSS was significantly higher than my self-assessed 1.5 - 2. If I could apply that scale to my mental function, it would be about 6-7. I did not used to be too upset with the prospect of more physical problems, because I would still have my mind. Cruel joke on me. (read - sardonic laugh)

Keep healing!
My name is not really Johnson. MSed up since 1993
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Postby prairiegirl » Mon Mar 22, 2010 4:07 pm

Great-- hope you see continued improvement, Alby!
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Postby alby » Mon Mar 22, 2010 4:39 pm

Johnson, if I were you, I'd do something about it. if I didn't have the amount of stress during the last seven years, I would still be fine, but I am where I am, and I am grateful for any progress.
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Re: UPDATE

Postby Cece » Mon Mar 22, 2010 5:41 pm

alby wrote:I now can stand without support for one to two minutes depending on the day and the level of my stiffness. I can do more exercise. fingers are stronger and grip better I am more alert, brain fog is 90% gone. Prior to the procedure I used to lie down after shower to rest for half n hour to an hour, now I don’t.


This is fantastic...I am so hopeful for long-term improvements for everyone with the higher EDSSs, it's one of the mysteries with this being so new, and it looks like you are getting improvements!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby ozarkcanoer » Mon Mar 22, 2010 5:57 pm

alby... Thanks for posting your progress. It is informative and interesting and hopeful. I like that your brain fog is better ! That's what I need. Keep up the good work.

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Postby eric593 » Wed Mar 24, 2010 1:38 am

Thanks for sharing, Alby. I hope you continue to see improvements!

Please continue to let us know how it goes. Thanks also for your info on the difficulties with language problems and no specifics given on scans, etc. That is something you might suggest that they remedy so that other doctors are aided in locating what was found and remedied in our veins.
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Postby alby » Wed Mar 24, 2010 9:52 am

eric, I already have. I sent two emails weeks ago, asking for the location of stent and did not receive anything back other than it's in the azygos by dr. ludyka, something that i was told in poland.
so i suggest to anyone who goes there or any other place outside north america, to make sure to know the specific location of the stent.
i guess they don't take these matters as seriously as we do.
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Postby Donnchadh » Wed Mar 24, 2010 12:06 pm

Congratulations on your liberation! I wish you a speedy and complete recovery.

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Re: UPDATE

Postby Richardk » Mon Mar 29, 2010 3:24 pm

alby wrote:(update March 2, 2010)

Since yesterday, I can stand for 30 seconds, being able to look around and move my arms around, without losing my balance. I only tried 30 seconds, I might be able to stand more.

(update March 22, 2010)

I now can stand without support for one to two minutes depending on the day and the level of my stiffness. I can do more exercise. fingers are stronger and grip better I am more alert, brain fog is 90% gone. Prior to the procedure I used to lie down after shower to rest for half n hour to an hour, now I don’t.

I was diagnosed in 1990 with RRMS. It got considerably worse from 2003 until this year.

I added my update here as well as tracking. The reason I added it here is because people don’t necessarily review every post in the traking.


Hi Alby

Super to hear that you are having positive improvements, and I hope they will continue ... I also can exercise my legs much more, however the fatigue is still a major issue.

Richard
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Postby alby » Mon Mar 29, 2010 4:57 pm

thanks Richard. hope you get better too. I am lucky, my fatigue is much better.
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