Zeureka and others in Katowice 26 May

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

Postby coin » Sun Jun 13, 2010 6:39 am

excellent...hang in there....
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Postby L » Mon Jun 14, 2010 2:18 am

Zeureka wrote:My headaches much better, nearly gone... - it's going upwards! :D


Glad to hear it!
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Postby Zeureka » Mon Jun 14, 2010 5:40 am

L wrote:
Zeureka wrote:My headaches much better, nearly gone... - it's going upwards! :D


Glad to hear it!
No headaches all day - feel like another person!
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Postby L » Mon Jun 14, 2010 5:54 am

Zeureka wrote:
L wrote:
Zeureka wrote:My headaches much better, nearly gone... - it's going upwards! :D


Glad to hear it!
No headaches all day - feel like another person!


Wow, great. And how are your other symptoms?
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Postby Zeureka » Mon Jun 14, 2010 8:02 am

My head clearer/lighter and feel more alert - have been working this morning and have had no fatique or brain fog so far. No instability(=body balance)/dizziness spells. Always felt so tired in afternoons after work before with this cloudy with cotton enwrapped brain and not really feeling present and body often out of balance. And it is astonishing I feel so good since we have humid hot weather!

My bladder function now fully normal (already since procedure).

As regards my hands/feet:

• My hands still a bit feeling of stiffness, but the pins&needles at a lower level now. I need to say that lately however did not have problems typing or using my hands either (only in a relapse 5 years ago could not write).

• And my a bit stiff-feeling feet rather unchanged, except that perceive heavy blocks feeling maybe a bit lighter:
- still have some toes that are numb and other parts/of side and underneath feet also still some numbness (in particular stronger in right foot, as was always the case). But I can as always walk, run (although did not test my indurance since longer...) and drive the car. But avoid highway.
- still pins&needles
- yesterday evening when went to bed had a bit of light cramps in feet (had that rarely before - and saw it as maybe a good sign, lets take it positive as the headaches...)...but now stimulate my feet by rolling them on tennis balls and that then brings some relief.

In addition I try to do biogym with a soft ball placed in several different places under my back/shoulders/head every evening to stretch the spinal cord and cervical area of my neck. And last Friday started to treat myself with 1 hour massage and biogym class, which will now do every week. All this together will certainly help to improve my hand/feet issue further...at least I hope for the next months...

And as long as my head would stay light - also after travel and not properly inclined bed? (huh! still to test!) - and the rest stays stable, that would already be marvellous!
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Postby L » Mon Jun 14, 2010 12:10 pm

So glad to hear it. You must feel very happy!
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Postby Zeureka » Sun Jun 20, 2010 12:07 am

My headaches gone.

What a feeling these last three days, let it be placebo but don't think so...(because then those transient headaches were placebo as well???)

Really try to report honestly on how I feel - in good and bad terms. And there are still ups and downs. Faced still 1 day a bit of fatigue/instability start this week, just after the headaches fully disappeared.

But for the moment no doubt feel better than before. More energy, no fatigue/instability spells over the last 3 days - I'm awake! :D
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Postby L » Sun Jun 20, 2010 12:56 am

Zeureka wrote:My headaches gone.


Maybe they were a result of the placebo effect? : ) Placebo effect can't last forever..
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Postby Zeureka » Sat Jul 10, 2010 2:57 pm

More than 6 weeks now. Last two weeks:
=> No Headaches at all, seemed a transient period - for whatever reason - it's over :D
=> No longer fatigue/instability (balance) spells at all :) :) :)
=> Bladder perfect since intervention :D
=> Improved quality of sleep - it's not that I'm more tired, but if I lie down at whatever time of day or night can just fall asleep within minutes like a baby (was never able to do so during day before! So this amazed me recently! Before only resting) :D
=> Hands&feet symptoms had before would now simply say: unchanged (better on fresher days, worse on hotter days)

Admit I'm since 1 week on hols, but I hope will go on like this! Managed to book me a local doppler check for end Sept, just as follow-up to ensure (I only had angio, no stent).
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Postby dodgeviper » Sun Jul 11, 2010 10:44 am

Thanks for the continuing updates on your condition post-treatment, Zuereka.

And that is good news regarding the headaches post-treatment.

You are only six weeks out and the improvements were supposed to set in (if recall an account of Dr. Simka's statements to a patient) around the three month mark.

So your report in another six weeks will be very interesting and hopefully in the same improving trajectory.

Best continuing wishes.

Kevin/dodgeviper
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Postby Drury » Mon Jul 12, 2010 9:03 pm

Zeureka,

Thank you for your updates.

Wishing you continued improvements,

Drury
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Postby Katie41 » Mon Jul 12, 2010 11:05 pm

Great news! So happy for you :D
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Postby Zeureka » Mon Jul 12, 2010 11:40 pm

I just read my own thread and realised it's useful for myself to remember the intensity of some symptoms :D . I say hands&feet unchanged. But realise that the heavy blocks feeling in my feet is currently not as strong as often had it before. The numbness symptom is still there (that's why in principle report unchanged), but seems slightly different/lighter, at least in mornings when temperature fresher. I can walk and do gym as before.

But I'm still thinking that my hands/feet symptoms may have to do with my more extensive damage in spinal cord (either difficult to repair, but lets still hope could happen with time...or might be caused by some other stenosed lumbar veins...). I hope research/experience of docs for treatment of those other veins will move on soon....and also that IVUS hopefully to become a standard to get another more in-depth azygos check.
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Postby Sofabed » Tue Jul 13, 2010 3:35 am

Hi Zeureka! I'm very happy fot this news.. :D
maybe you can give a look here: http://www.thisisms.com/ftopict-8537.html

I have to ask you a favour: could you write your impressions also in Italian?
So that your experience can be read also in italian forums and in the italian FB fan page "ccsvi nella sclerosi multipla"? thanks.
un abbraccio
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Postby Zeureka » Wed Jul 14, 2010 2:08 pm

Thank you all for your encouraging words!

For anyone interested in a more structured track, I have today updated my tracking. In English to start with here (see page 3 of the TIMS tracking thread):
http://www.thisisms.com/ftopicp-87171.html#87171

In Italian will follow next days at the link you gave me (thanks a lot for the link!)
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