My wife's turn next week in Poland - am I dreaming or not?

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

Postby Ernst » Fri Jun 18, 2010 11:56 am

JoyIsMyStrength wrote:Bless you Ernst, it's been a long road hasn't it? I'll be in Katowice when you're there, sending warm thoughts to you and your wife.

Pam


Yes Pam, it has been lond and winding road. I'll send back good vibs for you, let the procedure be succesfull. Im sure we are gonna see some miracles..
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Johnson » Fri Jun 18, 2010 3:41 pm

Ernst, I would say good luck, but you really won't need it. I am back for just a week, and it was a wonderful experience. There is nothing to be concerned with other than enjoying it.

Check out Pizzeria Da Grasso on ul. Stanisława 9 if you are looking for decent espresso. It is a short walk from the Qubus. Ask for Kasha, who is a wonderful host. Please tell her that Johnson sent you, and that I miss her.

The weather in Katowice last week was sunny and hot - 30 degrees Celsius. Very beautiful.

Happy trails, and good healing.
My name is not really Johnson. MSed up since 1993
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Postby annie66 » Fri Jun 18, 2010 4:58 pm

Hello,

I was in Poland (Dr. Simka) near the end of May with my bf. He was like your wife, mild symptoms, and never took medications either. He has MS for 23 years now..but you'd never know it to look at him.

he SWORE to me, he did not have any blockages because he felt well most of the time, stress aggravated symptoms more than anything...

Well, he had compromised veins in both sides of his neck, but the blood was still flowing through.

After the procedure, only 3 weeks now....we are seeing improvements....

Hopefully your wife is like my bf, because opening the veins made such a big difference for him.
have a great time in Poland, and if you feel up to it, have a vodka......we stayed at the Angelo Hotel...and were introduced to zrambooska(spelling) with apple juice and cucumber slices....very very yummy.....try one !!!

have a safe and happy trip
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Postby Ernst » Sun Jun 27, 2010 11:13 am

Finally my wife got CCSVI dx in Ameds, Warsaw. We were worried if she has stenosis or flow problems, cause her symptoms are quite minor. But there it was -- reflux and turbulance in left jugular.. which was ballooned day after examination. Yesterday we were resting and took it easy, cause Marja had quite little swelling near wound. Today (2.nd day after) we have been shopping in Warsaw.. she has been on shops now about 8 hours - I had to come to hotel to rest :)
Marja's one problem have been chronic tension in neck, and now it seems to be gone -- hopefully it stays gone. I'll raport more after longer time.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby cheerleader » Sun Jun 27, 2010 11:26 am

Ernst wrote:Finally my wife got CCSVI dx in Ameds, Warsaw. We were worried if she has stenosis or flow problems, cause her symptoms are quite minor. But there it was -- reflux and turbulance in left jugular.. which was ballooned day after examination. Yesterday we were resting and took it easy, cause Marja had quite little swelling near wound. Today (2.nd day after) we have been shopping in Warsaw.. she has been on shops now about 8 hours - I had to come to hotel to rest :)
Marja's one problem have been chronic tension in neck, and now it seems to be gone -- hopefully it stays gone. I'll raport more after longer time.


So happy to hear from you, Ernst!! I am glad that Marja's MS is mild, and her reflux was easy to deal with. Keep her on that wonderful diet and lifestyle and she should remain healthy and active-God willing.
best wishes-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ErikaSlovakia » Sun Jun 27, 2010 12:30 pm

Ernst and Marja!
Congratulation :D :D :D
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby sumsum » Mon Jun 28, 2010 3:37 am

Hi Ernst,

May I ask you what kind of symptomes your wife had (apart from the pressure in her neck) and what kind of stenosis was found? Did she have clearly defined relapses?

The reason why I am asking: So far, I have a very mild form of MS as well and in Frankfurt where I got my veins checked, they found a rather mild occlusion of 30% in the left jugular, however resulting in quite some flow abnormality in comparison to my right jugular.

Since I do not have real symptomes so far (my first and only relapse so far was some tingeling in the left side of my body), I decided to wait a little bit with the procedure - but of course, if the CCSVI theory is to be believed - waiting is of course a risk...

Wishing you and your wife all the best,

sumsum
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Postby Ernst » Tue Jun 29, 2010 1:55 am

sumsum wrote:Hi Ernst,

May I ask you what kind of symptomes your wife had (apart from the pressure in her neck) and what kind of stenosis was found? Did she have clearly defined relapses?


Hello hello sumsum,

My wife had some symptoms, which I would say mild. But now when I saw neurological examination in Ameds, I understood that there are symptoms, which I haven't known in our daily life. We were worried about finding CCSVI (cause her mild symptoms), but there it was - reflux in her left jug, beautiful. But back to her symptoms:
- chronic neck pain, quite nasty last two yrs
- stiffnes / weaknes / sense in right side body (especially leg)
- minor balance problem
- muscles get fatigued easier than before dx (for example training / work out)
- a bit not feeling energetic

She finally got her liberation on 25.june and so far effects have been too good to be true:
- next morning she noticed that neck pain was gone
- she red a book and noticed that she didn't have to change to postion of hands like before
- more ENERGY: she went shopping two days after procedure and she was there about 8-9 hours, after that she came back to hotel and started to arrange her things/shoppings, not feeling tired (she is normally very tired in evenings)
- in neurological examination:
--> the balance between body sides was now good, the strengh similar and sense quite the same
--> and now big thing: the MS related babinski reflex was gone!! that reflex was there just few days earlier, before the procedure, and now it was gone. I filmed both examinations, and lucky I did. I think that even the neuro was surprised (she was wonderluf neuro, and interested of CCSVI, and wonderful person).

So far, so good. Right now my wife (Marja) is flying home to Finland and Im still in Warsaw with one MS-patient from my town. But tomorrow I'll follow her to Finland, to home - missing the kids alot. But our Warsaw trip has been absolutely wonderful, like a dream. Now I really understand that this procedure should be done to everybody with MS and in early stage -- to cut the disease process.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Ernst » Wed Jun 30, 2010 9:37 am

Now happily at home :D About procedure I have one question in mind.. how common is pain near procedure area? My wife says that she feels pain when turning head of using muscles that are near inflated place. And.. if that pain is "normal", how long does it take to heal?
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Rokkit » Wed Jun 30, 2010 9:47 am

Ernst, this before and after video you have of the change in babinski reflex is priceless! It doesn't get any more objective than that. If your wife's ok with it maybe you can edit up a short youtube video? Anectdotal? Yes. Placebo? No. Way to go Ernst. I'm so happy for your wife and for you.
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Postby tzootsi » Wed Jun 30, 2010 1:52 pm

Ernst,
Having some residual pain in the neck where the ballooning took place is to be expected. My wife had some pain in that area for at least 3-4 weeks - nothing major however.

Very happy to hear of your wife's improvements!
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Postby Ernst » Wed Jun 30, 2010 2:36 pm

Rokkit wrote:Ernst, this before and after video you have of the change in babinski reflex is priceless! It doesn't get any more objective than that. If your wife's ok with it maybe you can edit up a short youtube video? Anectdotal? Yes. Placebo? No. Way to go Ernst. I'm so happy for your wife and for you.


I made short clip about neuro's examination in Poland (sorry, im not skillful with editing :oops: ), but hopefully you'll get the picture. Now we are eagerly following condition and possible more improvements (although we had already major benefits, her neck pain..). Our Poland trip was quite, like a dream - wonderful and very kind people :D

Video, about Babinski reflex before and after procedure:

http://www.youtube.com/watch?v=dh3PZTZpSKY
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Rokkit » Wed Jun 30, 2010 2:48 pm

Ernst wrote:I made short clip about neuro's examination in Poland (sorry, im not skillful with editing :oops: ), but hopefully you'll get the picture.

That is so cool!
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Postby L » Wed Jun 30, 2010 5:15 pm

Well done you two!

I only just saw this thread, I'll put the video link in the youtube before/after thread..
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Postby CRHInv » Wed Jun 30, 2010 5:32 pm

Ernst, I am so happy for you both. Keep us posted how you guys are doing.
Take good care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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