Zeureka and others in Katowice 26 May

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

Postby L » Wed Jul 14, 2010 2:18 pm

Zeureka wrote: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!)


Pretty good going! 1/3rd of the way to EDSS 0! Congratulations!
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Postby Nick » Wed Jul 21, 2010 11:41 am

Hey Z

I am glad to read about your continued success. I've been rather busy since our adventure in Poland so I often just read rather than post. Yesterday I had on the T-shirt you so graciously provided to the team and my son asked about the balloon depiction on it. Of course I had to drone on about this unique woman from Italy who endowed me with it and I promised myself I would drop you a note and say hello.

If you or any of others in our group recall the murmurings about the one individual who had remarkable results from the procedure and was in the group before us, his name is Christopher Alkenbrack. He is from eastern Canada (Wolfville, NS) and CTV filmed his visit and produced a news feature on him. I'm sure it was posted on this forum at the time it came out but I thought I'd bring it to you and the others' attention with the mention of him being the one we were speculating about.

As with many on this board, our group also speculated on the possible causes of CCSVI and the concerns of restenosis. Thus I wanted to share with you and the others (especially those who are from Calgary) an interesting hypothesis proposed by a dentist from Okotoks (a small town south of Calgary). His name is David Williams and his dentistry site can be found here. For the past decade has postulated that an improper dental bite is intrinsic to MS and with the recent revelation of CCSVI he feels the lifetime of pressure created from an improperly aligned bite and the associated clenching, causes or worsens the soft tissue deformation recogized as venous insufficiency.

He can easily assess one's bite and he will grind one's teeth to create a proper alignment. In the cases of a significantly malformed bite (lucky me) he will create a splint, guard or dental apparatus for wearing while sleeping. Fortunately all of his charges were covered by my employer's dental insurance. This theory might be of interest to you because I noticed you had an over-bite too (I have an over-bite and a cross-bite). Note that his website does not have any specific information mentioning this theory of his but he has recently authored a paper on the topic and it is in press. I am quite certain Direct-MSwill have it posted on our site as soon as we are able to.

Keep up the faith sister
Nick

PS Michelle passes on her regards to our Katowice group
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Postby Interrupted » Thu Jul 22, 2010 6:08 am

Thank you for all the updates. Following it all, and hoping every day sees you better and better xoxo
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Postby Zeureka » Thu Jul 22, 2010 6:09 am

Hi Nick! What a nice surprise! A really lovely week! Just yesterday - what a coincidence - also received wishes from my room-mate friend from Katowice - and then got also in touch with other (girl)friend of our team !

Good news that both had suttle improvements - just as me, with slight differences obviously. N. has for example less numbness in feet which I did not. But in particular we all had improvements on energy, fatigue and restored bladder function :D

The news about Christopher, did not know yet (thanks for the link), but lately I'm out a lot since on hols - and miss a bit the time to follow everything on the internet on CCSVI and TIMS...

As regards the info of malformated bite, thanks, that sounds interesting. In particular since the dentist remarked it for both of my kids a month ago and they will now get it followed-up when they both will get a brace.

And, Nick, how do you feel (only if you want to post that...) ?
I still want to send you some pics of that wonderful time of dinners in the Italian Restaurant in Katowice, the MS T-shirt/hat day of our team in hospital and also the unforgettable last day in sunny Krakow! Steve found it very funny that we had the same sight-seeing driver...

By the way: the Italian association loved the picture of Simka with the CCSVI hat and T-shirt which ended up on their FB site! Think a bit of propaganda for Euromedic cannot harm...just as Bulgaria on YouTube these last days...
But things hopefully also start to move in Italy now...at least that is what they said today: >>The atomic bomb has exploded<<, haha - hope it's more positive though than an atomic bomb.

A biiig hug and my best wishes also to Michelle!!

Steffi
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Postby Nick » Mon Jul 26, 2010 11:44 am

Hello Steffi

I feel quite well, not much different than the days soon after my procedure. Although I haven’t experienced any life altering improvements as a result of being liberated, it is satisfying to:
• have a marked improvement in my circulation
• reduced sensitivity to heat
• more energy

Even though these improvements are noticeable, they pale in comparison to what I was able to achieve with diet revision some 13 years past. This result is consistent with Lelo who wrote herethat while liberation afforded her some improvement it was not as great as the boost provided from diet revision. I muse at the thought that Lelo and I have already “used up” our allotted improvements by going the diet route and left little for any CCSVI oriented improvements.

Since it has been only two months since my time in Poland I am still hopeful that further recovery will occur over time with increased oxygen to my CNS tissue. I am also about to embark on neuromuscular electrical stimulation in the hopes of replicating the outstanding recovery attained by Terry Wahls as presented here.

I will send you a private message via this forum and we can swap email addy’s for a picture exchange.

Cheers
Nick
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Postby Zeureka » Sun Oct 03, 2010 5:44 am

4 months after my procedure: still feeling awake and no restenosis!

I have been to Dr Beelen in Belgium this week for a doppler-check and had no restenosis. My blood flow in both jugulars perfect. Dr Beelen could see via the doppler-exam where the ballooning had been applied - there was also a piece of valve still visible in my left jugular, but the rest of the valve still nicely squeezed to the wall.

Beelen told me that the decision not to place a stent in my case had been a good one, as the place first of all where the pathologic valve was located (in junction with the brachiocephalic vein) might have been problematic, and also, since did not have restenosis in 4 months the applied ballooning pressure seems to have resolved the issue - so stent in my case was not necessary. Basically, inbetween the lines. he confirmed that Dr Simka's team in Katowice had done a good job - he obviously did not say that (as to judge other doctors not a thing to do) but understood he meant it.

He told me that the chances for restenosis now after already 4 months that have passed by are very small (if understood well, he said 0.1%)...and he would think it would only be necessary for me to come back for another doppler-check in case of a relapse. Otherwise I should be fine! Lets hope so!
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