Going to Katowice, Poland from June 23-30

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

Going to Katowice, Poland from June 23-30

Postby JoyIsMyStrength » Fri Jun 11, 2010 8:06 pm

Hello TIMS peeps,

It looks like I'm finally on my way to liberation after doing what I could here locally. I just got my first MRI since 2004, which showed 16 brain lesions including one in the brainstem, plus 2 large upper c-spine lesions and one a bit further down in the c-spine. I was also able to get an MRV done according to protocol, should have been brain, neck and chest but somehow only wound up with neck scans. Insurance refused to pay but I got it done anyway. The report says in part:

Congenitally hypoplastic left transverse sinus, and jugular bulb. The already small left internal jugular vein, however, also appears to have a relatively significant degree of stenosis just below the skull base.


Interesting that they used the word "congenitally." Hypoplastic means underdeveloped.

The scans are fascinating (to me anyway), a right jugular that is described in the report as "robust" and a left internal jugular that is "extremely small at the level of the scalene muscles. As seen on (one of the) acquisition images, it is no more than a millimeter in diameter." You can see how the left looks like a mess of spaghetti compared to the right (yes the image appears reversed). I can't figure out what's what in that tangle:

Image

The important thing is, I fit the pattern and there is stenosis, although I'm curious about the azygos since I have spinal cord involvement.

I got the MRV on June 1st. The next day I received an email from Euromedic in Katowice, Poland (Dr. Simka), from whom I had long given up hope ever hearing anything since emailing late last Dec. with no reply. They asked if I could come on June 25th for treatment due to an unexpected opening. We didn't waste much time debating. We checked with my neuro, who says he can't fully recommend it since he has not visited the facilities, but he has heard good things and wishes me the best. Plus he wants to evaluate me when I return. My PCP is also intrigued. So we raided our meager retirement acct despite the stiff penalties and off we go. Our plane leaves the 23rd and we arrive on the 24th, returning on the 30th.

It is really an urgent matter for me. Even typing this, my left hand has completely frozen up several times so I have to keep stopping and starting. I can just barely manage to walk very slowly with a rollator and it is laborious with foot drop in both feet. I don't have the arm strength to propel myself in a manual wheelchair so next step would be a power chair I guess. Needless to say I can't drive. My smile still works, though, and I have done nothing but exercise those smile muscles these past few days. I am thrilled and thank God for this open door.

I will keep everyone posted and look forward to meeting whoever will be there!

Thanks to the pioneers who have paved the way. You are my heroes.

Pam
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Postby Katie41 » Fri Jun 11, 2010 8:16 pm

Pam,
I'm so happy for you! Great job getting the appointment at just the right time! Best wishes for a wonderful outcome for you :D
Katie41
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Postby Vhoenecke » Fri Jun 11, 2010 8:32 pm

Great new, I was there April 28th. Had a blast and feel like a million bucks.

Val
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Postby JoyIsMyStrength » Sat Jun 12, 2010 7:29 am

Thanks everybodeeee!
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Postby Habenoughyet » Sat Jun 12, 2010 4:40 pm

JoyIsMyStrength wrote:Thanks everybodeeee!

I will be there from the 20th to the 26th... Can't wait to meet you at the Qubus!!!

Viva la revolucion!!

HEY :lol:
"Never argue with stupid people... They bring you down to they're level and beat you with experience"
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Postby JoyIsMyStrength » Sat Jun 12, 2010 4:43 pm

Bring that machine gun with you, so I'll recognize you! Here's to making our mark in Poland. How on earth do people SLEEP with such a trip scheduled? Even Ambien is no match for my swirling thoughts. :)
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Postby Jason » Sun Jun 13, 2010 5:54 am

My plane leaves on the 26th and my procedure is on the 30th.
See you all there, can't wait to come home and show my neuro as I see him two weeks after my procedure.
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Postby babiezuique » Sun Jun 13, 2010 8:27 am

I every body, I'm leaving montreal next Saterday, i will be in the qubus, from the 20 th of june untill the 25 !

My name is Barbara, i will be there with my mother ant my siter...;)

It will be a pleasure to meet you there!
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Postby colmmc » Sun Jun 13, 2010 9:19 am

I will be there 22nd to the 27th really looking forward to it,Witch is odd because I don't usually like even giving blood.A bit squeamish, but this doesn't seem to hold any fears for me. Long may it continue.
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Postby mtf » Sun Jun 13, 2010 11:18 am

good luck for all of you!!!
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Postby skincoll » Mon Jun 14, 2010 5:06 am

colmmc wrote:I will be there 22nd to the 27th really looking forward to it,Witch is odd because I don't usually like even giving blood.A bit squeamish, but this doesn't seem to hold any fears for me. Long may it continue.


Ooh, there IS lots of needleage involved! But you'll be fine - you'll get over your fear of injections, that's for sure. I thought I was squeamish too, but I've been happily injecting myself with the 7 days of Heparin shots you get after the procedure.

I loved the whole experience and miss the people who I shared it with!

All the best to all of you!
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Postby JoyIsMyStrength » Mon Jun 14, 2010 5:54 am

Skincoll, I shall ignore your "lots of needleage" comment so that perhaps I can get some much-needed sleep! And somebody please go revive colmmc, who is passed out on the floor! :wink:

I'm looking forward to meeting up with:

Habehnoughyet
Jason
Barbara (on the 24th or 25th I hope)
colmmc
jozee
Sandi and husband Pinda
facetspera (Diana, Sydney and Diana's sister)


Anyone else joining the party?
Last edited by JoyIsMyStrength on Tue Jun 15, 2010 8:28 pm, edited 3 times in total.
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Postby colmmc » Mon Jun 14, 2010 6:59 am

No I'm all right now Just fainted for a minute , You were only kidding about the needles...Right...?
Colmmc ( The soon to be Pin cushion)
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Postby jozee » Mon Jun 14, 2010 3:19 pm

Hi everybody,

I'm coming too. Arrive on the 21st with my hubby. Look forward to meeting everyone.

Jozee
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Postby Billmeik » Mon Jun 14, 2010 8:42 pm

Im in poland right now. I wish I had brought a small fan to cool this hot room, and a better pillow than this huge euro box.Also it would have been handy on the first day to have some docs proving my ms (like old mri's etc.) and records that lyme disease has been ruled out. (about 5% of people here are positive for lyme)
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