Going to Katowice, Poland from June 23-30

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
JoyIsMyStrength
Family Elder
Posts: 164
Joined: Fri Jan 01, 2010 3:00 pm
Location: US
Contact:

Going to Katowice, Poland from June 23-30

Post by JoyIsMyStrength »

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
User avatar
Katie41
Family Elder
Posts: 179
Joined: Sat Dec 05, 2009 3:00 pm
Location: Southern California
Contact:

Post by Katie41 »

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
User avatar
Vhoenecke
Family Elder
Posts: 332
Joined: Sat Dec 12, 2009 3:00 pm
Location: Rosetown, Canada
Contact:

Post by Vhoenecke »

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

Val
User avatar
JoyIsMyStrength
Family Elder
Posts: 164
Joined: Fri Jan 01, 2010 3:00 pm
Location: US
Contact:

Post by JoyIsMyStrength »

Thanks everybodeeee!
User avatar
Habenoughyet
Family Member
Posts: 74
Joined: Thu Nov 12, 2009 3:00 pm
Contact:

Post by Habenoughyet »

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"
User avatar
JoyIsMyStrength
Family Elder
Posts: 164
Joined: Fri Jan 01, 2010 3:00 pm
Location: US
Contact:

Post by JoyIsMyStrength »

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. :)
User avatar
Jason
Family Member
Posts: 30
Joined: Mon Nov 14, 2005 3:00 pm
Location: Sherwood Park, Canada
Contact:

Post by Jason »

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.
User avatar
babiezuique
Family Elder
Posts: 121
Joined: Mon Dec 07, 2009 3:00 pm
Location: Montreal

Post by babiezuique »

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!
User avatar
colmmc
Family Member
Posts: 73
Joined: Tue Dec 15, 2009 3:00 pm
Location: Knutsford England

Post by colmmc »

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.
User avatar
mtf
Family Elder
Posts: 122
Joined: Mon May 09, 2005 2:00 pm
Location: Lisbon
Contact:

Post by mtf »

good luck for all of you!!!
User avatar
skincoll
Family Member
Posts: 50
Joined: Mon Jan 18, 2010 3:00 pm

Post by skincoll »

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!
User avatar
JoyIsMyStrength
Family Elder
Posts: 164
Joined: Fri Jan 01, 2010 3:00 pm
Location: US
Contact:

Post by JoyIsMyStrength »

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 7:28 pm, edited 3 times in total.
User avatar
colmmc
Family Member
Posts: 73
Joined: Tue Dec 15, 2009 3:00 pm
Location: Knutsford England

Post by colmmc »

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)
User avatar
jozee
Family Member
Posts: 27
Joined: Thu Dec 03, 2009 3:00 pm

Post by jozee »

Hi everybody,

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

Jozee
User avatar
Billmeik
Family Elder
Posts: 696
Joined: Fri Nov 27, 2009 3:00 pm

Post by Billmeik »

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)
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”