Search found 80 matches

by berriesarenice
Sat Jun 05, 2010 11:05 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Plodding to Poland with Johnson...
Replies: 92
Views: 17338

By the way, has anyone who has been here know where to get a decent espresso? (not at the hotel restaurant, it is insipid.) Wishing you all the very best!! Great espresso at La Grotta...seriously, we went there at least once a day for a cup. I think the "white coffee" was our favorite... ...
by berriesarenice
Wed Apr 28, 2010 2:21 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: fiddler finally flying... to Poland
Replies: 118
Views: 25190

Ted,

hurry, it isn't too late to order a last ham 'n cheese sandwich to your room from the midnight to 5am menu.
by berriesarenice
Wed Apr 28, 2010 2:06 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Smaller jugular vein than the other anyone ?
Replies: 15
Views: 7502

I had the big right, small left thing too, and the local interventional guy said it was normal. Simka, on the other hand, found three very tight spots on the left, and a malfunctioning (long?) valve on the right.
by berriesarenice
Tue Apr 27, 2010 5:28 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: fiddler finally flying... to Poland
Replies: 118
Views: 25190

Ted, I am so excited for you!! I have to say that my group (early April) was lamenting that our time didn't overlap with yours out there. We had hoped to meet you. You did so much to help us all prepare for our trip. Thank you, thank you. Enjoy this time. It is like nothing else you will ever do in ...
by berriesarenice
Tue Apr 20, 2010 3:43 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: berries are nice in Poland
Replies: 36
Views: 8106

My 8-year-old daughter just handed me her observations, written in red crayon: "It is so much more fun now that mom has had her surgery done, and is back from Poland. She even acts nicer! On our way back from picking up mom and dad from the airport I could tell by her behavior. She took us to t...
by berriesarenice
Tue Apr 20, 2010 2:33 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: berries are nice in Poland
Replies: 36
Views: 8106

Silverbirch, I don't think stents are a problem for the MRI, I can't explain exactly why though. The one I got is supposed to be a combo of several different metals, and I've heard that this is helpful, but someone else out there can explain why. Regarding DMD, I am stopping mine, but I know many ha...
by berriesarenice
Tue Apr 20, 2010 10:59 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: berries are nice in Poland
Replies: 36
Views: 8106

Oh yes, I'm here. Thank you for checking on me. I've been without internet since my return from Poland, and Blackberry is awkward for a report that does justice to my condition. I feel amazing, amazing, amazing! I have been running around with my children (I have six) all day, every day since I've b...
by berriesarenice
Thu Apr 08, 2010 8:43 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: berries are nice in Poland
Replies: 36
Views: 8106

Thank you, thank you for the well wishes and prayers. Just out w/ a ballooned valve in the right IJV, a ballooned left IJV which was very narrow with three especially tight spots (he recommended a stent, but I opted out--not sure if that was the right call?), and finally a stent in the azygos which ...
by berriesarenice
Thu Apr 08, 2010 2:48 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: berries are nice in Poland
Replies: 36
Views: 8106

berries are nice in Poland

I had better quick start a thread. I am in Katowice, lying in the hospital bed, hooked up to an IV. Dr. Simka just did our Doppler Ultrasounds, and there are 3-4 patients in front of me for the procedure. Time is running out to record my "before" symptoms, so here goes... Before: Fatigue, ...
by berriesarenice
Wed Mar 31, 2010 8:05 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Gordon Brown's Response to the UK petition
Replies: 59
Views: 12026

Re: NEVER EVER SURRENDER WE WILL FIGHT ON THE BEACHES

Gordon wrote:
Ah, brilliant!
I enjoyed that... Thanks
by berriesarenice
Wed Mar 31, 2010 7:48 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: use of neck MRV in dx CCSVI
Replies: 12
Views: 4470

Re: use of neck MRV in dx CCSVI

RESULTS: All MS patients and none of the HC presented CCSVI, according to the DS criteria. This was confirmed by SV. I'm confused then. I know it's only 10 MS patients and 7 controls, but doesn't it cast some doubt on their 55%/25% study? I'm confused too. How does this group play into the larger g...
by berriesarenice
Tue Mar 30, 2010 5:36 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: A piece on Dr Dake (and Cheerleader) in The Wall St. Journal
Replies: 41
Views: 10590

coincidence?? another Stanford MS story by the same author, the same week. Bit more upbeat, I'd say. wonder why? link to WSJ Here's a Globe and Mail article that addresses (rather awkwardly I might say) both the topics of CCSVI and interferon in the same article. http://www.theglobeandmail.com/life...
by berriesarenice
Mon Mar 29, 2010 2:44 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Fraser's Adventures in Poland...
Replies: 71
Views: 17563

Fraser, you are right that Coumadin (or Warfarin) required blood tests to monitor INR.
Areplex is the same active ingredients as plavix, which does not require blood tests as far as I know.

Hope that is helpful.
by berriesarenice
Fri Mar 26, 2010 6:18 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Name of test to ask for?
Replies: 1
Views: 1489

AC, Here are the full set of tests posted on Cheer's facebook page from Dec. http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/what-are-the-tests-for-ccsvi/225095842210 (sorry, I can't make the link shorter...just can't) My neuro used "Headache" as the reason for ordering the MRV. ...
by berriesarenice
Fri Mar 26, 2010 2:29 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Katie41 in Poland!
Replies: 46
Views: 10179

Medication info: I had just the Fraxiparine. The people with stents had Fraxiparine, Areplex, and Polocard (Aspirin). I looked up Areplex and it does say contraindicated when breastfeeding. Thank you so much for checking on this for me. Forgive me for bothering you so soon after your procedure. I w...

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