Back home, safe and sound.

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

Postby whyRwehere » Fri Mar 12, 2010 6:10 am

I was never worried that you wouldn't be feeling fine. I am just impatient for the details....how long do you think it will take to tell us all about it, so I don't keep searching here for an update?
Best health,
Why
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 3:00 pm

Advertisement

Postby bluesky63 » Fri Mar 12, 2010 8:50 am

Hey there -- as we always say, it's best to know the details of your real situation rather than wonder what's going on. I'm glad you have real information from your procedure, but it sounds like you still have plenty to sort out. I am sending you all the best energy as you recover from the procedure and keep learning more. Be gentle with yourself. I am so glad you have a great support team. :-)
User avatar
bluesky63
Family Elder
 
Posts: 441
Joined: Mon Apr 18, 2005 3:00 pm

your journey

Postby LSITC » Fri Mar 12, 2010 4:24 pm

Hi Mark
Glad you are back safe and sound but you sound exhausted.
Get some rest and clear your thoughts.
Looking forward to hearing more straight talking from "the wheelchair man" once you are rested.

:)
User avatar
LSITC
Family Member
 
Posts: 36
Joined: Sat Dec 19, 2009 4:00 pm

Postby marcstck » Fri Mar 12, 2010 9:46 pm

I'm hoping to be able to publish a full report sometime over the weekend. Please bear with me, I'm working on it as we speak. Well, not actually as we speak, because as we speak I'm writing this post, and obviously not working on it.

But you know what I mean...
User avatar
marcstck
Family Elder
 
Posts: 560
Joined: Tue Jan 03, 2006 4:00 pm

Postby skydog » Fri Mar 12, 2010 10:24 pm

Go easy! We can all show a little patience while you write up your report. Have a Great! weekend. Peace and Health, Mark
Plant a BIG Garden Live in the Moment
User avatar
skydog
Family Elder
 
Posts: 306
Joined: Tue Feb 24, 2009 4:00 pm
Location: North Oregon Coast

Postby Vhoenecke » Sat Mar 13, 2010 8:17 am

Take it cool Marc, we are all so thankful that you are sharing with us. Relax and have a great weekend.

Val
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 4:00 pm
Location: Rosetown, Canada

Postby ozarkcanoer » Sat Mar 13, 2010 8:59 am

As always, I'm looking forward to what you have to say. BTW, my sister-in-law and I are hosting a MStery Party Picnic for BNAC in June. I know you were at the first MStery party in NYC so I just wanted to let you know. The whole world is invited, LOL. I hope we reserved a picnic shelter that is big enough!!

Peace...

ozarkcanoer :D
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby William57 » Sun Mar 14, 2010 7:02 am

marcstck wrote:I'm hoping to be able to publish a full report sometime over the weekend. Please bear with me, I'm working on it as we speak. Well, not actually as we speak, because as we speak I'm writing this post, and obviously not working on it.

But you know what I mean...


Well, your wit isn't affected by the treatment. Good to notice!
User avatar
William57
Getting to Know You...
 
Posts: 24
Joined: Sat Jan 16, 2010 4:00 pm
Location: The Netherlands, Europe

Postby jilthepil » Sun Mar 14, 2010 7:02 pm

Glad to hear that you were able to have this done and get some answers. Can't wait to hear the whole story. This was certainly a step in the right direction. I believe we all have a long road ahead of us with this.
User avatar
jilthepil
Family Member
 
Posts: 29
Joined: Sun Jan 17, 2010 4:00 pm

Re: Back home, safe and sound.

Postby Liber8 » Sun Mar 14, 2010 7:58 pm

larmo wrote:
Cece wrote:
marcstck wrote:I still can't believe it but I'm scheduled with Dr. Sclafani in May.


Those of you seeing Sclafani, how long after getting him your info b4 you were scheduled ? And those of you seeing him soon how long ago did you set the date ?
User avatar
Liber8
Family Member
 
Posts: 57
Joined: Sun Feb 28, 2010 4:00 pm
Location: 10,000 Lakes

Postby Cece » Sun Mar 14, 2010 9:19 pm

liber8, it's only been maybe two weeks since I got my appointment made. There were openings in mid-April at that time...but this was just before Marc's blog posting about Dr. Sclafani.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9005
Joined: Mon Jan 04, 2010 4:00 pm

Postby larmo » Sun Mar 14, 2010 11:15 pm

I first contacted the office on March 5th. I got the appointment on the 11th (in the wee hours of the morning) - just before the storm of calls the day after an article about them came out. The administrator knew it was coming so she rushed me through. I imagine they will be quite busy from now on. I'm pretty sure I was one of the last ones to get in before the 'storm'.
User avatar
larmo
Family Member
 
Posts: 57
Joined: Sun Feb 14, 2010 4:00 pm

Postby MaggieMae » Mon Mar 15, 2010 12:34 pm

I called on Sunday, March 7th and left a message and e-mailed on Monday, March 8th. The Friday before which was March 5th (I was told)was the last time they scheduled people over the phone during their initial call. I was sent an excel spreadsheet to complete and was told by Holly that I would be contacted. So, unless I was told something different than others, I am waiting for an e-mail or phone call to give my husband his scheduling date. My husband was also on the list for Dr. Dake before they quit seeing patients. So here we wait again.
User avatar
MaggieMae
Family Elder
 
Posts: 380
Joined: Wed May 23, 2007 3:00 pm
Location: Pennsylvania

Postby larmo » Mon Mar 15, 2010 1:07 pm

Make sure you fill in your SS# and mothers full maiden name. I was told that made the difference for me. The next email you'll get from her is a possible date (or more than one). Then you email or call back confirming you want it. Then see sends you a confirmation.
The spreadsheet needs to be filled in as completely as possible. It makes sense, who would you rather schedule. Someone who filled it in completely or someone who 'Doesn't follow instructions'. Do your best to talk to her on the phone. If she 'knows' you, you might receive better priority. Now that I think about it, I talked to her on the phone before emailing.
User avatar
larmo
Family Member
 
Posts: 57
Joined: Sun Feb 14, 2010 4:00 pm

Postby whyRwehere » Mon Mar 15, 2010 1:13 pm

Why do they need your mother's maiden name? Why do they ask?
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 3:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service