Up, then down, then up again!

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

Up, then down, then up again!

Postby lucky125 » Tue Mar 15, 2011 5:31 am


I had a couple of rough days last week. My legs felt heavy and ached sometimes, and I felt a little more off balanced than usual. I forgot to take my purse to the grocery, and only realized it when I was in line to check out. I also forgot to take my daughter to a friend's house for regularly scheduled date.

What was happening to me?????

Well, of course my first thought was that the dreaded downward slide had begun, and right after I so proudly announced that I had passed my three month anniversary! How unfair!

Then I took a deep breath. I had been a little stressed because my talented daughter just made a great basketball team which is going to require a big commitment of our family. Good stress, but stress nonetheless. Then while getting ready for bed on the worst of the two days, I noticed the band aid on my arm. I forgot that I had seen my primary doctor and gotten a tetanus shot which also included pertussis and a couple of other boosters for good measure. I now believe that that shot had a lot to do with my problems.

By Saturday I was feeling like a million bucks again. I woke, showered, rested for a little while, went shopping at a department store, then came home and got dolled up for a friend's birthday celebration. I went to the party and walked down some kinda steep basement steps, played a lame (but no lamer than anyone else) game of ping pong, then came back upstairs later. My balance was sharp, legs didn't hurt at all, and I didn't forget one thing all day!

Today is Tuesday and I'm still on a roll. Whew! I am both relieved and thrilled, in that order. Most people develop physical manifestations of stress, and I am certainly no exception. Some people can't sleep; evidently I forget things and get leg pains. Good things to remember for the next time that stress gets the better of me, oh and, when I get a shot at the same time!

There is lots of exciting things going on in the CCSVI world these days. As I write this many of the leading docs in this field are in Bologna, Italy at the first meeting of The International Society of Neurovascular Disease. This Society was formed when many of these doctors convened for the CCSVI symposium in Brooklyn, NY in July, 2010. They have just agreed on a standard protocol for all doppler Ultrasound testing for CCSVI. This step was desperately needed to ensure that all studies that are done to test Dr. Zamboni's results are using the exact same techniques. That will hopefully eliminate, or at least greatly reduce, the number of dubious studies that claim to refute Zamboni's results. If his numbers do not hold up in studies using these standardized protocols, so be it. We need objective information about this procedure and its testing protocols. All of the wonderful anecdotal stories in the world won't convince the Canadian government to pay for this treatment. We need the hard science. These protocols just levels the playing field so that everyone is using the same standards, regardless of any bias they may have. Too many people have a lot of money and turf at stake if CCSVI is proven to be a big factor in the cause of MS, or at least in its symptom management. Venoplasty is no $3000 monthly infusion, pill, or daily injection that needs to be taken for life. That could cramp a lot of doctor's supplemental income and individual's stock portfolios!

The other big news is the Doctor's Roundtable Discussion: CCSVI & MS scheduled for March 29th during the Society of Interventional Radiology conference in Chicago. The names of participating doctors are listed, and it is very impressive. It is being presented by the CCSVI Alliance, and everyone is invited! I can't make the trip, but I am happy that it will be professionally recorded and hopefully be available on the Alliance's website. History is being made this month, and we are all here to bear witness!

So much has changed since I had my first Liberation Treatment one year ago this month. Wow. The growth of this field has been nothing short of meteoric, yet we are still in its infancy. I am so excited to see what this next year will bring! My wish is for safe, consistently effective, local treatments for all who long for, and are entitled to, this procedure to correct a real vascular condition. If it improves some, many, or all symptoms of MS, all the better![/url]
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
User avatar
Family Elder
Posts: 173
Joined: Wed Dec 02, 2009 4:00 pm
Location: USA


Re: Up, then down, then up again!

Postby prairiegirl » Tue Mar 15, 2011 9:18 am

lucky125 wrote: The growth of this field has been nothing short of meteoric, yet we are still in its infancy. I am so excited to see what this next year will bring!

Well said, lucky-- thanks for your update and wish you the best!
User avatar
Family Elder
Posts: 228
Joined: Fri Feb 05, 2010 4:00 pm

Postby Cece » Tue Mar 15, 2011 7:59 pm

Glad to hear you are feeling better again! Whew!
Family Elder
Posts: 9300
Joined: Mon Jan 04, 2010 4:00 pm

Postby Drury » Tue Mar 15, 2011 9:15 pm

That is what I needed to hear today - thank you!

So glad you are feeling better.
User avatar
Family Elder
Posts: 237
Joined: Sun Mar 28, 2010 3:00 pm

Postby CCSVIhusband » Wed Mar 16, 2011 5:59 am

Love your stories Nicole ...

User avatar
Family Elder
Posts: 475
Joined: Sun Jun 27, 2010 3:00 pm
Location: Pittsburgh, PA USA

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Who is online

Users browsing this forum: No registered users

Contact us | Terms of Service