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PostPosted: Sat Mar 20, 2010 1:48 pm
by magoo
Congratulations Don!!!!! I can relate to your happiness, it's wonderful right? I hope you continue to improve. Good job going local and advocating for yourself. I hope we continue to hear more stories like yours.

PostPosted: Sat Mar 20, 2010 2:03 pm
by Donnchadh
Cece wrote:I don't know about this...I think the drugs have their place, that CCSVI starts off the problem but that once the blood brain barrier is breached, there is some autoimmunity involved, as Zamboni theorized. But I have always gotten by with Copaxone, these last four years, which has fewer side effects. I will stay on it post treatment too.


What I trying to say us, I think screening for CCSVI should be the FIRST step in treating MS. An ultrasound is a conservative, non-invasive procedure, that takes only 45 minutes to do. The results should ready in a day or two. If there's no venous problems, well then some other course of treatment might be required.

In my case, I never took MS drugs because the neurologists thought my case was hopeless.

Get liberated!

Donnchadh

PostPosted: Sat Mar 20, 2010 2:11 pm
by Donnchadh
magoo wrote:Congratulations Don!!!!! I can relate to your happiness, it's wonderful right? I hope you continue to improve. Good job going local and advocating for yourself. I hope we continue to hear more stories like yours.


Thank you. Yes, it's great. For the first time in twenty years, I have HOPE! I am sure many MSer's fall into depression when they realized that they were only getting worse, and their treatments didn't really help.

My main concern now is that if my jugular veins relapse and the initial progress is reversed. Dr. Zamboni's research showed that about half did after 18 months; maybe I will be one of the lucky ones.

Donnchadh

PostPosted: Sat Mar 20, 2010 5:39 pm
by mshusband
Donn ... did you mention that to the IR? (that the veins could re-stenos)

I would imagine they would be willing to do this a 2nd time if they did it a first.

Also are you guys following up with these IRs on a regular basis to re-look at this?

PostPosted: Sat Mar 20, 2010 6:35 pm
by Donnchadh
mshusband wrote:Donn ... did you mention that to the IR? (that the veins could re-stenos)

I would imagine they would be willing to do this a 2nd time if they did it a first.

Also are you guys following up with these IRs on a regular basis to re-look at this?


Yes, we are very aware that this could happen. But at least he will know exactly where to look the second time around.

Donnchadh

PostPosted: Sat Mar 20, 2010 6:44 pm
by Cece
Donnchadh wrote:My main concern now is that if my jugular veins relapse and the initial progress is reversed. Dr. Zamboni's research showed that about half did after 18 months; maybe I will be one of the lucky ones.


You are already one of the lucky ones. :)

I don't like the 50% odds of restenosis either. At least with your list of improvements, you've got something to compare against if you start feeling worse!

PostPosted: Sun Mar 21, 2010 2:12 pm
by Donnchadh
My follow-up visit to the IR will be on 21 April, so if anyone has any questions I could relate them.

Donnchadh

PostPosted: Tue Mar 23, 2010 5:38 pm
by newlywed4ever
Donnchadh - just a quick THANK YOU! Since I also have PPMS, your thread is one of the first I read. I am sincerely happy for you. I have started my letter writing to IRs in Chicago (I am in Michigan's U.P.). Sending positive energy your way for continued improvement...

PostPosted: Tue Mar 23, 2010 6:11 pm
by BooBear
Do you mean Northern Illinois University?? Would you mind sending me a message on which IR you saw that performed the CCSVI for you?

I am in the Chicago suburbs, but am treated out of the OSF Medical Center/Illinois Neurological Institute in Peoria. I have inquired there about CCSVI, but my neuro wants to hold off until more is known.

Just curious!

PostPosted: Tue Mar 23, 2010 6:34 pm
by Donnchadh
newlywed4ever wrote:Donnchadh - just a quick THANK YOU! Since I also have PPMS, your thread is one of the first I read. I am sincerely happy for you. I have started my letter writing to IRs in Chicago (I am in Michigan's U.P.). Sending positive energy your way for continued improvement...


Thank you....I can use all the positive karma I can get. Looking back at this all, I am amazed how quickly this fell into place for me. After twenty years!!!!

I went shopping today at Wal Mart and as usual used a grocery cart. Pre-procedure, my left foot would drag. My right calf would tightened up. And by the time I checked out, I was exhausted.

Today, no left foot drag. The right calf tightness was gone. Still felt a strange sensation of individual muscles contracting and relaxing in the lower right leg. The sensation of two "concrete pillars" was gone. Pace was quicker and much more fluid. Still far from normal but amazing differences since Thursday.

I had to carry 50 pounds up 21 steps to get up to my apartment; it wasn't easy but I did it. I was tired but it was the appropriate kind of tired: after physical work. I used my exercise bike for the first time yesterday and did 1 mile. I was too tired to try more today after shopping.

Donnchadh

PostPosted: Tue Mar 23, 2010 6:43 pm
by Donnchadh
BooBear wrote:Do you mean Northern Illinois University?? Would you mind sending me a message on which IR you saw that performed the CCSVI for you?

I am in the Chicago suburbs, but am treated out of the OSF Medical Center/Illinois Neurological Institute in Peoria. I have inquired there about CCSVI, but my neuro wants to hold off until more is known.

Just curious!


No, not NIU. Frankly, I am not surprised about the neuro's response since that they can't do the procedure on you even if they wanted to. You need an IR or vascular surgeon for the CCSVI procedure.

The IR doesn't want his name published yet. The nurse told me that he turned down a woman with mild MS symptoms. I have referred another MS patient to him, and I really hope that he will be able to be liberated.

I am planning on referring others at whatever pace the IR is comfortable with; especially if they are in Northern Illinois.

I don't want to scare off this IR from doing the CCSVI procedure.

Donnchadh

PostPosted: Tue Mar 23, 2010 7:19 pm
by Rose2
Don,
Congratulations!!!
You did a great job of explaining the procedure. I had stents placed at Stanford and reading your description is identical to mine, except for the balloon pressure because I had the stents instead.
The pre-po and post-op medications were a little different.
You gave great detail and insight.
I could really relate to how you felt at the end. Tired from staying awake but not wanting to miss a second of it.
And already at WalMart!
My only advise to you is please take it easy. It is so exciting to feel better that it is easy to over do, so try to feel better each day slowly.
I am still feeling better every day and it has been 5 months!
Sincerely, Rose ;)

PostPosted: Tue Mar 23, 2010 7:23 pm
by newlywed4ever
I see myself as you described your pre-liberation in Walmart - in fact, I say I'm boycotting Walmart when, in reality, it's too much for me to get all the way to the back of the store for a gallon of milk!

Regarding your IR and/or vascular surgeon - I respect you for keeping his identity confidential until he's ready to work 24/7 when the flood gates open :wink: That trust is a 2-way street and I think he made a good choice when he consented to liberate you!

PostPosted: Tue Mar 23, 2010 7:29 pm
by Rose2
Oh also,
The Hot Head symptoms you had before Liberation? ME TOO!
For 10 years I have had to have a glass of ice to chew on to keep my head/skull cool. Constantly. Always. Never without it and the need to chew on the ice would come on after the last mouthful of ice was swallowed and my head started to heat up again.
I know this sounds weird but it seems like you can relate?
But not once since my Liberation have I ever craved the ice again!
Not only that, I don't even enjoy cold drinks!! Maybe a Cosmo, but that is for a whole other issue! ha ha
Also, I wanted to Second your list of immediate improvements. Me, too.
Here Here!!!
Thanks for writing everything down so well.
Sincerely, Rose

PostPosted: Tue Mar 23, 2010 7:38 pm
by Donnchadh
Thanks Rose.

I am trying to take the mystery and fear out of undergoing the CCSVI procedure by relating my experiences. I hope this is helping others.

Donnchadh