success of ccsvi

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

Re: success of ccsvi

Postby CureIous » Thu Feb 17, 2011 9:32 pm

Cece wrote:
CureIous wrote:Lounges, public places, crowds used to drive me absolutely bonkers. Stores, trying to pick something off the shelf then someone wants to get by or other distractions, and I couldn't remember what it was I was looking for, that kind of stuff. Maddening. Don't miss it a bit. You could set off fireworks now and it wouldn't bother me. Interrupt me while I'm concentrating on something, and I'll just pick up where I left off. No notes, no reminders, even things a week or two out.

Wouldn't trade it for anything.

Amazing, isn't it. :D :D


My job site is unbelievably noisy, every craft is jammed into a small area, carpenters, saws, cranes, pounding, ironworkers, boilermakers, horns blasting, grinders grinding on metal, hammer drills going into concrete, honestly I barely notice any of it when I'm concentrating on something. It's a meat grinder right now, but having a blast. I go home and draw up my own drawings to use the next day just for kicks. That's after the insufferable misery that is the 91 at rush hour. And still find time to play with the kids.
So anectdotally, 18 months post op, I'd ask a normally fit person to try to keep up with the pace if they can.

But that's just me. Mileages are varying all over the map of course.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1204
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Advertisement

Postby newday » Fri Feb 18, 2011 2:06 am

Brave

I was diagnosed January 2003 and I have had amazing results since my November procedure. I do not post often but have been following the CCSVI forum since April 2009. I would have the procedure again in a heartbeat! In September, I was wondering how soon I would have to leave my teaching position and now I am planning and enjoying life!

Please add this to your anecdotal notes...8 years since diagnosis and life altering improvements from CCSVI treatment. :D
Welcome the brand new day :)
User avatar
newday
Getting to Know You...
 
Posts: 21
Joined: Sat Jan 15, 2005 4:00 pm
Location: PA

Postby Coolcatcarrie » Fri Feb 18, 2011 6:02 am

Hi newday, do you mind me asking what the good results you've had so far are? And how soon they came or if you're seeing more and more improvement every day?
Great to hear that you've had great result!
Carrie x
User avatar
Coolcatcarrie
Family Member
 
Posts: 79
Joined: Sun Jun 20, 2010 3:00 pm
Location: Near Bath, UK

Postby Cece » Fri Feb 18, 2011 8:17 am

newday wrote:Please add this to your anecdotal notes...8 years since diagnosis and life altering improvements from CCSVI treatment. :D

I was diagnosed 5 years ago, but had my first neurological event 19 years ago, and many years of no explanation for what was going on until I got my MS diagnosis.

brave, I wish you had gotten improvements, let us know if your follow-up ultrasound at 3 months shows anything, if you're able to access one.
Cece
Family Elder
 
Posts: 9012
Joined: Mon Jan 04, 2010 4:00 pm

Postby numbness23 » Fri Feb 18, 2011 5:52 pm

Thank you all so much. Your posts have been amazing! Cece congrats to you and I am excited for all of you that are seeing improvement. I thought I read that the greater the blockages the worse the Ms? That doesnt seem to be the case. Cece seems you are a perfect case in point? ENjoy those new sounds nonetheless!!

I understand the risk reward thing and I realize just how different everyone presents with this disease so it stands to reason everyone may have a different result of the procedure.

Loobie thanks for the update that was cool. Janetg doing three all i can say is wow! Cureious awesome stuff.

I imagine at this point cessation of progression would be fine with me. I feel each morning just a little bit of negative change and cannot believe just how far off my U of M MS specialists were with my prognosis. With the afferent vision changes as my first symptom they told me just how I wouldnt have to worry for years to come and here 4 short years and no walking!

I have done rebiff, copaxone and the roids three times. If a medication has a side affect than I am the guy that gets it. So western medicine is not working for me.

CCSVi is the first thing that is showing any hope for me and I just pray that this body of mine hangs in there long enough to give it a try!

thanks again everyone!
User avatar
numbness23
Family Member
 
Posts: 41
Joined: Tue Feb 15, 2011 4:00 pm

Postby newday » Fri Feb 18, 2011 6:37 pm

It took the first week for me to notice most of the improvements and another two months of slowly tapering of medications to realize the additional benefits.

First week, balance and gait improvement...
Before: could not stand with feet together or shower without a stool, walked with a wide stance with eyes to the ground, legs tired
After: can stand on one foot, still use the stool occasionally in the shower, can walk without a wide stance and I don not need to watch the ground

Arm pain requiring Valium, Gabapentin, and Ultram to control no longer needed.

Fatigue before: asleep by 8 PM
Fatigue after: backing off on the Provigil so I can get enough sleep

I used to get 2-3 migraines a month but only had one migraine since the procedure

Don't get me wrong, I still have ms symptoms and still take medicine for spasticity and fatigue along with Rebif, but life is good![/b]
Welcome the brand new day :)
User avatar
newday
Getting to Know You...
 
Posts: 21
Joined: Sat Jan 15, 2005 4:00 pm
Location: PA

Postby EJC » Sat Feb 19, 2011 3:08 am

newday wrote: but life is good!


Ultimately, that's everyone's goal.

If you have the procedure and your feeling is, life is good, or life is better then it's been worth every penny!
User avatar
EJC
Family Elder
 
Posts: 614
Joined: Tue Apr 20, 2010 3:00 pm
Location: Surrey, UK

Postby ikulo » Sat Feb 19, 2011 12:09 pm

I will add my experience to this thread just to balance the viewpoints. I had the procedure done and a few days later had a fairly bad relapse. In fact, most of the improvements I realized from my stem cell procedure had returned. Now, about 6 months after the procedure, I seem to be progressing, even though I was RRMS before the procedure.

My objective isn't to deter you from treatment, that decision is yours. I just hope to inform all those reading that not everyone experiences great results. In fact, some do get worse after the procedure. Those who have gotten worse have mostly stopped posting, or their threads have moved so far down that virtually no one reads them. So check out the special thread for people who haven't benefited from the procedure here: http://www.thisisms.com/ftopic-12342-225.html

New treatments may take decades to perfect. Unfortunately, we don't have that much time. So when you make your decision just be informed that you will be getting an unperfected treatment for a still largely unknown disease.
User avatar
ikulo
Family Elder
 
Posts: 444
Joined: Tue Aug 04, 2009 3:00 pm
Location: colorado

Postby prairiegirl » Thu Feb 24, 2011 10:08 am

Thanks for posting, ikulo; it is important to hear about all treatment results, including results such as yours. There are many factors to consider, but I sure do understand those who seek treatment when there really are no other viable options for potential improvement. My daughter is doing well and she is not yet pursuing treatment. My sister-in-law was on a downhill slider, has had treatment and has had some solid improvements. But, as you point out, all of the various possible outcomes should be well considered. It isn't always an easy decision.
User avatar
prairiegirl
Family Elder
 
Posts: 228
Joined: Fri Feb 05, 2010 4:00 pm

Previous

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