This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Mon May 20, 2013 2:18 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 22 posts ]  Go to page Previous  1, 2
Author Message
PostPosted: Mon Mar 14, 2011 4:31 pm 
Offline
Family Elder
User avatar

Joined: Wed Dec 02, 2009 4:00 pm
Posts: 521
Salerdog wrote:
Has anyone lost the ability to move their legs after CCSVI and still not got the ability back after 6 months.
Also regain lost ability to transfer after CCSVI. (SPMS-do have flow)
Thanks, Bob


Salerdog. In some way the result has a positive side. This means that your problem is vascular related for sure. Look for a better vascular doctor that can fix the damage that the first one has caused.

_________________
You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info


Top
 Profile  
 
 Post subject:
PostPosted: Mon Mar 14, 2011 4:56 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
The only thing there that jumps out at me is that the clots happened fast, as did the getting worse. They also resolved fast. Just because there is flow does not say much about if it is good flow or as good as it was before. A recanalized vein is not the same as a vein that never clotted.

You didn't say, do you have any more from the Barrie report, does it still show CCSVI? When considering a follow-up procedure, you might look at the report as if it were the report of someone who never had this done, if it still shows Zamboni criteria.

I'm also reminded of javabean who pursued three procedures in rapid succession but never regained her brief improvemnts after the first one. There isn't always a happy ending.

I notice we're not hearing anyone else chime in and say that they too got immediately worse like that with walking, I think it is unusual.

I am very sorry that things have gone backwards and with it so immediately after the procedure, it seems likely that the procedure is to blame. :(


Top
 Profile  
 
 Post subject:
PostPosted: Mon Mar 14, 2011 5:25 pm 
Offline
Family Elder
User avatar

Joined: Mon Apr 05, 2010 3:00 pm
Posts: 167
Salerdog, again I am sorry........I also wanted to say I am sorry things are not going well. We are having issues with things not going so well too. You are not alone in this, truly! It is so discouraging when things get worse instead of better, that is what we are dealing with on our end. Hopefully things turn around!

_________________
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!


Top
 Profile  
 
 Post subject:
PostPosted: Tue Mar 15, 2011 5:47 am 
Offline
Family Elder
User avatar

Joined: Sun Jun 27, 2010 3:00 pm
Posts: 405
soapdiva884 wrote:
Salerdog, again I am sorry........I also wanted to say I am sorry things are not going well. We are having issues with things not going so well too. You are not alone in this, truly! It is so discouraging when things get worse instead of better, that is what we are dealing with on our end. Hopefully things turn around!


SoapDiva, I'm sorry you are also seeing setbacks. Was this related to the first treatment or to the more recent one by Dr. S?

I do recall a woman (possibly from Nova Scotia) who posted that she was considerably worse after treatment in Europe. I don't think we've heard from her for a while. If she is still on thisisms, I hope she will give us an update. .

Hang In There SoapDiva and SalerDog!


Top
 Profile  
 
 Post subject:
PostPosted: Thu Mar 17, 2011 12:41 pm 
Offline
Family Elder
User avatar

Joined: Thu Nov 12, 2009 4:00 pm
Posts: 282
Location: Poland Bialystok
Direct response Your question from Dr. Franz von Schelling:

" Dear Richard,

Dawson-fingers and Steiner-splashes, hallmarks of (venous) MS of the brain, are not caused by venous stasis or venous stenoses alone. In form, distribution pattern and manner of spread they ultimately betray a transmission of retrograde venous impulses along inner cerebral veins.
An MR scan in a paper of 2004 (Lancet 363: 368) has accordingly shown: Plain damming up of blood in inner cerebral veins creates just a diffuse pool of edema.
Dependent upon individual venous anatomy, venous blood can be lashed, or also pressed, back into the brain from any sufficiently pre-filled neck and chest vein. Enhanced pre-filling need not be caused by venous stenosis - it suffices that it be given in a moment at which neck or chest veins directly related to inner cerebral veins come to be compressed.
Please forgive my limiting myself to a few principal hints. Haake’s MRVs show: the actual conditioning of venous excess pressures invading the brain has to be elucidated for each patient anew.

Best,
Franz "

Regards
Rici


Last edited by Rici on Thu Mar 17, 2011 12:45 pm, edited 1 time in total.

Top
 Profile  
 
 Post subject:
PostPosted: Sat Mar 19, 2011 8:32 am 
Offline
Getting to Know You...
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 22
Location: Niagara Area, Ontario, Canada
Rici, Thanks for your info, and I wish you good luck in the open operation to fix the diameter challenges of the right jugular. Bob


Top
 Profile  
 
 Post subject:
PostPosted: Mon Apr 11, 2011 9:36 pm 
Offline
Getting to Know You...
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 22
Location: Niagara Area, Ontario, Canada
bluesky63 wrote:
That sounds awful. :-( When you have hoped for improvement, and then to find yourself in this situation. Your wife is so fortunate to have you as her partner. (My spouse left after the MS dx.)

I am going to say what I often say to people who suddenly get increased symptoms -- before you assume it's directly MS related, make sure a doctor checks for any other condition that could be causing symptoms -- infections, bladder retention, a medication reaction, anything. I have had doctors say that *every* issue I have must be just my MS, but I have also had doctors examine me properly with an open mind -- and then find something different and treatable.

I am thinking all the best to you, and hoping your wife gets the best atention and some relief. Again, what a blessing to have a supportive spouse!

Sorry, I am editing this to really emphasize my suggestion -- I think many of us have experienced a somewhat lesser degree of health care because doctors assume that every single thing we experience is from the primary diagnosis of MS. But people with MS get other issues too!

I wanted to share one of my worst examples -- I had severe pain, spasticity, weakness, etc. -- really excruciating -- and I went to both my neuro and my primary care doctor, both of whom said, in effect -- what do you expect? You have MS!

I was scheduled for a spinal MRI anyway, and guess what -- they found a broken vertebra, the cause of my symptoms. I had told both of these physicians that I'd had an accident with my wheelchair flipping over on top of me. But they were so used to seeing me as an "MS patient" that they were not open to any other possible explanation for my issues, even given the history of an accident and me asking if that could be related -- not until the coincidental MRI showed what had happened.

So you always have to be a strong advocate and ask for a proper health evaluation!

OK, best wishes again.
[quote][list


BlueSky sorry on the hubby leaving after the MS diagnosis. (I appreciated your kind note). I see you are in the hospital and I am sending you some positive energy to help you over the hump or bump in the MS highway that you are dealing with right now. Hope you get better very soon.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 22 posts ]  Go to page Previous  1, 2

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Next move, getting MRV in Finland

blitzi

1

674

Wed Sep 30, 2009 8:17 am

Ernst View the latest post

There are no new unread posts for this topic. My legs ache

greyman

8

1909

Sun Mar 14, 2010 11:28 am

savouryourlife View the latest post

There are no new unread posts for this topic. Legs on fire

pklittle

12

908

Wed Aug 31, 2011 1:57 pm

bestadmom View the latest post

There are no new unread posts for this topic. Heavy legs

Rosegirl

14

1711

Fri Sep 16, 2011 2:38 pm

Cece View the latest post

There are no new unread posts for this topic. Bionic Legs allow paralyzed man to walk again

Chilcotin

2

784

Fri Jul 16, 2010 5:08 pm

L View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: