Can not move legs after CCSVI

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

Re: Can not move legs after CCSVI

Postby frodo » Mon Mar 14, 2011 4:31 pm

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.
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Postby Cece » Mon Mar 14, 2011 4:56 pm

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. :(
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Postby soapdiva884 » Mon Mar 14, 2011 5:25 pm

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!
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Postby Blaze » Tue Mar 15, 2011 5:47 am

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!
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Postby Rici » Thu Mar 17, 2011 12:41 pm

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.
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Postby Salerdog » Sat Mar 19, 2011 8:32 am

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
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Postby Salerdog » Mon Apr 11, 2011 9:36 pm

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.
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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.
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