mri after procedure

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

mri after procedure

Postby kinga » Thu Nov 05, 2009 5:04 am

I just wondered if anyone had his mri after stenting/balooning procedure to see what is happening with lesions,or to look for new ones if any... or maybe there is some special schedule for mri checkup after procedure and we still have to wait for wonderfull news like "no new lesions" ? I know that we need more time ...
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Postby Sharon » Thu Nov 05, 2009 8:36 am

Kinga -

Dr. Dake has you go back to Stanford for a two month follow-up - you will have an MRI at this time. Dake is really more interested in looking at the stent. I asked him about my lesions and he said he really was not looking for a change in the number of lesions unless of course there was a dramatic change.
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Postby kinga » Fri Nov 06, 2009 12:12 am

Thank You Sharon!
I think if we could show our neuros that our mris are free of new lesions after, say,year ,they would be more convinced to ccsvi idea...that would be the best proof that procedure really stops ms.I'm planning to do mri every 6 mos after procedure to see what is happening.
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Postby whyRwehere » Fri Nov 06, 2009 5:09 am

Maybe every 6 months might be a little excessive? I can understand why Dr Dake isn't that interested in them. My husband just had one done (hasn't had one since diagnosis and now it is 7 years later)...his MRI looks so good, you might not think he had MS. This time the doctor saw nothing on the spine (where did it go?) and just a few on the right side of the brain. He said to my husband, that obviously he is ill-he has many issues-but he wouldn't have thought it was MS from the MRI. Lesions do not equal disability...makes you think why are they such good proof of drug efficacy and why are they so important to some people??
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Postby kinga » Fri Nov 06, 2009 10:07 am

hmm I think if after surgery you will not have new lesions it will be good proof for neurologists ...they want hard proof to believe in whole ccsvi idea,so I hope I'll give it to them.
Actually I'm supposed to have mri every 6 mos because I have other "issue" in my brain which have to be observed,but radiologist always look for new lesions too-always finds something new while some old ones disappear.
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Postby whyRwehere » Fri Nov 06, 2009 11:10 am

Yes, but what is better proof: a person who couldn't walk, but now they can, or a person who couldn't walk, who now has a changed MRI, but still can't walk?
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Postby bestadmom » Fri Nov 06, 2009 12:25 pm

I get a brain mri every 6 months since I'm on tysabri. I have ms 11 years and haven't had any lesion change since my original diagnosis and I have 1 lesion. I am sp and can't walk. I think the traditional mri is a waste of money and tme.
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Postby cheerleader » Fri Nov 06, 2009 1:56 pm

Michelle and why are right, kinga. Here's a good thread on this topic...and why Dr. Haacke's study is so important. We need new bio markers for MS progression/healing. White matter lesions don't do it....really recommend this thread as must-reading for new folks.

http://www.thisisms.com/ftopict-8185.html

Many disease modifying treatments use the reduction of lesions as shown on MRI as proof a treatment is "working" in MS. This has baffled me, since we know that the number of lesions does not correlate to level of disease progression. Someone like Jeff or Mel can have 20 brain lesions and function quite well. Someone else can have one or two lesions and be wheelchair-bound. Also, at a certain point, lesion progression stops when MS turns progressive. There must be another mechanism of injury, aside from the immune system, at work in the MS brain.


cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Pepe » Sat Nov 07, 2009 12:22 am

Our neurologist told us several months ago the same: the level of progression does not correlate with what the MRI shows. In other words: we wanted to know if that MRI showed new lessions (A)... and he told us that the MRI do not show how bad or well do you feel (B)... and he was interested in (B) not in (A).
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Postby kinga » Sat Nov 07, 2009 4:06 am

I agree with You all :D I just wanted to say what MY neurologists want to see! they all said to me:if we'll see that there is no new lesions ( and no worsening in illness course as a secondary factor) in long period of time after surgery then we maybe 8O will consider CCSVI as a idea worth of looking at...
I dream (maybe daydream is better word) of treating CCSVI/MS not only as "study" but as a normal technique for everyone,that's why I'm so up to convince more doctors to it.
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Postby SammyJo » Sun Nov 08, 2009 7:09 pm

I forgot to ask Dr Dake why he doesn't use Dr Haacke's free SWI software, get both birds with one stone.

(I tried to find an answer to this in the original SWI thread, but still fuzzy).
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Number of lesions vs disability

Postby ozarkcanoer » Sun Nov 08, 2009 7:33 pm

My sleep went nuts and my vision went double in the summer of 2006. That fall my PCP sent me to get my first MRI and then lickety-split to the MS neuro. I was told I have 40 some lesions !!!! OMG OMG OMG !!! Double vision doesn't hurt it's just an annoyance. So I asked the neuro, how about my sleep ?? Does that have anything to do with MS ??? NOOOOOO he said. OMG OMG. So I said NO to the lumbar puncture. One year goes by. Back to the neuro. He said I have 40 some lesions. I said what about my sleep. NOOOOOOO he said. Well my head was going bananas. So I had that lumbar puncture. Guess what !!!! I HAVE MS. I have 40 some lesions but I walk and have no problems below my neck. Nothing at all. But my head... headaches so bad I want to die. Still can't sleep. I'm nuts.

But the issue is, how can I have 40 some lesions yet NO physical disability ????
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Postby kinga » Sun Nov 08, 2009 10:36 pm

Ozark
I'm in similar situation-many lesions( Brain only) with no disability,only fatigue,vision,bladder problems.I was thinking,maybe iron deposits have something to do ,and my lesions are multiple,but really small.Is it working like that: low iron deposits gives small lesions? I also have bad headaches and observed that when my head starts to hurt my BP is around 180/110,stays like that for a day or so, and then drops to normal and headache is gone! I dont know what is this ,asked cardio ,he said that this is strange,because there is nothing wrong with my heart,arteries...usually my BP is normal too. Did You check your BP during attack of headache?
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Postby radeck » Sun Nov 08, 2009 11:24 pm

Kinga, good point/question: if CCSVI is the cause of MS, your lesion load should go down some time after the procedure, which is why Zamboni and others are looking for this as supporting evidence for the theory.

There's a never-ending discussion on this forum about whether lesions matter or not, and it flared up again in this thread, but all that really matters to your question is that healthy people don't get new lesions, so I'm with you in hoping that their production will go down post CCSVI therapy! At least in the long run, i.e. when the immune system has calmed down a bit...
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Postby ozarkcanoer » Mon Nov 09, 2009 6:33 am

I don't take my blood pressure. I know when I get my headaches I feel my blood pounding in my head load as a drum. Maybe I should try to find some home blood pressure monitor. I'm one of those MSer's who "look very good". No one knows I have it by looking at me. But when I am rolling around on the floor screaming my head off with these terrible headaches, then mu husband knows. Recently I have only had one or two days headache free. I just want to die it hurts so bad. Also my headaches are such that they start mid-afternoon and last all evening. My neuro gave me fioricet which helps some. Now all I can think about is CCSVI, poor blood drainage and headaches, LOL.
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