'How Does Your Neurologist Talk About CCSVI?'

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

'How Does Your Neurologist Talk About CCSVI?'

Postby Cece » Tue Mar 20, 2012 10:52 am

http://ms.about.com/b/2012/02/29/how-do ... -ccsvi.htm
I have some questions that I am dying to know the answers to and am hoping that some of you will share your story with us:

For those of you who have gotten treated for chronic cerebrospinal venous insufficiency (CCSVI), what was your doctor's reaction when you said you wanted to get the treatment?
Did your doctor participate in helping you find a place to get treated?
Did he or she communicate with the doctor who performed the test and/or procedure?
How did your relationship change after getting the treatment?
Has your doctor been interested in your progress after the treatment?
And, for those of you who are just considering treatment for CCSVI:

What did your doctor say when you brought it up?
Do you expect any support from your doctor if you move forward with the treatment?
There are many comments:

Doesn't talk about it
hoax & waste of money
should've spent it on a cruise
the excitement is dying out
it could kill you
totally against it
never taken it seriously
acted like he didn't know about ccsvi, then said it was a hoax
placebo effect
changed the subject
listened and agreed it was the best option (!)
not worth it and will not work
not tested, a waste of time, will be hard to get because it's not available locally
it's a scam like bee stings
cold and unfriendly after patient had ccsvi procedure done
we do not talk about it
two people have died you know
don't go, it will cause a stroke and will probably be fatal
the science behind it does not make sense
18 out of 20 patients who had it done showed improvement but 2 got worse (!)
don't care if it's the procedure or in the patient's head as long as the patient is feeling better (!)
won't acknowledge it exists
does not recommend having it done until they understand more
never discussed it with neurologist although he knows I was treated
my neurologist was all for it (!)
my neurologist refused to discuss it and would not give a referral
it's like bee stings
we haven't seen improvements in EDSS
amazing neurologist, nothing less than supportive and curious (!)
neurologist was excited to tell about Robert Fox and his now public autopsy study (!)
completely dishonest, said that Dr. Zamboni had been shut down by his own hospital
open-minded but skeptical, thought results were anecdotal and all in people's heads
angry after patient was treated and said he was lucky to be alive and he had gotten worse, not better and improvements were placebo
belittled CCSVI
procedure is risky, Dr. Zamboni treated his own wife - very unprofessional
some mentions by patients of not going back to neurologist and not sharing that they'd been retreated
"Dr. Zamboni is skating on thin ice"
knows nothing about the treatment, pretty close-minded
I won't give my neurologist the satisfaction of telling him I had the procedure and no lasting results
everything improved after procedure, neurologist was not happy, i have not restenosed, we do not discuss it
scrunched up his face and shook his head "no" when asked what he thought of ccsvi
fails to see how it can have anything to do with MS, then changes the subject
Dr. Zamboni's wife didn't really have MS
I told you this was a sham and they are giving you false hope
"there is a high rate of restenosis"
IRs are just proceduralists
this is dangerous, people have died, it shouldn't be pursued outside of a trial
he remains skeptical but was surprised by how well I am doing
got angry and pounded his fist on his desk when told I may go for treatment
"I don't want my patients dying"
was happy when I returned with improvements
not impressed despite improvements and reversal of gray matter atrophy
he is just lucky, MS is unpredictable, his improvements are just his disease course
told emphatically NOT to do it
very experimental and needs to go through trials
just another thing patient learned on internet and knew nothing about
a few people have died
head in the sand attitude
amazed at improvements
mixed reviews from handful of neurologists, but not summarily dismissed at last encounter
no link to MS, not FDA approved, placebo
would spend the money on stem cells not CCSVI
I did not even bring it up since I heard my neuro say anyone who believes in CCSVI is an idiot
you wasted your money and are getting worse after procedure
just anecdotal evidence, not scientific
after I was treated and got better, was told I was worse and it had helped none of his patients
smirking, it's all anecdotal, any change is due to Ampyra
never saw a miracle in other patients
it's your money so do what you think is better for you
didn't think anything would come of the vascular connection
no one mentioned CCSVI at a neurological conference so they must have realized there's nothing to this
I have no intention of seeing a neurologist ever again
negative about CCSVI, would not send me for an MRV
neurologist would not look at MRV, asked why he had it done
it's a complete waste of time and money
your veins are the same as anyone else
showed me a study showing no evidence that those with CCSVI will get MS
neurologist was not even curious despite amazing improvements
neurologist said nothing when told I had it done
when I ask about it I was quickly told it was a bunch of crap
completely dismissive
will discuss it but does not recommend it
WOW did she react negatively! Like Ohhh hold on here this is a new idea and needs alot of work and I don’t want to discuss it. .
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Re: 'How Does Your Neurologist Talk About CCSVI?'

Postby PointsNorth » Tue Mar 20, 2012 4:23 pm

Neuros are circling the wagons, singin' from the same song sheet.t Try to bring neuros on board? Waste of time. They are big boys & girls. Ya know they are scared when they compare CCSVI to bee sting therapy. I showed the vascular-MS timeline from Charcot to Putnam to my neuros saying, "look there is still time for you to guys to get on the bandwagon and take some credit." I think they hate me! No big loss.
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Re: 'How Does Your Neurologist Talk About CCSVI?'

Postby Rogan » Tue Mar 20, 2012 7:55 pm

Wow Cece, what a compilation of answers.

What great news. 6 of the 89 doctors remember this portion of the oath they took.

"I will not be ashamed to say "I know not", nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery."

Thank you for your knowledge.

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Re: 'How Does Your Neurologist Talk About CCSVI?'

Postby HappyPoet » Wed Mar 21, 2012 5:57 am

Cece, PN, and Rogan,

Thanks so much for your great posts!
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Re: 'How Does Your Neurologist Talk About CCSVI?'

Postby Azaeleaprawn » Tue Aug 21, 2012 7:01 pm

I howled when I saw this post as it took me back to when I asked my neuro (one of the top MS neuros in BC) about CCSVI.
He said quite simply "CCSVI is a cash grab"
I decided then and there that I wouldn't be asking him any other questions as he also told me marijuana will just rot my brain.
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