Cold as ice...

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

Cold as ice...

Postby PCakes » Tue Apr 06, 2010 6:17 pm

.. results of UBC MS Clinic appt.. wow.. all I can say is... mention ccsvi at your own risk.. ! b-r-r-r-r-r
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Postby mangio » Tue Apr 06, 2010 6:34 pm

full blown hostility here reported by many...
Some say it has alot to do with a visitor from overseas and the
results that sent everyone into damage control. Do you have
any more info?
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Postby dlb » Tue Apr 06, 2010 6:36 pm

what is up with that?? I thought UBC had applied for funding from the MS Society for a study of CCSVI..... any comments from the clinic on that?

Sorry you got the chills there.
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Postby PCakes » Tue Apr 06, 2010 6:47 pm

Yes, the study was confirmed.. but that's it..I was shocked by the icy response to even a hint of CCSVI curiousity.. and as planned I tried to be very respectful and careful with my words.. I really felt like the enemy and very quickly lost all hope of even a superficial discussion... sorry ..that's all folks...i walked away feeling sad for the doctor?
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Postby nicko » Tue Apr 06, 2010 7:10 pm

This could be the biggest progress in the treatment of MS ever. This kind of attitude from the MS clinics should be made public. They are there to help us with this awful monster of a disease. If that sort of attitude was pointed in my direction. I would be posting all the names involved on these forums and writing a letter to the local newspaper.

My local MS clinic seemed somewhat divided on CCSVI. My neurologist kind of politely shrugged it off as something he has no hope for. But the nurses were pretty open to say they do believe that CCSVI does seem to be at least part of the puzzle to this disease.

Seriously .... it seems to me that all this hostility is from them being scared. Now its either loss of money... or being made stupid for not finding this over all these years. Take your pick....
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Postby happy_canuck » Tue Apr 06, 2010 9:29 pm

PCakes wrote:Yes, the study was confirmed.. but that's it..I was shocked by the icy response to even a hint of CCSVI curiousity.. and as planned I tried to be very respectful and careful with my words.. I really felt like the enemy and very quickly lost all hope of even a superficial discussion... sorry ..that's all folks...i walked away feeling sad for the doctor?


PCakes -- oh no! I heard of one doctor there who almost seemed miffed he wasn't the one doing this high profile research, but I am hoping the other neuros are on board with at least an open mind. Are you on Facebook and can come post your thoughts on your UBC appointment there? If not (or if you want to keep things anonymous), you can PM me here and let me know what information I could pass around to the Facebook group. We have a lot of UBC patients b/c that's where the group started.

Thanks,

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby CureIous » Tue Apr 06, 2010 9:59 pm

Yikes. Well try to look at from their perspective, for umpteen years things went at a slow, methodical, predictable pace in the Neuro community when it came to MS, no big surprises, and most "new" drugs came with ample time covering years to get up to speed.

Now inside of 6 months, you have every patient in your clinic calling with their own personal "Aha" moment, peppering with questions, asking about whether they should quit their drugs now or wait a bit ( I know not all do that but you bet some have), and how much does it cost for CCSVI treatment lol.

That means the front lines i.e. the office staff gets the same volume of inquiries too, along with substantial time for appt's being dedicated to the discussion thereof, and one thing I've noticed about most doctors, they just aren't comfortable discussing things outside of their specialty, definitely not in any diagnostic sense.

So it's gonna get uglier before it gets better, maybe never. Depends on the place and time and Dr. too. Seems there is a + story for every - one from what I've seen.

Sorry you had to feel that uncomfortable. They have no right to treat patients like that, just because they are feeling pissy doesn't mean the bedside manner takes a hike.

Mark (who expects professionals to act like it at all times, not just when they had a good golf game)
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
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Postby Johnson » Tue Apr 06, 2010 10:19 pm

I too am sorry for your experience.

I had an appointment at UBC MS Clinic at the beginning of February with Dr. Oger (funny - he had his car broken into that morning, and had the same experience when I saw him in April 08. I swear it wasn't me!), we had the usual niceties, and then I brought up the 800 lb. gorilla. He was not hostile at all, and seemed to express some interest - with the caveat that much research had to be done, etc. He went on to tell me of the Poland gambit, and that someone from Edmonton called him because of a loose stent. He seemed bemused at that, and wondered why she was calling him. He prescribed me Valium for my balance problems (!), smiled, and said to see him in a year, and I was dismissed. It wasn't a cold experience, but an aloof one. I left with the realization that they are irrelevant.

I might go back after intervention, not tell them, and report my total remission. They will do an MRI, and then I will tell them... Good bye!
My name is not really Johnson. MSed up since 1993
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