Sigh...

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

Sigh...

Postby Johnnymac » Fri Dec 04, 2009 8:35 am

So I just got a call back from the IV nurse at my wife's Neuro's office. I dropped off information regarding the different testing protocals for CCSVI along with a full printout of the latest and earlier studies this past Tuesday.

Her response: Just wanted to let you know the Dr hasn't heard of the procedures yet and hasn't had time to look at the information you dropped of but he said he will try to get to it soon.......and this Dr actually studied/mentored under Dr Frohman who was in Spain back in September reviewing the CCSVI findings.

How can a professional Neuro not have even heard about this.....i'm so disappointed.
User avatar
Johnnymac
Family Elder
 
Posts: 213
Joined: Wed Oct 18, 2006 2:00 pm

Advertisement

Postby CRHInv » Fri Dec 04, 2009 8:42 am

Johnnymac said:
How can a professional Neuro not have even heard about this.....i'm so disappointed.


I think that is still very normal. I tell everyone I know about this. It's even in my very boring, holiday note this year. I hope that soon, when I tell someone about this, they will say they have heard of it before. It hasn't happened yet!

I hope your neuro is open to this. Mine was. I was really pleased.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 2:00 pm
Location: Chandler, AZ

Postby Sawdoggie » Fri Dec 04, 2009 10:07 am

That sounds similar to my neuro's first response. He did get to the information relatively quickly and I have had an ongoing email dialog since. I also dropped off a copy of the images that I had taken in Buffalo to him and he did review them and said that my brain MRI was interesting as it is consistent with the iron portion of the theory. After a quick prod from me, he had a neuroradiologist look at the MRV and sure enough there are some things he would like to talk about (though he is careful to state that he does not know how it affects my MS). I have an appointment with him next week to talk about this that should be interesting. I would classify him as "old school" to a degree, but if anything I am getting the feeling that he is open to the idea, especially after seeing my MRIs as I do believe his patients well being is his primary concern. He also made it a point to let me know that he was at a dinner where the speaker was from JNI (Buffalo) and that he was very excited about what they are seeing in the CTEVD study. He also seems to have a high regard for them. As his office has stated, this is a completely different paradigm from where things have been for years. I believe that once the Buffalo information comes out (and if it is how we expect it will be) things will change dramatically.
User avatar
Sawdoggie
Family Member
 
Posts: 63
Joined: Mon Sep 07, 2009 2:00 pm
Location: Cincinnati, OH

Postby MaggieMae » Fri Dec 04, 2009 10:33 am

Johnnymac and Sawdoggie,

Don't be discouraged. You have received nicer and more promising comments from your neurologists than many of us on this forum have received. I've been reading this forum from the beginning and many neurologist have been just plain nasty to their patients when they mention CCSVI.
User avatar
MaggieMae
Family Elder
 
Posts: 380
Joined: Wed May 23, 2007 2:00 pm
Location: Pennsylvania

Postby Shannon » Fri Dec 04, 2009 11:05 am

I agree, Johnniemac - That the nurse took the time to call you back means that the doctor probably asked her to do so, and maybe it's because he really is hoping to have a look. I guess if it were me, I just wouldn't expect to be contacted at all after leaving the materials. I see that as a positive! :) I was similarly encouraged when my current neuro of 15 yrs. told me to print off the most relevant and informative information I had and to take it with me to the appt. with the MS specialist in their dept. in January. If he wasn't intrigued by it, he would have simply told me so. I know him well enough by now. :wink:
Shannon
Family Elder
 
Posts: 148
Joined: Mon Sep 28, 2009 2:00 pm

Re: Sigh...

Postby Out2l8 » Fri Dec 04, 2009 11:17 am

Johnnymac wrote:How can a professional Neuro not have even heard about this.....i'm so disappointed.
Heck, my new neuro hasn't heard of it either! Not surprising I guess, these guys have patients with migraines, cerebral palsy and epilepsy conditions too. So I get it that they're not right on top of everything going on with MS research.

Last month I had to see a orthopedic doctor about a knee problem that I have (long story) and somehow I mentioned that there is some very new info about MS research after he asked me why I have such trouble standing. He said "Really? Huh, my sister has MS I should probably look into it". So I gave him a very fast run down about CCSVI and how it is a vascular condition that my very well be the real cause of MS. To that he said "Yeah, that's not my area". WHAT???? I then chomped on him and said that since his sister has MS and you are a doctor, you are now OBLIGATED to look into this as far as I'm concerned!! I told him this is NOT bee sting venom, NOT goats blood serum, NOT amalgam fillings in you mouth. It's based on hard medical research by prominent physicians and that it is being taken seriously. I think then he was interested and has probably looked into it.
User avatar
Out2l8
Getting to Know You...
 
Posts: 16
Joined: Mon Sep 28, 2009 2:00 pm

Postby Mike56 » Fri Dec 04, 2009 11:54 am

I haven't got a dx yet, but when I brought it up to one of my Neuro's back in Sept. as a possible way to test for MS, he said he hadn't heard of it, but I could go to Italy if I wanted to persue it. What a prick!
User avatar
Mike56
Family Elder
 
Posts: 105
Joined: Thu May 14, 2009 2:00 pm
Location: BC, Canada

Postby Johnson » Fri Dec 04, 2009 6:30 pm

Mike56 wrote:I haven't got a dx yet, but when I brought it up to one of my Neuro's back in Sept. as a possible way to test for MS, he said he hadn't heard of it, but I could go to Italy if I wanted to persue it. What a prick!


I see that you are from BC too. I wonder if we have the same neurologist. Mine's name starts with an O. If yours does too, it could explain why I do not hear back from him.
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 3:00 pm
Location: Ucluluet, BC

Postby prof8 » Fri Dec 04, 2009 10:20 pm

Hi Johnnymac -- I sent you a PM.
User avatar
prof8
Family Elder
 
Posts: 189
Joined: Sun Jul 13, 2008 2:00 pm

Postby Mike56 » Sat Dec 05, 2009 9:36 am

Hi Johnson, my bonehead neuro in the BC interior starts with M. The guy is useless! I'm only keeping him till my next MRI, which he arranged for me. I've got a new Neuro at UBC MS clinic in Vancouver named Traboulsee. Great guy! He's actually trying to help me figure out what's wrong (no dx yet) instead of waiting another 6 months for the next MRI. I haven't discussed CCSVI with him, but when I do I know I won't get a rude, flip response like I did with the Interior jerk.
User avatar
Mike56
Family Elder
 
Posts: 105
Joined: Thu May 14, 2009 2:00 pm
Location: BC, Canada

Postby happy_canuck » Sat Dec 05, 2009 12:08 pm

Mike56 wrote:I've got a new Neuro at UBC MS clinic in Vancouver named Traboulsee. Great guy! He's actually trying to help me figure out what's wrong (no dx yet) instead of waiting another 6 months for the next MRI. I haven't discussed CCSVI with him, but when I do I know I won't get a rude, flip response like I did with the Interior jerk.


Hey Mike,

Dr. Traboulsee is my neuro too (since 2002)! I agree he's very professional, thorough, and genuine. He is a leading MRI researcher, so I will be interested in hearing what he has to say at my annual visit next summer. I have not spoken with him about CCSVI, but UBC's response to-date, has been very cautious. We are tracking our experiences on a CCSVI at UBC MS clinic Facebook page (actually now for all BC MS clinics) at:

http://www.facebook.com/pages/Victoria- ... 832983940#

~ Sandra
User avatar
happy_canuck
Family Elder
 
Posts: 267
Joined: Sat Nov 28, 2009 3:00 pm
Location: Victoria, BC Canada


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service