Poll: Getting treatment?

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

Are you getting treatment for CCSVI?

Yes, I am getting treatment at Stanford.
13
24%
Yes, I am getting treatment somewhere else (post where in this thread)
10
18%
No, but I am looking for someone locally to do it
22
40%
No, I'll wait for more research or my neuro to say do it.
10
18%
 
Total votes : 55

Postby alta » Tue May 12, 2009 1:32 pm

I spoke to Dr. Dake last Wednesday and he would like to see me sometime in June. I’m waiting for Passport Canada to send me out a new passport then he will set up a date.

Hopefully if I get tested and Dr. Dake finds something it will be easier to get someone here to Canada to listen. Are any other Canadians getting tested?

Thank you to every one who has contributed to the CCSVI thread. I’ll post back when I have an official date.
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Postby mrhodes40 » Tue May 12, 2009 1:53 pm

Great alta! Welcome and I hope you have great luck with getting Canadian docs interested!
marie
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Postby Sharon » Tue May 12, 2009 1:59 pm

Welcome Alta!
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Postby Loobie » Thu May 14, 2009 8:39 am

I'm in! I just got off the phone with Angela and Dr. Dake is out today, but is supposed to call me back tomorrow. So now I'm Stanford bound. Then my plan is to go to OSU and stage a sit in in the vasular dept. Not really, but I can be much more insistent if I have something to show them. So I don't know any actual dates, but I'm not going to mess around. If they say "can you be out here tomorrow?", I'll be there. Now that I'm actually on their appt. book I feel better.

Sharon,

I also had metal not only around, but in my eye before I did my first MRI. They X-rayed me, found the metal and then "drilled" it out. That sounds WAY worse than it was. They numbed me and I actually didn't feel anything. Also, it's not like they used a 1/4" spade bit in a Dewalt! I wasn't even sore in the eye. A little around the eye, but nothing intolerable. Maybe he has too much? Don't know, but maybe have him try to get it removed.

So do I make 5?
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Postby Artifishual » Thu May 14, 2009 9:01 am

Loobie wrote:


I also had metal not only around, but in my eye before I did my first MRI. They X-rayed me, found the metal and then "drilled" it out. That sounds WAY worse than it was. They numbed me and I actually didn't feel anything. Also, it's not like they used a 1/4" spade bit in a Dewalt! I wasn't even sore in the eye. A little around the eye, but nothing intolerable. Maybe he has too much? Don't know, but maybe have him try to get it removed.

So do I make 5?


I have had that done twice in the last 10 years or so. Not a big deal. Just be prepared for wearing a patch.....
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Postby Artifishual » Thu May 14, 2009 9:02 am

oh yeah that is great news Lew!! happy for you! :D
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Postby mrhodes40 » Thu May 14, 2009 9:15 am

Hey Loobie! I am so happy for you! I think we have 6 already now you make 7 and a friend of mine not on the net is in too so 8 at least...

I love your sit in idea, surely they'll go for it once you've been treated and have something to show for it! There has to be a person, maybe you can ask Dr Dake who in O he might know that can be tapped? worth a rty probably everyone who is going ought to ask about peers in their local area...shoot if that revealed a name for every area and we ended up with some 6 doctors who were willing that'd be awesome.
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http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby Loobie » Thu May 14, 2009 9:59 am

Yes it would Marie. I had planned on asking Dake if he knew anyone at THE Ohio State University :lol: . Honestly, if this works, I have a good friend who works at the Dayton Daily News and he's going to do a piece on me just for getting the word out's sake. Not to say "local man cured of MS" or anything like that , but maybe to spark interest in local MS'ers to put pressure on their docs. Right now I have to look at this as just another something to do for, hopefully, some symptom relief. I must admit to hoping for more, but I'm damn sure not going to be expecting any more. Can you say Tovaxin :x ? Just something that people can start to ask their doctors about to hopefully spark interest in those rare but awesome 'curious like a cat' doctors who can then talk to their vascular doc. peers. Believe it or not, the one doctor who I know will freak out on this, because he's a knowledge junkie, is my urologist.

IF this works out positively, we all need to be advocates. People you know in newspapers, TV, radio, all that stuff. Heck, I'll try and get on Montel. I think a few people might see that! I'm just really excited right now and I need to slow down. But like I've mentioned before, I'm a hopeless hope junkie.
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Postby chrishasms » Thu May 14, 2009 10:15 am

123
Last edited by chrishasms on Sat Dec 05, 2009 5:57 pm, edited 1 time in total.
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Postby Sharon » Thu May 14, 2009 11:56 am

Hey Loobie and Shannon!

Thanks for the information on "drilling" the metal flecks out of the eyes. I am going to look into it for my brother - he does not have access to the internet. Amazing what we all can share with one another - COOL! :D
Sharon
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Postby Artifishual » Thu May 14, 2009 12:00 pm

After all the latest news about people getting over to Stanford to see Dr. Dake I decided to email my neuro. He called me back and discussed all my options. No surprise he was very supportive in me getting tested and possibly having the procedure done.

Two reasons that I explained to him that I want to have this done here in Texas. One the obvious, the convenience of having this done close to home and less money spent on travel and two the fact that this is new and with the help of the right Dr. I would be considered a hot item with this being so new. I think if I had this done and benefited from it then it would open doors for others right here in my back yard. So I will wait one more week to hear back from my Dr at Baylor and then I will just schedule an appointment with him and meet face to face......
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Postby mrhodes40 » Thu May 14, 2009 2:46 pm

Hey Arti
good for you! close to home will be good. what specialist did you contact: vascular surgery, interventional radiologst?

Even though the U near me did dopplers and nothing else and I am going to see Dr Dake, the guy at the U is still intrigued by the whole thing he asked me specifically to call after I get back and tell him all about it.

he was absolutely NOT comfortable with the idea of trying to treat this considering where the research is in this, but he is still intrigued. I have a feeling after the news conference next month he'll be very sorry he did not get involved more.

that may be true for others too, conneting with them may make them that little more tuned in to the annoncement and its import when they hear it. Repetition makes things more real for people.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Hub » Thu May 14, 2009 8:05 pm

Last edited by Hub on Thu Mar 04, 2010 12:07 am, edited 1 time in total.
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Postby Artifishual » Thu May 14, 2009 8:26 pm

[quote="mrhodes40"]Hey Arti
good for you! close to home will be good. what specialist did you contact: vascular surgery, interventional radiologst?

quote]
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Postby cheerleader » Fri May 15, 2009 4:59 am

Hub wrote:My wife is heading to Stanford in June for the MRV/MRI/ultrasound trifecta. It's crazy that I'm hoping Dr. Dake finds a venous problem, but if fixing it can help her MS, as increasingly seems to the be the case, I'll toast Zamboni, Dake, Cheerleader, Marie, Dignan, and everyone else who has provided insights on the connections between CCSVI and MS....
Thank you all for the hope you have provided. I'll post updates when I have them....


Hub-
I'm so glad you're able to get your wife to Stanford. It was really weird when we got Jeff's results...strange to finally see the root of his problem...(whoa...no working jugular veins?) and then be "happy" because there was a mechanical issue that could be dealt with. Crazy and conflicting emotions. Keep us posted. We'll all join in that toast...
best,
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
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