Have appt. with 2 radiology docs at my city's medical school

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

Postby prof8 » Thu Jan 21, 2010 11:38 pm

PS: Can someone PM me Dr. Dake's phone # if you know it? I used to have it from when he called me to talk back in Aug. but now I can't find it. I need to give this phone # to the Neuroradiologist guy. Thanks!!!
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Postby cheerleader » Thu Jan 21, 2010 11:46 pm

prof8 wrote:PS: Can someone PM me Dr. Dake's phone # if you know it? I used to have it from when he called me to talk back in Aug. but now I can't find it. I need to give this phone # to the Neuroradiologist guy. Thanks!!!


Hey Prof-
thanks for sharing your experience. I'll pm you all the info. So glad to hear another doctor comprehends the research, is equipped to look into it and can alleviate concerns about venous stenting and patency. You did good!!! Keep us posted-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby shye » Fri Jan 22, 2010 6:02 am

Thanks prof8,
incredibly clear and helpful summary of your experience--really appreciate your effort and time in notifying us
sounds like you are well on your way to success here! Please continue to keep us posted....
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Postby TFau » Fri Jan 22, 2010 7:39 am

That's incredible prof8 - thanks for sharing!
Theresa
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Postby Sharon » Fri Jan 22, 2010 8:30 am

prof8 -

It sounds like you need to take a day to relax! :)

This is great news that #1 you got the appointment with the NR #2 that you were able to have a back and forth conversation with him #3 that he is interested and will continue to look at the research #4 he will help you to get treated. This is what we need --- expand the base of doctors whether they be NR's, IR's, vascular or neuros. Congratulations and thank you so much for your deligence in making this happen.

I look forward to your report after you see the IR

Sharon
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Grreat piece of news well reported

Postby Dovechick » Sun Jan 24, 2010 12:15 am

Great piece of news well reported. I'm so pleased this has worked out for you and look forward to the results. It is very encouraging for others to hear what is possible. I have posted the link to this thread to one person already and intend to do it again.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby Brynn » Sun Jan 24, 2010 5:23 am

Good job, Prof8! That sounds tremendously productve! :D Way to turn around your situation! That would have brought SO many people right down and you may very well be using your situation to get the ball rolling close to home and to the benefit of so many others! I had a chance to have the procedure done with Dr Simka last week and am SO pleased that I am going home tomorrow to continue the contacts I had started with some IRs in my hometown who had shown some interest before XMAS. I am looking forward to greater energy levels because I think we all need to carry the torch on this one! I wish you the very best and will look forward to yor progress reports! This all moved pretty fast for me but I am going to try to read up on the "possible concerns" that the IR professionals would have. Did the dr you met with indicate any other than the lack of experience in that area? Any regulation concerns and hurdles? Sorry if that is a bit simplistic but I would like to see things from their perspective. Keep it up! :D Take care, Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby prof8 » Mon Jan 25, 2010 12:36 pm

hi Brynn

Congrats to you for getting treated (and being aggressive about it by going on the waiting list with 2 days notice). I'm glad that you will still keep in touch with the IRs in your area. I think I will know more when I see my IR. I saw a neuroradiologist who works mostly inside the brain which is why he said he didn't have experience with stenting jugular and azygous. . He said he put in very small stents (3-6 cm) and the Dake/Stanford treatment uses larger stents which he said the interventional radiologist would be more familiar with it. But maybe this is why the NR thought the problem would be so "easy to fix" since he is used to maneuvering in the brain with tinier stents. He didn't mention any hurdles or regulations. Maybe I will find out more from the IR. What I got from the NR's nurse is that getting insurance to cover the MRV might be difficult. She called it a gray area. Unless the patient is going to definitely have the procedure or is under continuous care by the doc who ordered the MRV it may be trickier. Good luck with your recovery!!!

Brynn wrote:Good job, Prof8! That sounds tremendously productve! :D Way to turn around your situation! That would have brought SO many people right down and you may very well be using your situation to get the ball rolling close to home and to the benefit of so many others! I had a chance to have the procedure done with Dr Simka last week and am SO pleased that I am going home tomorrow to continue the contacts I had started with some IRs in my hometown who had shown some interest before XMAS. I am looking forward to greater energy levels because I think we all need to carry the torch on this one! I wish you the very best and will look forward to yor progress reports! This all moved pretty fast for me but I am going to try to read up on the "possible concerns" that the IR professionals would have. Did the dr you met with indicate any other than the lack of experience in that area? Any regulation concerns and hurdles? Sorry if that is a bit simplistic but I would like to see things from their perspective. Keep it up! :D Take care, Brynn
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Postby Cece » Mon Jan 25, 2010 2:07 pm

prof8 wrote:There was way more detail but I don't want to bore you and this is getting long.


Um, not bored!!! Lots of information in your post. It is good to hear of another doctor who sees it. It sounds like you will be getting excellent care, well done.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby jay123 » Mon Jan 25, 2010 7:25 pm

Prof thats great. I have been encouraging people to write all the IR's, stroke clinics and even private vascular surgeon groups they can about this, there are people out there that will look at it.

I got lucky similar to you. I had a chief IR at a medical school college answer my email in one day. I sent my Buffalo MRV's to to him and he is going to give it a shot! He submitted paperwork to my insurance company for pre-authorization, I'm waiting to hear!!!
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Postby prof8 » Tue Feb 02, 2010 9:24 pm

More good news -- I saw the interventional radiologist today at the same medical school where I saw the neuroradiologist 2 weeks ago. It turns out he is best buddies with Dr. Dake--they have known each other since the 1980s. He actually called Dake this morning before I showed up! Wow, what a small world. He also called the head of the MS clinic at the medical school where I'm treated to see what he thought as well. The head of the MS clinic has a pretty open mind.

This IR is quite excited about the paradigm of CCSVI. He said there is no proof per se that CCSVI causes MS but he believes in the correlation and thought Zamboni's knowledge of anatomy and the way the vascular system functions was top level. He said we would have to do wider and larger trials over a longer period of time to see what the actual results on MS would be. But, this doesn't mean he isn't willing to treat someone. And honestly, he was really excited about all the Zamboni material he had read. He is meeting with the neurologists in 2 weeks to discuss a collaboration and possibly creating a clinical trial to put Zamboni's work to the test. He described his talks with the MS director already as nonconfrontational. He said it is not like at Stanford. He expects easy collaboration between the neurologists and the interventional radiologists at my medical school.

Just a side note -- this IR said Dake told him that Dake had a paper on the pioneers accepted for print in a pretty solid medical journal. Dake mentioned this to me as well. Apparently the Stanford neurologists flipped out and approached the journal asking if they could write an editorial response to Dake's article. Because of the big fuss and confrontation the medical journal decided NOT to print the article. If you know anything about academia, you know it's a big deal for a journal to pull the plug after accepting something.

The IR said he would definitely treat me. He and the nurse were overly excited to meet me and talk about my scans (which they had viewed before I arrived). He said there was clear and significant stenosis in both my lower jugular veins. In fact, they were flattened and he said he has seen this issue in other veins before. So now this is the 3rd doctor that has seen my blockage. Maybe I just have a really obvious problem?? He was ready to put me in the schedule right away. It's about a 2 week waiting time once you are set up. He said is really looking forward to doing a venogram on me and exploring the azygous, the jugulars, and some of the other veins Zamboni looked at. He said he couldn't get a good view of my azygous vein on the MRV and wants to take a closer look. Oh, I forgot to mention that he wants to try angioplasty only on the first go if he can. He would rather start conservatively and come back again if necessary for stents.

So, it looks like I will be getting treated. I just need to get things in order and figure when I can squeeze this in around my job. The neuroradiologist asked my IR if he could scrub up and come watch the procedure on me. The IR wants to do this in consultation with my neurologist. So there will be collaboration now between 3 departments. Also, it was cool and reassuring to know that the IR has been friends with Dr. Dake for years and years. I know he will be directly consulting with the main man!

In conclusion, my advice to everyone is to contact those vascular surgeons and interventional radiologists. They seem much more open to the concept. Like the neuroradiologist he was confident about the relative safety of the procedure (esp. with angioplasty only) and clearly these are procedures he does all the time. I get the sense these guys could do it in their sleep. Overall, now that I've seen many neurologists (I've gone to 5 in 2.5 years, including the Mayo Clinic in MN) and now these 3 radiology guys (including Dake), I can say that I find the latter group to be much more pleasant to deal with!
Last edited by prof8 on Wed Feb 17, 2010 10:26 pm, edited 1 time in total.
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Postby bestadmom » Tue Feb 02, 2010 10:51 pm

Hi Prof 8,

GREAT story!!!! It sounds very familiar - just like what we've found in NYC with an IR who is collaborating with the neuros, neurovascular surgeons, and reached out to Dr. Dake. Your doc should try to get on a plane and go to McMaster in Hamilton this Sunday. All of the major players will be there.

We all must advocate for ourselves and give the doctors as much information as we can. It's all here on this site thanks to Cheer, Sharon, Marie, and all of the other CCSVI pioneers. This is still so new and we are the doctors' eyes and ears right now.

I can't wait to hear how your liberation goes. I am so happy for you.
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Postby ErikaSlovakia » Tue Feb 02, 2010 11:15 pm

Great story, Prof8!!!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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such good news

Postby Dovechick » Tue Feb 02, 2010 11:19 pm

I'm really excited to hear your news. We had heard rumours that Stanford was stalling and as we are having difficulties getting anyone to take this seriously in the UK, that would have been a real blow to our campaign here... But if someone else is going to take up the baton and run with it all is well. Thanks for doing all that investigative work and having to wade your way through all these neuros.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby CureIous » Tue Feb 02, 2010 11:59 pm

Wow, neuros going for dirty tricks at patient's expense. Glad I sent my letters out, maybe should follow up with why I'm not in a journal by now lol. Very well done Prof, small vascular world isn't it??? Can't wait to hear more particulars!


Mark
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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