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 ozarkcanoer » Wed Feb 03, 2010 7:22 am

Great story, prof8. I also have an appointment with a neuroradiologist next Mondy, Feb 8, at a major medical school in my city. And I have an MRV scheduled for Feb 16. I hope my doctor is as interested as your doctors have been. Your good news is just one more plus for all of us. Thank you.

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Postby tzootsi » Wed Feb 03, 2010 7:39 am

Prof8, Ozarkcanoer, this is great news. Hope all goes well. My wife is at the same point - our local IR (also a friend of Dake's) found some problems in her left jugular using a doppler, and is now going to set up an appointment for a venogram and angioplasty. We are now on pins and needles waiting for the phone call!
It's situations like this that will get folks inspired to reach out and contact their local interventional radiologists/ vascular surgeons. Lets break the logjam both in the veins and in the medical world!
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Postby jay123 » Wed Feb 03, 2010 7:42 am

Great job Prof!. I am going to quote you over in the get working thread, that positive attitude needs to be spread.

With Dr. Dake's new title at Stanford I wonder if they would be embarrassed or anything if he quit and went somewhere else where he would be appreciated.

I'd also hope anyone going to their MS clinic knows the situation there, where they are more interested in pushing drugs then potential real help.
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Postby MS_mama » Wed Feb 03, 2010 3:30 pm

Thanks so much for your story, prof... I am excited for you, this seems like your effort is really paying off. It makes sense that the IR and vascular docs are more open to this--after all, they see something that's "wrong" and "fixable" from their POV, whereas the neurologists are so caught up in the whole "well, will this really affect your MS" line that they don't even want us to consider testing or treatment.

I'm bummed to hear about the rejection of dr. Dake's article though. Damn politics... this is suppression of dissent at its finest.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby mrsilkykat » Wed Feb 03, 2010 4:08 pm

I'm really happy to read about prof8 and OC. More, more, more.

At the same time I find myself discouraged to hear that some medical schools are open to new ideas while the medical schools in California seem to have closed minds.

So far the vascular docs at UCSF (that includes IRs, INRs) are shutting us out completely in deference to the neuros at the MS center. We know where Stanford, USC & UCLA are on this. I imagine the other UC campuses are the same, but maybe not.

Has anyone tried UCSD? One of their vascular surgeons, J. Bergan, signed on to the Plebology paper classifying IJV and azygous stenosis.

I can get an MRV at Stanford using Dake's protocols (or I could as of last week. They could shut that down too) But then where do I go from here?

I don't think I want to try IRs at private clinics. This could be seen as a real money maker & I don't want to put myself in that position.

I'm surprised at how beat down I feel. Guess I'll double down on those antidepressants and take a nap.

All suggestions welcome.
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Postby Cece » Wed Feb 03, 2010 4:22 pm

mrsilkykat wrote:I can get an MRV at Stanford using Dake's protocols (or I could as of last week. They could shut that down too) But then where do I go from here?


That's a start, at least, and I'd think you could have confidence in the results if it was done there.

Once you have an MRV and it shows stenosis, you might have more leverage when approaching an IR, vascular surgeon, or stroke specialist.
"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 prof8 » Wed Feb 03, 2010 5:14 pm

jay123 wrote:
I'd also hope anyone going to their MS clinic knows the situation there, where they are more interested in pushing drugs then potential real help.


Well I just have to state that I plan on staying on my MS drugs and working with my neuro even after I have the procedure. I don't view CCSVI as the Holy Grail yet. I simply see it as one more weapon in my arsenal against MS--a kind of back-up insurance plan if you will. I'm trying to cover all of my bases. Perhaps I will go off drugs at some point (when a lot more data is in from future studies) but I don't see going off them any time in the future.
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Postby mrsilkykat » Wed Feb 03, 2010 7:49 pm

Hey CeCe,

Thanks for your response. Last week I felt lucky, today discouraged. You reminded me how I felt last week and to take it one step at a time.

I was elated to get a neuro who would listen and order an MRV. Then I got an IR who would listen, read the docs, knew Dake & sent me to Stanford. Next step, the appointment.

Thanks a lot. I feel like we all will get what we need and want. It's just a matter of time. And hopefully not too much longer. :)
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Postby catfreak » Wed Feb 03, 2010 8:36 pm

Prof8,

Sounds like you have got this under control! So cool one of the docs new Dake, that has to help!

I wish you the best and please keep us posted.

Cat
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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby prof8 » Tue Feb 09, 2010 10:36 pm

Well, it looks like I will be having angioplasty done in a couple of weeks. The interventional radiologist is excited to get moving on this. I think he wants to get in and explore too. The IR will also be meeting with the entire neurology dept. at my medical school to brainstorm and talk about CCSVI. I think my case will be the topic de jour. I'm mentally gearing myself up to get this done. In the meantime I look forward to hearing about the Buffalo results!
Last edited by prof8 on Wed Feb 17, 2010 10:29 pm, edited 2 times in total.
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Postby bestadmom » Wed Feb 10, 2010 5:28 am

I'm excited for you! It's great that the radiology dept will work w/neurology. It's the best way to further the research and to logically follow your improvement.
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Postby mshusband » Wed Feb 10, 2010 8:18 am

Why aren't people posting where they are finding doctors willing to do this at? That way others could look into if it is close to them and perhaps have this done as well?
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Postby prof8 » Wed Feb 10, 2010 8:26 am

Because many of these doctors are requesting that their names not be put up on the forum, or at least not quite yet--so I respect their wishes.
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Postby bluesky63 » Wed Feb 10, 2010 10:32 am

Congratulations on your success in moving ahead with this! This is very exciting news! :-)
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Postby berriesarenice » Wed Feb 10, 2010 5:53 pm

prof8 wrote:Well, it looks like I will be having angioplasty done in a couple of weeks. The interventional radiologist is excited to get moving on this. I think he wants to get in and explore too. The IR will also be meeting with the entire neurology dept. at my medical school to brainstorm and talk about CCSVI. I think my case will be the topic de jour.


Congrats, Prof8! The entire neuro dept? :D This sounds like it could be much bigger that just a lone gun IR fixing a couple random squished-up veins. I'm excited to hear how it goes.
I spoke to my IR's office on Mon and they said he consulted the neuro, 8O :( 8O and would get back to me.
You give me hope that IR/neuro collaboration is possible.
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