Treatment Centers Can Be Found - Get Working!

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

Postby bestadmom » Thu Jan 28, 2010 7:22 pm

KC,

Call Mehta's office and`try to reschedule. I know someone seeing him tmw re CCSVI and someone else who spoke with him earlier this week.
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Re: Acting locally is working...

Postby jay123 » Thu Jan 28, 2010 8:20 pm

pegmegrund wrote:kc - I'm sorry to hear your appt. was canceled. Hopefully it can be rescheduled?


I don't post here much, but have been reading this CCSVI forum daily since late October. I seem to be just a bit late in getting on board for treatment - just a bit late for Dr. Dake's study... just a bit late in emailing Dr. Simka.

I've finally 'heard' and taken to to heart the 'act locally' advice, and started a targeted letter writing campaign to Interventional Radiologists and Interventional Neuroradiologists in my area.

I sent my first batch of letters on Monday, and have sent out a handful each day. I'm pleased to report that I've already had an email response from an IR who is 'interested' and he has also talked to the Neurology department at his hospital and they would like to work together to learn more about CCSVI and possibly do the testing for me. Wow! It works.



THATS GREAT! We have been trying to tell people that it works. I have been told there are 5 doc's in NY that are starting limited trials, I'm sure there names will be public soon.

Keep Writing!!
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Postby shye » Fri Jan 29, 2010 12:33 pm

Jay123

I'm in NY. can you share the info on the 5 docs ? (PM if need to).

Thanks.
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Postby mshusband » Fri Jan 29, 2010 1:00 pm

Yes, Jay, please keep us posted.

I'm in PA, it's a lot closer to some parts of NY than Albany though I'd be glad to go there if that's what it takes.

Anything in Buffalo is really just right up the road.

Anyone out there near Cleveland? Can we get them involved, they have a great hospital and doctors ... keep spreading the word is all I can say and let everyone know if you find anything!
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Postby jay123 » Fri Jan 29, 2010 1:12 pm

Right now I can only mention Dr. Mehta. I'm hoping in the next few weeks the others will consent.
I'm sorry, I don't mean to 'tease' anyone with this, but I did mention it just so that it will help to let others know that writing and asking for help does work!
Try it, you'll like it!
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Postby Cece » Mon Feb 01, 2010 12:05 pm

Treatment centers can be found and I am encouraged by those who are finding them...but discouraged so far by my own results. My GP is on board and attempted to order an MRV (which she has never ordered before), only to be told by one facility that they don't do MRVs and by an IR at another one that CCSVI is junk science and they won't do it.

I have an appointment with my neuro at the end of the month, so I will bring this up to him, but in the meantime I am going to be writing emails to IRs, stroke specialists, and the like. Wish me luck.
"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 Feb 01, 2010 5:37 pm

Cece,
That's great you are putting the effort in, it will pay off.
A couple of words of advice;
- don't expect any encouragement from your neuro, unless you get really lucky.
- that IR sounds like a jerk for having such a closed mind, don't be discouraged there.
- don't emphasis the MS aspect too much, go with the CCSVI is effecting my brain, I want my veins checked. it's probably causing headaches.

I sent you a Pm too.

-
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Postby Cece » Mon Feb 01, 2010 8:51 pm

jay123 wrote:Cece,
That's great you are putting the effort in, it will pay off.
A couple of words of advice;
- don't expect any encouragement from your neuro, unless you get really lucky.
- that IR sounds like a jerk for having such a closed mind, don't be discouraged there.
- don't emphasis the MS aspect too much, go with the CCSVI is effecting my brain, I want my veins checked. it's probably causing headaches.

I sent you a Pm too.

-


Thanks, jay123. I am thinking that a decent argument be that, putting any speculation about the m.s./ccsvi connection aside, the research supports that if m.s. is present, it is a solid marker for the presence of ccsvi as well. Which I'd like treated in and of itself.

I will be pushing for my neuro to include the MRV as part of my annual MRI scans. No idea if he'll be up for this or not.
"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 » Wed Feb 03, 2010 7:47 am

I gave Cece a lot more doctors to write simply by doing a google search for "medical schools 'her state'", "vascular group 'her state'" and "stroke centers 'her state'".
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Postby jay123 » Wed Feb 03, 2010 7:49 am

Here's a post from the thread '2 radiologists...', but look at the positive post from Prof8 - more results from someone being pro-active!!!

prof8 wrote:More good news -- I saw the interventional radiologist today at the same medical school where I saw the neuroradiologist 2 weeks ago. He is chief of the department. It turns out he is best buddies with Dr. Dake--they have known each other since the 1980s because they did their residency together at the same medical school and overlapped by 2 years. 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!
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Prof8

Postby girlgeek33 » Wed Feb 03, 2010 8:08 am

This is great news for Prof8. It would be really cool to know what general locations people are in. For example if in Canada, what part. If in US, what State, etc....
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Postby jay123 » Wed Feb 03, 2010 8:27 am

the intent of this is to get people everywhere trying to find locations. Doctors are very competitive, once one starts then others will have to floow to keep up.
This early in the process most doctors do not want their name published as they do not want 1000 people then calling them. What we need is to keep getting doctors involved, and asking them can you tell others.
Trust me though, when one doctor in an area does it the others all find out - thats why these letters are so important. Once a doctor hears of another, then gets your email saying treat me, he might just jump right there. This did happen to me!
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Postby girlgeek33 » Wed Feb 03, 2010 8:38 am

That's great. I was just curious what general areas were having some success, no specifics. I have read some posts where there was success in Lancaster, PA and another in FL. It's good to see when areas are starting to work out for us, even if we can't provide info on specific Drs...
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Consult Script - how should be written???

Postby girlgeek33 » Wed Feb 03, 2010 8:44 am

Does anyone have any suggestions on how a consult script for going to Vascular Surgeon for testing should be written? I guess I'm asking because I want to make sure all is the best possible outcome with insurance and getting tests done accurately.

Is this a good example?

"Consult Vascular Surgery for Cerebrospinal Venous Insufficiency of Jugular & Azygous Veins, possible reflux of blood flow."
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Postby costumenastional » Wed Feb 03, 2010 8:48 am

I am really trying you know... I mean, i am doing the best i can given my finances and all. First i went to see an interventional radiologist in a private clinic cause in Greece it 's not easy to set up a meeting in a public or university hospital just for trying to make a point. I gave her all Zamboni's papers and she promised to look it up. A week later she called me just to tell me to arrange an appointment with a top neuro!!!! WTF??? Anyway, i have had a meeting with that particular neuro a year ago when i was trying to do campath off label which i did, but only with the help of a friend oncologist. I was the first in Greece to do it.
Today i saw a vascular surgeon again in a private clinic. I had the same papers AND the liberation cds of a friend who managed to get treated a few days ago. I was confident that at least he would be curious to take a look.
He didn't even blink and you know what? I just left.
I dont know what ccsvi can do for us, hell, i dont even know if i have it.

I ONLY KNOW THAT I AM SICK OF SUCH IDIOTS who either think ccsvi is nonsense without reading a single page, or just dont care cause they already make more money than they need.

I wont give up simply cause this is not a choice for me. But i dont believe that this is happening. Checking ones veins is not rocket science. I feel like going out loud on TV or something but last time i checked they must invite you first...
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