PATIENTS AND CAREGIVERS DISCUSS THE PHYSICIAN DISCUSSION

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

ccsvi

Postby blossom » Tue Jan 18, 2011 4:03 pm

frodo, please don't be sorry you invited dr. flanagan to that site. i thought it was very interesting and if discussed in more length i thought things were gonna really start to come together.

but it seems that some things never change. as much as it has to.

i'm really really sick of being branded when as we all know it will take the village to make us well.
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Postby SaintLouis » Tue Jan 18, 2011 4:13 pm

Dr. Sclafani,

Please don't give up on your experiment, I for one was very excited at the thought of the opportunity to be a "fly on the wall" and listen and learn from your discussions about specific cases with other IR's. From the start I assumed that was what the thread was to be about.

This doesn't mean I as a patient am not open to hearing many views from many specialties - I've followed Dr. F's thread with interest, but this specific thread I thought was to be about veins and the people who work IN them.

Simple solution: Change the title of your thread to specify IR docs and problem solved. Then if someone wants to start a multi-specialty think-tank thread (which I also think would be grand) they can do so and that might be a better place for some of the recent conversation tangents.
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ccsvi

Postby blossom » Tue Jan 18, 2011 4:31 pm

rn, i know and you know that dr.'s only were to be on that thread. myself i have no desire or thoughts that you should be taken to the woodshed and punished.

first you are an rn, so, i assume you have an idea of the human body.

you, are a living specimen of a human being that has symptoms they call ms-you went and had angioplasty and you got zip!

you learned about dr. flanagan started treatments and are getting good results.

you are living proof that perhaps the cart is being put before the horse in some cases. i'm sure you are wondering how much better your outcome may have been if you had been examined and treated by dr. flanagan's protocol first and then got the ccsvi treatment if still needed. i know i am wondering that "big time" concerning my experience with ccsvi treatment.

i still have hopes even though they have been dashed that all these dr.'s begin working together soon.

thanks again for putting your personal experience out there.

the very best to you. i look forward to hearing of your future improvements.
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Postby MrSuccess » Tue Jan 18, 2011 4:46 pm

It might benefit all ..... to drop the ongoing debate ..... as nothing good can come of it . :idea:

True Story : Mr. Success had a sore throat . After several day's ..... he sought out the services of his doctor. The good doctor examined Mr. Success ..... then recommended Mr. Success see a dentist .

Mr. Success sought out the services of a Dentist ..... who then removed Mr. Success's wisdom teeth [ please .... no wise cracks ... :wink: ]

Problem solved ..... no more sore throat.

Lesson Learned : You never know which Specialty can help you best.


Let's keep ALL the doors and windows open ..... to let in all the knowledge made available to solve the great mystery of MS. :idea:





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Postby civickiller » Tue Jan 18, 2011 5:02 pm

One of the reasons I started UCC is to correct everything before I get liberated so I don't restenosis. Maybe dr. F sees things that might cause or is causing problems which after getting liberated might cause problems.

The dr's might be looking at his theories as if it were a foreign language
Last edited by civickiller on Tue Jan 18, 2011 5:11 pm, edited 1 time in total.
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Postby scorpion » Tue Jan 18, 2011 5:08 pm

civickiller wrote:One of the reasons I started UCC is to correct everything before I get liberated so I don't restenosis. Maybe dr. F sees things that might cause or is causing problems which after getting liberated might cause problems.

The dr's looking at it might be like looking at a foreign language to them so they don't understand it


A foreign language created by Zamboni that so far resembles some sort of hieroglyphics that everyone translates differently.
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Postby Cece » Wed Jan 19, 2011 9:02 am

drsclafani wrote:
Cece wrote:
HappyPoet wrote:Distal from the brain or from the heart?
Am I wrong in thinking that each doctor's definition of "distal" (and "proximal") needs to be clarified?

Here is where Dr. Cumming defined proximal:
http://www.thisisms.com/ftopicp-148594.html#148594


the proper terminology is central, peripheral. There is little confusion with this. Central meaning closer to the center or heart, peripheral meaning away from the heart

This is nonintuitive as an MS patient. We are used to our central nervous system and our peripheral nervous system! (Central close to the brain, peripheral further from it.) It's all in one's perspective, isn't it. I like our heart guys more than our brain guys anyways, I can use these terms.

"Ostium" is a new one to me too: mouth or opening of the vein.
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Postby Billmeik » Wed Jan 19, 2011 12:49 pm

Image


trying to figure out why embedding this image works for me and not Dr. Cummings. Im thinking the spaces.?
Last edited by Billmeik on Wed Jan 19, 2011 12:59 pm, edited 6 times in total.
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Postby pairOdime » Wed Jan 19, 2011 12:53 pm

How about an 18mm x 4cm Atlas from 14-20 atms.....I wonder. Although, 18mm may be considered for the right IJV only. Interested to see what the doctors determine on this one.
Last edited by pairOdime on Fri Jan 21, 2011 4:15 pm, edited 1 time in total.
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Postby Billmeik » Wed Jan 19, 2011 1:04 pm

ok dr cummings pics are embedded fine. UprightDoc has a quote in his last post that starts with a [/quote] which is for closing.

I wish people would correct my mistakes for me!
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Postby Cece » Wed Jan 19, 2011 4:15 pm

pairOdime wrote:How about an 18mm x 4cm Atlas from 14-20 atms.....I wonder.
Interested to see what the doctors determine on this one.

yes, I am curious too! Higher pressures, bigger balloon sizes? Dr. Sclafani actually went up to 40 atm on the case where the ivus pictures were corrupted. That's higher than I'd have expected. No rupture.

Dr. Cumming has talked about concerns about intimal hyperplasia as a result of aggressive ballooning so a short-term course of Plavix or aspirin in addition to the Lovenox might be reasonable.

Still looking forward to Dr. Sclafani posting the "after" images of his case when he is back from iset, but thank you Dr. Cumming for giving us something to look at in the meantime.
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Re: Dr. Sclafani

Postby soapdiva884 » Wed Jan 19, 2011 10:13 pm

RN wrote:Dr. Sclafani said:

" I want to know what my peers think about the venograms and how they would approach treatment."


If that is the reason for posting a case study on TIMS, then perhaps you are unaware that the endovascular MD's have a professional site specifically for that purpose. The discussion is very high level and focused on the imaging and procedures involving all the veins in the body. They have a specific CCSVI thread for your purpose. If your intent is truly to engage your peers, that is the place to reach them.

Dr. Sclafani said:

" I enjoy dr flanagans theories and have picked up some insights from him. I dont know how correct or valid they are but i listen.
but it doesnt help ME when the discussion stays on the spine. Dr Flanagan could start his own thread on treatment if he wanted. "


If Dr. Flanagan's input does not help you, perhaps you would consider reading the anatomy and physiology in his book. It might help you understand the relationship of venous drainage to total fluid dynamics. Your work with veins only affects part of the overall head and neck drainage issues. You are dealing with one piece of the puzzle and it is conceivable that opening veins prior to upper cervical study and possible treatment may be placing the cart before the horse.

Dr. Sclafani stated:
"But to be fair and honest, he was invited"

Yes, he was and I found some of your comments to be dismissive and denegrating. Your responses to Dr. Flanagan's comments had the tone of a pissing match. Please be more respectful.

No, I am not a doctor of any sort. I am an RN.


Oh for God's sake! You have only posted two comments and this has to be one of them?? "pissing match" "please be more respectful"............It seems to me that if you want to get your point across, you probably should NOT cuss and NOT demand respect. You are not talking to a toddler, you are talking to a peer who is an adult!
OK, so my take on this is whether the thread was intended for one thing or another you all KNOW how it goes here. This is bound to happen, people will feel intruded upon and others will feel the need to defend the supposed intruder.
I believe that there are MANY pieces to this crazy puzzle of MS and CCSVI. We need to hear it all, learn it all and share it all. So, if someone wants to join the physician thread, let him or her providing they are a professional. We don't have to read what they have to say if we are not interested or impressed.
There is never a reason for cussing or disrespect of our fellow peers EVER! We all need to remember we are in this TOGETHER!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby drsclafani » Sat Jan 22, 2011 12:30 pm

Cece wrote:Still looking forward to Dr. Sclafani posting the "after" images of his case when he is back from iset, but thank you Dr. Cumming for giving us something to look at in the meantime.


its posted now, cece. Other doctors are also joining. If you knew who some of them were you would be very much surprised
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Postby L » Sat Jan 22, 2011 12:36 pm

drsclafani wrote:
Cece wrote:Still looking forward to Dr. Sclafani posting the "after" images of his case when he is back from iset, but thank you Dr. Cumming for giving us something to look at in the meantime.


its posted now, cece. Other doctors are also joining. If you knew who some of them were you would be very much surprised


Dr. Mark Freedman??
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Postby Cece » Sat Jan 22, 2011 2:08 pm

L wrote:
drsclafani wrote:
Cece wrote:Still looking forward to Dr. Sclafani posting the "after" images of his case when he is back from iset, but thank you Dr. Cumming for giving us something to look at in the meantime.


its posted now, cece. Other doctors are also joining. If you knew who some of them were you would be very much surprised


Dr. Mark Freedman??

It's good that my family is in the basement and I am on the second floor because it can be embarrassing when I burst out laughing like that. :D
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