Responses from some CT doctors

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

Responses from some CT doctors

Postby javaneen » Fri Jul 03, 2009 1:53 pm

Hi everyone! A lot has been happening on here. Its almost imposible to keep up.

I just wanted to share with everyone comments from some of my CT doctors. I gave some of the articles from the sticky to 4 different doctors in the area. Two are primary care docs and two are ENT docs. I work in an ENT clinic so I gave it to the docs I work with. One, whom I highly respect, read the article and then said the most ridiculous thing to me ever. I actually will not post it as I truly do highly respect this doc. The other doc (he specializes in throat and neck cancer) I work with actually read everything I gave to him wrote notes in the margin and highlighted sentences and he told me that overall he was completly astonished by the results. When I first gave it to him he was a little hesitant because he said research out of Europe isn't as strickly guided as it is here in the US and sometimes the studes aren't conducted very good and when reapeated here in the US the results are drastically different. He then went on to say that he doesn't see how the results could be very different as the study was done very well and they were using tests that are done often. He basically said "there is really something here, but too soon to say what...but obviously there is a correlation..." So then he went on to tell me that he thinks I shouldn"t really do anything with this knowledge as its cutting edge info and not fully reseached. He wouldn't want me to get into something that was going to make everything worse. He said the stent surgery is risky and might need several trials to iron all the kinks out...that its not quite as easy as "just sticking a stent in the the vein." So he didn't really recommend me getting an MRV or contacting Dr. Dake. He feels that my MS is too mild to get into anything so drastic (EDSS 0 with no symptoms and only two major exacerbations) and I should wait. However, he knows that this is a highly personal decision and would support me in whatever I choose and if I wanted to get an MRV he would help me and find the best radiologist at Yale to help out. I haven't decided what to do yet?

Ok sorry this is so long. I'll quickly tell you about what my PCP said. He told me that the article "all makes so much sense" and its worth looking into. He said I should first talk to my neuro (I have an appt. on the 14th Ill let you all know how it goes) and see what he says. If he is not able or willing to help me he recommended I call Dr. Dake and see what he thinks I should do and maybe he can tell my PCP the correct test to order. My pcp did say that CCSVI really makes sense for me specifically as I was born with a ventricular septal defect (VSD) and I have raynaurds. Does that make sense and fit with the CCSVI puzzle?

So I guess I just really don't know what to do. I am young (30 years old) and was dx 3 years ago. I have only had two exacerbations and no disability. I am however, highly allergic to copaxone and the interferons don't seem to work for me so I am doing monthy steroids :x and montly IVIG. They seem to be working fine. My husband and i are thinking of having anther kid soon and not sure if we should jump into this full speed ahead or just wait a year or so and see what comes of it.

Thanks everyone! I'll keep you updated on what my neuro says on the 14th.
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Postby mrhodes40 » Fri Jul 03, 2009 4:07 pm

was born with a ventricular septal defect (VSD) and I have raynaurds
VSD is a hole between the sides of the heart and it means the blood gets mixed. I am not a doctor but I would not think that would redispose you to this unless they somehow hurt some nearby veins in some way so that a stenosis developed there, but when you operate on the heart--assuming that happened-- you do't really go near the jugs of azygos. I have raynauds too...not ready to say if it is gone after stents or not.

The doc who was unrepeatable is sad. Really, just sad. Sometimes the greatest docs are the most rigid and they get that way in order to function on the job cause they think it helps to be that way. Like if you second guess yourself all the time you are an unsure doc and you are not well liked it makes you indecisive, weak and less competant seeming, so they don't listen to new ideas and pretend instead the status quo is great for everyone even when it is not so great if you are the patient.

The more open minded docs are rare it seems. I like highlight guy he sounds like he really went in open minded. I object to the idea that European research is kind of second rate though especially when Zambonis study was blinded they did it all very, very well. I'm glad he acknoledged that part.

The question will be how well others can LEARN dr Zambonis way of looking at the dopplers because they were normal for me even though Dr Dake told the gal what we wanted. She was biased ahead of time that there would be nothing and this whole thing was stupid so guess what? she found nothing just like she thought she would. THAT is going to be a problem for people if doubting researchers do a study like this "WHaaaaa? no way. this dude zamboni?... no way. Blood flows back and forth all the time. I'm just gonna show this is as dumb as it seems....let's do dopplers and just show that these are normal..." It' be easy to make it all look absurdly off base by showing really mixed doppler results in a large study............. they can get the girl who did my dopplers and they'd be set...

never mind that 2 hours before my "normal" dopplers MRV had revealed 80-90% stenosis in my jugular veins..............

The sonographer had the gall to tell me that my jugs could not be stenosed or she'd see turbulence on her doppler!!! 8O 8O she was so beautiful, so sure of herself, so confident....

and so wrong.

I still feel vulnerable about that ... I still feel affronted. What if she had been the person I saw first? I would have been on this board telling everyone I had been tested and no dice!! it is not a deal!! I would have believed her because she was so knowledgeable and confident.

You know if I were you I might get tested just to know what is what and to advance the science. I mean it is good for Dr Dake to see people who are early in disease for comparison then we cant say this develops later in MS...finding it early really supports its role as causative.

But then I might wait to get treatment until more material is out, but certainly do things that help circulation in the mean time. Forewarned is forearmed! You can dispense with all the worry about gluten or other things like that supposed to help MS and just focus on circulation issues just MHO
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Re: Responses from some CT doctors

Postby zap » Fri Jul 03, 2009 10:23 pm

javaneen wrote:So then he went on to tell me that he thinks I shouldn"t really do anything with this knowledge as its cutting edge info and not fully reseached. He wouldn't want me to get into something that was going to make everything worse. He said the stent surgery is risky and might need several trials to iron all the kinks out...that its not quite as easy as "just sticking a stent in the the vein."


I am in a similar boat (31 yrs, low or no EDSS most of the time, on the fence for this treatment) and have been wondering about the stents quite a bit.

Form the post surgical reports it is clear this is not a minor procedure. I also can't help but wonder if the lack of any non-venous corrective intervention will result in a lot of stress and pressure (mechanical compression) on the stents themselves - and how long they will withstand this before failing as the veins did ("restenosis" or "stent fracture").

I did some digging around and found some papers I think are relevant to this:

Chronic Venous Obstruction: Diagnostic Considerations
(had to get the print version to get past the password, just hit "cancel" when it tries to print)

Restenosis of Endovascular Stents From Stent Compression
(I don't know if the stents in question are the same as those used in CCSVI but interesting regardless)

Interventional Radiology Essentials: Vascular Stents

Subclavian Stents and Stent-Grafts: Cause for Concern?
http://tinyurl.com/ndzjd8


I'm still not clear on the way the veins become occluded in this, but if it is mechanical as the disc anecdotes on this board suggest it can be, my concern is that the same processes that initially, gradually led to the veins developing stenosis will continue to stress the stent site - and cause problems sooner or later - is this a valid concern?

If so, will it be worth examining additional therapy, specific to the individual - to correct physical pressures on the veins, and to avoid repetitive or sustained compressive movements and postures?



PS -does anyone know if 'in-stent restenosis' due to neointimal hyperplasia is an issue in be concerned about large veins, or is that confined to stents placed in smaller arteries?
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Postby Arcee » Sat Jul 04, 2009 6:26 am

Javaneen, Zap, you may have caught my post elsewhere, but I am in a roughly similar space MS-wise and will be having the tests, and the all-important conversation with Dr. Dake on the 14th. And I definitely will report back with the details. If I can't get online right away, I will pass the details on to Cheer and she will post them.

Related, it seems like a couple of people have noted that they have Raynaud's, and I too have something that may be that (and we call it that for lack of a better fitting label). Hard not to wonder if there is some kind of connection.I don't understand the technical stuff sufficiently to understand potential linkage, but when my hands and feet get discolored at times, it does make me wonder about blood flow...
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Postby mrhodes40 » Sat Jul 04, 2009 7:43 am

, my concern is that the same processes that initially, gradually led to the veins developing stenosis will continue to stress the stent site - and cause problems sooner or later - is this a valid concern?


I believe it is a valid concern though I am not a doctor to judge it all in depth. I will ask Dr Dake about it on the return trip. but THAT is why I have said several times that if I were a person very early in disease and if my EDSS was really low and I was not moving quickly progression wise I would wait for treatment; give it a year and let some more material come out before undertaking the responsibility of managing stents for life.

treatment is likely to evolve a little with time and certainly things are learned with each patient treated. First patients often do not get what later patients do. Protocols and regimens develop with time.

Some of us can't wait though and we have to go with what is right now. Dr Dake is one of the leading endo vascular doctors in the country though and seeing him I felt comfortable that I was getting state of the art for what is available now. I have to go now or have nothing to save personally so, I went.

That having been said those of us who have been treated will be monitoring our stents and making sure they stay patent. Dr Dake asked me to find a local interventional radiologist to follow up with over time, probably a couple times a year get an MRV to see what is up with the stents. I believe that if any exacerbation or any new symptoms seem to happen I'll get in for a stent check....NOT steroids! well, then again maybe I'd get steroids too I do not know........its new!

And with regards to the stent procedure itself I think it makes a difference what kind of pathology you have. My high jugular stents and the compressed tight tissue that is collapsing the jugular is a different kind of thing than an atresia or stenosis.

Atresia is a blockage that you could take out or repair, stenosis is a hardened and or narrowed area. Stenosis is really ideal for a stent, but stents are also used commonly if you have let's say a tumor that is closing up a vein or something, so it is a common use of a stent to use it to push back other tissue so a vein stays open. That is what they are designed for.

Veins do tend to plug back up I was told by the local university professor who did my dopplers initially and they often need to be redone. The slow passive flow of the veins allows the blood to sort of sluggishly move past the repaired area so they can develop issues more easily than pulsing fast flowing arteries. Wobbly received repairs not a stent to his vein, and he was told they did not know if his repair would last 6 months or 6 years.

But to me if this is what is needed to fix this disease, so be it. I'm all in. My MIL has all kinds of cardiac repairs bypasses etc. Many older people do, so these are not unusual measures.

of course we don't know for sure if this fixes it, but I feel good about the model and I believe personally it is correct about the cause of MS. I am making that statement ahead of scientific certainty but I believe it anyway personally...
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
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Postby chrishasms » Sat Jul 04, 2009 8:10 am

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Last edited by chrishasms on Sun Dec 06, 2009 12:25 pm, edited 1 time in total.
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Postby zap » Mon Jul 06, 2009 8:46 pm

I know the jugular veins normally collapse when we are standing up, and open up again when we lie down.

http://www.ncbi.nlm.nih.gov/pubmed/15284348

How do the stents affect this? Are the jugs always open all the time now, and always the "main brain drain?" If so, will this affect the alternate venous pathway, and does it matter?

Hmm, or do the stented jugulars still collapse along its length everywhere except for the stent? If so, are the areas of veins right at the edges of the stent at risk for damage?
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Postby mrhodes40 » Tue Jul 07, 2009 11:03 am

My stent is only a few centimeters long the jugular in whole is many times longer than that. I am sure the rest of the jug is functioning normally and collapsing when I am up. I don't have any issue standing up like my head is draining too much blood way or anything like that.
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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