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


Postby blossom » Mon Jan 17, 2011 11:04 am

i do understand and very much appreciate dr. sclafani's reasoning for starting the thread. he is wanting to learn and discuss ideas that other ir's are doing and try to come up with the best results for us as patients. he and others in his field i'm sure want to concentrate on the veins only and have not before considered the anatomical deficinicies that could possibly be playing a part in some of us.

if i were a plumber or repairing the pipes in an old house i would think that i would have the best results if i first cleared any problems that could possibly cause a problem with the flow of the water. even if i repaired them properly to the best of my knowledge and there is a consistant outside pressure or obstacle that would eventually start to compress that pipe or dent it and mess up the flow all my experienced good work could be in vain. i might have been better off to have gotten the opinion of a carpenter who specialized in getting the main structure straightened up if possible first. then it would of course benefit my knowledge and results as a plumber.

bottom line, dr. sclafani is doing and always has done a great job for ccsvi and all of us. and i hope to see a lot more dr.'s joining his thread. but, to not take into consideration dr. flanagan's knowledge -- i think it could compliment each other.

we are all suffering with symptoms called ms. but i think more and more it will prove to be different causes and different fixes. so, i hope these doctors really would share and work together. don't rule out possiblilties just because all the bells and whistles are not there that our transparent world has come to be. "it hasn't been working"
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Postby Cece » Mon Jan 17, 2011 11:14 am

I consulted Jimmylegs. Her view was that all are invited to TIMS. As long as the rules are followed. So give yourself a moniker, and jump in the pool. The water is mostly warm and sometimes hot.

Sometimes hot!

HappyPoet, no, I do not use a chiropractor. I gave it a try, I thought it helped some, but then experienced some bad MS symptoms immediately upon getting up from the last session I ever did. It took two weeks to resolve, and since my MS is usually very stable, this has kept me from going back. My son was five, not an infant, when I took him, for one examinatory session in which the chiropractor did not find issues and did not continue treatment. Part of my devotion to CCSVI comes from concern for my son who is the one of my three kids showing symptoms similar to what I showed in childhood. I can go get treated, I can't go get him treated....

I would take back the "a post or two" part of my previous comment, that was on the obnoxious side. Eric593, I agree with everything you said. Blossom, nothing but respect for you and everything you've gone through and the benefit you are personally finding with UCC.
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Postby frodo » Mon Jan 17, 2011 1:46 pm

Cece wrote:I am happy to read a post or two from uprightdoc on the spinal or chiropractic side of a case, but he has left the case behind and is arguing his theory, which is better suited to his thread and not this one, in my opinion.

I agree. Uprightdoc is trying to defend his theory though nobody has tried to attack it in this thread. But we should understand that he has been attacked several times in several places and it is normal to overreact in these conditions.

Anyway his last posts are more focused in the case and I think it is a good thing to have his point of view.
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Postby HappyPoet » Mon Jan 17, 2011 5:07 pm

Cece, for many reasons, I share the commitment to CCSVI as deeply and as passionately as you do, most especially because of all the children. Your chiropractor being able to relieve your worries about your son's condition must have been a wonderful feeling, and as a fellow mother with MS/CCSVI, I do understand your concerns.

BUT I also do believe there is much hope for our children. Why, as we type these very posts, the doctors at ISET are learning from each other and moving CCSVI forward at lightning speed. There's more hope now than there was two years ago -- much more hope, I'm happy to say :)

I just thought of this idea... at your upcoming appointment with Dr. Sclafani, you might want to bring with you a CD of your X-rays for him to read since there seems to be a close association between your spine and spinal cord -- I'm thinking of your chiro benefit followed by your two-week flare.

Compassionate, caring, and concerned colleagues who closely cooperate and collaborate can contribute clarity and context to CCSVI cases. [not J, +13]
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Postby drsclafani » Mon Jan 17, 2011 9:57 pm

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:

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
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Postby drsclafani » Mon Jan 17, 2011 10:08 pm

eric593 wrote:IMO, I just think that Dr. Sclafani did not intend the discussion to be a dissection of all anatomical deficiencies but wanted it narrowed to an identification of vein issues and how to fix them. I thought he hoped to use the web to collaborate with other doctors in the diagnosis and treatment of unique vein issues so that the learning curve could be shared and expedited among treating IR's, doctors (and we) could learn about vein presentations before one actually presented in person for help in every IR's office.

In that regard, while Dr. Flanigan's input may be valuable here on TIMS elsewhere, it is somewhat distracting on that thread because it goes off track of the focus on the veins and how to identify and treat unusual vein presentations - his forte and expertise is anatomy and alignment.

I have great admiration for Dr. Sclafani's ability to "dumb it down" for us laypersons all this time after now seeing the much higher level of discourse being engaged in now between the doctors on that thread. I appreciate all the more his patience here all this time in trying to teach us and answer our questions in a way that could be understood by a non-medical audience.

Thank you eric.

i want to clarify clearly my comments about dr flanagan. Eric is correct that my intention, perhaps not stated clearly enough, was to discuss the CCSVI as described by Dr Zamboni. Doctors treating ccsvi by balloon angioplasty have many issues to address. Balloon size, pressure, stents, anticoagulation, interpretation of the venograms, vofollow up strategies,diagnostic schemes, and much more. I spend a great deal of time creating those images so that they can be discussed. I want to know what my peers think about the venograms and how they would approach treatment. 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.

the points about rheumatoid arthritis were great thoughts.

but it doesnt help ME when the discussion stays on the spine. Dr Flanagan could start his own thread on treatment if he wanted.

But to be fair and honest, he was invited and i never chased him away. i certainly meant him no DISrespect. I guess i was selfish in wanting more discussion about the venography and IR treatment.
Last edited by drsclafani on Tue Jan 18, 2011 8:10 am, edited 1 time in total.
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Postby Cece » Mon Jan 17, 2011 11:57 pm

When you say that it is difficult getting doctors to participate, is there anything we as patients could be doing? Is this thread detrimental to getting doctors to participate in the other thread? Perhaps the doctors would prefer that their responses not be discussed, that might be quite valid.
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Postby MrSuccess » Tue Jan 18, 2011 12:25 am

I think it best ..... to keep the different medical professionals .... on their own separate platforms.

I see the merit and process each brings to the table.

It's like watching 3 people putting a puzzle together ..... better to build your side ....... and work towards the middle. :idea:

The information all of these fine medical professionals are presenting to TIMS ..... is wondrous.

Keep up the good work .

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Postby civickiller » Tue Jan 18, 2011 12:29 am

Cece, thats one reason why i didnt mention any names or procedures until someone else mentioned it, to keep name calling and finger pointing down. and also my chiro did tell me that i might get a relapse of all my exacerbations because things might start to function again that havent worked in years, like nerves so i guess its a shock for the body. im lucky in a sense that, ive only started to lose function in the past 3 years so my nerves will remember easier vs someone who hasnt walked in decades. ive only had good things from my adjustments

i think the dr's working together is good because with their different specialties, they may bring in something that the other dr's never thought of.

I think of it like building a bridge. 5 guys trying to build a bridge by themselves will take forever and if one gets hung up on something, it will never get finished vs 5 guys working together to build 5 bridges, i believe will get done faster with 5 minds together
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Postby blossom » Tue Jan 18, 2011 12:46 am

cece, thanks, i want to think we are all trying here to reach the same desired end. i don't know if chiro. is the answer for everyone-but it should not be ignored. and for some it will be the answer and it has everything to do with a lot of our symptoms.

i want to clarify that at this point i am earyl on in my treatments. so to say i have benefits yet would not be accurate.

what i want to say is that after my fall i went chiro.'s-but just as with ir's or other docs there just are some that are better than others and some that are more specialized etc. unfortunatly, my initial problems were not treated properly by chiro.'s i found-because for yrs. i thought they were all the same "but they are not". my thoughts and questions since day 1 about my symptoms were ignored by neuro.'s. and i might add ignored by vascular dr.'s i tried to get to check me out. basically, just put in the ms box and sealed.

i can honestly say that for the first time since my quest for answers dr. flanagan has helped immensly to get me headed in the right direction. he helped me find a very good chiro. who is in tune and in touch. i am very complicated at this point and this is a long story. with the ending far from a good guess but some hope and time will tell.

had i been treated properly early on by chiro.'s and found a neuro. that would have paid attention to my questions and symptoms and not wrote me off as a person in denial or a nut case or been treated less than human by a vascular dr. i feel i would not be in this situation right now.

sadly, the early on things are really progressed that would not have gotten to this point structually if treated properly or at least give me more of a fighting chance. so, going at it slow and hoping it does get straightened out enough to make a, i'm only addressing from the neck down.

now, the neck, well, a lot of unanswered questions there at this point. but, at least the chiro. and dr. flanagan can show me the road map of destruction i have been going down. can i get it fixed at this point??? get help-hopefully. is it too late - i hope not. i feel very lucky to have found dr. flanagan and chiro. craig weimer dc,ccsp,dabco-- who is in my hometown.

do i believe that all this could mess with nerve conduction and blood flow--i most certainly 100 per cent do. if any layman or dr. truly looked at my x-rays and said differently. i'd say they are blind or don't give a crap. " oh i forgot" some of them did. all these veins and nerves are right there in that small space trying to function in a train wreck.

and yes, do i still think ccsvi has merit--yes i do. remember my jugs were stenosed and got no relief and got the bonus numb leg still hopeing i don't develope clots or other bad stuff. but, common sence shows me that you could balloon the hell out of some of our veins but if there are things putting pressure or causing stenosis that could be cleared up first what's the point? and, if you can get these things cleared up first you may not need ballooned. we are all different.

do i believe this is the answer for everyone-no-but you owe it to yourself to check it out--but with the right chiro.'s and that's a tough one-but at least we have some more knowledge and guidance by a very qualified and shareing and careing dr. flanagan who as the other great doctors on this site sincerely want to help us.

how can something be ruled out when you haven't checked it out?

cece, you and others and even myself included who had tried chiro.'s with no positive results were possibly not the right ones to get the job done right. god, how i wish i was at the beginning and knew what i know now. oh, i forgot, i did know, but i didn't know the right ones to fix it. and nobody was listening.

and not letting the neuro.'s off the hook at all in my case as yet even with questions i had and pointing things out that they ignored in my book. better watch it, with still unanswered questions a good neurosurgeon may be on my list to find.

the point being i wish there would be that magic pill, that silver bullet i'd race you guys to get in line. but, unless we keep pushing for answers whether it is ccsvi, chiro, or both and the hyperglycemia diabetes connection makes sence for some. we know for sure the blood flow is involved. so whaever it takes. and i hope all the dr.'s involved can keep an open mind.

--now in all fairness the doors are opening a little-hopefully there are open minds and all sorts come in
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Dr. Sclafani

Postby RN » Tue Jan 18, 2011 8:29 am

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.
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Postby Cece » Tue Jan 18, 2011 9:21 am

RN wrote:If your intent is truly to engage your peers, that is the place to reach them.

The thing is, Dr. Cumming is here and phlebologist and Dr. Sclafani since March of last year, and there have been rumors of IRs who are reading here but not posting.

I have thought that the incredible images he's put together in his answers thread are almost wasted on us, we are not professionals, but it is fascinating to be allowed to follow along. The doctors' thread can serve a double purpose, both discussing among themselves and allowing us to learn without getting in the way. If uprightdoc's contributions are getting in the way and he is kindly asked to limit himself, I would hope he would respect what's being attempted.
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Postby concerned » Tue Jan 18, 2011 11:07 am

I think trying to tie CCSVI to such things as TCM, Applied Kinesiology, and other unscientific alternative medical practices can only hurt your cause.

Postby NZer1 » Tue Jan 18, 2011 12:39 pm

Hi Everyone, I have been watching the comments on the Dr.s thread and at times think that heads need to be banged together.
As PwMS I am concerned at the lack of ability in basic communication. No wonder PwMS feel so frustrated at the Medical Community.

Dr. S as I see it your purpose is needing to be clarified. My understanding is that you want to investigate the MALFORMATIONS that are found in CCSVI.

Dr F as I see it you are wanting to look for all the possible causes of de generative diseases. This case study would need a wider diagnostic tests catch to clarify what the patients sx and dx are and then asses what is treatable, costs and measurable outcomes can asses each approach to wellness.

Dr C and others, good to see you here.

As Drs, communication and especially listening skills are paramount for patients to feel heard.
Competition between individuals (Doctors) is a common known problem in the theatre and between facilities.
Neurologists are having difficulty understanding what CCSVI 'malformations' are, and they are not being taught the difference between veins that have malformations and valve issues seen in CCSVI and other vascular issues, which has them rejecting CCSVI and Vascular involvement because there is a COMMUNICATION problem rather than a scientific conflict.
CCSVI treatment is not the only reason for MS symptoms to change for some PwMS, chiropractic adjustment can also change MS symptoms for some PwMS.

As Medical Specialists there will be a need to interact and communicate more about the health changes that can happen for PwMS when various methods are applied.

Exemplary communication skills will be paramount.

Lets start over with what has been learnt so far.

Dr. S I believe you want to talk on the thread about this case from an IR's prospective because you cannot find access and there may be some internal problems in the veins that are causing flow problems.
Dr F at this time there is not enough testing (Xrays etc) for your insights to be understood or investigated. They should be looked at so that if there is restenosis issues and or no flow, or little flow improvement, the full gambit of understanding of possible causes and known treatment options can be trialled on the patient.
The reasons for varying outcomes could be better understood at the same as learning about the many causation elements in MS.

In the same way that Dr. Zamboni has had his theory challenged by people not applying the correct methodology, this approach by Dr. S is about communicating what is the purpose and what is the process.
What is it you want to learn Dr. S, and what is it others can offer.
Can there be more than one learning?

Keep up the good work everyone,
Regards Nigel.
MS hon.
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Postby frodo » Tue Jan 18, 2011 2:58 pm

MrSuccess wrote:I think it best ..... to keep the different medical professionals .... on their own separate platforms.

I am afraid that you are right. Phlebology discussions are a very specific subject and maybe other doctors like a otorhinolaryngologist or a physiotherapist cannot contribute to the specific cases and problems that Dr. Sclafani wanted to address.

I am sorry because I was me who asked Dr. Flanagan to contribute to the thread putting him in the pressure to contribute into something too specific. I was expecting a wider discussion, not something this specific.

Maybe this can be a lesson for the future. I think that several threads for different specialities and a general thread for more general questions would had work better.
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