Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

bed

Postby wobbly » Thu Apr 23, 2009 12:34 pm

bed tilting is not gonna work--that much i can say --it might help or after this problem is fixed to maintain the results/ i have seen some of the dopplers this is real blockage and some what appears 2 me 2 be somewhat heredity related[ rumours ]from big shots. but this is a simple problem 2 correct and why not but drug companies will not be backing this which will slow down the process/ STAY STRONG ALL 8) 8) 8)
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Re: bed

Postby cheerleader » Thu Apr 23, 2009 1:07 pm

wobbly wrote:bed tilting is not gonna work--that much i can say --it might help or after this problem is fixed to maintain the results/ i have seen some of the dopplers this is real blockage and some what appears 2 me 2 be somewhat heredity related[ rumours ]from big shots. but this is a simple problem 2 correct and why not but drug companies will not be backing this which will slow down the process/ STAY STRONG ALL 8) 8) 8)


Thanks for checking in again, Wobbly. Your words are especially encouraging. I've wondered if this will turn out to be a congenital defect in the veins. It would make sense...

We're up to Stanford on Monday. Can't wait, but am very nervous. I'm proud of Jeff for doing this. He'll be in the MRI machines for 3 hours (head, neck and torso) and will also do the ultrasound and finally venography (if needed) It will be a very long- not very fun-day. AND he can't have coffee!!!

I'll make sure to discuss IBT with the docs, Andrew. I've already discussed the endothelial program I developed with the vascular dept there, and they said that while it was a great program, and would increase circulation and improve health....it would not remove stenoses.

My hope and prayer is that if we can find this blockage in enough people, we can interest university vascular depts. to try and replicate Zamboni's findings and to write up their research. We can go around big pharma, thanks to the power of the internet- and bring together docs from around the globe. University vascular depts typically do not have as much clout as neurological depts. because they do not bring as many clinical trials and grants and $ to universities. I'm also hoping we'll be able to find donors for Zamboni's non-for-profit Hilascere Foundation, and begin other non-profit organizations to encourage vascular doctors to provide services to MS patients. Much to be done, but I am getting WAY ahead of myself. First things first....

I'll be sure to post next week with the results...either way-blockage or no blockage- I'll give you guys the scoop. For those who do so- please keep Jeff in your prayers.
best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Thu Apr 23, 2009 1:58 pm

Wishing Cheers and Jeff a productive and safe journey on Monday! Holly
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Postby Artifishual » Thu Apr 23, 2009 2:46 pm

AC, good luck and be safe. I will sure be praying for you and Jeff.
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Postby mrhodes40 » Thu Apr 23, 2009 4:49 pm

Yay Cheer and Jeff! Prayers all around! I am very excited for the response you get.... Now I know how you felt waiting for me :wink:

Venograms! we all thank Jeff for doing this for research. We all will benefit from it.
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Re: bed

Postby AndrewKFletcher » Fri Apr 24, 2009 1:02 am

cheerleader wrote:
I'll make sure to discuss IBT with the docs, Andrew.
AC


Cheer can you please print of the photographs showing the improvements in Alun's varicose veins for the consultants to show the effects of IBT. This will help them to understand what you are saying and asking about IBT. Take care they don't think you are tilting the bed with legs up as this is the normal practice, that incidentally does not resolve the varicosities.

Andrew
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Postby Loobie » Fri Apr 24, 2009 4:59 am

Good luck you guys. You are in my prayers for sure.
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Postby cheerleader » Fri Apr 24, 2009 6:54 am

I've received the following e-mail from Dr. Marian Simka-
We have been corresponding, and he has given me permission to post the following:
Dear Joan,
You can find attached translated abstract that has been submitted for a vascular congress in Poland. Since no copyright apply - you can post it at the MS forum.
I am coordinating this preliminary study. The assessment of deep cerebral veins was usually difficult, therefore only results of extracranial veins are presented. Consequently, there are substantial differences between our and Zamboni's results. Still, the main message is the same - all patients were demonstrated pathologies of veins in the neck.
The next step will be phlebography followed by stenting or open surgery, and the department is preparing documents for ethical committee to conduct such treatments.
regards
Marian Simka


Here is the abstract:
Flow disturbances in internal jugular and vertebral veins in patients with multiple sclerosis.

J. Kostecki et al.; Department of General and Vascular Surgery, Tychy, Poland

Background. Recent discovery suggests that multiple sclerosis can be actually triggered by pathologic flow in the veins draining the central nervous system. Still, for the time being, data confirming this concept comes from one center (Ferrara, Italy). This study has been done to confirm the findings of Italian researchers.
Patients and method. There were assessed 6 patients with confirmed diagnosis of multiple sclerosis and 3 patients suspected to suffer from this disease (yet unproven diagnosis). All patients were performed color Doppler examination of their internal jugular veins and vertebral veins in the neck. Examinations were done in lying and sitting patients. There were assessed: diameter of internal jugular veins, position-dependent change of diameter of these veins, presence of stenoses in internal jugular veins and vertebral veins, and presence of pathological refluxes in these veins.
Results. All patients (100%) were found at least one abnormality and 5 patients (56%) were found at least two abnormalities. There were found: occlusion of one of internal jugular veins - 2 patients (22%), stenosis of one of internal jugular veins - 4 patients (44%), stenosis of both internal jugular veins - 2 patients (22%), reflux in internal jugular veins - 2 patients (22%), stenosis of vertebral veins - 3 patients (33%), reflux in vertebral veins - 1 patient (11%).
Conclusions. Our preliminary results confirm finding from Ferrara. Pathologies of internal jugular and vertebral veins are typical in multiple sclerosis patients and individuals suspected for this disease. No universal anatomical pattern exists – on the contrary, a whole spectrum of stenoses, occlusions and refluxes can be found. It should be suspected that causal relationship exists between pathologic flow in the veins draining the central nervous system and multiple sclerosis.

English translation of abstract submitted for 6. Congress of the Polish Phlebological Society, 28-30th May 2009, Warsaw, Poland


Thanks to Dr. Simka for taking up this research and performing the doppler testing. It appears the inability to assess the deep cerebral veins may account for the difference in his results of 2 abnormalities in Zamboni's research. I also do not see mention of the azygos vein, and it appears that only veins in the neck were included. The other important difference is that Simka looked at 3 probable (unconfirmed) MS patients, and found reflux and stenosis. This also changes his results, since Zamboni only tested confirmed MS patients...and may also account for the less than 2 results...however, this is an extremely important discovery, because it can be linked to the onset of the disease process. CCSVI may indeed be causative, not resultant. Every patient showed signs of reflux and stenosis in the neck-

The next step, as he says, is "phlebography" which is the venography to see the actual vein structure.
Thank you for permission to post this very important research, Dr. Simka-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Fri Apr 24, 2009 12:51 pm

Wow. Thank You Dr Simka!! Fantastic work! as Cheer says the really super-duper amazing critical thing is that even people with only probable MS actually had these changes. This means this is there at the earliest time frames for MS, before ther eis much damage.

This paper also means that Dr Zamboni's work has been replicated by a second researcher of course and considering the robust quality of Dr Zamboni's work--blinded, controlled, large numbers, 100% concordance, self replication, and building of concept from hypothesis to dopplers to venograms proving concept--this is hugely significant. WOW!

But I want to caution, because I get overly excited, that it is of course still not widely available; even if we consider that we might get dopplers, there is no currently accepted as "proven" treatment for MS in the veins. it's so exciting though it is tempting to think this is "it" and how/when can I get it fixed?

That having been said, Cheer's doc said to them that if they assess Jeff's headaches and find stenoses they can treat them rven now. I have no idea how widely held that point of view would be, or if lots of people might be able to work around it and get at least dopplers soon, or if we'll have to all wait. I am talking to my vascular guy today so we may discuss that possibility. I hope!

I want to point out something else for perspective, they had a really hard time doing the deep cerebral vein reflux but were able to do the neck veins and see what was there.

This was true for my doctor too--a professor of vascular surgery at the University close to me and head of the department.

We had no trouble seeing vertebral vein reflux in me, we even saw the 3rd ventricle, but no go on the deep cerebral veins. We got nothing at all there didn't even pick up the vein, let alone assess it for reflux.

This is worth mentioning because if we get hung up on the "2 abnormals" or if we attempt to get treatment early and lead the vascular person we consult to believe that is what is needed for "proof" of an MS venous problem we may be setting up to fail.

Cure's doctor was a neurovascular doctor and they did not see anything in the deep cerebrals either. I do not know but I am begining to wonder if even for the neurovasc it is a rare thing to check for venous reflux, like maybe they all usually are looking only at arteries for aneurisms, or arteries from hemmorhagic stroke. These are not venous things, but I don't know the truth of that. It'd be interesting if someone found out if checking deep cerebral veins for reflux is commonly done by neurovascular docs............

But WOW!!! I am so relieved, facinated and amazed.

The biggest thing to me right now is believing that my kids will live in a different world if they should be diagnosed with MS. That is worth everything to me :D :D :D
edited I type to badly :-(
Last edited by mrhodes40 on Fri Apr 24, 2009 5:22 pm, edited 3 times in total.
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Postby Loobie » Fri Apr 24, 2009 1:52 pm

It's huge all the way around! However, I agree that the headache angle is one to pursue. As far as the Dr.s are concerned I'm sure they want to get paid. If that's the case, then should not fixing of the stenoses alone be enough to warrant surgery, or do you have to have some other thing that the stenoses are causing?
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Postby Artifishual » Fri Apr 24, 2009 1:57 pm

i just emailed this info to my dr. so hopefully he will respond soon with posotive words, good luck all....
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Postby mrhodes40 » Fri Apr 24, 2009 2:12 pm

Arti; do you have a vascular doc or are you braving the neuro storm?

Lew: I don't know at all; I have not had much involvement in billing. They do get really good at knowing what can be covered and what not though...........did you find a vascular doc to talk with you?

In a way I envy you all deciding if you might pursue this now vs when I got tested ---5 weeks ago now!---lol--- but we know so much more by sharing on this board. You'll know more as you attempt to go ahead with this than I did. Imagine I was sitting there hearing the VVs are too small to fix.........only when I got home did I look at the papers and realize that if the VV is teh damaged thing it is the azy that is repaired; big difference! but too late to talk about what the meant for possobilities.

we lift each other up :wink:
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Postby Artifishual » Fri Apr 24, 2009 2:36 pm

My neuro specializes in vascular neurlogy, so i am going to go with him. I should have sent this to him along time ago. :?
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Postby mrhodes40 » Fri Apr 24, 2009 5:05 pm

Lew on reflection I remember that Cheer posted that if they find a stenosis in a central vein like the azygos it has to be repaired because it is attached to so many vital organs you can't leave it damaged like that according to her doc comments.

Maybe that would mean that once a person paid for dopplers out of pocket and proved something was amiss they'd HAVE To cover repairs? I do not know for sure it might be a very individual thing.....

both for the doctor involved and for the insurance. :?

but gosh how much more of these papers etc before it is all but the facts of life? I mean if we get another two papers showing that 100% of MSers have these venous abnormalities before next winter when Dr Zamboni's team releases their results and if the results are good, does it seem to you guys it would be pretty hard for insurers to deny? It seems to me like it might get there by then...

about 10 years ago a guy wanted an ASCT for his MS and he took his story to the news as his insurance had denied it, but once they were on the evening news as Creepezoid insurance they relented and paid for the procedure. That was a long long time before they even had many studies at all; it was very experiemntal at that point. I think of that often and wonder if people will be able to just make the case based on the available research as that man did and win through.

As an additional coverge story, apparently Johns Hopkins is getting insurance to cover hicy even though it is unproven too, so that again suggests enough evidence may be enough if the patient is pushing for it.
Last spring when I talked to JH and they said medicare was covering and insurance would cover in pre approval if they, JH, offered the available resarch on it, jh had published work on 29 patients. I asked Carrie Treker about the numbers of patients and she confirmed it had been very small. They had had some other supportive research to add to it, but not enough to call it proven. and they had NOT treated anything close to 100 people.

The advantage that hicy idea has is that it is the "generally accepted" hypothesis about MS: we all "know" MS is autoimmune, and we are already treating people for that, so it is not a leap to go to hicy.

Assuming success of the liberation 100--doesn't tath sound cool "The Liberation 100" Wobbly that's you!!-- it seems like this should be covered but I'm talking out my ear I don't know, specualting for fun.

This is a blerb out of a site on medicare reimbursement--I chose carotid endarterectomy as it might be similar cost wise to what we'd need because it is a repair of one artery with a stent

On March 18, 2005, the Centers for Medicare and Medicaid Services (CMS) will determine whether to cover carotid stenting. 1 Under the terms of a proposal that CMS issued on December 17, 2004, 2 carotid stenting would be covered for symptomatic patients with stenosis of 70% or more who are high-risk candidates for carotid endarterectomy. Only stenting systems with embolic protection devices could be used in procedures eligible for reimbursement. Reimbursement rates will vary based on the usual CMS adjustments, but the national average might be roughly $1,100 for physicians and $5,200 to $8,200 for facilities. 3

In order to obtain reimbursement, providers will have to demonstrate competence in performing the procedure, evaluating patients, and providing follow-up care. The mechanisms that would be used to determine competence for physicians and facilities have not been specified, so medical specialty societies are expected to propose guidelines and/or plans for the necessary programs

from here http://www.imagingeconomics.com/issues/ ... -03_14.asp

You can see coverage is a little bit picky--people don't just always get paid in this case there has to be a 70% blockage or no dough.

The good thing, as much as I hate to say it, is that it is an amount I can imagine coughing up personally should it be in that same range. that figure was from 2005 so not the same today though.

The venogram itself is likely a separate charge and likely pretty substantial itself, I can imagine at least a couple grand.

But a final good thing: at that price, considering the cost of stem cell transplants ---geez even copaxone at 25 thousand a year!-- it looks like a bargain for the insurance company. :idea:

I'll take two........... :wink:
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Postby cheerleader » Fri Apr 24, 2009 6:19 pm

I have a feeling the difficulty in assessing the deep cerebral veins is part of the reason Dr. Zamboni wanted us to wait until he had set up training programs for doppler evaluation. This is a relatively new area of research...only in the last 5 years have technicians been using TCD of jugular, cerebral and vertebral veins in relation to neurological disease.

I'll be sure and ask questions regarding insurance and protocol for requesting reparative surgery when I'm there...from what the assistants have told me, our insurance OK'd all the tests...and if venography is needed, they'll cover that, too. Our doc specializes in venous stents, so he'll know how to go about this. We are approaching the testing from the vascular headache avenue, since that's a big part of Jeff's MS. His leg pain may also be related to edema and blockage, and that's how we got the full torso testing. I think it helps your case if you have some sort of inkling of vascular issues- pain, swelling and edema. Dermatological signs such as petechiae, varicose veins, broken blood vessels, cherry angiomas are all good signs for testing, too. I'm afraid saying you're doing doppler tests for MS will be probably be denied (for now) by insurance.

Arti- don't worry about having waited until now to talk to your doc. As Marie said, each time someone else is tested, we learn more. Hopefully our experiences will benefit each other going forward.

Marie's right- this is a bright day for our kids....if my son shows signs of tingling, depression, bad headaches...it's off to the vascular doctor for a doppler workup. We won't wait 20 years like my Jeff did.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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