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

Post by Cece » Sat Apr 18, 2015 12:54 pm

Do You Really Have CCSVI?
Most MS patients have dysautonomia, not CCSVI. Learn the difference.
That's an ad that comes up when CCSVI is googled. It leads to Dr. Arata's webpage.
I believe it is erroneous to say that most MS patients do not have CCSVI.

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Rosegirl
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Re: CCSVI ad

Post by Rosegirl » Sun Apr 19, 2015 5:14 am

I think it's great to question what our "MS" really is. If you put 500 MS patients in a room, you'd still not have much of an overlap of symptoms, let alone causation. Cog fog and gait problems, heat intolerance and bowel issues. And the list could go on and on. The only pattern I see is that many different kinds of practitioners say that something is wrong somewhere between the ears and the collar bones.

Chiropractors like Rosa say misaligned bones at the top of the spine could be where the problem is. The radiologists say that blood flow is impeded, either by problems within veins or other body structures that are pressing on or somehow constricting the veins. And now some doctors are using FONAR MRIs for scan of patients who are standing (not lying down!) to see if there is an abnormality in the flow of spinal fluid.

I talked to Dr. Arata a few years ago after 3 CCSVI procedures (done by other doctors) didn't get any results. At that time, he recommended no more CCSVI treatment but to look into OA chiropractic treatment and to have a dentist check for TMJ problems.

I think it is important as people seeking relief from chronic condition that we keep an open mind about various types of treatment. If CCSVI sounds great but you can't afford it, maybe OA treatment is a relatively cheap way to try another approach. If you had a case of whiplash or braces, try a holistic dentist (not a general dentist).

The frustrating part is that we don't have a one-size-fits-all answer. But we are finding growing consensus from various types of doctors of where the problem might be. It's nice to have hope that doesn't involve drugs with a long list of side effects that include death.
Last edited by Rosegirl on Tue Nov 01, 2016 4:06 am, edited 1 time in total.

Cece
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Re: CCSVI ad

Post by Cece » Wed Apr 22, 2015 11:13 am

If you put 500 MS patients in a room, you'd still not have much of an overlap of symptoms, let alone causation.
Fatigue is the most common symptom in MS patients and it's poorly understood and lacking in treatment options.

Solve the fatigue, solve the MS? CCSVI could explain fatigue (in addition to other factors such as depression, exhausted neurons, poor sleep, etc.)
The frustrating part is that we don't have a one-size-fits-all answer.
Most people try multiple paths (ccsvi, drugs, chiropractry, etc.) PwMS are fighters, that is for sure.
I can't imagine a one-size-fits-all, because even if ongoing damage is halted, there is already damage done, and we all want the damage to be undone.

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Quest56
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Re: CCSVI ad

Post by Quest56 » Wed Apr 22, 2015 4:52 pm

Cece wrote:Fatigue is the most common symptom in MS patients and it's poorly understood and lacking in treatment options.
There is not even a common definition of what "fatigue" is. It is experienced in many different ways. Some experience it as a profound need for sleep, some experience it as poor physical stamina, some experience it as mental exhaustion, some experience it as physical exhaustion, some experience it as a combination of the above...

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Re: CCSVI ad

Post by Cece » Thu Apr 23, 2015 5:46 am

http://qjmed.oxfordjournals.org/content/101/1/49
From an article titled, "A medical definition of fatigue in multiple sclerosis":
Strict definition is crucial to scientific enquiry, without clear definition there can be no useful measurement.
In summary, fatigue could be defined as reversible motor and cognitive impairment, with reduced motivation and desire to rest. It could appear spontaneously or may be brought on by mental or physical activity, humidity, acute infection and food ingestion. It was relieved by daytime sleep or rest without sleep. It could occur at any time but was usually worse in the afternoon.
That definition could be built upon and researched. A true MS fatigue drug could be a blockbuster. C'mon Big Pharma...

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cheerleader
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Re: CCSVI ad

Post by cheerleader » Thu Apr 23, 2015 8:14 am

Dr. Arata figured out a way to charge $10,000 for venoplasty without having to repair the vein or venous flow....
enrages me, but he's out their promoting and publishing and people seem to be buying what he's selling. I will never understand.
He's now a functional medicine doctor, and is at least helping patients look at nutrition, exercise, spinal alignment, etc. That part is a good thing. There is so much patients can do for themselves by eating whole foods, exercising, addressing spinal issues, reducing stress, quitting smoking.
Still, he's never addressed the fact that there is already an FDA approved electrical vagus nerve stimulation implant which is prescribed for autonomic dysfunction---and it delivers a continuous pulse to the vagus nerve, rather than a one time bump from a catheter balloon. It's covered by insurance, it's an ongoing treatment and it won't cost 10,000 bucks. I met a woman at a neurology conference who had one implanted in her neck, and she was singing its praises...changed her life.
argh.

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Re: CCSVI ad

Post by Cece » Thu Apr 23, 2015 9:18 am

YES ... everything that Cheer just said.
There's another ad that comes up when CCSVI is googled, and that's this one:
CCSVI Treatment‎
Ad http://www.ccsvitampa.com/‎(727) 474-4158
First and Most Advanced Outpatient Center in Tampa Florida
I don't see any issues with that one.

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Rosegirl
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Re: CCSVI ad

Post by Rosegirl » Thu Apr 23, 2015 5:38 pm

I don't understand such strong and negative views of specific doctors that haven't treated you. Cheerleader, do you have a medical background that qualifies you to evaluate Dr. Arata's methodology and pricing? Why would you imply that one woman's successful treatment would necessarily work for others?

I certainly don't have any medical credentials, and Dr. Arata has not treated me. As a matter of fact, he specifically declined to treat me because he was concerned that the previous procedures might have already damaged my veins. But he has reviewed all my reams of medical data, called me and sent me numerous emails suggesting non-CCSVI approaches that might help me -- and he did it all without charging me anything, even when I insisted that he should bill me for a consultation.

I also don't have anything bad to say about the doctor that did two CCSVI procedures on me that got no results, but they each cost a whole lot more than $10,000.

We patients are often desperate and willing to gamble. The fact that the physicians we chose did not achieve the miracle we hoped for doesn't imply malpractice and/or greed. I am grateful that a handful of doctors are still looking into this. I suspect that a number of our original CCSVI proponents have moved on to treat other conditions because they did not yet have enough hard science to guide them to a higher success rate.

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cheerleader
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Re: CCSVI ad

Post by cheerleader » Sat Apr 25, 2015 8:24 am

Hi Rosegirl--
it's me, Joan/cheer. We've corresponded over 5 years on this site. I don't have MS. My husband was first treated at Stanford, when I brought Dr. Zamboni's research to the US. I've been to many medical conferences and discussed the research with the treating doctors, including Dr. Zamboni. My husband's treatment was covered by insurance and I began the "go local" campaign, after seeing how many people were becoming medical tourists. I was really concerned about this, since venoplasty is not a one time treatment, but requires an ongoing relationship with a physician for followup and aftercare. My opinion comes from someone who has been saddened to see how this research has morphed from repair of venous malformations into some kind of instant miracle cure for "patients willing to gamble." (your words.) My husband wanted his venous malformation (a stenotic dural sinus and jugular vein) repaired, and it was. But it took a couple of procedures, and life changes on his part. Not easy at all.

Medical procedures, (like the woman I met with her electrical vagus nerve stimulator or my husband's endovascular stenting of a stenotic dural sinus) are covered by insurance when the FDA and insurers decide there is enough medical literature to back up the procedure. That's how it works.

If we do not take CCSVI research back into the realm of measurable, quantifiable improvements in venous hemodynamics and cerebrospinal fluid flow improvements, it will never be covered by insurance for others. That's why the ISNVD is going back to square one and establishing the basic science of cerebral perfusion. http://www.isnvd.org
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Rosegirl
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Re: CCSVI ad

Post by Rosegirl » Sun Apr 26, 2015 7:20 am

cheerleader wrote:Dr. Arata figured out a way to charge $10,000 for venoplasty without having to repair the vein or venous flow....
enrages me, but he's out their promoting and publishing and people seem to be buying what he's selling. I will never understand. . . argh.

cheer
Cheer,

I have also dealt with a number of doctors who are the pioneers in the CCSVI field, and it's bad/confusing enough when they trash each other (and they certainly and repeatedly do!). But at least they can cite specifics of why they are skeptical of other practices.

My question was only about what medical background YOU have to judge Dr. Arata so harshly on his methodology and his pricing. Dr. Arata has his share of patients who speak highly of him and his scientific advances. What medical training do YOU have that suggests that he is any less honest, dedicated, etc., etc., than the doctors of whom you speak so highly?

Look at what Dr. Hubble says or Dr. Arata about the negativity they face from their colleagues. There's room for honest disagreement among professionals. Patients (and their loved ones) are certainly allowed to have their opinions as well, but they should have appropriate qualifications when they criticize medical procedures.

I had one IR who did a CCSVI procedure on me early on in the CCSVI days. He had no people skill at all dealing with patients and it was appropriate to tell everyone about that. It wasn't until another early CCSVI proponent reviewed the films from my procedure that I learned that the first guy couldn't find a jugular vein that was evident to other kinds of radiologists. THEN I felt qualified to say that the first IR was negligent.

So again, why do YOU think Dr. Arata is not doing the best he can for his patients?

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Re: CCSVI ad

Post by Cece » Sun Apr 26, 2015 10:48 am

Rosegirl wrote:So again, why do YOU think Dr. Arata is not doing the best he can for his patients?
He performs angioplasty in the jugulars and the azygous vein regardless of whether there is a blockage there. There are risks to angioplasty and I believe a doctor should do it only in the presence of a diagnosed blockage. The nearly thirty year history of angioplasty is in regards to its use in clearing blockages.

(I have found Dr. Arata to be charming and pleasant in all interactions. Our differences are all in the details.)
Last edited by Cece on Sun Apr 26, 2015 11:00 am, edited 1 time in total.

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Re: CCSVI ad

Post by MrSuccess » Sun Apr 26, 2015 10:59 am

....... an interesting debate .... and different opinions and experiences all add to
the understanding of CCSVI. But let's NOT eat our own. Frustration with the slow
advancement of CCSVI , as an accepted medical procedure , is to be expected.

Sadly , it is common that people do not always get what they want/ expect from their medical professionals. That pill did nothing ... that surgery did not
solve the problem. Does this make the MD a failure ?

MrSuccess took early notice from Dr.Zamboni's published work , in that he was
concerned that his discovery may fall into the wrong hands .

And I am not suggesting Dr. Arata is in that catagory.

Dr.Zamboni's call for a large CCSVI Clinical Trial .... is the solution. IMHO.

MrSuccess

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Rosegirl
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Re: CCSVI ad

Post by Rosegirl » Mon Apr 27, 2015 4:10 am

Cece wrote:
Rosegirl wrote:So again, why do YOU think Dr. Arata is not doing the best he can for his patients?
He performs angioplasty in the jugulars and the azygous vein regardless of whether there is a blockage there. There are risks to angioplasty and I believe a doctor should do it only in the presence of a diagnosed blockage. The nearly thirty year history of angioplasty is in regards to its use in clearing blockages.

(I have found Dr. Arata to be charming and pleasant in all interactions. Our differences are all in the details.)
First, has Dr. Arata confirmed to YOU that he always treats the jugulars and azygous?

Second, what medical training do YOU have that gives you concern about Dr. Arata's treatment protocol when others (including Dr. McGuckin) treat those veins -- along with the iliac and renal veins-- without advance confirmation of an existing blockage? Why is Dr. Arata singled out?

It's naïve to dismiss Dr. Arata's protocol -- or anyone else's, for that matter -- because their treatment plan "might" cause harm. That's true of any procedure from any doctor.

We all appreciate Dr. Sclafani's comments because he has the education and experience to judge the merits of a specific protocol. But even so, he requests information about one patient and comments on that case. While he has expressed concern about various approaches, including things like how much pressure to inflate a balloon, he questions the efficacy of the technique, not the personal character of the doctor(s) in question.

Our doctors say they meet hostility from their colleagues rather than healthy skepticism. It would be a shame that they (and their potential patients) meet additional resistance from people on sites like this who are not qualified to either condemn nor support their approach.

So Cheer and Cece, what are YOUR medical credentials? Tell us why YOU are qualified to condemn/approve both a protocol and a doctor, and we will give your opinions the weight they deserve. And if you don't have medical training, just be sure to disclose that fact in all your posts where you state your opinions so confidently. TIMS readers deserve that disclosure.

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Re: CCSVI ad

Post by Cece » Mon Apr 27, 2015 10:28 am

http://www.ncbi.nlm.nih.gov/pubmed/24915592
J Endovasc Ther. 2014 Jun;21(3):417-28. doi: 10.1583/13-4605MR.1.
Transvascular autonomic modulation: a modified balloon angioplasty technique for the treatment of autonomic dysfunction in multiple sclerosis patients.
Arata M1, Sternberg Z.
Author information
Abstract
PURPOSE:
To describe the use of transvascular autonomic modulation (TVAM) to improve cardiovascular autonomic nervous system (ANS) dysfunction in multiple sclerosis (MS) patients, comparing the safety and efficacy of this modified technique with traditional balloon angioplasty.
METHODS:
Twenty-one MS patients (11 men; mean age 48.7±13.0 years) who presented with symptoms of cardiovascular ANS dysfunction underwent TVAM. These patients were compared with age/sex-matched MS patients (10 men; 49.3±11.1 years) in the same stages of the disease who presented with chronic cerebrospinal venous insufficiency (CCSVI) and who underwent venous balloon angioplasty. TVAM involved the coupling of balloon angioplasty of the internal jugular veins with the application of external manual compression and dilation of the azygos and renal veins; unlike traditional angioplasty for CCSVI, which treats only abnormal veins (≥50% stenosis or static valve), all targeted vessels were treated with TVAM regardless of the presence of an abnormality. The effect of TVAM on ANS function was indicated by determining heart rate variability based on the electrocardiographic R-R interval lengths using vector analysis to derive the mean circular resultant (MCR) and the expiration/inspiration (E/I) ratio, the Valsalva ratio, and the 30:15 postural ratio at 24 hours after intervention.
RESULTS:
Left renal vein compression was common among the TVAM patients and resulted in ≥50% luminal compromise in 10 of 21 patients. Azygos vein abnormalities (a static valve) were identified in 5 patients. Overall, 18 patients met the diagnostic criteria for CCSVI with at least one lesion >50%, but only 10 lesions were considered treatable by traditional balloon angioplasty. After intervention, the R-R interval values, including the 30:15 postural ratio (p=0.01), the MCR (p=0.1), and E/I ratio (p=0.1), were higher for the TVAM patients compared to the control group. The safety profile of the TVAM procedure was similar to that of traditional balloon angioplasty.
CONCLUSION:
The combination of balloon angioplasty of anatomically normal veins coupled with external compression during dilation of these veins can improve indicators of ANS dysfunction. The safety and efficacy of TVAM in MS patients observed in this pilot study is encouraging, paving the way for the treatment of dysautonomia in pathological states other than MS. Further studies should investigate TVAM in a larger MS cohort.

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Re: CCSVI ad

Post by 1eye » Tue Apr 28, 2015 8:05 am

I think I have CCSVI. I have also stopped putting quotes around MS even though it was misnamed. I also think I have something else, or something else has me, I'm never sure, but that it may be that the something is causing me to have both MS and CCSVI. I don't think that something is going to be fixed by ballooning my jugulars to stimulate my autonomic nerves. CCSVI helped me with a lot more than my vagus nerve could affect. MS is accompanied by problems completely separate from my vagus and my veins (though veins are pretty ubiquitous). It just seems a little far-fetched and last-ditch, but I have been and will be mistaken. I ain't no doctor and glad of it.

I never want to see reasonable people in a tussle over qualifications. That's my own personal view. The CCSVI procedure is beyond my reach anymore, but I am not a quitter, either. So I am experimenting with biotin, until the MDs get their act together. I have a neurology appointment in July. I am not very happy with any neurologist I have ever had, but I am sure she or he is out there somewhere. I certainly don't fault anyone for trying other things besides their possible CCSVI or other procedures or drugs. I am still not sure that LDN has no role in treatment of MS.

In fact, about the only thing I am sure of is that frightening MS patients to try to shore up one treatment over another is about the last thing any MS patient needs, because of the Nocebo Effect. There is stiff competition for research dollars, but that can never excuse character assassination or bad-mouthing in general. I'm sure we can all point to someone who has been a little destructive that way.

For all the so-called progressive MS patients I have met (what's so progressive about it?), I want to direct you to http://www.thisisms.com/forum/general-d ... 26243.html and repeat: BTW, using pure biotin powder (no filler) and a manual capsule filler I started taking 300mg per day 2 days ago. The powder came with a bonus electronic scale (100 gram capacity with a tare function to subtract the capsule weight). Etc., etc.
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Not a doctor.

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