CCSVI RESEARCH here

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

Re: CCSVI RESEARCH here

Postby blossom » Thu Sep 15, 2011 1:49 pm

so happy for your wife and you too!
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Re: CCSVI RESEARCH here

Postby jcivetta » Thu Sep 15, 2011 2:48 pm

thanks Blossom and Cece.

i watched my wife's Doppler Ultrasound. now i know nothing but i saw that flow was really slow in her left IJ. All you have to do is match the colors like rain on the weather channel. i saw the films made during the procedure, before and after. it was very easy to see, once someone shows you.
now we are measuring things and writing them down: we did a lot of research together and once a research nurse, always a research nurse!
Her left calf is 1 1/2 inches smaller than right. those muscles, we think, have had limited range of motion and thus are wasted. but right out of the box, today she walked twice as long and twice as far on the treadmill than on the day before surgery. OK, 20 min at 1.1 miles an hour is only 0.38 total but we'll take it over 0.18.

whatever happens, though, we are very glad we took the step!
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Re: CCSVI RESEARCH here

Postby CD » Fri Sep 16, 2011 5:12 pm

Oh Dr. Joe that is the greatest news. I'm so happy for your wife. She must be thrilled by all this. When you see improvement right away, it is amazing.

Are you both back to the warmer weather now? We were there in Albany too that day, but missed ya. My news was not great. I have very little flow, per Doppler US, in the L IJV now, because of intiminal hyperplasia. My vein lining grew into the mesh stent that was placed there prior, so he does not want to touch it because it would just keep happening.

But I feel great, and still have improvements. MY MS hug is only on left side now, I think because the left flow is minimal. The right IJV is fine.

I was dismissed by the Dr. since he could not help me. That did disappoint me a bit. There are always more doctors, as you well know.

So happy for both of you. Please keep us updated with your wife’s progress. Good luck!
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Multiple sclerosis: cerebral circulation time

Postby MSUK » Tue Feb 28, 2012 8:48 am

Image


Summary: The authors have designed a study to assess cerebral circulation times (CCTs) in patients with multiple sclerosis (MS) and control subjects by using contrast material-enhanced ultrasonography (US).

The authors have found that the longest and average CCTs were prolonged in patients with MS and that prevalence of CCSVI was higher in patients with MS than in control subjects (77% vs 28%, P < .0001) but no correlation was found between CCTs and clinical status.

The authors conclude that CCT assessment may have a role in the evaluation of cerebral blood flow in patients with MS and that a vascular impairment could be associated with MS but that further evaluation is required, and in particular to determine whether these findings are relevant to neurological outcomes.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2944
MS-UK - http://www.ms-uk.org/
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Re: CCSVI RESEARCH here

Postby jcivetta » Wed Feb 29, 2012 8:01 am

why blinded studies ARE needed.

My wife, a patient with MS for 31 years, was offered either enrollment in a randomized study OR getting treated now [September 2011]. for a number of personal reasons we opted for 'maybe it will work now.' The before/after angioplasty studies showed improvement from essentially no flow due to stenosed valve and dilatation of the lower third. I wrote that my wife had marked improvement after int jug angioplasty and dilatation. she hopped off the bed in the recovery room and took off like the paraplegic in Avatar, in her words. i videoed improvement both in walking with canes and on treadmill BUT a week later contrary all my hopes, i noted that her knee and ankle didn't work as well. She did PT and was able to replicate the gain, with hard work and lots of practice. by a month all but the improvements in mental capacity, especially focus but not recent memory, were gone. Two months later in December, she was studied again and there was some narrowing which was dilated more aggressively and she improved slightly for a month.

We both had done and published a lot of clinical research done in Intensive Care Units, starting in the 70s when case series were considered acceptable [now it would be classified no higher than level 4 evidence. Now, for a solid recommendation, Level 1 [at least two large randomized blinded studies] is the preferred 'evidence' for evidence based medicine. Followup needs to be at least 3 and probably 5 years in duration. i agree with the current standards though it was a lot easier then.

The bad news: her improvement did not last
The good news is that she can overcome her limitations with a lot of PT and even more practice.

My conclusions are:
1. if you want to contribute to science and answer the question for future patients, enter a randomized [usually 2 treatment to 1 placebo patients] study

2. if you are as impatient as we were, go for 100% treatment plan, instead of 67%. Objective measurements will provide some help in sorting out the questions. Be prepared to lay out your own funds.

3. But be prepared for disappointment in terms of lasting results

4 Be prepared for some doctors to shy away from implants because if the implant clots that may mean the end of the line right now. By-pass graft patency in veins is difficult to maintain and finding space above and below the clotted graft on the IJ is technically more difficult because of the skull above and sternum/clavicle below.

5.Other techniques and grafts and anti-thrombosis meds will all be coming but then a new round of studies will be needed: a couple of years to get the new 'stuff' invented. a couple of years to show it works, a couple of years to go through Institutional Review Boards, get funding, find other institutions to make it a robust study, find an external monitoring system to increase credibility, and then starting up and completing at least a few years of follow-up.

6. Be prepared to find out when preliminary or early outcomes are reported, that the questions asked in the second round of studies were either answered already or other ways of approaching the disease will then be the focus of investigations..

7. If you're still with me after all the disclaimers, be prepared to have one of the documented fantastic or even moderate results in either study mode 1 or 2.

8. Our neurologist wouldn't even discuss the procedure as there were no compelling data. he was right but we sure got enought for our money in terms of learning that disabilities were not fixed and that there are no other options for stable disease itself [no change on MRIs from 2000 to 2005 to 2010].

Love to discuss with anyone else with similar stories.

Joe & Judy Civetta
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Re: CCSVI RESEARCH here

Postby Cece » Wed Feb 29, 2012 11:31 am

It will be awhile before the evidence is in at Level 1 standards, won't it.
What do you mean by 100% treatment plan instead of 67%?
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7. If you're still with me after all the disclaimers, be prepared to have one of the documented fantastic or even moderate results in either study mode 1 or 2.
What is meant by study mode 1 or 2?

If her last treatment was in December, has she been studied since then to see if the veins have restenosed again? Durability of the treatment seems to be the issue. I would be cautious about increasing the aggressiveness of the procedure without careful sizing by ivus because of the potential risk for the vein to scar and clot. Were high pressure balloons used? I would not consider this a failure of angioplasty. It showed that improvements were possible. Now for the techniques to be refined. Kudos to her for her hard work with the PT.

What do you think about the potential of pharmaceutical treatments that improve perfusion? Diamox and Viagra were both raised as candidates at ISNVD. Even as someone who has been treated and with very good, lasting results, I am still more fatigued that the average person, and with bouts of cogfog that the average person doesn't get. I have read but not verified that walking is the one form of exercise that oxygenates the brain (and that other forms of exercise are too intense and send oxygen to the muscles, decreasing what is available for the brain). I am waiting for it to warm up here in MN so I can get out there walking.
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Re: CCSVI RESEARCH here

Postby jcivetta » Thu Mar 01, 2012 12:09 pm

my cryptic sentences mean: 100% - opt for consecutive series or even just private doc.Everyone who enters such an arrangement gets threatment. That's also Study One.
67% applies to entering a study randomizing 2 patients for study for every control or placebo. That's study Two. I believe some treatment patients DO have wonderful improvements but pre-selection of that subgroup has been difficult and is the focus of many investigators.

Dr. Mehta didn't think that re-re-treatment had much too offer for the reasons you cited.

My experience with Diamox was extensive, but with patients recovering from ventilator treatment after trauma. those patients were usually treated with many liters of lactated Ringer's solution. because lactate was added base, patients would hypoventilate and blood levels of dissolved CO2 would rise, increasing acid and restoring pH. Diamox would cause patients to excrete lactate and thus a new equilibrium would form with a lower pCO2. I can see that it might be termed increasing respiratory minute volume but i don't know how it would improve perfusion, which is delivery of oxygen from hemoglobin to cells in the capillaries.

I didn't see any references in PubMed linking Viagra and MS, especially related to improving perfusion.
one could envision a mathematical formula linking increased oxygen delivery [which is cardiac output, liters per minute, times Arterial Oxygen Content] So a moderate increase in cardiac output could theoretically be distributed evenly and thus the brain gets more, while hard exercise would send out lactic acid which is a signal to SEND MORE OXYGEN. But, as we learned from treating patients with shock due to infection, unless a mechanism is discovered to force oxygen unloading in the capillaries, the increased oxygen delivery leads to increased oxygen return to the heart.
Now i'm speaking of advanced illness, when oxygen delivery is 2 to 3 times more than normal BUT some process stops the utilization of that oxygen.
Taking Diamox over long periods of time won't work as its effect wears off. the body has remarkable work-arounds to counter our efforts, if those efforts are not deemed as a long term good, correctly or incorrectly. I spent my whole ICU career trying to influence oxygen uptake by the cells, but we never made progress. What was frustrating was finding that increasing delivery was wasted because the cells never picked it up. Patients, particularly with cirrhosis of the liver and sepsis, ended up leaving more oxygen than normal people even delivered, yet they died of metabolic acidosis, which indicates inadequate oxygen deliver.

The longer i practiced the more I realized that i didn't know!
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Re: CCSVI RESEARCH here

Postby CD » Fri Mar 02, 2012 9:12 pm

Hi Dr. Joe,
I'm sad to hear that your wife Judy has lost most of her benefits from her CCSVI procedures. Was Judy tested to see which veins have restenosed?.. either by clotting, Intiminal Hyperplasia or perhaps a flap left over from valve opening (leaflets) blocking the flow?

It is true that it will take many years for CCSVI to have standardized procedures, tools, post medications, newer techniques, and better follow-up criteria. Young people have a better chance than those with long-term disease. They will see it happen in their lifetime. The problem is we are all unique in our MS, so I assume it will be hard to have a distinct protocol for all.

We, and many others, can't wait for clinical trials, although they are needed, because they will always find something that needs testing or proof, as in follow up. Since many Neuro's and PCP's are not trying to help our cause because of lack of benefit to them unless they too have a family member with MS.

As a ICU trauma doctor, you have seen many brain and spinal injuries that parallel MS symptoms. Lack of O2 and blood flow to or from the brain from injury, correlates with CCSVI in many ways.

Judy did have improvements after her first procedure, but did Dr Mehta do the Ayzgous vein or just the Jugulars? Does he do one jugular vein per treatment or both at the same time? We have heard and read so much on Judy's dr. it's hard to decipher what's truth or hearsay.

Do you know what Judy and your plans will be? Will she try another CCSVI procedure, or go with what Dr. Mehta said?
Nice to hear from you again Dr Joe. Let us know how Judy is doing.
As you know, Dr Siskin in Albany, dismissed me after my 9 month follow-up. I have three stents in the left jugular that have Intiminal Hyperplasia.
CD
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Re: CCSVI RESEARCH here

Postby Cece » Sat Mar 03, 2012 9:17 am

We haven't heard anything about Dr. Mehta's methods for about a year. Methods can change. He is doing a trial so when he publishes, we'll know more. He does not use ivus, but it is yet to be proven that ivus is superior. He is also a vascular surgeon, not an IR, so has a somewhat different mindset. We are hearing about other doctors such as Dr. Stone in AZ at the Mayo and Dr. Hernandez in Mexico beginning to do jugular vein reconstruction or patch angioplasty, but that is something I've been expecting of Dr. Mehta too. He discussed vein grafting in a joint interview with Dr. Dake on the CCSVI Alliance website a year or two ago.

A loss of improvements can mean simple restenosis or it can mean complications such as clotting. We are on our own for follow-up, especially if travel was undergone to get to the doctor who did the procedure. Logically if there is to be a chance of catching clot when it is most possible to do something about it, the follow-up ultrasound needs to be at 1 month post-procedure, not 3 months. I would like to see that become standard. Especially since it can be done with any vascular doctor and does not need to be a specialized CCSVI doctor.

It's really interesting to hear of the challenges in getting the cells to uptake oxygen even if it's available. It has been suggested that there could be mitochondrial dysfunction in MS patients.
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Re: CCSVI RESEARCH here

Postby Cece » Sat Mar 03, 2012 9:30 am

This is from Dr. Zivadinov's presentation on, "Is CCSVI a disease?"
The rate of transfer of nutrients (primarily oxygen and glucose) from the capillary bed into the brain fluid is proportional to the rate of blood
flow through the capillary bed. An obstruction of the extra-cranial venous drainage pathways may significantly reduce the supply of brain nutrients and potentially result in hypoxia.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19265.html#p186879
The first step is obviously to relieve the CCSVI outflow obstructions. But what to do if slow flow persists after those obstructions are treated, such as if intimal hyperplasia has developed, or a vein was hypoplastic, or there is renarrowing that just won't stay open? Exercise would increase flow, whether it's moderate or hard? And now Diamox is not the answer, because the body will adapt.
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Re: CCSVI RESEARCH here

Postby Cece » Thu Mar 22, 2012 2:20 pm

http://scholar.google.com/scholar?hl=en ... =&as_vis=0

I just saw this thread come up in a google scholar search. How odd! It's usually only research articles.

Is this thread up-to-date? It probably isn't.
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Re: CCSVI RESEARCH here

Postby hope410 » Fri Apr 20, 2012 9:58 am

No association between chronic cerebrospinal venous insufficiency and pediatric-onset multiple sclerosis.

Authors Amato M, et al. Show all Amato M, Saia V, Hakiki B, Giannini M, Pastò L, Zecchino S, Lori S, Portaccio E, Marinoni M.

Journal Mult Scler.

2012 Apr 18. [Epub ahead of print]

Affiliation 1Department of Neurology, University of Florence, Florence, Italy.

Abstract Objective:

Chronic cerebrospinal venous insufficiency (CCSVI) was hypothesized to play a causative role in multiple sclerosis (MS). The assessment of pediatric-onset MS (POMS) may provide a unique window of opportunity to study hypothesized risk factors in close temporal association with the onset of the disease.

Methods:

Internal jugular veins, vertebral veins and intracranial veins were evaluated with extracranial and intracranial ultrasound in 15 POMS and 16 healthy controls. Assessor's blinding was maintained during the study. We considered subjects positive to CCSVI when at least two criteria were fulfilled.

Results:

CCSVI frequency was comparable between POMS and controls (p > 0.05). Clinical features were not significantly different between CCSVI-positive and CCSVI-negative patients.

Conclusions:

Our findings add to previous data pointing against a causative role of CCSVI in MS.

PMID 22513520 [PubMed - as supplied by publisher]
http://www.ncbi.nlm.nih.gov/pubmed/22513520
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Re: CCSVI RESEARCH here

Postby Tracker » Sun Apr 22, 2012 5:11 pm

The fact that gains are made after having angioplasty for CCSVI, DOES mean that by ballooning the occlusions and allowing the blood to flow freely, WORKS.
The thing that is really needed is STENTS that are made specificlly for the jugular & azygous veins. This will maintain the blood flow, and therefore all the gains made.
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Re: CCSVI RESEARCH here

Postby MSUK » Tue Apr 24, 2012 5:28 am

The hemodynamic impact of balloon angioplasty in MS patients with CCSVI

Image

OBJECTIVES: Recently an association has been made between Multiple Sclerosis (MS) and Chronic Cerebrospinal Venous Insufficiency (CCSVI) characterized by stenosis and reflux of the principal extracranial venous drainage including the Internal Jugular veins (IJV) and the Azygous veins (AZV). This is the first angiographic study to quantitatively analyze the impact of percutaneous balloon angioplasty (PTA) on flow dynamics across these lesions.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... geid/2944/
MS-UK - http://www.ms-uk.org/
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Re: Trials

Postby DIR » Tue Apr 24, 2012 6:37 am

Lars wrote:Sorry if this has already been addressed, but beyond Zamboni, Drake, etc, has there been any trials concerning CCVI? And is there any published work from the afore mentioned Doc's showing efficacy?
Thanks,
Lars


There are few clinics in the US that are performing the procedure as a study trial. The Hubbard Foundation's website lists all the clinics in the US that are a part of their clinical study trial, where they will report all their findings. You check out their website at www.hubbardfoundation.org to see. Hope this helps!
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