I gave you what you requested - an example of an alternative therapy without current proven value for M.S., whose supporters can point to a limited number of positive preliminary studies. It further resembles Zamboni’s stenting in that there is potential for harm to patients, but some clinics abroad are willing to do the procedure (for considerable $$).
I made it clear that I do not consider stem cell therapy useless, rather a modality that needs quality research and clinical trials before it can be accepted as a substitute for current M.S. treatment, much like Zamboni’s procedure.
In addition to what Qadgop has pointed out about venous circulation and collaterals (i.e. that detectable structural abnormalities may have no clinical importance), it is worth considering that if you imaged the entire population you’d be likely to find not only “venous blockages” but a lot of other circulatory and other anatomic anomalies. Do we send surgeons in to “fix” all these things, in the absence of evidence that they are causing problems or that the fixes will lead to better health? At what cost and risk to the patient?
If you are asking if you should fix a small vein that has many other supporting veins, then I’d agree that the cure if probably worse than the issue. Do you consider your Jugular vein to be in the same category? Again, would you agree to having it blocked?
Acute blockages there would tend to cause problems. But most blockages don’t occur acutely, they develop gradually. As a result, the body compensates for the changes. Whether or not to have a jugular venous blockage treated would depend on a lot of factors, such as the nature and degree of the blockage, the precise location, the length of time it’s been there, the likelihood of it progressing, the symptoms it’s causing, the likelihood that repair would improve the situation or prevent future problems, and the risk being run in the repair.
So it’s hardly a question of agreeing to have it acutely blocked, but a question of what the true clinical situation is. In short, it’s a very nuanced issue, and clear-cut answers are not always readily available.
Actual occlusion of one’s jugular vein would likely be a significant medical issue with surgical consultation indicated.
An issue with Zamboni and his adherents is just how the “blockages” he is discovering in various veins are diagnosed, how reliable and reproducible the findings are, and whether there are actually functional problems as a result of the “blockages”.
It seems that just about any venous flow pattern can be created by manoeuvring the subject in different positions and by using different phases of the respiratory cycle. Certain of these flow patterns are then selected by unknown criteria and deemed to be “CCSVI”. Such selection is highly subjective which is why attention to blinding of the tester is extremely important. We have no details about how the tester was blinded. When one believes that one should find a certain result one is very attentive to even the slightest hint of the diagnosis.
How “CCSVI”, however diagnosed, can lead to brain pathology without a substantial increase in jugular venous pressure has never been explained by Zamboni or Zivadinov."*
CCSVI is a genetic condition. Whether it gets worse over time is something that I don’t know.
Yes, the body adapts. The Buffalo study said that 20% of the population has these blockages while 50-60% of the MS population does. It depends on how you test. Zamboni, and others, use an ultrasound device to test for the blockage to determine if they can find any blockage. But it is the venogram that proves if there is an actual blockage. The patient isn’t moving around when they do the venogram, but lying flat on the table.
Btw, if you are going to use Colin Rose’s postings as a resource. Don’t do it with MS patients who believe in this theory. He has essentially claimed that if you damage the valves in your jugulars (which happens just by putting the catheter up there) your head will explode from the back pressure. A little hyperbole on my part for a guy who would prefer MS patients die rather than listen to anyone but himself. He has been blocked from posting on most CCSVI sites.
A whole lot of IMHO territory below. Most of the stuff hypoxia, and hypothermia are mine, or at least were my logical conclusions before I heard others talking about it:
The Buffalo study raises an important point. Why don’t all those people who have a blockage get MS? Qadgop states the solution. Most people adapt. eg. The amount of poison it takes to kill me may make you sickly. The amount of blockage that would cause MS symptoms in you, may make me feel slightly tired. Every person is different.
Re. Venous Pressure. Any system is comprised of two factors, pressure and flow rate. My theory is that flow rate is compromised such that systems don’t get the amount of oxygenated blood they need. Eventually cell death occurs. This leads to the build up of iron deposits when the red blood cells that Zamboni talks about. Patients are in a constant state of hypoxia. Whether it is the iron, as Zamboni seems to think, or the cell death, the immune system reacts to do what it was designed to do.
Why do most patients who have the CCSVI treatment (I hate the term ‘Liberation’) end up with warm hands and feet again? I hazard a guess that the body is reacting similarly as it does during hypothermia. It pulls blood back into the core of the body to keep essential systems functioning as long as possible. Once the vein is opened again, the body reverts to normal functioning. It is an example of the body compensating and adapting to the decreased blood flow and no longer having to once the flow returns.
And if we really want explanations, who has explained and proven, why the immune system attacks those areas in the brain? What trigger or causal factor starts this process? Why only the brain and not nerves elsewhere in the body?
Addressing the immune system can hinder the affects of MS as it is a symptom.
But it doesn’t address the root cause. No one has found what that is. At least Zamboni’s theory makes a good stab at it even though I don’t think it is the whole thing.
She is still going to physio to strengthen her ankles and legs. As I stated earlier, she doesn’t need the drugs for bladder spasms anymore.
It is interesting that the study you saw (I saw it a while ago) didn’t find any blockages when so many have, including the Buffalo study. It takes quite a bit of training and special equipment to find the blockages with doppler or MRV’s. The only way to be sure is a venogram, at least when we initially had it done.
The death if probably the person who had a stent placed and then had a stroke on the plane returning from the procedure, iirc.
Compared to Tysabri, a current drug on the market for MS, which has killed at least 2 people and probably more. Or the research into immune system re-booting, which has killed more. Angioplasty is done daily with relatively few after affects.
A number of patients have also been found to have May-Thurner syndrome when the doctor did the venogram through the left leg. It was found to be the case with a person we met in Poland. She had some benefit, but her legs weren’t working as well as she had expected them to. So, she got it checked and they found she had May-Thurner’s. Fixed it and she no longer needs two canes anymore.
We found a local doctor who rechecked my wife. He is a big fan of the procedure and has checked many people and confirmed for himself Zamboni’s theory. He checked her stent to ensure it hadn’t migrated and checked her right side to confirm the angio’d area hadn’t re-stenosed.
Just to emphasize that there were major stenosis on both sides of her neck which the doctors in Poland fixed. There is no doubt as I saw the entire procedure as it was being done. After the procedure the blood flowed as expected and did not reflux back into her brain. Since then there has been an immediate improvement followed by a steady increase in her ability to control her body again. Her GP, dubious at best before she went to Poland, is now another convert and is eagerly following her progress.
Lots more patients have had the procedure done around the world now. More anecdotal evidence is coming back as to the efficacy of the treatment. The Saskatchewan government has announced they will fund research.
Let’s pray that this treatment is found to be valuable, and that your wife continues to improve. Or, failing that, that we find something else that works better.
I heard about the Saskatchewan government decision (which makes sense, since for some unknown reason Saskatchewan is the MS capital). It will be very interesting to see how all that goes there.
So, still no downside to the treatment that your wife underwent, Uzi?
Yeah, some large bruising where they inserted the wire for the angioplasty. It might have been acerbated by the blood thinners for the stent. Otherwise, everything is good.
Another benefit is the throbbing head aches she used to get when she laid down are gone. Oh, and she sleeps far better now.
She is still showing no signs of her MS symptoms after 9 months. No more drugs are needed. As I may have said earlier, she has some permanent nerve damage in her right leg that may recover given enough time. Luckily, she had a stent as some people are finding that they restenose if just given the angioplasty.
More and more governments are getting on board to do the testing. Finally, there is a study in Alberta where they will look at people before they go for treatment and follow up afterwords. Unfortunately, these studies seem to take years. Given the number of people who have gone so far, I don’t know why it should take so long. Some of these studies just seem like long term job stability for researchers.
Longer studies have a better chance of demonstrating accurate results and allowing sufficient time for careful analysis and oversight. Back in 2004, Merck voluntarily withdrew their already-approved drug Vioxx due to results from their own follow-up studies showing an increased risk of heart attack.
Considering the risks involved with stenting in general, whoever wants to consider performing the procedure for this reason would do well to pay close attention to the studies involved with this procedure.
Speaking as someone who works in medical research on the testing-on-humans-in-hospitals end of things, we all know that each study will eventually come to an end. Agencies involved with patient safety (like the US FDA) have significant input into the length of studies and what further research needs to be done to show safety and efficacy.
