Finding a place to store all those high heeled shoes, I would imagine.
I love living in the future.
No, no downside. What downside to opening veins that were blocked? You know I hear an awful lot about the negatives of doing surgery on people because there is no proof it will do anything at this point, but I have yet to hear any sort of rational why people should not fix blocked veins.
As I’ve indicated before, I have nothing but good wishes for Uzi’s wife.
How about the potential for blood clots, severe pain, worsening of M.S. symptoms and death?
One link I found described reports from multiple patients of the vein surgery being ineffective, but noted that they tended not to go public with their complaints.
Which is not surprising. People who spend a lot of money on unapproved alternative treatments are generally loath to report bad experiences, for reasons including unwillingness to acknowledge that they spent a ton of money for nothing, or because they continue to hope against hope that things will turn around and they’ll see improvement.
We need more than anecdotal evidence (pro or con) before declaring that this surgery is effective against M.S. and that benefits outweigh risks.
You did read how Mcgowan says that he can feel parts of his leg again and has said he has improvements he hasn’t seen in 2 1/2 years? Really weird to have a ‘placebo’ affect and the pain at the same time, though. Don’t you think?
Regardless, I’m not a doctor, but inflating the balloon 50-60 times seems rather excessive. Simka, who put the stent in my wife’s vein, only puts a stent behind the clavicle. He has found that by doing so it keeps the vein open higher in the neck with no need to put stents in areas where the neck flexes. Maybe if these surgeries were done in Canada then people wouldn’t have to take the risk of going to foreign lands and being experimented upon.
Also, did you notice that the reason that the fellow who died had to go back to Costa Rica was because they wouldn’t treat a blood clot in Canada? He may well have survived if they had done something here. Or is the treatment of blood clots an unusual and controversial thing in Canada now?
And now for news on a ‘approved’ treatment for MS. Biogen reports more deaths and cases of PML in MS patients. I only wish that Tysabri even had half the benefits that those getting the liberation treatment have claimed.
I have difficulty seeing pain as sensory improvement.
One particular doctor wouldn’t treat him, likely for medicolegal reasons (unclear what therapy was desired). From the linked article:
*"A blood clot in the vein might be more dangerous to fix than to leave alone, said Dr. Barry Rubin, the head of vascular surgery at Toronto’s University Health Network.
“Since veins have a remarkable ability to grow in other locations if one of the veins is blocked, generally it’s extremely safe to just put the patient on blood thinners to try and prevent the clot from extending or breaking off into the lungs, and just waiting,” said Rubin, who is also a professor of surgery at the University of Toronto."*
That brings up the question: since collateral circulation can form in other locations if a vein is blocked (for whatever reason), what’s the evidence that such circulation has not developed in MS patients prior to surgery? Is it known for a fact that there is actual ischemia (i.e. tissue damage due to reduced blood flow), relative to MS or any other symptoms? Is there evidence that reported symptomatic improvement in some patients is due to relief of ischemia?
I haven’t seen answers to these questions.
The standard for approving any medical treatment is whether it has proven benefits that justify associated risks. The “CCSVI” surgery doesn’t meet the standard.
Hmmm, I’ve asked if people would be willing to have their jugular veins blocked. No takers yet. The patient went to Costa Rica to have his veins unblocked. A doctor who says just to leave a blockage alone isn’t really helping.
It could be just blind luck that patients are reporting improvements after surgery. I wonder that people who go on the expensive medicines don’t have the same placebo effects or luck, though.
You mean without more studies? Otherwise, it comes across like you’ve made up your mind already.
A video of Dr. Hubbard. A good explanation of blocked veins and MS.
I’m just posting to subscribe. I didn’t know you needed to do that. I have a friend with MS so this is interesting for me.
My mother just had this done a few weeks ago at a hospital in the US. She’s reporting some improvement, although I don’t know how much of it is due to the procedure and how much of it is due to placebo effect. She knows she’ll never be 100%, but at this point, any improvement is welcome.
Another improvement to note. My wife’s leg strength is improving. She can stand in one place and jump. Sounds rather anti-climatic, but there is a lot of coordination going on when a person jumps. Only about 3" of air, but she doesn’t fall over or break a leg. More importantly, both legs do it equally. She hasn’t been able to do that in a very long time.
Uzi, I am so glad that your wife continues to improve.
I do not have MS, but this last decade has been a health struggle for me and I know what it like to feel bad most of the time. Worse for her, because up until this treatment she didn’t have much hope that it would improve. (At least for me there has been the constant hope that things will keep getting better.)
Sending out more good thoughts for her continued improvement!
An update:
In the last year we’ve moved to Hong Kong. Something we couldn’t have done before my wife had this surgery as the heat would have killed her and it is a walking city.
She had to go back for another treatment. Her bladders issues were returning and her legs were getting worse again (more on that later!!!).
They found that she had started to develop a web where her stent in her neck was. The doctor cut the blockage out. They also found a blockage in the illiac, which they stented.
Result?: Everything except her legs got better again. They still felt heavy and leaden and tired very quickly. But, other than her legs you wouldn’t know she had MS…
So, we decided to go to a doctor in Hong Kong and see if they could find anything out about her legs. WE DID NOT MENTION MS. MS isn’t something they see a lot of here. So, he looked at her legs and asked a few questions about what she had done for a living previously-worked retail with long hours on her feet.
He sent us to a vascular surgeon. That person used an ultrasound to check her legs and found that the majority of valves in her greater saphenous veins were no longer working in both her legs. Essentially, the blood was recirculating within her legs. The recommendation was to ablate both veins.
A long story short. After the surgery her legs no longer feel leaden. They feel like her legs used to feel like before she ever had this disease called MS. The issue now is that her muscles have atrophied to the point where they are very weak. It is taking her a long time to build up the muscles again. She gets better everyday.
What pisses me off is that because she was labelled with MS, no doctor in Canada would look at her legs without seeing that big MS tag. “You’re legs aren’t working because you have MS”, rather than looking at the symptoms in her legs as a possible separate issue. Within minutes the doctor in Hong Kong had figured out the problem. For years she suffered in Canada because the doctors wouldn’t look at the problem objectively or attempted to answer one of the basic questions in root cause analysis “What could it be but isn’t?”. "Um, it could be vein issues in her legs
THIS IS A STANDARD BLOODY TREATMENT AROUND THE WORLD AND ISN’T CONTROVERSIAL IN THE LEAST OR REQUIRE A GREAT LEAP TO FIGURE IT OUT IF YOUR HEAD ISN’T UP YOUR ASS.
Sorry, but I’m pissed about this issue.
Hey Uzi, I’m wondering if I might get an update.
I recently got involved with someone who was diagnosed with MS about 7 years ago. I’m doing mad research at the moment on every aspect of this disease and of course I came across this thread. I’ve taken Jackmanni’s and QTM’s comments in this thread to heart as a skeptic and someone with a passionate belief in the scientific method and the process of how science is done. I’ve read relevant posts on the science-based medicine blog (which I read semi-regularly in general), and a variety of other articles about Zamboni’s claims.
I remain skeptical, while somehow balancing that with hopeful optimism. Over a year has passed since the last post in this thread. How are things?
Something that I haven’t seen mentioned in the course of this thread:
*“The largest genetics-based study of multiple sclerosis ever conducted is casting significant doubt on a controversial theory that the disease is a vascular condition caused by blocked neck veins.”
“The study identified more than two dozen new genetic variants common to people with MS and found the majority of genes involved are pivotal to the immune system.
The discovery strongly suggests MS originates as an inflammatory immune response and casts aside “eccentric and maverick ideas” that it is caused by venous abnormalities, said Alastair Compston, neurology professor at the University of Cambridge and a joint lead author of the study.”
“One can say that this provides absolutely no support whatsoever for that [blocked veins]idea,” Prof. Compston said.*
And:
*"This past May the FDA issued a warning about CCSVI, saying “there is no reliable evidence from controlled clinical trials that this procedure is effective,” adding that “the criteria used to diagnose CCSVI has not been adequately established.” One person has died following the procedure, and the FDA has learned of “stroke, detachment and migration of the stents, damage to the treated vein, blood clots, cranial nerve damage and abdominal bleeding associated with the experimental procedure.”
What the science lacks in hard data, patients are making up for in an abundance of testimonials."*
M.S. is one of those waxing-and-waning diseases where testimonials can be particularly deceptive.
Liberation treatment is also available in India in the Chennai, Bangalore, Mumbai, Delhi etc. Around 1.5 years back, I talked to the doctor who performs this procedure in Chennai on phone regarding a guy I know, who had lesion in the spin.
he said there have been some great improvements in patients who had lesion in brain and that one of his 18 yr old patients frm Canada who couldn’t walk could start regular life (college, outdoor activities - hiking etc)after the treatment.
He said 50-60% people who had disability in walking had improved after the procedure, mainly the ones who had lesions in the brain. And 80% stopped regressing (becoming worse). The treatment has zero risk involved he says. He had arnd 200 patients enrolled for the treatment. He planned to further evaluate the procedure for the patients with spinal lesions over the next 2 yrs by monitoring their progress.
I call BS based on this alone. Any surgery has inherent risks. At least two people have died as a result of this treatment.
So who is this guy? Assuming he is doing a legitimate controlled study (a big assumption, I know), one might expect he has enough data to at least give a conference presentation in his specialty, if not author a peer-reviewed publication.
No MS symptoms anymore. Legs still a problem.
We think there is nerve damage in her right leg and she has knee and hip joint issues that may or may not be related to the MS issues she’s had. She has a lot of pain from her hip and has had MRI’s that show bone spurs. The pain prevents her getting to the gym and doing much physical therapy - limited to massage and just walking around HK. But she has had her fill of surgeries at the moment, so to get that fixed may be long term.
We’ve noticed that where previously her legs were noticeably different in size, one being smaller than the other, now we can’t see or measure any difference is size. Unfortunately, we didn’t think to measure them previously to do a comparison:smack:.
This is the video of the Doctor, who I talked with, explaining CCSVI:
This is the patient testimonial video of 3 of his canadian patients:
The doctor name is Dr V Balaji, Senior Vascular Surgeon, Apollo Hospitals Chennai. This treatment is available in Apollo Bangalore, Breach Candy hostipal Mumbai, Fortis Hospital Delhi also among others. This is what I had found out around 1.5 years back.
@Uzi, thats great! hope the leg, knee and hip also get alright.
Thanks for the update. But can you clarify what “no MS symptoms anymore” means? Does that mean that she hasn’t had another attack since the procedure? And are you saying that the various issues with her right leg, knee, and hip joint may be completely coincidental with the ms? And thus, might be treatable with surgery?
No more attacks, no more heat intolerance, no more tingling or numb extremities.
Her knee surgery solved that problem, but it turned out that the major issue now is with her hips. Whether it all was caused by her previous MS symptoms, or just life in general is debatable. Not everything is related as I’ve said previously.