"ms"

[TrevorW]

For those that don't know my wife suffers from MS- she was diagonised in 2004 and has progressively got worse.

She has gone from an active vibrant person do one that needs a crutch to help her walk. She can't even walk 50 meters without being fatigued to the extent she can't walk further.

The Neurologist, doctors etc fundamentally all say theres no cure.

She has too inject herself daily with a Interferon drug to apparently deminish the number of attacks she may suffer.

We have recently be advised of a new procedure as below;

An Italian doctor has been getting dramatic results with a new type of treatment for Multiple Sclerosis, or MS, which affects up to 2.5 million people worldwide. In an initial study, Dr. Paolo Zamboni took 65 patients with relapsing-remitting MS, performed a simple operation to unblock restricted bloodflow out of the brain - and two years after the surgery, 73% of the patients had no symptoms. Dr. Zamboni's thinking could turn the current understanding of MS on its head, and offer many sufferers a complete cure.
Multiple sclerosis, or MS, has long been regarded as a life sentence of debilitating nerve degeneration. More common in females, the disease affects an estimated 2.5 million people around the world, causing physical and mental disabilities that can gradually destroy a patient's quality of life.
It's generally accepted that there's no cure for MS, only treatments that mitigate the symptoms - but a new way of looking at the disease has opened the door to a simple treatment that is causing radical improvements in a small sample of sufferers.
Italian Dr. Paolo Zamboni has put forward the idea that many types of MS are actually caused by a blockage of the pathways that remove excess iron from the brain - and by simply clearing out a couple of major veins to reopen the blood flow, the root cause of the disease can be eliminated.
Dr. Zamboni's revelations came as part of a very personal mission - to cure his wife as she began a downward spiral after diagnosis. Reading everything he could on the subject, Dr. Zamboni found a number of century-old sources citing excess iron as a possible cause of MS. It happened to dovetail with some research he had been doing previously on how a buildup of iron can damage blood vessels in the legs - could it be that a buildup of iron was somehow damaging blood vessels in the brain?
He immediately took to the ultrasound machine to see if the idea had any merit - and made a staggering discovery. More than 90% of people with MS have some sort of malformation or blockage in the veins that drain blood from the brain. Including, as it turned out, his wife.
He formed a hypothesis on how this could lead to MS: iron builds up in the brain, blocking and damaging these crucial blood vessels. As the vessels rupture, they allow both the iron itself, and immune cells from the bloodstream, to cross the blood-brain barrier into the cerebro-spinal fluid. Once the immune cells have direct access to the immune system, they begin to attack the myelin sheathing of the cerebral nerves - Multiple Sclerosis develops.
He named the problem Chronic Cerebro-Spinal Venous Insufficiency, or CCSVI.
Zamboni immediately scheduled his wife for a simple operation to unblock the veins - a catheter was threaded up through blood vessels in the groin area, all the way up to the effected area, and then a small balloon was inflated to clear out the blockage. It's a standard and relatively risk-free operation - and the results were immediate. In the three years since the surgery, Dr. Zamboni's wife has not had an attack.
Widening out his study, Dr. Zamboni then tried the same operation on a group of 65 MS-sufferers, identifying blood drainage blockages in the brain and unblocking them - and more than 73% of the patients are completely free of the symptoms of MS, two years after the operation.
In some cases, a balloon is not enough to fully open the vein channel, which collapses either as soon as the balloon is removed, or sometime later. In these cases, a metal stent can easily be used, which remains in place holding the vein open permanently.
Dr. Zamboni's lucky find is yet to be accepted by the medical community, which is traditionally slow to accept revolutionary ideas. Still, most agree that while further study needs to be undertaken before this is looked upon as a cure for MS, the results thus far have been very positive.
Naturally, support groups for MS sufferers are buzzing with the news that a simple operation could free patients from what they have always been told would be a lifelong affliction, and further studies are being undertaken by researchers around the world hoping to confirm the link between CCSVI and MS, and open the door for the treatment to become available for sufferers worldwide.


My question is given this information would you insist that your doctor perform the procedure and if they refused would you go OS to have the procedure done knowing what MS can do.


:help:

[dpastern]

Trevor - your wife's health is paramount. If need be, go OS. Knowing the medical establishment, they'll do their best to drag their feet and deny anything about Dr Zamboni's medical techniques having a positive effect on MS sufferers. I wish your wife all the best.

Dave

[PCH]

Trevor,

jeepers, that is staggering news. I bet so many sufferers and their families around the world are, as you say, literally buzzing with hope that something will come of this.

Whether you go for it or not, - hmmm. A hard one. I think I might be tempted to wait a little while to see if the procedure becomes adopted as standard. If it's as simple as it seems, then it will hopefully be no time at all before it does become the accepted method of curing this condition.

I think Aussie medics/surgeons have a great reputation around the world for being at the forefront of medical technology Trevor, so I think I might see how it gets accepted here. But if it doesn't find it's way here, and it does seem to be doing the trick o/s, then I'd go wherever the treatment is to be found.

Great story, - I wish you and your wife all the best.

[mithrandir]

Trevor,

I'm tempted to agree with Dave, but you should be looking for as much independent analysis as you can find. A surgical treatment like a balloon or stent is a much less invasive process than many, and doesn't rely on untested drugs. Don't believe everything in testimonials from patients. They can be affected by the placebo effect.

I've seen both sides of the testing process in action.

It took many years for the medical profession to accept that ulcers could be caused by bacteria. That is in part because there was no money in it for the drug companies.

My late sister was in a trial for a new melanoma treatment drug. While it was working to an extent, the side effects were a problem. The doctors decided the drugs would kill her faster than the cancer, so they took her out of the trial.

Best wishes for your wife and you.
Andrew

[Octane]

Trevor,

Pretty exciting news. All the best to you and your wife.

Regards,
Humayun

[Gallifreyboy]

Of all the stupid quotes on this forum this takes the cake:mad2:

Best of luck Trevor, people naturally want answers for medical conditions where the prognosis is poor with conventional treatment. It is human nature. Breakthroughs are made all the time but caution is taken with reports of small series of patients from a single operator. What is the complication rate of the procedure, what is the length of followup for Dr Zamboni's series. Can you talk to the patients who have had the procedure yourself not only through Dr Zamboni. They are the things I would base an opinion on.

[dpastern]

Jolly good for you Peter. My experiences with Australian doctors are that they like to drag their feet. The AMA should be legally disbanded too for that matter.

Dave

[Gallifreyboy]

moderators please allow trevorw to have a decent thread without irrelevant off topic gripes tainting it

[FredSnerd]

Gee Trevor, what fantastic news. Hmmm, where to from here. I personally am a wait and see kinda person but others are not and whose to say which way is best. Maybe your best bet is to keep a really close eye on what the MS support groups are saying. I suspect that they're advice is less likely to be compromised by counterveiling interests. But what’s your wife saying. Would she be prepared to wait to get a clearer picture of how effective the new procedure is and more importantly what the risks and downsides are. You two got long hours of research and talking ahead I should think. The very best to you both

Regards

[dpastern]

moderators - please allow me to express my personal opinion without others attempting social bullying.

Dave

[casstony]

In the first years of my chronic, untreatable disease I jumped at any potential cure that came along, including some absolutely whacky ideas that I don't care to divulge. Eventually I learned to focus on potentially beneficial treatments by looking for evidence on medical sites like Medscape/Medline. Collect as much evidence as you can to see if you can build a case to present to a doctor - if you can present a reasonable case, keep seeing doctors until you find someone willing to perform the procedure, though you should check that your surgeon is competent (via recommendation from a GP you trust).

If the Italian treatment option doesn't pan out, you should investigate Low Dose Naltrexone - MS is one of the diseases that aparently benefits from LDN, with the typical anecdotal response being that it does not cure the disease but prevents worsening of symptoms.

http://www.iceinspace.com.au/forum/showthread.php?t=48147

[Louwai]

Trevor,
It's a bugger of an answer you're looking for.

I have a very close friend who's wife is an absolutly gorgeous woman.

She has Cancer & is unlikly to see their daughter's 21st birthday. (10mths away)
It's ultimatly her decision, but I know for a fact that she would do anything & go anywhere if it meant there's the slightest chance that she would have more time with her husband & family.

B

[Ric]

Hi Trevor, It sounds like a remarkable breakthrough and I wish the best for you and your wife in whichever path you choose.

I can only imagine your dilemma but if I was in a similar position I would be moving mountains to improve my wifes quality of life.

[madwayne]

Trevor

My thoughts and best wishes to your wife, family and yourself. It is a crippling disease, my partner's mum has MS and her mum is basically house bound. Mentally she is fine, sharp and alert, but physically not so good it is sad to see for someone in their late 60's to be living life as an old woman.

I have copied your initial post and e/mailed it to my partner for her to have a look at it - I hope you don't mind.

I have neither the medical expertise or life experience to offer you any suggestion/s as to what you should or should not do. Just my best wishes and thoughts to you all. I am sure that what ever decision you make will be well informed and the right one given the facts you will have at hand at that time.

Wayne

[jjjnettie]

I would definitely look into going overseas for the treatment if you are unable to get it performed here.
The expenses will be high, but if it means relief of symptoms or even a cure for your wife, it will all be worth it.

[dpastern]

That is exactly my view.

Dave

[xelasnave]

Hi Trevor, sorry to hear about your wifes situation...however there seems to be some hope unless this Dr is a fraud or a fool. No doubt investigation will suggest he is onto something or not however the little you have covered sounds somewhat encouraging.
Finally your decision needs to be based upon the results of failure... in other words if a sucess there is no problem but what if the opperation is a failure will your wife lose more or suffer something see would not have had to except for the opperation... what is the worst that can happen?

What does your Doctor think about it? Is he able to say such a proceedure has no hope and if so why?
Bear in mind how consideration of exposure to professional negligence may colour his or other opinion... it is sort of like even if they think it is a good idea how would a judge see it if the matter went to court... the fear of being sued has had a dramatic effect on many parts of our society and often has little bearing on merit or benefit and lives become guided by the price insurance companies place upon sanctioning an activity... I mean I know a lady who cant have a horse riding class simply because the insurance in prohibitive ..she wants to run it all around here want to have their kids trained by her but it is the insurance company that has decided our respective fates.

Given how the guy who determined ulcers were the result of bacteria looked to ancient remedies I now wonder if the old practice of blood letting had benefit:question:... just a flash ... but it is easy to dismiss old practices as stupid when they may have had an unprovable benefit... the guy who worked out the ulcer thing got onto the right track by wondering about why folk would use bismuth to treat ulcers..that is basically why he though maybe ulcers are bacteria related...

My heart goes out to you both but do not give up follow every lead on this.

alex:):):)

[TrevorW]

Thanks for the feedback

It's surprising that a disease thats been around over 100 years

a) they still don't know whats causes it
b) they haven't found a cure

2.5 million people would wide my wife's drugs without the PSB scheme would cost here a $1000 a month.

Apparently the Canadian MS society is offering funding to Dr's who wish to research it

the US MS Society is taking a wait and see stance more research etc etc

the Aus MS aligns with the US society and is taking a conservative stance

My argument here is how hard would it be to set up and run a clinical trial for this comparatively easy procedure

A get 50 MS sufferers

1) test to see if these MS patients have blocked blood vessels in the brain
2) perform procedure on the test group
3) see if any improvement over time 12-18 months
4) get feedback
5) publish results 2 years max

[dpastern]

It wouldn't be hard at all Trevor. But doctors feed the pharmaceutical companies, and they like to make lots of money. A simple remedial treatment lowers the dependency on drugs, and means less income for the pharmaceutical companies.

Dave

[Kal]

Trevor,

I am sorry to hear this news about your wife, but this news about a potential cure brings hope. I think you should discuss it with your GP first, see if at least you can get the scans done to determine if there are blocked blood vessels or an iron buildup.

If there is no chance of getting any medical work done locally, then I ultimately think it is up to your wife to make the decision of whether to go overseas for treatment. Whatever her decision is, you should support it 100%.

[multiweb]

Very hard to say as nobody can really know or feel what you and your wife are going through. If it doesn't involve any life threatening procedure and it makes your wife's life any better than what it is now then go for it. At the end of the day you want to make her daily life as good and as comfortable as you possibly can and if there is even the tiniest remote possibility to do it then IMHO it's worth a shot. Ultimately it's her decision. Good luck with it all :thumbsup:

[jjjnettie]

You guys are wonderful.
Do you know that?

[Gallifreyboy]

"My argument here is how hard would it be to set up and run a clinical trial for this comparatively easy procedure

A get 50 MS sufferers

1) test to see if these MS patients have blocked blood vessels in the brain
2) perform procedure on the test group
3) see if any improvement over time 12-18 months
4) get feedback
5) publish results 2 years max "


I shake my head Mr Pastern, if you have something positive to say, go for it, if not you are displaying to the world your ignorance and angst on this issue, why bother:shrug:

I am a medical researcher but not in neurological conditions. In my time I have seen many major breakthroughs in medical conditions both pharmaceutical sponsored and non-pharmaceutical company sponsored. I work with many researchers whose lives are devoted to discovering better treatments. Mr Pastern's comments are deeply offensive to me.

The difficulties of setting up a human intervention trial in Australia and most first world countries are enormous but not insurmountable. A well thought out scientifically sound and procedurally safe study will get through the many hoops to be registered with the TGA but then the logistics of procedural and study indemnity, having sites with expertise to collect the information and comply with GCP, approval from human research ethics committees etc are difficult. There is often an unrealistic expectation from those who are not involved in human research as to how easy it is to arrange. For those of us who are, patience and diligence (and funding) are the keys. Here is an idea of just 1 general document from TGA about doing trials on unregistered devices http://www.tga.gov.au/docs/html/hrec.htm

For Trevor, don't be discouraged by the hurdles but keep an open mind about the possibilities. Unless a trial is already well advanced in the planning stages in Australia already it will take a long time to get going. You can check if there are similar trials going on currently in Australia by visiting this site http://www.anzctr.org.au/

[dpastern]

Tell me Peter, why does it take a long time to get going? There's enough people. There's enough doctors to do the procedure. So, what's the hold up? These are people's health that you "medical experts" are playing with. You mention hoops. That speaks volumes of the current medical system. Trevor's trying to keep his mind open about possibilities, hence his original post in his thread. When he questioned the possibility of trials in Australia, I showed healthy scepticism, and you've pretty much confirmed it in your most recent post.

I don't really give a hoot what you think of me, or my comments. There is sufficient evidence to show collusion between a lot of doctors and the pharmaceutical companies. Our governments do very little about it for a variety of reasons.

Anyways, my apologies Trevor, but I felt it necessary to react to Peter's comments about me. My suggestion to you Peter - grow a thick skin.

Dave

[TrevorW]

Thanks Peter and David you have both have valid points

but Peter the particular document you refer to relates to therapeutic goods often such things get bogged down in bearacracy to the detrement of those concerned just so people cover thy asses so too speak

If an individual is prepared to sign a waiver and understands that it may not be that magic bullet then so be it

In this case the procedure involves no drug trials

the test for the blood vessel blockage is quite common I think it's referred to as a Doppler

likewise the procedure to clear blood vessels of blockage is quite common

so I cannot see why there should be prolonged delays in setting up clinical trails on a group of test subjects

sorry it may seem cynical but it just doesn't make sense.

[marki]

Trevor you best contact the Dr directly. I know plenty of people who have gone OS to get treatment when the option is not available here. The Italians do great things with bone damage and are quite innovative in their approach to many things medical. If the scan can be done here on request of a GP to find out if the treatment is suitable then that would be the best way to go about it. Won't be cheap but what price for the health of a loved one.....

Mark

[dugnsuz]

Dr Zamboni's surgical procedure seems like a real step forward for sufferers of MS (and their carers) much in the tradition of medical pioneers who go out on a limb to test their own theoretical ideas like Barry Marshall with Helicobacter Pylori.
I wish you and your wife all the best in pursuing this treatment - this is very new, non clinically trialed medicine and as such requires the patient to have the financial and motivational wherewith-all to actively pursue it.
I hope you can.
All the best
Doug

[Jen]

Hey Trevor :hi:
I hope things turn out ok for you and your wife go for it i say if thats what your wife wants to do, in the end it will be her decision to make.
And you also need to take care of yourself too ok, you sound like a very lovely supporting husband ;)
All the best Trev
xo

[slippo74]

Hi Trevor, I wish all the best for your wife.
If you are planning to go in Italy, I just want to let you know that I still have my house over there and you are more than welcome to use... I believe it may help in some way in case you need to stay for a long period.

Cheers.

[TrevorW]

Thank You so much Cristiano for the offer early days yet

I've decided on a course of action and thank you all so much for your support.

:thumbsup::thumbsup::thumbsup::thum bsup::thumbsup::thumbsup::thumbsup: to all of you

[norm]

Hi Trevor,

Best of luck to you and your wife, whatever decision you decide upon.

Going back to your original question, if there is even just the smallest chance of it improving her quality of life, go for it.

Cheers Mate.

Norm

[supernova1965]

Hi Trevor

Both you and your wife keep your chins up My wife has just been told she is officially cured of breast cancer after 5 years of clear tests. I and my wife wish you both all the best and look forward to updates.:love:

[jjjnettie]

That's great news Warren.
Congratulations to both of you.
Reckon it's been a hell of a journey for both of you.

[Jen]

:thumbsup: great stuff Warren :thumbsup: