IVCC/CCSVI, articles et liens de ce lundi.

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par CCSVI in MS Toronto, dimanche 31 octobre 2010, à 21:46

Week after week Canadians are taking the trip of a lifetime. Some may simply be driving a few hours south of the Canadian border, and others may be heading to California, Costa Rica, Mexico, Poland, Germany, Bulgaria, Egypt, and as far away as India.

 

Essentially once you leave the country for your CCSVI treatment, you are basically embracing medical tourism in one form or another.

 

Do you just get on a plane and you're done? Is it all really that simple?

 

It is vital to have Doctors lined up back home to provide care for you after your CCSVI angioplasty. Medical tests and even a CCSVI Doppler, to check if you are not forming a clot is critical follow-up care. If you don't have this arranged, you could get into trouble.

 

Since I wrote the “Compassion Denied” story about Costa Rica. Many of the CCSVI groups are hearing stories from people who have run into serious complications when leaving Canada. Emails and phone calls have been coming in. Sometimes Canadian Doctors refused to help them when they get back from various CCSVI treatment centres around the globe.

 

Doctors have told some people that if you go for angioplasty and get into trouble, don’t even bother coming back to the clinic for help, because they will not help them.

 

I personally heard of several in Montreal who nearly died after their CCSVI treatment in Poland. They ended up in Hospital Emergency with life threatening complications. Their regular Doctors and neurologists in Montreal refused to offer them any help or guidance, even though their doctors said they would be glad to help them before they went for treatment. They were now left on their own!

 

In St. Catharines a man who had the CCSVI treatment was told: ”You have MS. Go home there is nothing we can do for you.” Sadly he died in Costa Rica seeking follow-up care that he was denied back in Canada.

 

You can get blood clots from simple angioplasty even while on strong blood thinners. If you had a stent the clot risk is even higher. It’s so important to have your follow up care arranged before you seek treatment abroad. Dr. Simka recommends you have a follow-up Doppler after a couple months. But are people doing this?

 

I asked one of the administrators of a medical tourism Facebook site about what happened in Costa Rica and the lack of follow-up care. They never had the courtesy to even respond to my concerns, or point me in the right direction for answers. People booking their trip should ask the same questions. What can they do for follow-up care? Do they have Doctors in Canada that will help?

 

However, when you go on their Facebook site, you will see posts about of how wonderful the tropical plants are. You will see people talking about how “dreamy” their Doctor is. But what about follow-up care?

 

I read one person talking about how they couldn’t get their jugular valve fixed, because they said: “have a valve issue and until further studies show how to resolve it, it will continue to be an issue (this could explain his leg mobility decrease, as well as some ataxia).”

 

Their Doctor may be “dreamy” but valve issues are very common CCSVI issues, and if they are not able to address this, then their doctor is not fully trained. Also, their leg mobility could also be May-Thurner syndrome, but was that checked during their venogram?

 

Frankly if you are going to pay 2 to 3 times more than treatment in the USA, I would expect a lot more than “I don’t know how to treat CCSVI valve issues.”

 

In the last week, people on the medical tourism and various CCSVI Facebook sites are now starting to express concern over follow-up care. Here are just a few from one site:

 

“My Treatment is just days away and I am feeling a lot of anxiety over the whole thing. Anyone experiencing the same feelings? I am afraid of needing follow up care in the United States. Being an American with a pre-existing medical condition, I cannot get health insurance.”

 

“Mine is on the 20th and I am freaking out here; I think i need some Xanax!! LOL.... I am also worried to see if my Dr. in Canada will provide me with followup care”

 

Also people are self-medicating in droves. They are playing doctor because they apparently do not seem to have any follow-up care. They are asking people about blood thinners to use after CCSVI treatment. Here are a few quotes from people who are playing this deadly game:

 

“I can't seem to find the name of the blood thinners (2 different ones, I think?). Did most of you all buy the remaining 2 weeks worth down in C.R. or back at home?”

 

“When we finish taking the blood thinners, is there anything we have to do like take aspirin or some other blood thinner?”

 

“I took Aspirin but stopped after a few days. It made me dizzy and my ears ring.”

 

“I wonder why we weren't all given the same follow-up instructions... Dr. didn't tell me I had to do anything once the blood thinners are done.”

 

“How often do you take the baby aspirin? I was not told either.”

 

The lack of follow-up care is not being fully addressed and potential complications are growing. 

 

People from coast to coast are getting blood clots after their CCSVI treatment, and because many are receiving zero CCSVI follow-up care, they may not even realize they are at great risk. Simply put, people are playing a fatal game with their health and they don't even know it.

 

Blood thinner treatments must be monitored. People are experiencing serious medical complications right now, even though they are already on stronger blood thinning medications. This has to be monitored on a regular basis. The dosage may have to be adjusted several times. But if you don’t have follow-up care, you will never know until it’s too late.

 

I hope this note makes you think about the big picture. Please make that phone call to your Doctor. Arrange for follow-up doppler testing now, before you go. If you don't have follow-up care in Canada, do you have the resources to make a 2nd trip back to where you had your treatment?

 

Simply put, if you do not have extensive CCSVI follow-up care back home, you shouldn’t go for CCSVI treatment abroad.

 

As Joan Beal says “go local.” The more I think of that statement, the more I realize she is dead right.

 

WaYnE

 

 

Joan Beal - Going local and follow-up care:

http://www.facebook.com/note.php?note_id=454425162210

 

ThisIsMS - The Possible Negative Outcome Of Treatment:

http://www.thisisms.com/ftopic-14158-days0-orderasc-0.html

 

Compassion Denied:

http://www.facebook.com/note.php?note_id=482254624918

 

CBC - Vancouver firm cashes in on MS treatment:

http://www.cbc.ca/canada/british-columbia/story/2010/10/29/bc-ms-treatment-medical-tourism.html"

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FOLLOW UP CONCERNS

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Beh, nel mondo sembrano aprirsi spiragli non da poco... ;-)

Al Convegno mondiale sulle Controversie in Neurologia a Barcellona, si é svolto un dibattito intitolato "La CCSVI gioca un ruolo nella patogenesi ( meccanismi causativi ndr ) della sclerosi multipla?" Per il SI ha relazionato il prof. Paolo Zamboni e per il NO il prof. Stuve di Dallas, moderatore il prof. Miller di Tel Aviv. Dopo un animatissimo dibattito la votazione da parte dell'audience completamente di estrazione neurologica ha avuto un esito inatteso. Quasi il 50% ha infatti votato a favore del SI."

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Letter on Liberation Treatment to AHS

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par CCSVI in Multiple Sclerosis, dimanche 31 octobre 2010, à 17:39

We have always stated on this page that pwMS who seek angioplasty should know the following:

 

1. Patients must stay close to home, to work with local doctors.  Patients need follow up care.  Angioplasty is often not a one time event.

 

2.  Patients who have angioplasty need a very specific blood thinning regimen tailored to them, and this needs to be followed by a doctor who can test INR and PT (coagulation numbers)  Many people have angioplasty and have no idea they have hypercoagulation before being treated....this is a terrible problem.

 

3.  Patients need to have a team working with them.  A general physician and vascular doctor/IR are essential--if possible, a neurologist is great, because there can be neurological follow-up.  It took my husband's neuro over a year to become interested, and now she is.

 

This is what I started writing about August 2009 when I began this page.  Please, go back and read the notes from the beginning.   I was writing about Dr. Zamboni's discovery and the need to take it to local universities and doctors.  I was writing about my husband's local experience and how he needed repeat angioplasties and follow-up care.  I had no idea at that time that there would be medical tourism.  I had no idea that patients would be going thousands of miles to seek care, and have no follow-up.   

 

We are not doctors on this site.  If you or a loved one have received angioplasty and are having problems or worsening, PLEASE consult your doctors....if they cannot help, go to an emergency room or clinic.  Make sure to have coagulation numbers checked.  If there is fever or illness, there could be infection.  Please see doctors.

 

I had hoped that what we had started in 2008, getting the research to doctors and universities that could help and would follow their local patients, would be the focus of this group.  I had no idea that it would become an area of medical tourism.  This is why Dr. Zamboni asks for patience.  I know this is hard to hear...but it's true.

Joan

 

 

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HandoutMS patient Andrea Meatte, left, is comforted by and shares a quiet moment with sister Laura Meatte in Guelph.
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Letter on Liberation Treatment to AHS

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Multiple Sclerosis treatment making a difference

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MS treatment positive, but it’s not a miracle

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Images of Peter Krahn’s jugular veins before and during the liberation therapy for multiple sclerosis. Buy Parksville Qualicum News Photos Online

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