Canadian media reporting on death from CCSVI complications

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

Postby Johnson » Tue Nov 23, 2010 1:33 am

I am still unclear what exactly happened - whether he was refused treatment, or was advised to leave it alone. If the former, it is scandalous. If the latter, I don't know what to say. Harm has been done by either not treating in Canada, or by treating in Costa Rica (both times). There seems to be too much rumour and innuendo to know which or whether.

I was told that if I did have evidence of a clot, the bedside chat would be over, and I would be in treatment for the clot. I was told to return immediately if things changed for the worse. If I was advised that it was untreatable, I would seek a second opinion. I think that I understand that Jeff Beal had a stent occluded by clot (or perhaps hyperplasia?), and he was advised to leave it be. Every decision has its merits, and pitfalls. Mr. Mostic's case is tragic, and truly saddening. Good has come from it though, as it has focused attention on an untenable situation. People with complications will receive emergency treatment. It may even light a fire under Health Canada's arse to get some proper trials going NOW, because people are going to keep going overseas, to sometimes dubious operators, and there are going to be more with serious complications, and more deaths. It can't be swept under the carpet anymore
My name is not really Johnson. MSed up since 1993
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Postby eric593 » Tue Nov 23, 2010 2:01 am

Not Johnson - did the ultrasound find that your blood was flowing smoothly or was there re-stenosis or blockage?

When you went to Emerg, what did you complain of...pain? And then when you told them of the Oct. angio, this was what tests they went with in order to investigate? Why would creatinine be checked with neck pain/neurological worsening?

Sorry you're not feeling well - my best to you. And glad there was no clot!
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Postby malden » Tue Nov 23, 2010 2:11 am

Johnson wrote:I am still unclear what exactly happened - whether he was refused treatment, or was advised to leave it alone...

http://www.cbc.ca/health/story/2010/11/18/multiple-sclerosis-vein-death-costa-rica-mostic.html#socialcomments:

After Mostic paid $30,000 US to go to Costa Rica for treatment in late June, he was operated on three times to have a mesh stent inserted to prop open a vein in his neck.

"He started feeling better and got his energy back," his girlfriend, Bedrana Jelin, said from Visoko, Bosnia-Herzegovina.Mahir Mostic's MS symptoms improved after his neck veins were opened, but then worsened with fatal blood clot complications, his doctor in Costa Rica said." (Bedrana Jelin)

But his MS symptoms started getting worse and a blood clot formed around the stent in the vein, Fallas* said. An ultrasound showed that the vein was 80 per cent blocked.

Mostic was disappointed and desperate. His friends and loved ones raised another $8,000 US to send him back to Costa Rica after they had trouble getting a specialist to see him in Canada.

"They didn't want to touch him because he was done outside of Canada," Jelin said.

Mostic flew back to Costa Rica for treatment, but died in hospital there after doctors tried to dissolve the clot using powerful medication that Fallas* thinks triggered internal bleeding.
...

*Dr. Marcial Fallas Camacho - treated Canadian/Bosnian Mahir Mostic in San Jose, Costa Rica.
Last edited by malden on Tue Nov 23, 2010 3:26 am, edited 2 times in total.
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Postby eric593 » Tue Nov 23, 2010 2:12 am

I also don't know if anyone is to "blame" in Mr. Mostik's death. Clotting risks exist with angio. Some doctors feel that it's best to leave the clot, some are more aggressive in wanting to dissolve them.

We don't know if Mr. Mostik was refused treatment or if the Cdn doctors thought it best to leave the clot and monitor it, but Mr. Mostik decided to go to CR for more aggressive treatment in the hopes of opening up the vein again.

We just don't know. We definitely don't know that someone is at fault, or that either CR or St. Cat's did anything wrong.

I really think we should avoid drawing unsupported conclusions. We just feed the hysteria.

The death is very tragic. Anyone undergoing angioplasty risks clots. Everyone should be aware of that. We just have no information that someone is at fault here. Many a good doc will leave a clot, and that's what St. Cat's Hospital might have chosen to do in the circumstances.
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Postby CCSVIhusband » Tue Nov 23, 2010 3:30 am

This schadenfreude sickens me ... way to exhibit the sympathy this gentlemen and his situation deserves.
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Postby oreo » Tue Nov 23, 2010 5:29 am

For those of you who think that no one in Canada will touch you if you have a post liberation problem; from this morning's Hamilton Spectator:

Five months ago, Hamilton General Hospital nurse Debra Beckon flew to India to undergo an unproven procedure called “liberation treatment” she hoped would help alleviate her symptoms of multiple sclerosis.

And just like Ontario resident Mahir Mostic, the first Canadian to die of complications from his “liberation” operation, Beckon had a stent inserted into her jugular vein where a large blood clot subsequently formed.

Unlike Mostic, though, Beckon says Canadian doctors are treating her here at home using a slower and less powerful clot busting regime that she hopes will restore the improvements she felt for a few brief weeks after “liberation.”


The BIG difference - she went to a university teaching hospital where thay have the best equipment and the most up-to-date doctors.

The BIG tragedy - it's less than an hour to get from St. Catherine's to Hamilton General.

If you are going for 'it' I suggest you know how and make plans to get yourself to a teaching hospital in Canada if you do develop problems. Planning ahead and being well informed and prepared remains the key to any success.
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Postby malden » Tue Nov 23, 2010 5:31 am

Seems that CCSVI team in Costa Rica is well equipped and trained and skilful according to their CV-s:

http://www.passportmedical.com/procedur ... i/doctors/

CCSVI doctors

Our Medical Team in Costa Rica


We now have 4 surgeons performing the Liberation Treatments: Dr Fallas, Dr Cabezas, Dr Diaz, and Dr Gueverra. All have performed many Liberations and are sharing their knowledge and results.

In addition, Dr Fallas and Dr Gueverra, as well as Gabriella our physiotherapist, just returned from New York where they attended a conference of CCSVI doctors and shared techniques and results.

It has become quite evident that our doctors in Costa Rica are getting some of the best and most consistent results anywhere in the world. Our doctors postulate that this may be due to our protocol including the unblocking of not only the jugular and azygos veins, but we are the only ones we know of unblocking stenoses in vertebral veins as well.

The Surgeons

Dr Marcial Fallas is the vascular surgery coordinator at Hospital Clinica Biblica. Dr Fallas was present in Monaco in September, 2009 for the World Meeting Of The International uni0n Of Phlebology. Dr Zamboni and Dr Simka both presented research on CCSVI to the group of vascular surgeons in attendance. Dr Fallas has been following the research around CCSVI closely since then, and he is constantly fine-tuning his techniques based on the latest research and traveling and meeting with experts in this field including to Boston, New York, and Germany.

Dr. Javier Cabezas is another vascular surgeon on the team who has performed many of the Liberation procedures at Hospital Clinica Biblica.

Dr. Geiner Dìaz is an interventional cardiologist on the team who has also performed many Liberation procedures.

Dr. Guillermo Guevara is another vascular surgeon on the team: Click here to learn more about Dr Gueverra. Dr. Gueverra also recently traveled to New York to share his findings with other experts in CCSVI.

Dr. Ernesto Gutierrez is a vascular surgeon.

Dr. Morelli’s CV, the final vascular surgeon, is pending.
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Postby scorpion » Tue Nov 23, 2010 7:20 am

Malden wrote:Seems that CCSVI team in Costa Rica is well equipped and trained and skilful according to their CV-s:

http://www.passportmedical.com/procedur ... i/doctors/

CCSVI doctors

Our Medical Team in Costa Rica


We now have 4 surgeons performing the Liberation Treatments: Dr Fallas, Dr Cabezas, Dr Diaz, and Dr Gueverra. All have performed many Liberations and are sharing their knowledge and results.

In addition, Dr Fallas and Dr Gueverra, as well as Gabriella our physiotherapist, just returned from New York where they attended a conference of CCSVI doctors and shared techniques and results.

It has become quite evident that our doctors in Costa Rica are getting some of the best and most consistent results anywhere in the world. Our doctors postulate that this may be due to our protocol including the unblocking of not only the jugular and azygos veins, but we are the only ones we know of unblocking stenoses in vertebral veins as well.

The Surgeons

Dr Marcial Fallas is the vascular surgery coordinator at Hospital Clinica Biblica. Dr Fallas was present in Monaco in September, 2009 for the World Meeting Of The International uni0n Of Phlebology. Dr Zamboni and Dr Simka both presented research on CCSVI to the group of vascular surgeons in attendance. Dr Fallas has been following the research around CCSVI closely since then, and he is constantly fine-tuning his techniques based on the latest research and traveling and meeting with experts in this field including to Boston, New York, and Germany.

Dr. Javier Cabezas is another vascular surgeon on the team who has performed many of the Liberation procedures at Hospital Clinica Biblica.

Dr. Geiner Dìaz is an interventional cardiologist on the team who has also performed many Liberation procedures.

Dr. Guillermo Guevara is another vascular surgeon on the team: Click here to learn more about Dr Gueverra. Dr. Gueverra also recently traveled to New York to share his findings with other experts in CCSVI.

Dr. Ernesto Gutierrez is a vascular surgeon.

Dr. Morelli’s CV, the final vascular surgeon, is pending.


Thanks for posting Malden.
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Postby Blaze » Tue Nov 23, 2010 7:37 am

Although the Costa Rica team may be well qualified, they didn't follow Dr. Zamboni's procedure. Here is what Dr. McDonald and Dr. Zamboni said about it on CTV:

The man's death underscores the confusion surrounding the controversial procedure, says an avowed advocate of the procedure.

Barrie Ont.-based vascular surgeon Dr. Sandy McDonald believes in the potential of "liberation therapy," but says the procedure Mostic underwent was very different from the one devised by Italian researcher Dr. Paolo Zamboni.

Based on a hypothesis that MS is a vascular disease caused by blocked or twisted veins in the chest and neck -- a condition he calls CCSVI -- Zamboni's technique uses balloon angioplasty to widen neck veins and increase blood flow from the brain.

After consulting with the doctor who did Mostic's procedure, Dr. McDonald said it was "nowhere near what Dr. Zamboni describes" because doctors inserted into one of the man's veins a stent, which is a small metal tube designed to keep a blocked vein open

"A procedure was done on one day, and the next day they had a sub-optimal result, so they then stented it," McDonald said.

That appeared to restore Mostic's bloodflow, and he was sent back to Canada. But when his symptoms worsened he was rushed by ambulance to St. Catharines General Hospital. A blood clot had formed around the stent, but he wasn't treated for his complications at that time.

The hospital declined comment on the case.

In October, Mostic returned to Clinica Biblica in Costa Rica seeking treatment. A clot-busting drug was injected into the stent, but Mostic died the next day.

New theory

Zamboni first published his findings about the CCSVI theory in 2009. They flew in the face of the conventional belief that MS is an autoimmune disorder and gave hope to those who have been told there is no cure.

But on Friday, Zamboni said he was deeply saddened by Mostic' death.

"This is really terrible news for me," Zamboni told CTV News.

He's also worried that some clinics will continue to promote the use of metal stents, and that patients who develop complications from the procedure may not receive critical follow-up care.

The research paper he wrote "always recommended not to use stents in the jugular vein, so what was performed is not the methodology that we proposed," he said.

The new "liberation treatment" procedure has not been approved yet in Canada, leaving MS patients seeking relief both desperate and confused.

http://www.ctv.ca/CTVNews/WFive/2010111 ... on-101119/
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Postby scorpion » Tue Nov 23, 2010 8:34 am

Blaze wrote:Although the Costa Rica team may be well qualified, they didn't follow Dr. Zamboni's procedure. Here is what Dr. McDonald and Dr. Zamboni said about it on CTV:

The man's death underscores the confusion surrounding the controversial procedure, says an avowed advocate of the procedure.

Barrie Ont.-based vascular surgeon Dr. Sandy McDonald believes in the potential of "liberation therapy," but says the procedure Mostic underwent was very different from the one devised by Italian researcher Dr. Paolo Zamboni.

Based on a hypothesis that MS is a vascular disease caused by blocked or twisted veins in the chest and neck -- a condition he calls CCSVI -- Zamboni's technique uses balloon angioplasty to widen neck veins and increase blood flow from the brain.

After consulting with the doctor who did Mostic's procedure, Dr. McDonald said it was "nowhere near what Dr. Zamboni describes" because doctors inserted into one of the man's veins a stent, which is a small metal tube designed to keep a blocked vein open

"A procedure was done on one day, and the next day they had a sub-optimal result, so they then stented it," McDonald said.

That appeared to restore Mostic's bloodflow, and he was sent back to Canada. But when his symptoms worsened he was rushed by ambulance to St. Catharines General Hospital. A blood clot had formed around the stent, but he wasn't treated for his complications at that time.

The hospital declined comment on the case.

In October, Mostic returned to Clinica Biblica in Costa Rica seeking treatment. A clot-busting drug was injected into the stent, but Mostic died the next day.

New theory

Zamboni first published his findings about the CCSVI theory in 2009. They flew in the face of the conventional belief that MS is an autoimmune disorder and gave hope to those who have been told there is no cure.

But on Friday, Zamboni said he was deeply saddened by Mostic' death.

"This is really terrible news for me," Zamboni told CTV News.

He's also worried that some clinics will continue to promote the use of metal stents, and that patients who develop complications from the procedure may not receive critical follow-up care.
The research paper he wrote "always recommended not to use stents in the jugular vein, so what was performed is not the methodology that we proposed," he said.

The new "liberation treatment" procedure has not been approved yet in Canada, leaving MS patients seeking relief both desperate and confused.

http://www.ctv.ca/CTVNews/WFive/2010111 ... on-101119/


This is why many people were encouraging eveyone to SLOW DOWN and wait until the results from other studies were released but the tiny CCSVI snowball quickly developed into an avalanche. People with MS were and are still being encouraged not to trust anyone in the medical profession but instead to rely on information obtained from internet blogs. THIS IS DANGEROUS. I agree with the author. At this point people are desperate for the truth about CCSVI and confused as to why so much differing information about CCSVI is being reported almost daily. Please start looking to medical professionals knowledgeable about the human body instead of internet bloggers for your information regarding CCSVI!!!!! If CCSVI is implicated in MS it will eventually be proven through double blinded clinical trials performed in an objective manner.
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Postby concerned » Tue Nov 23, 2010 8:47 am

CCSVIhusband wrote:This schadenfreude sickens me ... way to exhibit the sympathy this gentlemen and his situation deserves.


I don't think anyone is taking pleasure from his misfortune...
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Postby concerned » Tue Nov 23, 2010 8:58 am

Blaze wrote:Although the Costa Rica team may be well qualified, they didn't follow Dr. Zamboni's procedure.


So Dr. Dake, Simka, and all the other stent people aren't performing the Zamboni procedure I guess then.
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Postby Cece » Tue Nov 23, 2010 9:37 am

Blaze wrote:But when his symptoms worsened he was rushed by ambulance to St. Catharines General Hospital. A blood clot had formed around the stent, but he wasn't treated for his complications at that time.

The hospital declined comment on the case.

In October, Mostic returned to Clinica Biblica in Costa Rica seeking treatment. A clot-busting drug was injected into the stent, but Mostic died the next day.

I agree with eric, we don't have enough information to draw complete conclusions.
But the pictures are heart-breaking. :(

Scorpion, would the medical professional that we have in Dr. Sclafani be included in your list of who we should listen to? I agree that there are dangers about. My other thought is that when you say it will be eventually proven, eventually is a hard pill to swallow when time is brain. :(

Concerned, yes, either the problem is with the stents or with the lack of follow-up care that is even more needed if a patient has stents. The Zamboni ccsvi venoplasty procedure is venoplasty only, no stents.
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Postby malden » Tue Nov 23, 2010 10:44 am

Cece wrote:...The Zamboni ccsvi venoplasty procedure is venoplasty only, no stents.

Zamboni's CCSVI venoplasty procedure also consider blood thinners and anticoogulants as post operative treatment,
and blood thinners and anticoogulants treatment are fatal in both deaths (Mahir's and Holly's): triggered internal bleeding.

It's not baloon/stent question. Registered death complications are common to both procedures. M.

concerned wrote:
Blaze wrote:Although the Costa Rica team may be well qualified, they didn't follow Dr. Zamboni's procedure.

So Dr. Dake, Simka, and all the other stent people aren't performing the Zamboni procedure I guess then.

Dr. Zamboni's procedure is about diagnosing CCSVI, not treating (I think so?). M.
Last edited by malden on Tue Nov 23, 2010 10:57 am, edited 1 time in total.
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Postby Cece » Tue Nov 23, 2010 12:23 pm

Malden wrote:
Cece wrote:...The Zamboni ccsvi venoplasty procedure is venoplasty only, no stents.

Zamboni's CCSVI venoplasty procedure also consider blood thinners and anticoogulants as post operative treatment,
and blood thinners and anticoogulants treatment are fatal in both deaths (Mahir's and Holly's): triggered internal bleeding.

It's not baloon/stent question. Registered death complications are common to both procedures. M.

concerned wrote:
Blaze wrote:Although the Costa Rica team may be well qualified, they didn't follow Dr. Zamboni's procedure.

So Dr. Dake, Simka, and all the other stent people aren't performing the Zamboni procedure I guess then.

Dr. Zamboni's procedure is about diagnosing CCSVI, not treating (I think so?). M.

I can only think that this is deliberate misinformation. If it's a game, I do not understand it.
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