2nd Canadian dies after MS surgery

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

2nd Canadian dies after MS surgery

Postby PointsNorth » Fri Jul 08, 2011 2:16 pm

In the comments section following the article someone mentioned that she had additional "work" (my word) done in conjunction with the veno/angio.

Condolences to the family.

PN

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Postby Cece » Fri Jul 08, 2011 2:31 pm

Unless this is something different, I believe this is the Newport Beach death discussed previously in this thread:
http://www.thisisms.com/ftopicp-168405.html#168405

The patient underwent an intracerebral stenting procedure, to the best of my knowledge. This is not the CCSVI treatment which is ballooning of the jugulars and azygous. It was taking it further to deal with some abnormality of the sinuses. I know of another patient who has had this done successfully, however in the Newport Beach case the patient suffered an subdural hematoma and sadly passed away.

Condolences to the family.
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Postby cheerleader » Fri Jul 08, 2011 2:33 pm

This is truly heart-breaking. I just hope we don't start blaming this beautiful young woman for her own death....please, no conjecture on the circumstances. This could have been my husband, or any of the people we know and love, who sought treatment for CCSVI.

BTW, the video of her procedure was included with her medical records and given to the media. Watch the video, they discuss it. There was no intracranial ballooning or stenting. I've spoken to people who have viewed her records.

We still do not understand all of the risks involved in venoplasty of the jugular veins....we don't know how we or our loved ones will respond.
My prayers and condolences to Maralyn Clarke's family.
with tears,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby flipflopper » Fri Jul 08, 2011 4:02 pm

Thank you for the clarifications Cheerleader..

Deciding on being treated for CCSVI is not an easy decision because we don't have all the information concerning the risks and benefits of the procedure yet. While research will give us answers, many are not in a position to wait years for the information about the risks and benefits to be known.

My heart goes out to her family!
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Postby zinamaria » Fri Jul 08, 2011 4:30 pm

This is so utterly tragic, and yes, it is good to have facts, over conjecture.

I am deeply saddened by this, and my heartfelt condolences to her husband and family.
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ccsvi

Postby blossom » Fri Jul 08, 2011 5:38 pm

very tragic and so sad for her and her family. my deepest sympathy to all her family and friends.
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Postby eric593 » Fri Jul 08, 2011 6:10 pm

So sad. My condolences to her family. Cheer, I don't see anyone blaming the victim, let's not presume criticism of her when none has even been written.

So important for the doctors to be clear about the risks, it's too easy to dismiss risks like we do when we pop an aspirin if it's just given immediately preceding a procedure in a long list of potential side effects.

But these are very real and need to be considered as possibilities. If Endovasc has just stated I think that he's done 500 procedures, with this death and the other stroke victim that was mentioned in the story, that's two very serious events in only 500 procedures at Synergy. That we know about.

This is a lot greater risk of occurrence than PML in Tysabri which is constantly being attacked as having too high a degree of risk with demands that it be pulled.

Yet this is 4x as high. Were these cases and the risks emphasized during Synergy's cross-Canada tour, I wonder? People need to realize that this is not necessarily the "safe", low risk procedure we were originally led to believe it was. Throw in anticoagulants or stents, the risks go up even higher.
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Postby Cece » Fri Jul 08, 2011 7:43 pm

I did not read closely, Cheer says it was not an intracranial procedure as previously had been said.
Last edited by Cece on Fri Jul 08, 2011 9:28 pm, edited 1 time in total.
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Postby MrSuccess » Fri Jul 08, 2011 7:55 pm

It would wise to reserve any rush to judgement.

pwMS are fragile . various degrees of fragility.

The treating doctors - MS or other medical dilemas - are taking
huge risks in accepting to treat patients.

It is always a sad situation when there is a death . My condolences.

Again , let's not rush to judgement .



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Postby happy_canuck » Fri Jul 08, 2011 8:53 pm

I am so very saddened to hear of Maralyn's death. My deepest condolences go to her family.

I had this procedure twice. My son had it once (an hour after my 2nd treatment).

This could have been me. This could have be my son, or any one of the 100's of people I've come to know in our CCSVI family.

We talk about the other risks with MS. Frankly, choosing NOT to do anything, whether it be drugs, supplements, or angioplasty, carries a risk.

It still hurts though when we lose someone. R.I.P. Maralyn.
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Condolence

Postby leetz » Fri Jul 08, 2011 10:02 pm

May God bless Marilyn, as well as her friend's and family! She was one of us and took the risk many of us have...true soldier and pioneer for a cure for MS!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby bruce123 » Sat Jul 09, 2011 7:11 am

My condolences to her family.

I saw this news report on CBC a number of times yesterday. They explained that she had her neck veins balloned and showed venogram images that they described as from her procedure. The images were of balloning of the azygos.

It is difficult to get accurate information from news reports. It is important that we know what she really had done. Maybe we'll never know. We must respect the family's privacy.

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Postby CD » Sun Jul 10, 2011 12:20 am

Today the news changed a bit. I still pray for this women and may she rest in peace. My condolences to her family.

This latest article said died of natural causes. :?:
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Where there is a will, there is a way. "HOPE"

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Postby Blaze » Sun Jul 10, 2011 6:16 am

CD wrote:Today the news changed a bit. I still pray for this women and may she rest in peace. My condolences to her family.

This latest article said died of natural causes. :?:
CD

<shortened url>


I, too, am sad at Maralyn's death. Like others, I didn't know her personally, but we are all partners in this struggle together.

CD, you're right, the CTV story did say Maralyn died of natural causes, it also says there was no autopsy. It reports Maralyn was suffering from massive bleeding in the brain hours after the procedure and the final diagnosis included irreversible brain damage.

Maralyn's husband, Frank Lamb, thinks Synergy discharged her too soon. He suspects high blood pressure may have contributed to her death. Although Maralyn, like many of us, was optimistic, Frank has a recommendation for others.

"My advice to other hopeful patients is that if your blood pressure is high, do not have the procedure done," Lamb said.



The CTV story also says the DVD of the procedure shows a catheter being inserted into Marilyn's brain. Is this normal? Or is the report even accurate?

Dr. Hubbard is quoted in the CTV story:
"In my IRB, we would have known about (any potential complications) within 24 hours and we would have investigated it immediately," he said. "Because the people have the right to know."
"

Is Synergy part of Dr. Hubbard's IRB?

There was also an article in Saturday's Toronto Star: http://www.thestar.com/news/canada/arti ... ery-in-u-s

Again, Frank cites Maralyn's high blood pressure and his concerns that she was discharged too soon:
Her husband, Frank Lamb, said his wife experienced severe headaches, nausea and vomiting a few hours after being discharged and was taken to a nearby hospital. She was taken off life support on April 18.

“I think they discharged her before she could make full recovery,” he said Friday, adding that her blood pressure was still high when she left the facility.


Frank also talks about how difficult this has been:
“It’s been tough, very tough,” said Lamb, referring to life since his wife’s death. “And every time somebody else calls, it gets tougher.”


There is a video story to the right of the CTV article. This includes clips of Maralyn in 1995 when she was trying a new drug. At the end, Maralyn said "I live my live on a gamble. That's how it is." Maralyn continued with that spunk to the end.

But, as the reporter concluded "When patients take the risk on new medical treatments, they also take the risk medical science will not learn what they might have given everything to find out."

Frank, as Bruce said, we need to respect your privacy, but if you or someone you know reads this, we want you to know how sad we are for you. Maralyn was a pioneer who died way too soon. I hope we can honor her spirit by living our lives fully and courageously, learning all we can about CCSVI--and advocating for medical professionals to do the same.
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Postby bil » Mon Jul 11, 2011 7:36 am

Blaze wrote:
CD wrote:Today the news changed a bit. I still pray for this women and may she rest in peace. My condolences to her family.

This latest article said died of natural causes. :?:
CD

<shortened url>


I, too, am sad at Maralyn's death. Like others, I didn't know her personally, but we are all partners in this struggle together.

CD, you're right, the CTV story did say Maralyn died of natural causes, it also says there was no autopsy. It reports Maralyn was suffering from massive bleeding in the brain hours after the procedure and the final diagnosis included irreversible brain damage.

Maralyn's husband, Frank Lamb, thinks Synergy discharged her too soon. He suspects high blood pressure may have contributed to her death. Although Maralyn, like many of us, was optimistic, Frank has a recommendation for others.

"My advice to other hopeful patients is that if your blood pressure is high, do not have the procedure done," Lamb said.



This kind of thing is absolutely heart-rending. The chances of this having been a death resulting from natural causes is negligible, this was a result of this so-called "Liberation Procedure". Poking about in dangerous locations, and stretching delicate thin-walled venous blood vessels that are far less robust than the arteries that this technique was originally intended for. That they didn't do an autopsy is absolutely astounding, appalling in fact.

It's all about the Benjamins, the safety of the patient - already desperate and vulnerable - comes a long and distant second.
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