a member of the CCSVI community has passed

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

a member of the CCSVI community has passed

Postby Cece » Tue Jul 31, 2012 8:51 am

http://www.legacy.com/obituaries/leader ... bLoggedOut
After a short, vicious battle with M.S. and CCSVI Roxane passed away with her family at her side on Sunday, July 22, 2012. She never gave up hope and even through all the hard times she kept fighting and always was more worried about her loved ones than herself. The family would like to thank all for the help and kindness of friends and family, as well the hard work and compassion of the Dr.'s and nurses of the RGH emergency and ICU units. The family would also like to thank the Management of Redhead Equipment for all the support and understanding. Rocky would want people to keep on trying to get CCSVI treatment available in Canada and more importantly, the follow up care that she so desperately needed but could not attain.

A young woman in her thirties with a husband and small children. She was treated in California for CCSVI with some improvements but her veins restenosed. She passed away from complications of an infection unrelated to the CCSVI procedure. I don't like knowing that she wanted follow-up care and couldn't get it. Her family has my sympathies.
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Re: a member of the CCSVI community has passed

Postby blossom » Tue Jul 31, 2012 1:04 pm

how very sad. yes, her family has my sympathy.
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Re: a member of the CCSVI community has passed

Postby LR1234 » Tue Jul 31, 2012 1:34 pm

How can you be sure it wasn't due to a clot or CCSVI related? Very sad that she passed whatever:(
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Re: a member of the CCSVI community has passed

Postby Cece » Tue Jul 31, 2012 1:43 pm

Over on facebook, one of her friends mentioned it was a bladder infection.
This crushes me. I have found a lot of joy and friends in the CCSVI community but we are absolutely in danger from our disease and even sometimes from the treatment.

I just googled her name to verify the details I remembered from Facebook and what do I find? "Please help me." Ok, that makes me cry.

http://www.gofundme.com/HERE-I-GO-AGAIN
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Re: a member of the CCSVI community has passed

Postby HappyPoet » Tue Jul 31, 2012 3:50 pm

So sad <tears>.
Sending prayers to her and her family.
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Re: a member of the CCSVI community has passed

Postby tiltawhirl » Tue Jul 31, 2012 3:56 pm

These stories keep everything in perspective. :(

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: a member of the CCSVI community has passed

Postby Robnl » Wed Aug 01, 2012 12:26 am

very, very sad...
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Re: a member of the CCSVI community has passed

Postby ErikaSlovakia » Wed Aug 01, 2012 2:25 am

very sad
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: a member of the CCSVI community has passed

Postby vesta » Wed Aug 01, 2012 6:49 am

I can't understand why she wasn't treated for a bladder infection. Or maybe I misunderstood and perhaps she needed follow-up care for the CCSVI which she didn't get and her health was undermined as a consequence. Was she somehow being "punished" for her CCSVI treatment? This tragedy may be an example of the Semmelweis reflex at work, "a metaphor for the reflex like tendancy to reject new evidence or new knowledge because it contradicts established norms, beliefs or paradigms." (from Wikipedia)
Semmelweis Reflex and MS
On July 1, 1846 the Hungarian Physician Ignaz Semmelweis began work as Chief Residant in the First Obstetrical Clinic of Vienna General Hospital. This clinic was one of two created in Vienna to offer free obstetrical services as part of a civilizing European movement to stop the practice of infanticide of illegitimate births. (Well, the free clinics were also used to train Doctors and mid-wives.) Dr. Semmelweis noticed that in the the second clinic reserved for the training of midwives, the death rate from childbed fever was less than 4% whereas in his First Clinic reserved for the training of Doctors, the death rate was more than 10%. Poor women preferred giving birth in the street to the possible death sentence of being treated by a Doctor in the First Clinic. Dr. Semmelweis observed that the only difference between the two clinics was that the medical students praticed autopsies in the morgue before attending a woman in labour. He hypothesized that the students carried invisible "cadaverous particles" on their hands from the autopsy to the patients. He instituted a policy of disinfecting hands (and eventually instruments) with chlorinated lime (calcium hypochlorate or chlorine bleach) before attending to a woman giving birth. The death rate in the First Clinic dropped by 90% to resemble that in the mid-wives clinic. In April 1847 the death rate stood at 18.3%, mid May 2.2%, July 1.2%, August 1.9 % and by 1848 2 months passed with no deaths.
While today it seems obvious that one should disinfect one's hands and instruments before attending to a woman in labour, at the time his suggestion that the Doctors themselves were killing their patients outraged his colleagues. They were gentlemen and professionals, how dare he suggest they had "dirty" hands in need of washing. (Surgeons at the time actually wore blood encrusted aprons while working and took pride in that "good old surgical stink".) While the benefits of his disinfecting policy were confirmed repeatedly through statistical analysis, it was thought there was no scientific basis for his findings since he could offer no acceptable explanation. Sound familiar?
The world would have to wait 20 years for Louis Pasteur's germ theory of disease and in the meantime women died unnecessarily. Though everwhere Dr. Semmelweis instituted his disinfecting policy the death rate dropped, he was considered a dangerous radical and eventually lost his last posting in Budapest. (After leaving the replacement physician returned to the old ways and the death rate climbed dramatically as one might expect.) In 1858 Dr. Semmelweis published "The Etiology of Childbed Fever". He wrote Open Letters of desperate fury against the authorities who rejected his ideas. In August1865 he was lured into an insane asylum under a false pretence and when he realized he was about to be admitted as insane himself, he tried to flee. The guards beat him and two weeks later he died of septicemia age 47. He died a rejected and forgotten man just at the moment that Louis Pasteur confirmed the germ theory of disease with his triumphal Sorbonne lecture in 1864 against the idea of "spontaneous generation". August 1865 the same month as Dr. Semmelweis' death, Joseph Lister treated a boy's wounds using carbolic acid (phenol) to prevent "supperation", and in August 1867 Lister read his famous paper Antiseptic Principle of the Practice of Surgery to launch the practice of antiseptic surgery.
Ignaz Semmelweis is now honored in his native Hungary, and recognized worldwide as the "father of modern antisepsis".
The Semmelweis Reflex is now used as "a metaphor for the reflex like tendency to reject new evidence or new knowledge because it contradicts established norms, beliefs, or paradigms."
Dr. Timothy Leary in The Game of Life more pithily defined this reflex as "Mob behavior found among primates and larval hominids on undeveloped planets, in which a discovery of important scientific fact is punished."
I believe it is just such a reflex at work now in the refusal to recognize CCSVI - Multiple Sclerosis as primarily a blood circulation disorder.
(Most of this material and quotes taken from Wikipedia)
Taken from MS Cure Enigmas.net
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Re: a member of the CCSVI community has passed

Postby erinc14 » Wed Aug 01, 2012 8:06 am

was she being treated for the infection ? i don't understand if your receiving treatment . :?
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Re: a member of the CCSVI community has passed

Postby Cece » Wed Aug 01, 2012 9:07 am

I do not know the family personally and I may have shared too much. Complications after an infection that was MS-related, not directly CCSVI-treatment-related.

Inaccuracies in the first post: she was treated in Mexico, not California. It's an assumption that her veins restenosed, I don't know if there was testing to confirm that. (edited: one jugular was known to be occluded.) Her children might not be describable as small but there were two children who lost their mother.
Last edited by Cece on Wed Aug 01, 2012 12:58 pm, edited 2 times in total.
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Re: a member of the CCSVI community has passed

Postby vesta » Wed Aug 01, 2012 10:11 am

"the follow up care that she so desperately needed but could not attain"? The follow up care from CCSVI? Why? Still sounds like she was being "punished" for trying.
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Re: a member of the CCSVI community has passed

Postby Cece » Wed Aug 01, 2012 11:52 am

I think you are saying the local health care might have punished her or failed her. I don't know about that but I do see the national health care as having failed all people with MS. They have moved slowly when our need and our risk is urgent.

ok, this really is very sad. She regretted her CCSVI procedures. She was able to get to California but he could do nothing for her because of the occluded jugular.
https://www.facebook.com/notes/roxane-g ... 7716996868

I had thought the answer was that the procedure should be available, but it's more complicated than that. Follow-up should be available. Treatment of clotting or complications should be available and timely. The procedure should be optimized and standardized so that we have the best shot of only needing one procedure.

Her husband and Michelle Walsh, a friend of Roxanne's and a CCSVI advocate, were going on CTV tonight to share their story.
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Re: a member of the CCSVI community has passed

Postby vesta » Thu Aug 02, 2012 1:45 am

Yes, I agree. Instead of being half underground, CCSVI treatment needs to be developed and fully supported. We now have the cause of MS, but the treatment options aren't developed. Medical resistance doesn't help. I do think one should try less invasive techniques before the angioplasty. (acupressure etc) It sounds like the Mexican Dr actually damaged her vein.
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Re: a member of the CCSVI community has passed

Postby 1eye » Thu Aug 02, 2012 9:21 am

The procedures she had were done without the blessing and financial involvement of governments or scientists or mainstream doctors or insurance companies.. There is some complicity in many anonymous deaths, where safety in numbers is relied upon by, as someone said "a mob reflex".

I don't like to be so negative. Surely we should be remembering her, maybe with some kind of gift in her name, to promising CCSVI research? I can't give much but I would definitely contribute.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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