My son's liberation

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

Postby Cece » Mon May 03, 2010 7:25 pm

DeniseW wrote:The one of his azyogus vein will blow you away it was so narrowed!!

If you think about it and get your son's permission too, people here can probably walk you through how to upload any pictures, if you can get a copy. We've seen a lot of jugulars, but not much of the azygous, and I for one would be very interested!! Again much happiness for you and your son.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby DeniseW » Mon May 03, 2010 7:48 pm

mshusband wrote:Yeah great you have coverage, but now the government will dictate what can and can't be treated (like what's going on with Canada and CCSVI).

At least in the US a lot of people are finding doctors who will currently treat them for CCSVI - you don't see that in Canada without leaving the country.

Soon under Obamacare you won't see that in the US either.

Good luck with all that though ...

Guess you can tell which side of the coin I'm on by that post ... but it's what IS going to happen.


Where do you get your health insurance from??

I couldn't disagree with you more!! The only people in the states that are guaranteed health insurance are public workers, and those on medicare. They can't be canceled, they pay a fraction of what we pay in the private sector for health insurance, and they get it for life. Those of us in the private sector have no protection at all, and our tax dollars help pay for all the wonderful benefits the public sector have. It doesn't matter that (like in our case)..we already pay more than $20,000 a year in premiums and co-pays...we can still be canceled. The new health care bill gives insurance company the option of paying the $100 a day fine rather than insure a person with a serious illness, that might cost more than that. Let's face it $36,500 is a drop in the bucket for some with serious illnesses. Tysabri cost $79,000 a year for 12 infusions.
President Obama and congress worked very hard to bring real health insurance coverage to all americans...not just the public sector. Don't get me wrong, I don't want to take anything away fromt he public sector, as long as the private sector has the same options.
You have to control the profit in health care. There is no way america can sustain the ever rising cost for Medicare, and all the public workers and retirees health care premiums without bankrupting the country. If all our leaders had worked together they could have come up with a modified american style single payer system that could work for everyone.
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Postby DeniseW » Mon May 03, 2010 7:51 pm

whyRwehere wrote:France has socialized medicine, but my husband was able to be treated, but if we were in the UK, that wouldn't have happened...it all depends on how they do it, and there is nothing definite. The biggest help, will be the elimination of companies being able to say no to those with pre-existing conditions. Now they need to make the companies not be for profit....


Right on!! Couldn't agree with you more!!
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Postby DeniseW » Mon May 03, 2010 7:59 pm

jackiejay wrote:regarding the statement "how bad your MS is is how bad your CCSVI is"....... a person with RRMS with no symptoms of CCSVI could still be having damage to their CNS due to iron deposition and perhaps does not have the primary symptoms due to blood flow caused by CCSVI....hence it is hard to say how bad their MS is at the moment.....just thinking of all the people with less obvious signs of MS.......could they not have CCSVI at all?...I guess that's what the research will show....someday....am hoping that CCSVI will apply to them also because the autoimmune theory is way too vague and implausible.


I believe in Zamboni's theory that the iron depositing in the brain is what sets off the autoimmune response. It makes perfect sense. The iron floating around in the brain, after breaking through the blood brain barrior, may land on the myelin and then the white cells attach both. It even makes sense when you think about how Tysabri works to protect you against an attack. I'm a believer!!
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Postby mmcc » Mon May 03, 2010 8:07 pm

DeniseW wrote:
jackiejay wrote:I thought they weren't doing any more treatments at Georgetown for the time being....perhaps I am mixed up with hospitals.


My son is a patient of Dr. Tornatore's at Georgetown Hospital and we have been talking to him about this possibility since January. My understanding is that Dr. T. and Dr. Neville are only studying a group of 30 MS patients and they are all Dr. Tornatore's patients. I don't believe they are doing venograms on others outside his practice...but, I could be wrong. I did meet a man from PA at the hospital on the 28th that said he traveled to Georgetown to have a doppler of his jugulars done there.

You can get the ultrasound done at Georgetown. The limit is on the number they are initially doing the procedure on. They are still doing the procedure - my daughter and I are scheduled for the end of May and beginning of June.
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Postby Salvatore24 » Mon May 03, 2010 8:45 pm

DeniseW wrote:You sound a lot like my son. I'll say a prayer that you get your procedure this month. Is it going to be a venogram? I noticed you are from Australia. Are they doing a lot of CCSVI testing there?
I believe in my heart and soul that treating CCSVI will be the end to this terrible monster in your and my son's life. My best to you too!!


Yeah, it'll be a venogram. Testing is being performed in a few states at the moment, although 1 doctor has already been forced to stop doing anymore procedures.
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Postby marcstck » Mon May 03, 2010 9:19 pm

DeniseW wrote:
mshusband wrote:Yeah great you have coverage, but now the government will dictate what can and can't be treated (like what's going on with Canada and CCSVI).

At least in the US a lot of people are finding doctors who will currently treat them for CCSVI - you don't see that in Canada without leaving the country.

Soon under Obamacare you won't see that in the US either.

Good luck with all that though ...

Guess you can tell which side of the coin I'm on by that post ... but it's what IS going to happen.




Where do you get your health insurance from??

I couldn't disagree with you more!! The only people in the states that are guaranteed health insurance are public workers, and those on medicare. They can't be canceled, they pay a fraction of what we pay in the private sector for health insurance, and they get it for life. Those of us in the private sector have no protection at all, and our tax dollars help pay for all the wonderful benefits the public sector have. It doesn't matter that (like in our case)..we already pay more than $20,000 a year in premiums and co-pays...we can still be canceled. The new health care bill gives insurance company the option of paying the $100 a day fine rather than insure a person with a serious illness, that might cost more than that. Let's face it $36,500 is a drop in the bucket for some with serious illnesses. Tysabri cost $79,000 a year for 12 infusions.
President Obama and congress worked very hard to bring real health insurance coverage to all americans...not just the public sector. Don't get me wrong, I don't want to take anything away fromt he public sector, as long as the private sector has the same options.
You have to control the profit in health care. There is no way america can sustain the ever rising cost for Medicare, and all the public workers and retirees health care premiums without bankrupting the country. If all our leaders had worked together they could have come up with a modified american style single payer system that could work for everyone.


The healthcare bill, as passed, has no public option, and therefore the government has no mechanism for dictating what procedures will or will not "allowed". It's all still in the hands of private insurance companies. The bill merely mandates that every American be insured, and provides financial help to those who can't afford insurance, and penalties to those who can afford insurance but choose to remain uninsured.

This is why healthcare stocks actually rose when the bill was passed, as the private insurers now have 30 million new clients being funneled to them by federal mandate.

Ooh, scary. The President with the dark skin and the funny name actually passed a bill that benefits those in need, rather than those in charge. About time.

All of this "Obamacare" paranoia is the blathering of misinformed, frightened people who have mistaken right wing propaganda for actual news.
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Postby DeniseW » Tue May 04, 2010 9:46 am

marcstck wrote:
DeniseW wrote:
mshusband wrote:Yeah great you have coverage, but now the government will dictate what can and can't be treated (like what's going on with Canada and CCSVI).

At least in the US a lot of people are finding doctors who will currently treat them for CCSVI - you don't see that in Canada without leaving the country.

Soon under Obamacare you won't see that in the US either.

Good luck with all that though ...

Guess you can tell which side of the coin I'm on by that post ... but it's what IS going to happen.




Where do you get your health insurance from??

I couldn't disagree with you more!! The only people in the states that are guaranteed health insurance are public workers, and those on medicare. They can't be canceled, they pay a fraction of what we pay in the private sector for health insurance, and they get it for life. Those of us in the private sector have no protection at all, and our tax dollars help pay for all the wonderful benefits the public sector have. It doesn't matter that (like in our case)..we already pay more than $20,000 a year in premiums and co-pays...we can still be canceled. The new health care bill gives insurance company the option of paying the $100 a day fine rather than insure a person with a serious illness, that might cost more than that. Let's face it $36,500 is a drop in the bucket for some with serious illnesses. Tysabri cost $79,000 a year for 12 infusions.
President Obama and congress worked very hard to bring real health insurance coverage to all americans...not just the public sector. Don't get me wrong, I don't want to take anything away fromt he public sector, as long as the private sector has the same options.
You have to control the profit in health care. There is no way america can sustain the ever rising cost for Medicare, and all the public workers and retirees health care premiums without bankrupting the country. If all our leaders had worked together they could have come up with a modified american style single payer system that could work for everyone.


The healthcare bill, as passed, has no public option, and therefore the government has no mechanism for dictating what procedures will or will not "allowed". It's all still in the hands of private insurance companies. The bill merely mandates that every American be insured, and provides financial help to those who can't afford insurance, and penalties to those who can afford insurance but choose to remain uninsured.

This is why healthcare stocks actually rose when the bill was passed, as the private insurers now have 30 million new clients being funneled to them by federal mandate.

Ooh, scary. The President with the dark skin and the funny name actually passed a bill that benefits those in need, rather than those in charge. About time.

All of this "Obamacare" paranoia is the blathering of misinformed, frightened people who have mistaken right wing propaganda for actual news.


Marc...couldn't agree with you more!! Thanks!!
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Postby thornyrose76 » Tue May 04, 2010 7:30 pm

prairiegirl wrote:...actually, bring on the treatment for those who most need it now!


I'm as prairie girl like your daughter and having been diagnosed at 23 10 years ago I so desperately need thi angioplasty... it is life or death.


My life is in a tailspin. This is so devastating. For ALL OF US WHO HAVEN'T GOT ACCESS TO THE TREATMENT.
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Postby lumpc1 » Wed May 05, 2010 10:45 am

10-4 :cry:
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Postby SofiaK » Thu May 06, 2010 6:22 pm

I've just recently found this forum. Thank you for being here.

MS has taken many years away, but I'm happy CCSVI was brought into the light now. I've had MS for 22 years.

Can I ask please, how can I get the procedure done in Georgetown? Is there a way to request that and skip testing only???

Thank you for any direction.
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Postby Cece » Thu May 06, 2010 7:03 pm

SofiaK wrote:Can I ask please, how can I get the procedure done in Georgetown? Is there a way to request that and skip testing only???

It's hard to get access to the procedure right now. First you could get on the lists for doctors who are doing studies: Dr. Sclafani, Dr. Mehta. I think Georgetown was offering the testing but not the procedure, except on twenty golden-ticket patients for a small study, and then wasn't it that they have 2000 patients in their clinic and would treat them first? I cannot remember exactly. Once you get on some lists, the next thing you can do is try to find someone locally who is interested. There's a website with all the IRs in every state. People have had some success writing to IRs with some of this information and asking if they would be interested in investigating this in them. Hope this is helpful for a start, I hear you about having had m.s. for too long (I've had some symptoms of it nearly all my life) and I am hopeful that this is as big as it potentially could be.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby SofiaK » Sun May 09, 2010 6:11 pm

Thanks for the info.

I just don't know if I can endure the long flight to Bulgaria BUT it's in July!Still, I'm hoping for treatment closer.

I need to get this done sooner rather than later, but . . . I don't know . . . I'm confused.
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doppler test Georgetown

Postby Stayfit » Mon May 10, 2010 7:54 am

Hello Denise I am from Pa met at Georgetown the day of your son's procedure lost your e-mail. I'll get doppler results tomorrow. What experience is there at Washington Hospital Center concerning CCSVI testing?
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health care coverage and CCSVI

Postby Stayfit » Mon May 10, 2010 9:23 am

The problem of getting treatment for CCSVI is relevant to the larger national discussion of Health Care Delivery in general. Although elected representative ostensibly write and implement legislation, who influences their decisions. Many folks here, have been raising the question of drug company's political influence because of there financial interest. And further raise 2 questions, if treating CCSVI is far less expensive than drug treatment and there have been so many examples of great results what is really holding back diagnosis and treatment? Dr. Zamboni spoke the other day of his love of science, seeking the truth and his desire to bringing people together. My desire, is to follow that path on the way to treatment and an improved life.
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