NMSS Updated CCSVI statement - alludes to Dr. Dake and Holly

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NMSS Updated CCSVI statement - alludes to Dr. Dake and Holly

Postby HappyPoet » Tue Dec 01, 2009 8:05 pm

Today the NMSS updated their statement on CCSVI.

Due to vision problems, I can't compare, word for word, this new 12/1/09 statement to the previous statement of 11/24/09; however, I did notice a new paragraph (near the end of the statement) that alludes to Dr. Dake's work at Stanford and Holly's death:

There have been anecdotal reports of surgical attempts to treat CCSVI in people with MS. The details and outcomes of these attempts have not been published, so it is not possible to fully evaluate the value or safety of this procedure. However, one death following surgery has been reported.


Below are the 12/1/09 and 11/24/09 NMSS statements if anyone would like to compare them more than I am able to:

~~~~~~~~~~~~~

http://www.nationalmssociety.org/news/n ... x?nid=2206

Dec 01, 2009

UPDATE: Research into Blood Flow in the Brain and Venous Insufficiency, or CCSVI, in Multiple Sclerosis

Recent reports have suggested that a dysfunction of brain blood flow and/or blood drainage may be involved in MS. For example, in one study involving 65 people with different types of MS compared with 235 people who were healthy or had other neurological disorders, a strong relationship was found between MS and signs of venous insufficiency – suggesting that blood drainage by veins may be blocked, causing or contributing to nerve tissue damage. This study, by Paulo Zamboni, MD (University of Ferrara - Ferrara, Italy) and colleagues, was published in June 2009 (J Neurol Neurosurg Psychiatry 2009; 80:392-399). If confirmed, these findings may open up new research avenues into the underlying pathology of MS as well as potential new approaches to therapy. Further research is now underway. The National MS Society has invited research proposals to investigate this lead, and is in active discussions with the MS Society of Canada about the possibility of collaborative funding of CCSVI research.

The idea that MS may involve a problem in blood circulation was an early theory that was eventually dismissed as research suggested that immune-system attacks and inflammation played a pivotal role in the damage to the nervous system. However, some recent studies have suggested that abnormal blood flow in the brain might also contribute to nervous system damage.

In the recent study by Dr. Zamboni and colleagues, they screened for abnormalities of blood outflow in major veins draining from the brain to the heart in 65 people with different types of MS, compared with 235 people who were either healthy or who had other neurological disorders. They used sophisticated sonography techniques to detect abnormalities of venous drainage. The investigators found significant evidence of slowed and obstructed drainage in the veins draining the brain in many of those with MS. They also found evidence of the opening of “substitute circles” – where the flow is deviated to smaller vessels to bypass obstructions, and these were often found to have reverse flow (reflux) of blood back into the brain.

The investigators call this venous obstruction “chronic cerebrospinal venous insufficiency,” or CCSVI. The treatment status of the people with MS (whether or not they were on an MS disease modifying drug) did not appear to influence whether they showed signs of CCSVI. The authors speculate that the reverse flow of blood back into the brain might set off the inflammation and immune-mediated damage that has been well described in MS.

If confirmed, these findings may open up new research avenues into the underlying pathology of MS, and further research is now in progress. One study getting underway was described at the 2009 ECTRIMS meeting in September. It involves a collaboration between researchers in Italy, Buffalo (NY) and Birmingham (AL) who are attempting to treat venous obstruction in 16 individuals using balloon dilation such as has been used for many years to treat blocked arteries. A larger-scale clinical study is also getting underway in Buffalo with the aim of evaluating the prevalence of venous obstruction in people with MS. This study does not involve treatment of obstructions.

There have been anecdotal reports of surgical attempts to treat CCSVI in people with MS. The details and outcomes of these attempts have not been published, so it is not possible to fully evaluate the value or safety of this procedure. However, one death following surgery has been reported.

Many questions remain about how and when this phenomenon might play a role in nervous system damage seen in MS, and at the present time there is insufficient evidence to prove that this phenomenon is the cause of MS.

Frequently Asked Questions About CCSVI and MS

Q: Do these reports of a possible association between insufficient vein drainage and MS mean that MS is caused by venous insufficiency?
A: No. Based on results published about these findings to date, there is not enough evidence to say that obstruction of veins causes MS, or to determine when this obstruction may occur in the course of disease.

Q: If CCSVI turns out to be important in MS, can it be treated?
A: No one knows yet. Surgical procedures for CCSVI in MS are still experimental and should be undertaken only as part of formal clinical trials that include all of the standard safeguards that are followed in such trials. At least one small clinical trial is getting underway, with the aim of evaluating benefits and risks of treating venous obstruction in people with MS.

Q: I have MS. Should I be tested for signs of CCSVI?
A: No, unless you are involved in a research study exploring this phenomenon, since at this time there is no proven therapy to resolve any abnormalities that might be observed, and it is still not clear whether relieving venous obstructions would be beneficial.

Q: Does CCSVI make the standard treatments of MS meaningless?
A: No. There is ample evidence proving that the FDA-approved therapies for MS provide benefit for people with most forms of MS.

Q: Will the National MS Society fund research into CCSVI in MS?
A: The National MS Society is interested in funding research in CCSVI in MS. The Society welcomes research proposals from any qualified investigators whose research questions are relevant to multiple sclerosis. All proposals received are thoroughly evaluated for their relevance and excellence by our volunteer scientific peer review panels. We have invited researchers to apply for grant funding to explore this lead, and we are in discussions with the MS Society of Canada about the possibility of collaborative funding of CCSVI research. If we receive a proposal related to CCSVI that is found to be outstanding and relevant to MS, we would likely commit to fund such a study.

~~~~~~~~~~~~~~

Nov 24, 2009

Research into Blood Flow in the Brain and Venous Insufficiency, or CCSVI, in MS - UPDATED

A few recent reports have revived ages-old speculation about a possible dysfunction of brain blood flow and/or drainage in individuals who have MS. For example, in one study involving 65 people with different types of MS compared with 235 people who were healthy or had other neurological disorders, a strong relationship was found between MS and signs of venous insufficiency – suggesting that blood drainage by veins may be blocked, causing or contributing to nerve tissue damage. This study, by Paulo Zamboni, MD (University of Ferrara - Ferrara, Italy) and colleagues, was published in the June 2009 (J Neurol Neurosurg Psychiatry 2009; 80:392-399). If confirmed, these findings may open up new research avenues into the underlying pathology of MS. Further research is now underway.

The idea that MS may involve a problem in blood circulation was an early idea that was eventually dismissed as more research suggested that immune-system attacks and inflammation played a pivotal role in the damage to nervous system tissues. A few recent studies have posed the idea that lower blood flow in the brain might contribute to nervous system damage.

In the recent study by Dr. Zamboni and colleagues, they screened for abnormalities of blood outflow in major veins draining from the brain to the heart in 65 people with different types of MS, compared with 235 people who were either healthy or who had other neurological disorders. They used sophisticated sonography techniques to detect abnormalities of venous drainage. The investigators found significant evidence of slowed and obstructed drainage in the veins draining the brain in many of those with MS. They also found evidence of the opening of “substitute circles” – where the flow is deviated to smaller vessels to bypass obstructions, and these were often found to have reverse flow (reflux) of blood back into the brain.

The investigators called this venous obstruction “chronic cerebrospinal venous insufficiency,” or CCSVI. The treatment status of the people with MS did not appear to influence whether they showed signs of CCSVI. The authors speculate that the reverse flow of blood back into the brain might set off the inflammation and immune-mediated damage that has been well described in MS.

If confirmed, these findings may open up new research avenues into the underlying pathology of MS, and further research is now underway. One study getting underway was described at the 2009 ECTRIMS meeting in September. It involves a collaboration between researchers in Italy, Buffalo (NY) and Birmingham (AL) who are attempting to treat venous obstruction in 16 individuals using balloon dilation such as has been used for many years to treat blocked arteries.

Many questions remain about how and when this phenomenon might play a role in nervous system damage seen in MS, and at the present time there is insufficient evidence to suggest that this phenomenon is the cause of MS.

Frequently Asked Questions About CCSVI and MS

Q: Do these reports of a possible association between insufficient vein drainage and MS mean that MS is caused by venous insufficiency?
A: No. Based on results published about these findings to date, there is not enough evidence to say that obstruction of veins causes MS, or to determine when this obstruction may occur in the course of disease.

Q: If CCSVI turns out to be important in MS, can it be treated?
A: No one knows yet. At least one small study is testing the effects of balloon dilation inside an obstructed vein to determine whether that procedure would be beneficial. Surgical procedures for CCSVI in MS are still experimental and should be undertaken only as part of formal clinical trials that include all of the standard safeguards that are followed in such trials.

Q: I have MS. Should I be tested for signs of CCSVI?
A: No, unless you are involved in a research study exploring this phenomenon, since at this time there is no proven therapy to resolve any abnormalities that might be observed, and it is still not clear whether relieving venous obstructions would be beneficial.

Q: Does CCSVI make the standard treatments of MS meaningless?
A: No. There is ample evidence proving that the FDA-approved therapies for MS provide benefit for people with most forms of MS.

Q: Will the National MS Society fund research into CCSVI in MS?
A: The National MS Society welcomes research proposals from any qualified investigators whose research questions are relevant to multiple sclerosis. All proposals received are thoroughly evaluated for their relevance and excellence by our volunteer scientific peer review panels. We have spoken with researchers in the field and we anticipate that we will be receiving grant applications on this subject at our next grant deadline. If we receive a proposal related to CCSVI that is found to be outstanding and relevant to MS, we would likely commit to fund such a study.
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Postby jay123 » Tue Dec 01, 2009 8:12 pm

If anyone is in touch with Holly's family I wish they would get them to make a very high level complaint to the MS society about that statement.
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Postby ozarkcanoer » Tue Dec 01, 2009 8:15 pm

I was only half aware of Holly's death since I didn't join until October. But from what I understand from members of this board, Holly's own family were assured by her own doctors at home that the stenting had nothing to do with her death. I wonder how much research the experts at the NMSS did before posting this on their website. It is so misleading. :x :x
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Postby ozarkcanoer » Tue Dec 01, 2009 8:32 pm

An email I just sent to my local NMSS chapter :

----------------------------------------

From the NMSS statement about CCSVI on the NMSS home page :

"There have been anecdotal reports of surgical attempts to treat CCSVI in people with MS. The details and outcomes of these attempts have not been published, so it is not possible to fully evaluate the value or safety of this procedure. However, one death following surgery has been reported."

1. Why is the NMSS reporting anecdotal information on it's website ?
2. Did anyone at the NMSS research the one death after surgery ?

It is irresponsible to report anecdotal information without giving a source. Especially when a death is involved. If the NMSS understood the situation, they wouldn't publish such an incendiary statement. It is incendiary because it angers many of us who are advocating for CCSVI and do understand the situation more clearly.
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Postby marcstck » Tue Dec 01, 2009 9:28 pm

Actually, this statement is entirely accurate. There was one death following the surgery.

Despite the assurances of Holly's doctors, and her family, nothing has ever been published regarding a medical review into her tragic death. Brainstem infarcts are a known complication of endovascular surgery done in and around the cranium. Although Holly's mother died under similar circumstances, that's not to say that the stress put on her vascular system during surgery didn't precipitate the failure of an already existing weakness.

I'd like to know precisely what evidence exists that Holly's death was completely unrelated to the procedure she underwent. Without a complete medical workup, I'm not even sure how such an assumption could be made.

There may indeed be such evidence, but it's never been presented.

I know this has been a taboo subject here, and it's not my intent to upset anybody. But I do think that such questions have validity...
Last edited by marcstck on Tue Dec 01, 2009 9:42 pm, edited 1 time in total.
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Postby Sharon » Tue Dec 01, 2009 9:34 pm

Jay123 and Ozark,

I was in contact with Holly's family soon after she arrived at the hospital in Phoenix. I ask that everyone who is interested in the circumstances on Holly's death, please read the following thread
http://www.thisisms.com/ftopic-7886-day ... ly-30.html

From that thread - written on Aug 19, 2009
To All Holly's TIMS friends,
Please understand that this post was not written sooner because we needed to respect the privacy of Holly and her family. It is with a heavy heart that I type this sad news.

On Sunday, Holly flew back to Arizona with her best friend. During the flight Holly fell asleep and she never woke up. Holly was immediately taken to St. Joseph's Hospital in Phoenix. The tests showed she had suffered a massive stroke. The stroke was caused by an arterial bleed in the brainstem. The MRI did not show an aneurysm. The doctors said there possibly could have been a lesion which would have caused a weakness in the artery, but they could not confirm. Holly's Coumadin levels were within the low range of 2.0 when she was tested at Stanford and at St. Joseph's. The stroke was not caused by the Coumadin; but once the bleed started, because she had Coumadin in her system, the bleed would not stop. Sunday evening the family was told that because of the extensive damage in the brainstem, Holly would not survive.

The family (which includes her boyfriend, John) are at her bedside. I hope you all do not mind, but I copied and pasted your posts in an email to John hoping the posts would give the family comfort.

Trudi, Holly's sister wanted to make sure that we understood the stroke was not caused by the procedure at Stanford. This was confirmed by the neurologists at St. Joe's and Dr. Dake (Dr. D was with Holly in Phoenix Sunday afternoon ).

Trudi will call me with any changes and once things settle down, she will write a post on TIMS. The family thanks each of us for the friendship, the support, and now the prayers which we have given to Holly. My heart goes out to all of you as you read this.

Remembering Holly and her sweet laugh...a friend who I never needed to meet...you are in my prayers Dear Holly.

Sharon


Also, Holly's memorial http://www.thisisms.com/ftopict-7925-holly.html
Note from Holly's sister http://www.thisisms.com/ftopict-8028-holly.html

I am sickened to see the death of Holly being bantered around the Internet. Holly and I shared a fellowship as we were at Stanford at the same time in June of 2009 - we were never able to arrange a time to meet, but, we did offer each other support with continual telephone messages and conversations. Holly recovered quite easily from her first procedure. In August she went back to Stanford for the follow-up and another procedure.

Holly was a dear friend to all of us here at TIMS - we miss her dearly.

Sharon
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Postby Sharon » Tue Dec 01, 2009 9:43 pm

Marc -
I'd like to know precisely what evidence exists that Holly's death was completely unrelated to the procedure she underwent. Without a complete medical workup, I'm not even sure how such an assumption could be made.


There has been a complete medical workup at the Human Brain and Spinal Fluid Resource Center in Los Angeles-for MS research. Dr. Dake asked that a study of the vascular aspects of the disease be completed.

There may indeed be such evidence, but we certainly haven't seen any of it here.


I am not sure if the study has been completed and I have no information if it will be published.

Sharon
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Postby CureIous » Tue Dec 01, 2009 9:49 pm

marcstck wrote:Actually, this statement is entirely accurate. There was one death following the surgery.

I know this has been a taboo subject here, and it's not my intent to upset anybody. But I do think that such questions have validity...


Not sure it is "taboo" as we have discussed it ad nauseum already. The rest is between Holly's family and what they desire to do and they've made their wishes known. What else can we do besides conjecture all day long and rehash the same stuff every time someone "stumbles" across this lightning rod of a story, usually with 25% of the information?

I'll just stay on the fence since the truly unknowns, will remain unknown, and go with what is known, absent any further "revelations".

These sorts of things DO run in families, that much I know having seen it happen (Triple A x 2, and 3 women with spinal cancer all related, taken as young otherwise healthy women), and that explanation + coumadin= very reasonable to me...

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby marcstck » Tue Dec 01, 2009 10:01 pm

CureIous wrote:
marcstck wrote:Actually, this statement is entirely accurate. There was one death following the surgery.

I know this has been a taboo subject here, and it's not my intent to upset anybody. But I do think that such questions have validity...


Not sure it is "taboo" as we have discussed it ad nauseum already. The rest is between Holly's family and what they desire to do and they've made their wishes known. What else can we do besides conjecture all day long and rehash the same stuff every time someone "stumbles" across this lightning rod of a story, usually with 25% of the information?

I'll just stay on the fence since the truly unknowns, will remain unknown, and go with what is known, absent any further "revelations".

These sorts of things DO run in families, that much I know having seen it happen (Triple A x 2, and 3 women with spinal cancer all related, taken as young otherwise healthy women), and that explanation + coumadin= very reasonable to me...

Mark.


Fair enough, although I don't know that this has been discussed "ad nauseam".

Like I said, I don't mean to get anybody upset, so like you, I I'll be content to stay on the fence.
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Postby marcstck » Tue Dec 01, 2009 10:02 pm

Sharon wrote:Marc -
I'd like to know precisely what evidence exists that Holly's death was completely unrelated to the procedure she underwent. Without a complete medical workup, I'm not even sure how such an assumption could be made.


There has been a complete medical workup at the Human Brain and Spinal Fluid Resource Center in Los Angeles-for MS research. Dr. Dake asked that a study of the vascular aspects of the disease be completed.

There may indeed be such evidence, but we certainly haven't seen any of it here.


I am not sure if the study has been completed and I have no information if it will be published.

Sharon


Sharon, thanks for that info. I wasn't aware that such a study had been ordered. It would be helpful if the results were published, whatever the findings...
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Postby MamaGirl » Tue Dec 01, 2009 10:39 pm

marcstck wrote:
Actually, this statement is entirely accurate. There was one death following the surgery.

I know this has been a taboo subject here, and it's not my intent to upset anybody. But I do think that such questions have validity...
----------------------------------------------------------------------------------
Isn't this is what we are here for? To ask questions and have the right to the TRUTH, no matter what????? I for one am not upset, I believe your questions absolutely have validity. If we have to be afraid to ask questions, then what good are we here for? We are here to support one another and to ASK questions that we feel are valid to ask. We ALL want to get better from MS, ALL OF US and we all want to get the information we need about CCSVI... how else will we make stable decisions that we need to make? Good questions Marc... they were in my mind as well. Thank you.
-MamaGirl
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Postby zap » Tue Dec 01, 2009 10:55 pm

marcstck wrote:Actually, this statement is entirely accurate. There was one death following the surgery.


Yes. TECHNICALLY a quite accurate statement - but still a shitty statement for them to make, knowing how it would be interpreted.

Brainstem infarcts are a known complication of endovascular surgery done in and around the cranium.


Yes - again, technically true.

But that is surgery of the arteries.

Brainstem infarcts occur with surgery done to the arteries that feed into the brain (either due to "plaque showers" dislodged or by occlusion of the arteries) ... but I have yet to see any reason to think that endovascular work to the VEINS is associated with brainstem infarcts ... ??
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Postby cheerleader » Tue Dec 01, 2009 11:17 pm

Times like these I wish Jeff and I had just gone to Stanford, had his treatment, gone home and gotten on with life.

But I asked Dr. Dake if he minded if I shared the information with a community of friends online...and he said fine. I sometimes wonder if we will both regret that decision. I hope not, but it's not looking so good.

In the end, I know we are only responsible for ourselves- but I don't think folks understand how upsetting this is-
later,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby 10yearsandstillkicken » Tue Dec 01, 2009 11:26 pm

Times like these I wish Jeff and I had just gone to Stanford, had his treatment, gone home and gotten on with life.


There seems to be bad that goes along with good. I would say that you have done so much good that a bit of pain was bound to get mixed in. I for one can read, research and make an informed decision. Keep up the good work.
Chuck
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Postby CureIous » Tue Dec 01, 2009 11:29 pm

Fair enough, although I don't know that this has been discussed "ad nauseam".
Like I said, I don't mean to get anybody upset, so like you, I I'll be content to stay on the fence.


Fair enough too, I'll amend my overreach to "gone as far as possible with the current info at hand". :) Mark.
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