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Posted: Tue Apr 27, 2010 5:49 pm
by girlgeek33
mmcc wrote: I am a person willing to take a high level of risk to avoid further disability, but comparing PML to an insicion infection is hardly realistic. The risk of PML so far is estimated at 1 in 1,000, with not all cases fatal. The risk of death from angioplasty (in arteries - don't know for veins) is higher than that.
It is important to realize that neither Tysabri nor Liberation surgery, or any other medical treatment, including aspirin is risk free. The risks from libertation surgery cannot possibly be completely known at this point. I would remind you that a year into Tysabri as a monotherapy there were NO cases of PML. Liberation surgery has not been around long enough to know what the long term risks might be.
That said, I am waiting for my date to have it (and I took Tysabri, too).
I beg to differ. Angioplasty has been a well established, well practiced procedure for more than 3 decades. If this were a brand new, never performed procedure, then you would have a point. BUT, there has never been ANY reason to suggest that improved blood flow would ever have long term negative effects. The risks are early on for the most part. If something adverse were to happen, it would be earlier and not likely to be a year down the road.
This is not the invention of the wheel and it needs to be studied. This is a new use for the wheel, so understanding the benefits seems to be more the case. For that it seems to be overkill to have Drs halted doing this for us.
Posted: Tue Apr 27, 2010 5:52 pm
by girlgeek33
mshusband wrote:re: Dr. Bonn being shut down ...
Is it possibly because all these people screamed his name from the rooftop over the internet? I've seen his name on SEVERAL websites including this one and Facebook. If people haven't caught on that there are those against CCSVI out there who would call up a hospital and stop doctors from doing this ... you're naive. I think we've seen that at this point re: Dr. Dake, Dr. Sclafani, Dr. Bonn ...
We need to pass these names along through back-channels ... secretly. To help each other ...
A doctor who isn't doing the CCSVI procedure is just as good as a doctor who is against the CCSVI procedure. They're only as good for the patients when they're working.
We're trying to warn you guys ... maybe the next doctor found will be kept quiet and we'll go from there ...
I'm very sad again tonight through all the ups and downs of this ... this is another down.
Dr. Sclafani ... give us some good news and tell us you'll be back to plumbing soon???
Hospital administration seemed to be behind him. They added another scheduler and more phone lines to handle CCSVI volume. Legal stepped in today and shut him down "for a multitude of risk concerns."
Posted: Tue Apr 27, 2010 6:02 pm
by L
girlgeek33 wrote:there has never been ANY reason to suggest that improved blood flow would ever have long term negative effects.
Well said.
And cardiologists don't consider angioplasty dangerous so why should I? To be honest, I'd be happier with far shorter odds.
Posted: Tue Apr 27, 2010 6:29 pm
by girlgeek33
L wrote:girlgeek33 wrote:there has never been ANY reason to suggest that improved blood flow would ever have long term negative effects.
Well said.
And cardiologists don't consider angioplasty dangerous so why should I? To be honest, I'd be happier with far shorter odds.
L, have you been liberated already? I'm just astonished at the lengths that have been taken to get in the way of an "easy fix" that makes such drastic improvements!
Posted: Tue Apr 27, 2010 6:41 pm
by L
girlgeek33 wrote:L wrote:girlgeek33 wrote:there has never been ANY reason to suggest that improved blood flow would ever have long term negative effects.
Well said.
And cardiologists don't consider angioplasty dangerous so why should I? To be honest, I'd be happier with far shorter odds.
L, have you been liberated already? I'm just astonished at the lengths that have been taken to get in the way of an "easy fix" that makes such drastic improvements!
Nope, but I shall be, even if it is DIY (and bear in mind that I am very, very squeamish.. but intrepid.)
But I feel a little bad clogging up the good doctor's thread.. Sorry Dr Sclafani..
Posted: Tue Apr 27, 2010 8:40 pm
by drsclafani
my only comment is......
when do we abandon ultrasound and MRV?
the incidence of abnormality in MS is so high, that it has become irrelevant to have a noninvasive tesst to screen. unnecessary cost and inappropriate to deny the gold standard to anyone.
I fear it is just a method to delay treatment.
only reason to do noninvasives is to get enough experience to use it for followup screening
Posted: Tue Apr 27, 2010 8:46 pm
by drsclafani
Kirtap wrote:Dr,
Suppose in a couple of months or years, the stent is a problem. It's damaged or it has to be removed for reson xyz. Can it be removed?
not really, at least not easily
Posted: Tue Apr 27, 2010 8:48 pm
by drsclafani
SofiaK wrote:Dear Dr. S:
Is there any way to do an MRV at your office/location? The closest place that I can do an MRV is an 8 hour drive. Then, I would have to be driven another 8 hours to your location on another day.
With thanks,
Sofia
Posted: Tue Apr 27, 2010 8:49 pm
by drsclafani
SofiaK wrote:Dear Dr. S:
Is there any way to do an MRV at your office/location? The closest place that I can do an MRV is an 8 hour drive. Then, I would have to be driven another 8 hours to your location on another day.
With thanks,
Sofia
that was my version of cogfog
sofia, of course. dont worry about it.
i am not sure that the test is even necessary
Posted: Tue Apr 27, 2010 8:53 pm
by drsclafani
ssmme wrote:Dr. Sclafani,
In 2002 I gave birth to triplets. The kids did great. I started bleeding to death. Before they could get back with the blood they began pumping me full of saline to give my heart something to pump. After several units of saline, they pumped 3 units of blood into me of which two bled out before they got the bleeding to stop. The third pint was a bit of replenishment. My doctors told me I was still "a quart or two low" as a NASCAR comparison I'm sure. I then developed bell's palsy from the swelling that occurred following all this trauma to my body.
It was after this experience that I (looking back) can see symptoms of MS began to appear. I was officially diagnosed in 2006.
Could venous "issues" develop from a trauma like this? Or am I trying to make an association where none exists?
Thanks,
Marcia
marcia
many people have such hemorrhage and do not develop MS. it is likely that your bleeding did not cause your MS. However a hyperdynamic state can cause collateral pathways to expand to a point where they do not revert back. Thus some malformations show themselves after such an event.
Marcia, i have a question for you. what is it like to care for triplets in the face of MS
Re: My Test Results - Barrie, Ontario, Canada
Posted: Tue Apr 27, 2010 9:05 pm
by drsclafani
seanthecaper wrote:I was tested for CCSVI by Angela Hume at the Barrie Clinic under the direction of Dr. Sandy MacDonald on April 15.
The test took about 20 minutes and followed Zamboni protocol to a tee.
The results were:
Right:
The cerebral venous outflow appears patent with no evidence of venous thrombosis. Venous insufficiency was eveident with reflux in the internal jugular vein at 0 and 90 degrees. B mode abnormality noted.
Left:
The cerebral venous outflow appears patent with no evidence of venous thrombosis. Venous insufficiency was evident with reflux in the internal jugular vein at 0 and 90 degrees. The cross sectional area of the internal jugular vein is larger than the cross sectional area at 0 degrees resulting in a negative delta (positive result). B mode abnormality noted.
I submitted these to this thread since I am on Dr. Sclafini's waiting list and was hoping he could comment on the results. This negative delta is what i need some meaning on, since i don't understand it. I tried calling Angela who did the testing but she is extremely busy currently.
Any help here would be appreciated,
Sean McNeil
Specifically,
Sean
my comments are educational, since i havent seen the study myself.
your veins show reflux, meaning blood flow goes opposite the supposed direction. This means that the blood is altering direction to get out of the head by going up in order to go through collaterals and out.
The Delta if formed by subtracting the diameter of the vein while sitting from the diameter of the vein while supine.
in a normal person, the diameter of the vein sitting is smaller than when lying down, thus sutracting the smaller number from the larger number gives a positive numer. Which is a normal result.
in someone with CCSVI the sitting vein is larger and thus subtracting the larger number from the smaller number give you a negative number. This is an abnormal result.
I do not like the terminology. it is confusing to many.
So i cannot wait to meet you, sean.
Posted: Tue Apr 27, 2010 9:07 pm
by drsclafani
Nunzio wrote:Sean,
the jugular vein cross sectional area (CSA) should be larger when you are laying down (0 degrees) and smaller when you are sitting up (90 degrees)
If the difference=delta is negative or zero then this is one of Dr. Zamboni criteria and they call it positive results
Hope this makes it clear for you.
dr nunzio answers some questions.....i could not answer the question better
Posted: Tue Apr 27, 2010 9:18 pm
by drsclafani
girlgeek33 wrote:Sadly legal shut down Dr Bonn today. I have a confirmed email from Dr Bonn.
what I'd liketo understand is how can a procedure be shut down, like angioplasty when a patient is paying out of pocket, making it an elective surgical procedure?
Feels like discrimination to me! I might understand this more if the actual procedure were in some way new, but it really isn't. And it isn't as if anyone in the MS community has had anything horribly adverse happen from any of the angio procedures! What can we as patients do?
the hospital has the right and obligation to allow or disallow a procedure from being performed. Much has to do with safety, privileging, standard of care, peer review, politics, influence, malpractice risk, adverse publicity
what can you do? .......you already have . there are several trials planned or begun. The evidence will either proove zamboni right or wrong
IRB
Posted: Tue Apr 27, 2010 9:41 pm
by newlywed4ever
Am up way past my bedtime but trying to educate myself re: IRBs. If I understand correctly, once the hospital IRB has approved research/procedure, then it is submitted to US Dept of Health & Human Services? If so, can you share with us whether Kings Co. is at least that far in the process? And once it's at the federal level, is that also lengthy in regards to time?
DHHS
Posted: Tue Apr 27, 2010 9:51 pm
by newlywed4ever
And...do you have any thoughts as to whether it would be a good idea to "swamp" US DHHS with letters in support of CCSVI/angioplasty trials?