DrSclafani answers some questions

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

Postby drsclafani » Sat May 08, 2010 11:04 am

rettahb wrote:I'm nervous about taking from her blog with out her permission.....

"- The 'old' stents had to be removed as well as clots that were starting to form. Balloons were tried again, as the Dr. and I had discussed it before the surgery that since he was going in we should try balloons. Well my veins are just being very difficult and balloons just wouldn't stay open and stents had to be used again. "

Sounds like they were replaced to me.
~r


its on the internet and she wrote it. it public.

I find it incomprehensible that stents were removed and new stent placed.
Stents need to be removed surgically.
Perhaps new stents or stent grafts were placed INSIDE the old ones or in different locations. This can be a slippery slope now. Clot begets clot

it will be important for all us doctors to understand the circumstances:
where were the stents
were they self expanding or balloon expanded. were they nitinol?
Did the stents treat the central area where the majority of real abnormalities are located?
Was anticoagulation used?
what type of anticoagulation, anti platelets too?
Was she compliant with the medication regime?
Did someone press on the stent?
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Postby Lyon » Sat May 08, 2010 11:06 am

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Postby Johnson » Sat May 08, 2010 11:24 am

Hi Doc.

I was wondering if you might comment on anti-coagulants, etc. in relation to cerebral venous angiomae.

From my latest MRI/MRV:
There is an abnormal venous structure emanating from the right cerebellar hemisphere, and ascending to join the right internal cerebral vein, suggestive of a developmental venous anomaly. No evidence of a cavernoma is seen in this region. There is a second developmental venous anomaly in the left corona radiata, which drains into the left internal cerebral vein. There is a 6-mm cavernoma in the left corona radiata related to this DV A.
I have some concern about how these DVAs might react to a combination of liberation and blood thinning medication. IE: brain bleed.

I find it curious too, that these are described as DVAs, yet I was asked about head trauma in relation. Further, the second DVA has never been observed in MRI before now, and I am not so sure that it is congenital.

Thanks very much for any response.
My name is not really Johnson. MSed up since 1993
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Postby 1eye » Sat May 08, 2010 11:31 am

New stents in her neck? Ooooh it's gonna be hard to watch *that* video again.

My best wishes for her recovery.
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Postby Cece » Sat May 08, 2010 12:36 pm

drsclafani wrote:Perhaps new stents or stent grafts were placed INSIDE the old ones or in different locations.

Here is her report on it. Maybe she is mistaken somehow? It was also the first week after her stents were placed in, but I am assuming now that it is not possible to remove or move stents with the catheter even within the first week?

from gabbycats blog wrote:Going into the procedure this time was less troubling mentally. I knew all the nurses and doctors and the know me. So hugs all around when I walked in..although I did need my cane this day and I hadn't needed it in a week.

Anyway same as before except.................. The top part that appeard to have been collapsed had totaly shut down blood flow to the vien and the blood was going back up and trying to go around it's old route. (Thus that hot liguid sensations to the heart-NOT anxiety folks, that's your heart not getting the blood back to it. I will be researching that more in depth.)

The 'old' stents had to be removed as well as clots that were starting to form. Balloons were tried again, as the Dr. and I had discussed it before the surgery that since he was going in we should try balloons.

Well my veins are just being very difficult and balloons just wouldn't stay open and stents had to be used again. He moved it up to a higher area in the confluens of the left jugular and the other has been lowered in the clavical area of the jugular.

Well, then the center was collapsing so 2 more were placed center. Neuro-surgery was on stand by just in case, but wasn't needed. Let me tell you, I'm just a difficult case, this is all not usual. Remember how bad my vein was to start? Dried blood clots in a live human body.

This time after the procedure I needed a shot of morphine. The pain in my ear was horrible as well as in my neck. But, I didn't need my cane to walk out of the hospital again! The burning pinching pain that started down my arms and legs again was gone, the pressure that had built up in my jaw and left face is gone again.
"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 bluesky63 » Sat May 08, 2010 1:11 pm

Hi again Dr. Sclafani. :-) New idea. How hard would it be to have a neurologist do a basic neuro exam on a libertati before and after the procedure?

I had to do this as part of the clinical trial when Rebif was first introduced -- a quickie, basic neuro exam every month performed by the same medcial professional. It was useful for the trial, for the doctor, and for me.

Take a video of it and you also have material for the new movie.
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Postby drsclafani » Sat May 08, 2010 1:38 pm

bluesky63 wrote:Hi again Dr. Sclafani. :-) New idea. How hard would it be to have a neurologist do a basic neuro exam on a libertati before and after the procedure?

I had to do this as part of the clinical trial when Rebif was first introduced -- a quickie, basic neuro exam every month performed by the same medcial professional. It was useful for the trial, for the doctor, and for me.

Take a video of it and you also have material for the new movie.

dr valsamis uses about one hour to get a detailed history and physical
then it takes time to write the report. Best case scenario 4-5 per day, but she only has a couple of hours per week to do this. thus the need to recruit additional neurologists because i would targeting 10 patients per week to catch up
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Re: black arts and sciences

Postby 1eye » Sat May 08, 2010 1:56 pm

drsclafani wrote:
only by comparing the two groups can we tell how much of the effects was actually due to the treatment.

sometimes the research means well but is not empathic. But science is not empathic, it is raw, unbiased and objective. We need it to sort this out.

i feel your anger and frustration. It is clear to me that you mistrust the medical sciences. when you are on the wrong side of bias, it is infuriating. But who is to say whose bias will ultimately be correct. That is the goal of a trial


I can't agree. I could tell I was on placebo. Any SPMS patient knows when nothing has changed. They'll know, and everybody will chalk it up to science.

Intention to treat? With a well-known proven-impotent psychological bias that's equivalent to no treatment at all? You think this is blinded? It is unethical voodoo of the worst kind. If someone thinks patient bias will be toward treatment, and their bias cures or treats anything, or improves anything, well, I know some cancer patients. Would you like to try convincing *them* that their next chemo course will work if they just believe hard enough, and clap their hands three times? And you'll leave things that way for two years, right?

I know science can be harsh. But to dismount the riders of that horse requires ethics, not lack of science. It requires the spirit and not just the letter of 'do no harm.' Harm can come by inaction as well as action.
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Re: black arts and sciences

Postby drsclafani » Sat May 08, 2010 4:37 pm

1eye wrote:
drsclafani wrote:
only by comparing the two groups can we tell how much of the effects was actually due to the treatment.

sometimes the research means well but is not empathic. But science is not empathic, it is raw, unbiased and objective. We need it to sort this out.

i feel your anger and frustration. It is clear to me that you mistrust the medical sciences. when you are on the wrong side of bias, it is infuriating. But who is to say whose bias will ultimately be correct. That is the goal of a trial


I can't agree. I could tell I was on placebo. Any SPMS patient knows when nothing has changed. They'll know, and everybody will chalk it up to science.

Intention to treat? With a well-known proven-impotent psychological bias that's equivalent to no treatment at all? You think this is blinded? It is unethical voodoo of the worst kind. If someone thinks patient bias will be toward treatment, and their bias cures or treats anything, or improves anything, well, I know some cancer patients. Would you like to try convincing *them* that their next chemo course will work if they just believe hard enough, and clap their hands three times? And you'll leave things that way for two years, right?

I know science can be harsh. But to dismount the riders of that horse requires ethics, not lack of science. It requires the spirit and not just the letter of 'do no harm.' Harm can come by inaction as well as action.


its moot. i cannot figure out to do one ethically and accurately

but will keep trying to figure out the most compelling trial i can
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Dr. Slafani, please answer...

Postby Someday » Sat May 08, 2010 6:03 pm

Dear Dr. Sclafani,

Thank you for all the support and helpful information you have been providing to us MSers on this site. Your kindness and caring are very much appreciated.

I just read on your post that the IRB, (as part of their approval), has designed exclusions for your research. Anyone is excluded if they have a EDSS of 8.5 - 10.

Dr. Sclafani, what would you suggest the MSers who have a EDSS of 8.5 or higher should do to get the CCSVI testing and treatment - what other options do they have?

Please let me know what these MSers can do.

I look forward to your reply and thank you for any suggestions and guidance you can give me.

Take care and God Bless,
Someday
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Re: black arts and sciences

Postby Lyon » Sat May 08, 2010 6:07 pm

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Re: Dr. Slafani, please answer...

Postby drsclafani » Sat May 08, 2010 7:27 pm

Someday wrote:Dear Dr. Sclafani,

Thank you for all the support and helpful information you have been providing to us MSers on this site. Your kindness and caring are very much appreciated.

I just read on your post that the IRB, (as part of their approval), has designed exclusions for your research. Anyone is excluded if they have a EDSS of 8.5 - 10.

Dr. Sclafani, what would you suggest the MSers who have a EDSS of 8.5 or higher should do to get the CCSVI testing and treatment - what other options do they have?

Please let me know what these MSers can do.

I look forward to your reply and thank you for any suggestions and guidance you can give me.

Take care and God Bless,
Someday


we were concerned that risks were higher and that it would be difficult to recognize changes so we excluded such patients.

interpret this to mean that such patients would not be included in the trial.

we will figure out how to address compassionate therapies in such patients
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Postby 1eye » Sat May 08, 2010 7:50 pm

"Of course this pales next to your opinion,"

Sorry, I couldn't read it, my opinion blinded me. Actually it was a good read. Such a friendly ad hominem invitation.

Are you gonna come quietly, or do I hafta mush ya up? :D
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Postby Lyon » Sat May 08, 2010 7:54 pm

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Postby pklittle » Sat May 08, 2010 9:58 pm

Dr Sclafani
When you are "back in the saddle", and you start picking away at the list that you have of those of us wanting you to treat them.... will some of us get angioplasty and others not but think they did for sake of testing the "placebo" effect?
Sorry for the long run on sentence... 8O
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