DrSclafani answers some questions

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

Re: ccsvi

Postby Liberation » Thu Mar 24, 2011 12:51 am

Thanks for your anwser, I really appreciate it. We would be much more ahead if every IRs would be as honest as you about the obstacles we see down the road. I have also strong concerns about monitoring the patients after the procedure. It would be great if there would be some cooperation between the IR who does the procedure and the local IRs who can do the follow-ups, as the latter do not have direct experience with the operation part.

drsclafani wrote:
As for the missing valves, I just read some posts here that it caused pressure and pain behind the eyes for some people when they bend their heads. Could it be a problem for us? I am not sure if I remember correctly, but dr Sinan told me that as long as someone is breathing reflux does not happen even when the valves are permanently open. Did I get it correctly?


i do not entirely agree with that statement. Some patients do consequences of incompetent valves. not all , some


As for incompetent valves, do you mean valves that are permanently open after the treatment? What can be the problem in this case? How frequently do we encounter such a problem after the treatment of the valves? Is there bigger chance for this problem to occur after destroying the annulus than after dilating the leaflets?

As for the application of great balloons, have you experienced also more scarring, intimal hyperplasia besides the higher rate of thrombosis?
What is the thrombosis and scarring/intimal hyperplasia rate with large balloons based on your experience? I would trust more on your figures than I hear from others.
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Re: Is this stenosis in my deep cerebral vein?

Postby Perkele » Thu Mar 24, 2011 9:11 am

drsclafani wrote:perkele
that looks like the carotid artery to me. seems a bit irregular possibly due to some atherosclerosis

DrS


Thank you for your reply,

The thing here is that the picture was taken two years ago when I was 23 years old. I find highly unlikely that what we are seeing here is atherosclerosis. I have been a sportsman all my life and my cholesterol levels have been great according to my doc (HDL=2.2 mmol/l and LDL= 1.1 mmol/l).

I have had three brain MRI:s in two years now and pictures have been evaluated by many radiologists and neuros but none of them has mentioned that there is something worrisome in veins. Although I'm not really convinced that they looked carefully those veins/arteries. Who knows...

At this moment I'm really confused about how to proceed and how worried I should be. I have hyper mobility syndrome diagnosed couple of months ago and I somehow feel that collagen production problems might have affected my veins also.

Should I go to neuro and ask him to order MRA and possibly MRV?

Your advice is greatly appreciated.

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Re: Is this stenosis in my deep cerebral vein?

Postby drsclafani » Thu Mar 24, 2011 10:52 am

Perkele wrote:
drsclafani wrote:perkele
that looks like the carotid artery to me. seems a bit irregular possibly due to some atherosclerosis

DrS


Thank you for your reply,

The thing here is that the picture was taken two years ago when I was 23 years old. I find highly unlikely that what we are seeing here is atherosclerosis. I have been a sportsman all my life and my cholesterol levels have been great according to my doc (HDL=2.2 mmol/l and LDL= 1.1 mmol/l).

I have had three brain MRI:s in two years now and pictures have been evaluated by many radiologists and neuros but none of them has mentioned that there is something worrisome in veins. Although I'm not really convinced that they looked carefully those veins/arteries. Who knows...

At this moment I'm really confused about how to proceed and how worried I should be. I have hyper mobility syndrome diagnosed couple of months ago and I somehow feel that collagen production problems might have affected my veins also.

Should I go to neuro and ask him to order MRA and possibly MRV?

Your advice is greatly appreciated.

Perkele


Since you are young, then the diagnosis would not be atherosclerosis. It looks like fibromuscular dysnplasia. but since you say you have hypermobility syndrome, the findings are consistent with ehlers danlos syndrome of the carotid artery.

it is possible to have microinfarcts of the brain that can give white matter lesions and that might lead one to a diagnosis of MS when EDS should be strongly considered.

Of course, i cannot give you particular advice because i know so little of your case. If you were my patient, I would get a proper CCSVI ultrasound to satisfy yourself that you do not have CCSVI.

if i were you, i would consult with a vascular specialist to clarify whether the diagnosis was actually EDS and then i would review with my diagnosing neurologist the clinical evidence.Since MS is a diagnosis of exclusion, you might not have MS at all.


what falls through the cracks!
Last edited by drsclafani on Thu Mar 24, 2011 6:37 pm, edited 1 time in total.
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Postby pklittle » Thu Mar 24, 2011 11:23 am


like i have said all along, we have to get some consensus on how to do this procedure before we can compare it to the gold standard, whatever we think that is.



Are the doctors any closer to coming to a consensus, particularly after the meeting in Italy?
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thank you Dr S!

Postby nico » Thu Mar 24, 2011 4:18 pm

dr s

thankyou so much for looking at my images and providing such valuable feedback.

thanks again, nico
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Postby drsclafani » Thu Mar 24, 2011 6:38 pm

pklittle wrote:

like i have said all along, we have to get some consensus on how to do this procedure before we can compare it to the gold standard, whatever we think that is.



Are the doctors any closer to coming to a consensus, particularly after the meeting in Italy?


no, i dont think so.
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Postby pklittle » Thu Mar 24, 2011 7:12 pm

drsclafani wrote:
pklittle wrote:

like i have said all along, we have to get some consensus on how to do this procedure before we can compare it to the gold standard, whatever we think that is.



Are the doctors any closer to coming to a consensus, particularly after the meeting in Italy?


no, i dont think so.


:cry:
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Postby Cece » Thu Mar 24, 2011 7:57 pm

We have never treated by angioplasty a disease like this. pure valvular obstructions i am not sure we need to continue to think that restenosis is an essential component of this. We just have to figure out how to do this properly.

It would be tremendous if you are right about that! It's been said that angioplasty is not durable anywhere in the body, why should it be durable here, but if you are right that this is an entirely new sort of disease (pure valvular obstructions) than we should not be limited by the success or failure of other types of angioplasty.
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Postby Liberation » Sat Mar 26, 2011 2:36 pm

Dear dr Sclafani,
I am wondering what is your opinion about my IJVs and azygos, I went through the procedure in December and they found problem only with my right IJV. They did the dilation with a very small ballon, 6x20. The procedure took only circa 30 minutes. As I have ppms with motoric function problems, Iam wondering if there is more there.

Image

Image

Image[/url]

I know you are those very few doctors who care about examining lumbar veins. You mentioned that you met or talked to dr Salvi recently. If I remember correctly he as a neurologist was pretty much interested in finding an association between ccsvi and ppms. Do they have more on this?

You mentioned tha last time that dr Zamboni reports that PPMS is associated with hypoplasia or atresia of the lumjbar veins. however at the current time it is not possible to treat these. Dr zamboni also noted that azygous veins were commonly narrowed in patients with ppms. Do you have more on this? The implication of lumbar veins are always likely with ppms or azygos itself can cause this problem too?
thx
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Postby Liberation » Sat Mar 26, 2011 2:41 pm

I tried to put the images of my veins on the page, but somehow only the addresses of them got there :(
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Postby Liberation » Sat Mar 26, 2011 2:52 pm

Cece wrote:Liberation, of those 400 patients, would some be patients who he did not see again and who received no follow-up? Or is that 400 patients who have had successful doppler ultrasounds showing flow some weeks or months post-procedure?

He does use a strong anticoagulant regimen imo (Lovenox for one week, Plavix for...not sure how long, plus aspirin). There were also a few patients of Dr. Sinan's in December who clotted. That would not be in the first 100. I look forward to seeing publications out of Kuwait! Dr. Sinan made a very good impression at the Brooklyn symposium, he comes across as dynamic and intelligent.


Hi Cece, he did not eleborate on that. It is hard to imagine that foreign patients went back to him for follow-ups. I am just wondering if he might have meant the kuwaiti patients only.

Yes, the anticoagulant regimen was quite strong: Clexane for 1 month, Plavix for two weeks and baby aspirin for one year

What I heard that IJVs were dilated by 20-22 mm balloons and the azygos with 12mm for one patient
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Postby Cece » Sat Mar 26, 2011 3:22 pm

Liberation wrote:I tried to put the images of my veins on the page, but somehow only the addresses of them got there :(

I use photobucket, it has a list of choices by the image, one of them is the img code. Clicking it automatically copies it. Not sure if sendspace is the same.

Thanks for the update on Dr. Sinan's methods. When Dr. Sclafani mentioned the possibility of a genetic difference among Kuwaiti patients, that is not implausible, particularly since Kuwaiti has a historically low rate of MS that has gone dramatically up in the last 10-20 years, as compared to other populations that have a historically high rate of MS.

Of note: we have yet another conference starting! The SIR meeting, in Chicago, technically underway already but the excitement starts tomorrow with Dr. Sclafani's CCSVI workshop and then Monday with a full panel of presenters. I don't think our researchers have any more surprises left, do you? They gave us everything and then some at ISNVD.
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Re: posting images

Postby NHE » Sat Mar 26, 2011 10:54 pm

Liberation wrote:I tried to put the images of my veins on the page, but somehow only the addresses of them got there :(


Please see the Forums FAQ thread for a discussion about posting images.

http://www.thisisms.com/ftopicp-40760.html#40760

Essentially, the URL must point directly to the image file in order for the [img] tags to work. File types that work with the forum software include .jpg, .gif and .png. After checking the FAQ, let me know if you have any questions.


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Postby Liberation » Sun Mar 27, 2011 2:26 am

One more time :)

Dear dr Sclafani,
I am wondering what is your opinion about my IJVs and azygos, I went through the procedure in December and they found problem only with my right IJV. They did the dilation with a very small ballon, 6x20. The procedure took only circa 30 minutes. As I have ppms with motoric function problems, Iam wondering if there is more there.

I know you are those very few doctors who care about examining lumbar veins. You mentioned that you met or talked to dr Salvi recently. If I remember correctly he as a neurologist was pretty much interested in finding an association between ccsvi and ppms. Do they have more on this?

You mentioned tha last time that dr Zamboni reports that PPMS is associated with hypoplasia or atresia of the lumjbar veins. however at the current time it is not possible to treat these. Dr zamboni also noted that azygous veins were commonly narrowed in patients with ppms. Do you have more on this? The implication of lumbar veins are always likely with ppms or azygos itself can cause this problem too?
thx

Image

Image

Image
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Postby Liberation » Sun Mar 27, 2011 2:45 am

Cece wrote:
Liberation wrote:I tried to put the images of my veins on the page, but somehow only the addresses of them got there :(

I use photobucket, it has a list of choices by the image, one of them is the img code. Clicking it automatically copies it. Not sure if sendspace is the same.

.


Thanks, Cece. With photobucket it just worked out well. :)

Thanks, NHE.
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