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Re: DrSclafani answers some questions
Posted: Thu Nov 15, 2012 8:00 am
by Cece
vesta wrote:Perhaps with the use of IVUS etc these complications are no longer a problem.
Of interest: "Complication rate of 16% using visual estimation was reduced to 1.3% using IVUS CSA measurements. "
http://www.ccsvicare.org/outreach_update03.html
From an abstract by Dr. Sclafani from last year's SIR.
Really good results with IVUS. As a patient, I'd rather have a 1% risk of complications than a 16% risk.
Re: DrSclafani answers some questions
Posted: Thu Nov 15, 2012 10:09 am
by vesta
It's reassuring to know that the use of IVUS has reduced risk to almost zero. Sounds like it is just as well that Kleiner didn't undergo angioplasty 2 years ago. K can now go forward with confidence.
Re: DrSclafani answers some questions
Posted: Thu Nov 15, 2012 11:37 am
by Kleiner
CureOrBust wrote:Kleiner wrote:... Most recently I finally met with a doctor (vascular surgeon) here in Ontario that was willing to talk to me and actually give me some advice ...
Kleiner wrote:... and lack of local support...
What happened with the local Vascular Surgeon you spoke to previously?
He wasn't awarded the clinical trial he applied for so is pretty much in a holding pattern for now.
Re: DrSclafani answers some questions
Posted: Thu Nov 15, 2012 4:52 pm
by drsclafani
Kleiner wrote:drsclafani wrote:Kleiner wrote:Still here...reading several times a week...still trying to decide when to take the plunge...
what needs to be answered to make a decision?
I've been thinking of how to answer this question. I think I know deep down that I will eventually get the procedure done. It just seems that little things keep stalling my progress. Most recently I finally met with a doctor (vascular surgeon) here in Ontario that was willing to talk to me and actually give me some advice (I've been to many who knew nothing of CCSVI and refused to learn or just wouldn't speak about it with me at any length). This doctor applied to be part of the clinical trials getting underway here and I was on the list to take part. Unfortunately, his group was not awarded the trial. In fact, no one in Ontario will be part of the trial. So, back to the drawing board for me.
From everything I have read I think the CCSVI procedure will help with my symptoms. My main symptoms are constant dizziness/light-headedness, lack of energy, daytime tiredness (sleep apnea), headaches, cog-fog and some slight balance issues. This is on a very basic level, unlike some of the members on here science is most definitely not my forte (I'm an accountant!) and I quite often get lost in the scientific detail of some of these posts.
I have had CCSVI testing at the Port Perry clinic which showed 4/5 of the criteria for CCSVI (Dr. you were kind enough to translate my report in this thread a couple of years ago).
I think the lack of support around here (from my family doctor and other doctors I have reached out to) is really making me hesitant to proceed even though I know it is probably in my best interest. Although I feel the effects of this everyday and generally feel unwell if this was more physically disabling I think I would have already had this done. And because I can still get through the day, albeit a struggle some days, I haven't had that push to make the next move. On the flip side...what kind of damage is taking place while I wait??
Sorry for the rambling...I guess the short answer to the question is a little bit of confusion on the right time to proceed and lack of local support.
Thanks for your time and dedication.
its a great answer, actually.
Nothing we do is without danger. one of the most important things doctors giving advice must do is balance risk against benefits. it is only then that informed decisions can be made.
while the neurologists speak about the dangers, the safety trial, accounting for more than 2,000 patients show high safety with no deaths and few major complications. benefits are also explained as placebo.
lack of knowledge by those from whom you seek guidance is a real challenge.
Re: DrSclafani answers some questions
Posted: Thu Nov 15, 2012 11:22 pm
by CureOrBust
CureOrBust wrote:Kleiner wrote:... and lack of local support...
What happened with the local Vascular Surgeon you spoke to previously?
Kleiner wrote:He wasn't awarded the clinical trial he applied for so is pretty much in a holding pattern for now.
I was not suggesting him for treatment, but for the lack of after treatment local support you stated as a reason for holding back?
Re: DrSclafani answers some questions
Posted: Fri Nov 16, 2012 8:26 am
by drsclafani
CureOrBust wrote:CureOrBust wrote:Kleiner wrote:... and lack of local support...
What happened with the local Vascular Surgeon you spoke to previously?
Kleiner wrote:He wasn't awarded the clinical trial he applied for so is pretty much in a holding pattern for now.
I was not suggesting him for treatment, but for the lack of after treatment local support you stated as a reason for holding back?
IMHO, relying upon local support after treatment indicates that some treating physicians are not maintaining contact with patients. I am in daily contact with patients who desire it. The internet is a wonderful engine for continuing care.
I am certainly not dismissing the value of local physician partners in care. Drs Robitaisse and McDonald have been great partners. Same with Dr Liasis in Greece and Dr Salvi in Italy! But some local physicians who are not particularly knowledgable and do not seek expert guidance, just winging it.
DrS
Re: DrSclafani answers some questions
Posted: Fri Nov 16, 2012 9:52 am
by Robnl
Hi doc,
Did you receive my mail?
Renards
Robert
Re: DrSclafani answers some questions
Posted: Fri Nov 16, 2012 2:40 pm
by 1eye
while the neurologists speak about the dangers, the safety trial, accounting for more than 2,000 patients show high safety with no deaths and few major complications. benefits are also explained as placebo.
Which trial was this? The Saskatchewan/Siskin one?
Re: DrSclafani answers some questions
Posted: Sun Nov 18, 2012 3:23 am
by aliki
Dear Doctor,
I had the procedure by you at the 28 September with my friend Valentina . As you remebrer I had my last relapse at 26 of September and it was really bad.
After the procedure I noticed some difference on the relapse symptoms and 2 weeks after the diplopia left .
My problem is that 20 days ago I started to get worst at ccsvi symptoms . Fatigue , cog fog , headache , instability , deaziness and the fact that I cannot see well the colors , depression are situations that I didn't have before in that grade and now I don't feel well .
I think that something doesn't go well . Something is changed . I did the ultrasound and it didn,t show that I have something .
Now I am desperate . Specially in the mornings I feel worst than ever , moreover I cannot stand in a place with many people , I cannot tolerate the noise and this is one of the worst thing because I am a teacher .
My MRI that I did at 6 of November is full of lesions . One is 11 and the other is 8 mm and there are some others .
I know that I have the clot in my left jugular vein but this I had it from last year and my ccsvi sympoms were not so bad
Well I am thinking all the time what is going wrong with me and I feel so bad . Will I get better or this will be my life from now on?
I wait every day a sign that something will change and I will feel better but there is no sign . Only the same situation and now that the cold weather comes I get worst on my symptoms .
Re: DrSclafani answers some questions
Posted: Mon Nov 19, 2012 6:57 am
by Lety
aliki wrote:Dear Doctor,
I had the procedure by you at the 28 September with my friend Valentina . As you remebrer I had my last relapse at 26 of September and it was really bad.
After the procedure I noticed some difference on the relapse symptoms and 2 weeks after the diplopia left .
My problem is that 20 days ago I started to get worst at ccsvi symptoms . Fatigue , cog fog , headache , instability , deaziness and the fact that I cannot see well the colors , depression are situations that I didn't have before in that grade and now I don't feel well .
I think that something doesn't go well . Something is changed . I did the ultrasound and it didn,t show that I have something .
Now I am desperate . Specially in the mornings I feel worst than ever , moreover I cannot stand in a place with many people , I cannot tolerate the noise and this is one of the worst thing because I am a teacher .
My MRI that I did at 6 of November is full of lesions . One is 11 and the other is 8 mm and there are some others .
I know that I have the clot in my left jugular vein but this I had it from last year and my ccsvi sympoms were not so bad
Well I am thinking all the time what is going wrong with me and I feel so bad . Will I get better or this will be my life from now on?
I wait every day a sign that something will change and I will feel better but there is no sign . Only the same situation and now that the cold weather comes I get worst on my symptoms .
I'm sorry to hear that, hope dr. Sclafani find a solution for your problem
Re: DrSclafani answers some questions
Posted: Mon Nov 19, 2012 11:19 am
by Cece
aliki, I hope everything turns for the better and soon.
Re: DrSclafani answers some questions
Posted: Mon Nov 19, 2012 11:20 am
by Cece
drsclafani wrote:in all the cases that i treat, i repeat the ivus after angioplasty. I look for residual defects, immobile valve fragments, thrombus, but i have never measured the cross sectional area of the vein before and after angioplasty. It seems so obvious that i should have, but i didnt. Something else to look at
Here's a link where a doctor, Dr. Scalise of Monza, Italy, published ivus images of a jugular before and after ccsvi venoplasty
http://www.ccvi-online.com/emea/sites/w ... df#page=18
The pre-angioplasty measurements are 113 mm2 cross-sectional area of the vein but narrowed down to 45 mm2 at the valvular stenosis. After angioplasty, the vein measurement is 107 mm2 and at the site of stenosis it is 81 mm2. Is this a typical amount of residual valve material? Do you often see veins open all the way up 100%? I had thought the vein itself might stretch, so that the initial 113mm2 measurement might go up, but it did not.
The doctor chose a balloon based on 20% oversizing.
checking Dr. Sclafani's chart and doing math
chart =
http://www.thisisms.com/forum/chronic-c ... ml#p172379
math = 113 CSA could get a 12 balloon which is 144 CSA which is oversized by 27% which is close to what Dr. Scalise has described
I think
but if you went up to a 14 balloon at 154mm2 that would be a 36% oversizing which would be ok
or up to a 16 balloon at 201mm2 would be a 78% oversizing (using percentage calculator
http://www.percentagecalculator.net/ )
But when he says he chose a Maxi LD dilatation catheter 18 X 40 mm, I think that means an 18 balloon at 254mm2, which would be a 124% oversizing!
My attempt to resolve this is to think that he chose a balloon based on the long pink line which is the diameter of 15 mm and not based on the CSA. The vein is an oval not a circle and the other diameter is measured at 10 mm.
[other technique notes: He inflated four times at 6 atm at a maximum of 3 minutes. The pressure of 6 atm is a low pressure which is good if the balloon is overly oversized (high pressure + oversized balloon = potential vein injury collapse scarring). Three minutes is a long time to have the balloon inflated as it can cut off oxygen flow to the vein itself.]
Did I miss anything? Am I correct to think that an 18 mm balloon for a vein with a 113 mm2 CSA is not a 20% oversizing but a much higher percentage of oversizing?
A month later, the patient's EDSS had gone from 4.5 to 3.5.
Re: DrSclafani answers some questions
Posted: Tue Nov 20, 2012 1:43 pm
by vesta
Aliki, I believe I am worse in the morning because the blood stagnates and backs up during the night. I suspect this holds true for you as well, that the valves which prevented the venous blood from backing up have failed. You might try sleeping at an incline to reduce the reflux. Also, since a neck massage seems unadvisable in your case because of the blood clot, I believe you should try to get a treatment such as acupuncture to boost your blood circulation, (See the Acupuncture topic on my site.) You could eventually treat yourself daily with TENS self acupressure as I do. I hope you are getting the help you need and are feeling better. MS Cure Enigmas.net
Re: DrSclafani answers some questions
Posted: Wed Nov 21, 2012 9:05 am
by aliki
thank you very much for your answers . I restarted taking coumadin and I feel better . I will try to find a good acupuncture place to have some treatments . My left jugular vein that is clotted creates lots of problems ..
Re: DrSclafani answers some questions
Posted: Wed Nov 21, 2012 9:19 am
by Lety
aliki wrote:thank you very much for your answers . I restarted taking coumadin and I feel better . I will try to find a good acupuncture place to have some treatments . My left jugular vein that is clotted creates lots of problems ..
Nice to hear that you feel better, why Dr. Sclafani did not treated your left jugular vein ? Will he do this ?