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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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Rieja
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PostPosted: Tue Sep 21, 2010 12:13 pm 
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happy_canuck wrote:
Reija,


I'm curious why Dr. Mandata recommended aspirin 325 mg for 3 months? He said he doesn't recommend aspirin for routine angioplasty. I was ballooned 9 times -- I didn't think that was routine! Neither does my doctor here at home, so she told me to take 80 mg of aspirin a day.

May I ask if there was something remarkable about your angioplasty that Dr. M recommended aspirin? You can PM me, if you prefer. Thanks!

Sandra


Hi there Sandra,
No idea why that was prescribed. If there was anything remarkable, I was not told. I will email the good Doc to find out more. I will probably do that come thur (my 2 week anniversary) – provided I can remember : P
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Rieja
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PostPosted: Tue Sep 21, 2010 12:16 pm 
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@Boo - Im so glad to hear that you are doing well! Also, I am glad that you are staying active on these boards. It would be easy, and really why wouldn't someone leave, once they are feeling better. To stick it out is very nice and helps those of us that are still struggling to get an idea of the possibilities.
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Rieja
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PostPosted: Tue Sep 21, 2010 12:17 pm 
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sbr487 wrote:
So, is there a study to show that normal people don't end up with temporary lesions?

I might look a bit far fetched but I am really interested to know


Sorry.. I have not heard of any study yet but I would assume one like that would come out once ccsvi becomes more "popular".
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happy_canuck
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PostPosted: Tue Sep 21, 2010 7:18 pm 
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Rieja wrote:
Hi there Sandra,
No idea why that was prescribed. If there was anything remarkable, I was not told. I will email the good Doc to find out more. I will probably do that come thur (my 2 week anniversary) – provided I can remember : P


I just checked with my pharmacist and she said there is absolutely no difference between 81 mg and 325 mg in terms of degree of blood thinning. She said this is well established in the literature dealing with heart patients. It could be a personal preference of the doctor.

The bigger question is why you were prescribed aspirin at all by the same doctor when I was not!

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Rieja
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PostPosted: Wed Sep 22, 2010 9:48 am 
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hmmm... no idea! I will be sure to mention it when I email him :)
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Rieja
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PostPosted: Thu Sep 23, 2010 9:56 am 
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Week 2 update:

No symptom relief. Still feel the same.
Because I am sensitive to temperature, I will include that as well. Weather is averaging about the same for the past 3-4 weeks (mid 80's).
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Rieja
 Post subject: A reply from Dr Mandato
PostPosted: Thu Sep 23, 2010 12:44 pm 
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This is an email I received in reply from a few questions to Dr. Mandato

Quote:
We have seen numerous people only begin to show benefits weeks to months post angioplasty so you must definitely allow yourself more time. It is very difficult for us to predict who will show significant change. With the 200+ patients treated so far there hasn't been one particular sign to suggest who will change dramatically or not. We have to wait and see.

After having time to calculate your stenoses, your right IJ was approx 40%, your left was actually greater,60%. Your right IJ was more dominant which is a normal finding both in MS patients and without. This is probable why I used the term "little". It is a smaller caliber in general when compared with the right side. Again, this is not unusual.

As mentioned, these degree of stenoses do not necessarily correlate with certain clinical changes so we still have to wait and see. The azygous was normal.

We do recommend 325mg aspirin as a mild platelet antagonist (thinner). 81mg is a baby ASA dosage. You don't need a prescription, it's over the counter. I hope that helps.
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Rieja
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PostPosted: Fri Oct 01, 2010 6:23 am 
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Update

Week 3 of 12

Felt some odd tingling this week. Nothing major... just a VERY slight tingle sensation in my right leg. Seems to be warm but that is about it.

Otherwise no change.
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Rieja
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PostPosted: Thu Oct 07, 2010 6:00 am 
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Update

Week 4 of 12
• Possible dreaming more?

Otherwise no change.
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Lyon
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PostPosted: Thu Oct 07, 2010 6:03 am 
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Thanks Rieja, please keep up the occasional updates.
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1eye
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PostPosted: Thu Oct 07, 2010 11:21 am 
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Rieja wrote:
I had one new lesion on a MRI (active lesion at that) two weeks ago, but my EDSS was zero. :)


I know somebody who is PPMS, who claims to be able to tell if you have had the procedure by looking at your face. There are signs. Give it at least 3 months. You may be surprised.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Rieja
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PostPosted: Thu Oct 07, 2010 5:11 pm 
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Updates should be weekly - good or ill :)
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Rieja
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PostPosted: Thu Oct 14, 2010 6:45 am 
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Update

Week 5 of 12
• The dreaming thing is still going on. I don't remember in recent times having this many. No idea what to make of that.
Otherwise - no change.

Keep in mind, no change is not neccessarily bad either. Just means.. no change :P

Also this week, I was given an online survey from Albany to fill out. It is a followup survey that asks the same questions I filled out before I had the procedure. They are comparing results. I hope to get another one at my 3 month anniversary - though I do not know if they are doing that... I'll try to look into it more.
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Rieja
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PostPosted: Thu Oct 21, 2010 7:39 am 
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Update

Week 6 of 12
• The dreaming thing is still going on - rather vivid too.
• My wife has stated that my foot spasms have stopped during the night. Some of them I was aware of and others I slept through it. I would actually wake her up though. Not sure how reliable that is at the moment. The spasms were on and off again at week/month intervals. So with that, just like everything else with damn disease, I will have to wait and see.

Otherwise - no change.
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Rieja
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PostPosted: Thu Oct 28, 2010 9:54 am 
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Update

Week 7 of 12
No Change

Current Negative Results:
none

Current Positive Results:
• Dream
• Foot Spasms at night controlable/gone
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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