CCSVI and Current Medications- food for thought

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

Re: De-stenosis and drug therapy

Postby MegansMom » Mon Sep 20, 2010 3:19 am

MarkW wrote:Hello MegansMum and all,
My take on this is that there are too many variables to make any logical suggestions with regards to existing or new drug therapies. The immune system is so complex that most drug therapies impact only a small part of it. I stick with Prof Z recommendation - take existing drug therapy along side de-stenosis.
Kind regards,
MarkW


I just wanted you to know that since my daughter was just diagnosed she isn't on any drug therapy.

So her decision is to logically decide whether to start one or go "commando"so to speak.

Since folks without re-stenosis have yet to have an "event", she is going without any Rx except the ASA prescribed by the IR. She is prepared to have re-angioplasties if needed, The IR concurs.

Her neurologist is basically "anti-Zamboni" so thats our dilema now.

Tomorrow is her angioplasty !
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby esta » Mon Sep 20, 2010 8:01 am

megansmom
wish her all the best, please. i like her decision and thrilled she'd getfurther treatment if she restenoses . i say that because thats where we are in the field at this point and she then knows she's done the best she could...
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Postby shye » Mon Sep 20, 2010 3:03 pm

Interesting thread MegansMom-
My immune system is a mess--severely allergic to various pollens, grasses, foods, medicines--
Have tried altering diet (drastically)--certainly helps, but does not cure.
Take numerous supplements, again, helps not cures.
But whether I have CCSVI or not (have not explored that yet, since not yet willing to undergo the procedure) is not the issue--I do have a compromised immune system.
So, did lots of research, and took the plunge finally with meds--started Low Dose Naltrexone (LDN) 4 nights ago--it seems to be the ONLY one of the numerous meds that does NOT compromise the immune system, rather works to let it enhance itself. The studies on its benefit to Crohn's disease sufferers is very impressive.
I will post in about a month under the LDN thread of any benefits that I start seeing.
But after all the research, can't even imagine why anyone, with or without CCSVI, would take the drugs that compromise the immune system. As Mark W says
The immune system is so complex that most drug therapies impact only a small part of it.
Indeed! and my way of seeing this is that it is TOO complex to fool around with only one part of it--there is not enough knowledge about it to know for certain that you are not playing with havoc taking the immune-supressing drugs.
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Postby Cece » Mon Sep 20, 2010 3:32 pm

Her angioplasty is tomorrow! All the best to her!
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Postby PCakes » Mon Sep 20, 2010 3:46 pm

Cece wrote:Her angioplasty is tomorrow! All the best to her!


second verse, same as the first... good luck!! :D
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Re: De-stenosis and drug therapy

Postby PCakes » Tue Sep 21, 2010 10:20 pm

MegansMom wrote:Tomorrow is her angioplasty !


How'd it go?? :)
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Postby MegansMom » Sun Oct 03, 2010 8:49 am

Sorry I didn't see this last post.

She did well. Says she feels lie she was never sick.

She had a partially tenotic L IJV and a partially bloacked Azugos with a twist. She had definitely observable reflux. She had angioplasty of both.

She has follow-up with the IR in a month, and she is on 81mg Aspirin.

They gave her quite a lot of IV medication including some IV Fentanyl, Versed & Dilaudid. He said that her Azygos was tricky and gave him a hard time.

She had some nausea and vomiting afterward but she thinks that was from the Dilaudid because she had this happen before with strong pain killers.

The day after her procedure I took her to get a facial and a new hair cut and color....


She took a week off from work to heal and relax.

She returned to work a week after her procedure and continues to do well.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby esta » Sun Oct 03, 2010 9:00 am

MEGANSMOM - FABULOUS :D :D :D
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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esta
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