Heat intolerance and angioplasty

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

Heat intolerance and angioplasty

Postby smokey » Tue Jun 01, 2010 10:02 pm

Could anyone who had heat intolerace as a symptom and has had an angioplasty please comment about whether the symptom improved. If there was an improvement, was this an immediate effect or did it take a few days or weeks? Thanks look forward to hearing from you.
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Postby EnjoyingTheRide » Wed Jun 02, 2010 4:04 am

I seem to be in the minority. I had significant stenosis in both IJV's and Azygos which was ballooned, and I've seen no improvement in my heat intolerance since the March 17 procedure. I am PPMS.
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Postby markus77 » Wed Jun 02, 2010 5:42 am

i have been spms for 21 years. i had the procedure in poland 1 month ago. at first i did not notice a change in heat tolerance mind you it has been cool up until a few weeks ago. at that point it has got very hot humid in Ottawa and a noticable change has been noticed. 50% at least.
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Postby AMcG » Wed Jun 02, 2010 6:56 am

I believe my heat intolerance went away about 1.5 hrs after the procedure. when I quickly became aware of how warm a day it was. I couldn't check it out for sure until I was discharged the next day when I sat in the sun outside the hotel for a few hours. It felt great. I now love the sunshine. That was six weeks ago now.
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Postby tzootsi » Wed Jun 02, 2010 7:22 am

My wife has had heat intolerance in the past, however, it has gradually subsided in the past few years. I THINK what helped most was LDN and diet. She had the CCSVI procedure done about 7 weeks ago, which seems to have helped it even more.
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Postby blossom » Wed Jun 02, 2010 5:18 pm

hi enjoying the ride, i have ppms for 20 yrs. i have a lot of the classic symptoms. i was wondering if you had other symptoms and how long. also if you had any improvements? i know ppms doesn't seem to get as good results as other types. have you read about ctos? i can't help but feel that people could have ccsvi or ctos or maybe both. it would be great if the ccsvi dr.'s would be aware of ctos and test for it also. i have not been treated yet but i hope that you continue to improve. ppms has always been kinda a black sheep you might say because we are the lower percentage. let's hope this helps get it all figured out and fixed soon.
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Thanks

Postby smokey » Wed Jun 02, 2010 6:13 pm

Thanks everyone. Looks like I need to be more patient, it might be that I'm expecting too much too soon. It's only a week after procedure. Also, I'll investigate a change of diet.
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Postby garyak » Wed Jun 02, 2010 6:19 pm

I have ppms, what is ctos?
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Postby Algis » Wed Jun 02, 2010 8:30 pm

Cerebellar Thoracic Outlet Syndrome
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Postby blossom » Wed Jun 02, 2010 8:38 pm

garyak, ctos is a problem with the arteries that a dr. noda had been treating with surgery people with ms had results very similiar to ccsvi results. there again when he tried to present it to the medical world it was met with such resistance that it got no where. if not for the internet dr. zambonni i feel would not even gotten as far as he has. but, i am certainly grateful to dr. zambonni for what he has done for us. dr. noda did not have that support 20 yrs. ago. anyway best you read about it. google ctos dr. noda or ctos multiple sclerosis. someone had put the info. on this site a while back but i can't remember who. there is a topic on this site called- parkinsons and ms cured by surgery (but not ccsvi)-that discuses it some. author is nunzio-last post june 2. i think after you read about it you will get what i mean. there has to be a reason ppms does not respond to ccsvi treatment as well and this could be the reason. i'm hoping the great dr.'s that are doing ccsvi would take a good look at this also and start testing for both. nothing ventured nothing gained!
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Postby FlashHack » Wed Jun 02, 2010 10:32 pm

blossom wrote:if not for the internet dr. zambonni i feel would not even gotten as far as he has
Is "the internet" Cheerleader's new nickname? :wink:
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Postby Vhoenecke » Wed Jun 02, 2010 10:38 pm

I had my procedure on April 28th, been out in some very hot days. Wouldn't have been there pre-procedure but now no issues. Can't believe that changed, I thought heat intolerance would be with me for life.


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Postby cheerleader » Wed Jun 02, 2010 10:44 pm

FlashHack wrote:
blossom wrote:if not for the internet dr. zambonni i feel would not even gotten as far as he has
Is "the internet" Cheerleader's new nickname? :wink:


cute, Flash :)
According to my son, my laptop officially became part of my lap. Really scary. but I've been taking more time off lately, since it appears the ball may be rolling without me typing as much...

One of Jeff's most profound changes was the immediate relief of his heat intolerence. Before his stenting, he was unable to spend any time outside of air conditioning, and we live in LA (hot.) He was miserable. He had a cooling vest and hat, and a fan going 24/7. This and his fatigue were his most profoundly disabling symptoms.

Last summer, after his angioplasty, he was chopping firewood outdoors in 105 deg. heat, sweating like a pig and smiling ear to ear. We knew something had changed. Since then, he no longer has any issues with over heating and the fatigue/dizziness that used to come from being overheated. He bikes, hikes, works outdoors and sweats again (he had stopped sweating, too) He forgets what that heat intolerance felt like. Dr. Dake believes Jeff's heat intolerance was due to venous congestion, not demyelination or nerve damage.
Miss Laptop
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby smokey » Wed Jun 02, 2010 10:54 pm

cheerleader wrote:
FlashHack wrote:
blossom wrote:if not for the internet dr. zambonni i feel would not even gotten as far as he has
Is "the internet" Cheerleader's new nickname? :wink:


One of Jeff's most profound changes was the immediate relief of his heat intolerence. Before his stenting, he was unable to spend any time outside of air conditioning, and we live in LA (hot.) He was miserable. He had a cooling vest and hat, and a fan going 24/7. This and his fatigue were his most profoundly disabling symptoms. Last summer, after his angioplasty, he was chopping firewood outdoors in 105 deg. heat, sweating like a pig and smiling ear to ear. We knew something had changed. Since then, he no longer has any issues with over heating and the fatigue/dizziness that used to come from being overheated. He bikes, hikes, works outdoors and sweats again (he had stopped sweating, too) He forgets what that heat intolerance felt like.
Miss Laptop



Thanks for this Miss Laptop! - did Jeff experience any difference after angioplasty in regards to improvements in heat/exercise/vision. My main issue is heat or exercise affecting my vision.
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HELLO!!!

Postby Badger » Wed Jun 02, 2010 11:38 pm

I had the procedure 24th March and as I live in Scotland I thought I would have to wait until holiday to test my heat tolerance but there have been a number of lovely days since my return.

I have found that my heat tolerance is more or less gone. I can sit in the sun for the whole day, while before I would last 30 minutes-1 hour in the sun and even then I would have been affected. My balance would be terrible and I would have to allow around time to recover in the shade.

I have had no problems now over a number of hot days in the sun and I look forward to my holiday in the sun, where I will really see!!! :wink:
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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