CCSVI and body temperature... Long, but it might be worth it

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

CCSVI and body temperature... Long, but it might be worth it

Postby Brynn » Thu Oct 06, 2011 8:33 pm

Hello everyone, it has been quite a while since I posted. I have had an extremely affecting breakthrough in the last month that I wanted to pass on to all of you, in case it might help someone else, too. In January of 2010, I went to Poland for a right side IJV stent and received tremendous improvement for 6 weeks. I received my left side IJV stent from Dr. Simka in May, 2010, with little additional improvement. This is not to say that a lot of important things remained, such as no neck pain, no fatigue, better color and temperature in my feet....but what came shortly after, that I have been struggling with for 14 months is FEVERS. The first assumption and partial culprit was bladder infections. I have lost mobility and been chair bound for about two years now, so it became a problem that I fought until May of this year.

Fast forward to last March, when I read about Magoo's beneficial added CCSVI treatment with DR. McGuckin. She had needed added stent maintenance and since I live close to Seattle, off I went. Dr. M treated me in May, found 5 added locations that were stenosed, but more importantly, he found that BOTH of my Poland stents were clogged shut! He was able to open one that day along with ballooning the other 5 new findings. The original stent was closed beyond what he could safely do that day. In July, I went back to Seattle, because he had brought a special piece of equipment to deal with the thrombosis. The procedure went off without a hitch. Now, here is what I have found lately..... I went onto a maintenance Rx in May because I was having infections all of this last year and I was so affected by the rise in my body temperature from the fevers, that while I was still having fevers for the last four months without any bladder infections, I knew there was an additional culprit. Life was a routine of 9-12 Tylenol a day and thankfully, I have a strong gut.

Over the summer, my husband would help me into the 70 degree waters at lake. Also, over the last year, I had pretty much lost my ability to speak. On good days I would sound drunk and on bad days there was no volume. But after those 15 minute lake sessions, I could speak normally, my balance returned and I could use my walker a little! Now we knew we were on to something. My local MS doctor suggested that I probably have some damage to my hypothalmus...but how to control it? After hours spent researching cooling, I found a vest and/or shirt called Cool Shirt. Made for race car drivers, cold water streams continuously from a cooler through tubing sewn into the vest. I have owned it for three weeks now and have felt fabulous! I wear it all day except for when I go to the pool to work on my walking :-D and have done more talking in the last three weeks than in the last year! Not sure what my husband thinks about that! :-D Yes, it is cold, but I turn it off often, but Iam getting used to it and love feeling so "normal." CONCLUSION: My pipes are clear, the fevers are gone and I now believe that my body will finally be able to do the healing I always thought it could! I have seen improvements each week and hope for a lot more. Who knows, maybe by being cooled, my hypothalamus will RESET itself! I will update over time and am feeling so good. Take care and keep fighting. Brynn
41 years old, dx 1998, current EDSS 6.5
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Re: CCSVI and body temperature... Long, but it might be wort

Postby munchkin » Fri Oct 07, 2011 6:03 am

It's wonderful that you have found some relief. Keep healing and let us know how things are progressing.
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Re: CCSVI and body temperature... Long, but it might be wort

Postby 1eye » Fri Oct 07, 2011 10:32 am

I wore a vest with inserts made of bags of wax. This stuff is paraffin and is supposed to have "phase change" properties that keep the temperature constant while it melts. The stuff is very flammable, should it ever leak. Your shirt sounds better. I think core temperature is very important. Mine is capable of completely disabling me. Apparently pw"MS" have a terrible
time getting rid of heat. I know I do. When tricycling I wear a soaking wet do-rag under my helmet, and a gel-crystal filled neckerchief that hold water when it is soaked.

Good luck with recovering!
"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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Re: CCSVI and body temperature... Long, but it might be wort

Postby dania » Sat Oct 08, 2011 1:58 pm

Brynn you are not the only one that has noticed a correlation between cooling the body and improvements. I suck on ice chips. Pressing them up to the roof of my mouth. It helps temporarily. And I never eat anything hot anymore.What ever I eat is never more than just above room temperature. My shower use to be hot but now not so much.
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Re: CCSVI and body temperature... Long, but it might be wort

Postby Brynn » Mon Oct 10, 2011 12:03 pm

Yeah, Dania, it's the same way with me with hot foods. I notice a change immediately and will try your ice chewing idea, too. After an added week with the vest, I am seeing that the temperature spike stays away for about 1 1/2 hours. The vest is making a night and day difference though! Bye, Brynn
41 years old, dx 1998, current EDSS 6.5
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Re: CCSVI and body temperature... Long, but it might be wort

Postby Nasti » Wed Oct 12, 2011 12:47 pm

There was also a man from Italy who reacted to cooling, he could walk a straight line after swimming in the ocean. I, unfortunately, have symptom worsening when the weather turns cold, which I usually attribute to narrowing of the veins in cold, but who knows, I'd guess there's definitely more to it.
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Re: CCSVI and body temperature... Long, but it might be wort

Postby Thekla » Wed Oct 12, 2011 2:27 pm

I get hot while asleep. I just bought a thick fluffy comforter, love it but I'm trying a thin one tonight. My legs not move well at best but by morning, I can hardly move at all. I struggle to get up and out of bed. I also have more bladder urgency when I'm so cosy warm. I can't say that I do better when cold, I get so stiff, but too wonderfully warm doesn't seem to be good at all. We'll see how it goes. I am usually very cold when I'm tired at night and it seems to take forever to get warm enough to sleep.
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