Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 In a message dated 3/11/00 12:55:23 AM Central Standard Time, kfields@... writes: << I have read posts of Chiarians having cold intolerence, but any one with heat intolerence? Also, any one who has had surgery and experienced either heat or cold intolerence, did these symptoms improve? >> Hi , My grandson , was very very heat intolerant. Our thermostat stayed at 68/69 degrees all summer which made for an unbelievable electricity bill. Even in that temp and with only his diaper and a t-shirt with the sleeves removed he would still break a sweat and drench everything at the least bit of exertion. He would have difficulty breathing if it got any higher also. Once when we got into the van during the summer to go to a friends he broke a sweat and when I felt him he was burning up. Upon taking his temperature, it was 103.6 and for no other reason but the van was hot for as soon as the van airconditioning cooled things he was ok and he never had any symptoms of getting sick. Since his surgery, we have been able to turn the thermostat up to 70/72 degrees and has not broke a sweat, had night sweats, nor had any complications with his breathing...It has definately made a big change on his heat intolerance. The surgery is one of the best things I have ever had done for him.. Love, Hugs and Prayers, Haydee (Nana to , 8 years old w/Spina Bifida, ACM II, Hydrocephalus w/VP Shunt, Syringomyelia w/Syrinx @ c1-c2, G-Tube Fed (totally NPO), Swallowing Coordination Disorder, Neurogenic Bladder, ARDS (Lung failure) 3/30/97, 33 days on ECMO (total Lung bypass), 60 days on Life Support, Humidified Oxygen Dependent, Radical Trachestomy w/total Loss of Vocal Cord Use, Paralyzed from the Waist Down, 18 surgeries, Asthma, Severe Latex Allergy, Allergies to many Medications, Adhesives, and tons of other stuff, With Such a Wonderful Love of Life and one crazzzzy Nana living right outside BatonRouge, Louisiana, Posterior Fossa Decompression, Opening of the Dura, (No Graft), and c1-c2 Laminectmy, March 2, 1999...so far so good and getting better and stronger everyday!!!) 's Web Page~~~~~~> <A HREF= " http://www.pressenter.com/~chip/joshua.htm " >The Story</A > http://www.pressenter.com/~chip/joshua.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 YES, I thought it was hormones are some medication side effect. I have long thick hair and after I blowdry it I sweat forever and have to find cold air before I can put on makeup. Before I get out of the shower I've started to rinse my head and body with cold water. That gives me a little head start on the sweating ;~) It's a real pain. I used to be the opposite, always cold. The other thing that I've had is night sweats. And it's not hormones or menopause. I had a hysterectomy 10 years ago and been on hormones ever since. This sweating is in the chest area and the back of the neck - that's it! Wierd. Ramona (VA) FMS, CFS, MFS, spinal stenosis, herniated disks, fusion L5/S1, cervical & lumbar scoliosis, degenerative joint disease, diminished quality of life! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 , Hi! I was wondering the same thing. If I am too hot, I can barely function. Sometimes I feel like I am suffocating. I also have the intolerance to cold, but I can always add on clothes and blankets. When its hot, there's only so much I can do. I don't know if it's Chiari related or not. Also I'm not scheduled for surgery until Spring, so I don't know what the results will be. I'm just hoping for the best. krexroth@... York, PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 - I have had the problem with heat intolerance and everything else you describe for years and years. I had a decompression done in Dec. 98 with Dr. Milhorat. Unfortunately, the heat problem is still around. Dr. Rosner says I need 6 vertebrae opened up and that may possibly help with more things. Beverly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 : YES YES and YES!!!! I thought maybe I was going though change of life early LOL (I'm only 28) My husband keeps the heat at like 75....TOOO HOT!! Just walking around picking up the kids toys, when I'm done, I'm sweating so bad it's terrible. At night when I'm sleeping, i think what causes my night chills is that I sweat so badly in my sleep, I'm soaked so I get chilled. That might be the case with alot of us Chiarians. Vicki 4 wks post op Chiari 2 Ready to SCREAM!! tattoodlady@... Heat intolerence > Have any of you Chiarians had problems with heat intolerence? Any > activity I engage in, like fixing my hair/putting on makeup, washing > the dishes, etc., causes me to become extremely hot and uncomfortable. > I sweat profusely (mostly on the right side) amd get prickles all over. > > I have read posts of Chiarians having cold intolerence, but any one > with heat intolerence? Also, any one who has had surgery and > experienced either heat or cold intolerence, did these symptoms improve? > > I am scheduled for Chiari/Stenosis Decompression surgery by Dr. Rosner > in April. > > Thanks, > > > ------------------------------------------------------------------------ > WACMA Site: http://www.pressenter.com/~wacma > Your Personal support group member page: http://www.eGroups.com/group/chiari/ > **Avoid List Congestion: > Unsubscribe from this list: mailto:chiari-unsubscribeegroups > Contact list mgmt: mailto:chiari-owneregroups > > ------------------------------------------------------------------------ > -- Easily schedule meetings and events using the group calendar! > -- /cal?listname=chiari & m=1 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Just a response to the heat intolerance. I also have that problem. I have been intolerant to heat since I had a heat stroke in '89. I had a decompression in '94. That did not take care of the heat intolerance. And just the last month or so, it has been even worse. And kind of little exertion causes me to sweat. I have started wearing antiperspirant under my breasts, to keep me from soaking my bra. Heh, don't knock it, it works! Have a good weekend! Take care & God Bless, Donna M. andria, VA Hypoglycemic, Pseudotumor 12/93, 4 LP shunts & revisions 3/94, 7/94 x 2, 8/94, removed 12/94 ACM I decompression 8/29/94 (all surgeries done by Dr Heffez) More problems, going thru all the rigamarow again :-) Dr Heffez said no surgical problems, may still be Chiari related Back to square one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 I too have had problems with being constantly hot. It started long before surgery, and after surgery I think it's worse. Yesterday I was cleaning my house (which I will pay for today) and opened almost every window in my house! I new it was time to slow down when I found my 3yr old wrapped up tight in a blanket. Love to all, G. acm1 12/99 decompression 1/00 csf leak & staph inf. repair many symptoms returned + more! Quote Link to comment Share on other sites More sharing options...
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