my entire life i was always made fun of for looking anerexic!! i hated it i always had a big appetite and always ate big portions! i have chiari and syringomyelia .i’m 5’5 before decomopression i weighed 103 lbs, a month post op i weighed 130, i gained 30 lbs within a month!! has this happened to anyone else?? Is this common?
Are you taking hormones or synthetic hormones? Methylprednisolone?
Some of these can cause major water retention. If not maybe your thyroid should be looked at. Sorry this is happening, that’s a big change in one month. How’s your noggin?
Jenn
no hormones. I lost my insurance a few months after surgery and still have so many issues!!! I feel like theres something else seriously wrong and idk what to do! i feel so hopeless i’ve started to really give up. my headaches are worse 80% of the time. i wake up some mornings with the wosrt migraines of my life with severe vomitting. my husbands had to carry me to our truck scared i was going to die all i can do is yell and throw up. the joints in my wrists have been bothering me for years a few yars back i got dx’d with a partial ligament tear in my left wrist. now my ankles are so bad some days i can hardly walk(maybe bc of the torn ligament i have dx’d i have somrthing wrong with all of my ligaments) i have severe neck pain and since surgery have numerous lumps maybe lypmph nodes or torn ligaments? my surgeon who also nearly made me go blind basically wrote me off after surgery and told me my promary care needs to deal with me. my primary care was horrible and i left her office in tears multiple times. i have so many other issues these are just the most worrisome right now! i also have such serious brain fog and all together i feel extremly dumb!!! even typing this i cannot concentrate i cant remember anything im such a mess and im only 22 married with a 4 y/o!
Dk, sounds like you are having a terrible time. The joint issues say Ehlers Danlos Syndrome to me, could also explain neck pain and headache. Some people with EDS develop cranio cervical instability after decompression. CCI symptoms mimic Chiari. Of course this is not professional advice, but I think you need to start wearing a cervical collar immediately. The collar needs to be tall enough that it prevents your neck from flexing or bending forward or backward. My headache came back tenfold after decompression and it CCI- the collar took the pain down to 2 instead of 8-10. I got my soft collar at the drugstore, then later graduated to a rigid aspen vista collar. If you do have CCI your head needs to be stablized on your neck, especially at night when you are unaware of how bent your neck gets.
Have you had a post op MRI? If not you need one- demand it. Go the ER where your NS takes call and demand it. If need be let them know you are going to check into the ER daily until you get the imaging that proves there is no abnormality. Are you taking vitamin D3 supplements? Arnica gel is OTC put that on your neck and base if skull, it makes a little difference.
Don’t give up, you are not alone. Many of us have been down this road and are finding our way.
This might be a helpful post to read…
http://www.chiarisupport.org/forum/topics/relapse-after-decompression
Hugs, jenn