
Arnold-Chiari Malformation Support Group
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.
Has anyone had weight gain after decom surgery?

deleted_user
My twin had decompression surgery May 2006 and since then experienced significant weight gain. Nothing is working. Has anyone experienced weight gain after the surgery, and if you have, what did you do to lose weight?

deleted_user
I had recently lost 30 lbs before even being diagnosed with CM. Then after the surgery I was on 3 courses of steroids and put the 30lbs back on. I have lost 6 and it is been hard to lose it again. did your sister have to take steroids?

deleted_user
Yep! She was given steriods only for a short period as an anti-inflammatory, but boy did it do a number on her metabolism. We're not sure how to detox her from the effects.

deleted_user
I was on steroids 3 different times with the last one being a high dose for 20 days. About the only thing that has gone away is the swelling in my face. everyone says it will go away and the weight will come off but they will never say when and I have no patience left.

deleted_user
Well my twin lives in Colorado and is going to visit the Aurora Chiari Treatment Center. If they have a treatment for reversing or reducing the effects of steriods I will DEFINITELY LET YOU KNOW!

deleted_user
be very patient let her know that she is the same persone regardless of the weight i have been put on steroids for 11years at hight doses because of the brain would not stop swelling and i still have not lost more then 10 pounds and am still stugling very hard and have tried about every option that i can it is a hard process and streroid weight is not like gaining like if it was from eating so she just has to eat right and do wat she can to her limits with out injuries and be patien and needs people to make her feel good about any acoplishment that she does make

deleted_user
I gained 60lbs. after surgery but I was taking Elvil and the doctor said that is what caused it. I am on Topamax now and I have lost 60lbs. in two months but I dont have a desire to eat. Which I believe is causing me to have cluster headaches.

deleted_user
I had surgry jan 6th 2006 and have put on 30lbs. I still struggle with some systoms and I am also taking Topamax and nurotin. I just want to feel better about myself and help my husband understand how I feel. He is a great support to me. but sometimes just dos'nt understand.

deleted_user
Thanks everyone! My twin and I did alot of research because her surgeon wasn't able to tell her if this was a side effect of the surgery or not. It was a side conversation with a girlfriend that brought up steriods if you can believe it! She's beautiful no matter what...and plus she's got an awesome hubby. Seems what's happening is normal and we'll get through it.

deleted_user
If she has not already seen Dr. Oro at the Chiari treatment center she will be delighted!! Dr. Oro is amazing and she will be in good hands there!! I traveled from Salt Lake to Denver to have him do my decompression in may of 06.

deleted_user
thanks race 121! Its interesting you mention Dr. Oro! He just responded to an email I send the Aurora Chiari Center! My twin will be visiting the center in November! I think we are on the right track!

deleted_user
Hi all. I also had my surgery just recently in Aurora, CO. Awesome Doctor. I will be going back on the 12th for my follow up appointment with him. I actually lost alot of weight. But I also had some set backs as well. Food poisoning and an bad car accident (5 vehicles involved) so I can not say much about weight.

deleted_user
I just had a LP because the symptoms came back after surgery. The NS said I could have increased ICP because of the weight gain. I can't win. The LP seemed to help but now I need to lose the weight I gained from steroids.
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