I just got diagnosed with Chiari malformation 1 three days ago. My neurologist told me I had it, referred me to a neurosurgeon and sent me on my way after saying he didn't really think I would need surgery. My mom and I got home and started doing some internet research, and to our surprise, realized that Chiari explained literally everything I'd gone through in the last two years. The beast had a name. Now, realistically looking at surgery, my brain is a little scattered, but I was curious if someone could explain to me the cerebellar tonsillectomy? I'm ok with the opening of the dura and all that that entails, but removing part of my brain kind of scares the crap out of me.
Also, I have long, really thick hair. What's the best way to deal with hair after surgery? Should I cut it?
I am looking at decompression surgery, I find out when Thursday. You sound like me, have to know everything then to top it off I have really thick hair but only just past my shoulders for years. I went to hairstylist and told them what I wanted and what I was looking at and they suggested a haircut that if just slightly curled with a straight iron will cover the entire thing. Personally removing part of brain would scare crap out of me to...one of my first questions to the NS I asked when he mentioned the surgery a month ago now. He said he wouldn't be doing that cause that is senseless. It is scary when you look at what you've experienced and what goes along with this how long you've been showing symptoms and not even knowing it.
I just wanted to say that I did some research after reading your post and found that the tonsillectomy is actually the old way of surgery for CM. Not many NS's do it anymore. Now they do the posterior fossa decompression, where they open the dura and remove part of the skull to make room for the tonsils instead of removing the tonsils. I'm not sure if that helps you, I just thought I would let you know. I personally would probably take off running if my NS told me he wanted to remove them. As far as the hair thing goes... due to my CM, I had lost so much hair, that all I could do was put it in a pony tail so I didn't really have much options on styling after surgery, so I can't help you there. Sorry.
Hi Christy its me agin and to bmtiz92 I have very long hair down to my waist. I just had a decompression surgery. It was of great concern to me. My surgin Dr. Angeles also ha long hair past her bra strap. She told me to pull my hair into pigtales and place rubber bands on them then braid rubber band. I did as she told me when I came out she said she saved my hair. I almost cried I felt it was shaved up the middel Whn I cleaned things up I pulled quite a bit of hair off from what she had to shave she saved my hair. Im very happy with the results. You cant even tell with my hair pulled down. Prayers and blessings
Christy Mullen said:
I am looking at decompression surgery, I find out when Thursday. You sound like me, have to know everything then to top it off I have really thick hair but only just past my shoulders for years. I went to hairstylist and told them what I wanted and what I was looking at and they suggested a haircut that if just slightly curled with a straight iron will cover the entire thing. Personally removing part of brain would scare crap out of me to...one of my first questions to the NS I asked when he mentioned the surgery a month ago now. He said he wouldn't be doing that cause that is senseless. It is scary when you look at what you've experienced and what goes along with this how long you've been showing symptoms and not even knowing it.
Christy -Yeah, I just feel like I don't know anything at all. I've been through so many doctors, that actually having a diagnosis is hard for me to process, much less that there's actually a fix for it. I had prepared myself for so many outcomes, but brain surgery was NOT one of them. I would love to have even a semi-normal 19 year old's life. Me and my Mom have been reading up and every now and then we'll read about a symptom and suddenly something else makes sense, it's just crazy.
Jessi, that makes me feel better. I came across it in a couple of places and it totally freaked me out. I wasn't sure if that was a normal thing, or something new or what.
Twana, thank you. I like the sounds of that. I know it's ridiculous but I don't want to be bald. I should be worried about the surgery and the pain that comes after and if I'll ever be right again but...It's easier to focus on my hair, if that makes sense. I can control my hair.
I just noticed, you said you have hairloss from the CM?? I've lost a lot of hair on the top of my head but haven't found anything that says it can be related to the chiari, and I just do braids over it so you can see it. But it can be connected to the CM??
Jessi Linn said:
I just wanted to say that I did some research after reading your post and found that the tonsillectomy is actually the old way of surgery for CM. Not many NS's do it anymore. Now they do the posterior fossa decompression, where they open the dura and remove part of the skull to make room for the tonsils instead of removing the tonsils. I'm not sure if that helps you, I just thought I would let you know. I personally would probably take off running if my NS told me he wanted to remove them. As far as the hair thing goes... due to my CM, I had lost so much hair, that all I could do was put it in a pony tail so I didn't really have much options on styling after surgery, so I can't help you there. Sorry.
Hi! Do not cut your hair, just part in the middle and leave a little out. We put Julia(my daughter) hair into pigtail braids and left some of the back middle out. The staff just shaved what they needed to and now it is growing back already!
I'm 3 months post decompression. My surgeon just shaved a strip where he needed to. He pulled my hair up and out of the way. You would never even know I had surgery now. My hair covers the scar.
Yes. Thinning hair is a symptom of CM. It's not one of the most common ones, but it is. And I forgot to tell you, when I had surgery, I pulled my hair into a ponytail in the back, kinda high, and they shaved a strip about the size of the razor and once my hair was down you couldn't even see it.
Bmtiz92 said:
I just noticed, you said you have hairloss from the CM?? I've lost a lot of hair on the top of my head but haven't found anything that says it can be related to the chiari, and I just do braids over it so you can see it. But it can be connected to the CM??
Jessi Linn said:
I just wanted to say that I did some research after reading your post and found that the tonsillectomy is actually the old way of surgery for CM. Not many NS's do it anymore. Now they do the posterior fossa decompression, where they open the dura and remove part of the skull to make room for the tonsils instead of removing the tonsils. I'm not sure if that helps you, I just thought I would let you know. I personally would probably take off running if my NS told me he wanted to remove them. As far as the hair thing goes... due to my CM, I had lost so much hair, that all I could do was put it in a pony tail so I didn't really have much options on styling after surgery, so I can't help you there. Sorry.