IamA 34 year old woman diagnosed with a rare Chiari Brain Malformation. I just found out I need major brain surgery. AMA!

I heard that CM signs can vary from person to person. What symptoms did you initially present with and when did they get worse enough for you to seek professional help?

I have had symptoms for years, just not knowing what they were. For example: numbness in my hands and feet, headaches. A severe pain in my back which I blamed on work related things...

I had a severe car accident and they discovered it in a cat scan. So a life saving car accident!

If the course of action taken i removal of the tonsils themselves, is that expected to have an effect on any areas of brain function? Or just get em outta there, weld ya back together and go on about yer business?

I have read that it wont much matter, but my neurologist tells me that we just dont know enough about the brain so it can be hard to tell how these things really do effect us.

wow. Thanks for having the fortitude to come here and answer questions in the face of so much uncertainty. You are what reddit is.

Neat! Thanks. I have been reading reddit for years and this is the first time that I really wanted to participate. :)

Possibly but not likely, they just want to correct the deformity so CSF is no longer forming a syrinx. They try to avoid this at all cost and like to give the tonsils more room. The biggest danger is letting it go untreated and having the syrinx expand and cause irreversible damage.

That's right. I may face some spinal surgeries as well, if the syrinxes don't go down on their own. I have one that is HUGE and painful. There is concern of facial paralysis as well as in my limbs if it goes untreated. Surgery is the only treatment

What type of pain medication were you given and how routinely do you take them?

I have been given an anti seizure medication that is supposed to be good for nerve pain. I havent requested any other pain medication. I have a very high tolerance for pain. Not to say that I wont be flying high after surgery lol!

A close personal friend has a young son who had Chiari and the surgery. The child before was strange, with bouts of shaking and fits of tears that made no sense. There were other strange things the child did. I watched him often, while they worked or went out. After the surgery, the child was very, very much different. The fits went away. However, he may never speak.

Do things like that scare you? I'm frightened of brain surgery.

Honestly, I have a wicked temper and I am genuinely hoping that some of that internal frustration may subside.

As for the side effects, I try very hard NOT to panic. I do have my moments of course. When it comes to side effects, there are so many to be frightened of. Like death for example.

Thanks for answering. Thinking about the emotions you could be feeling now is enough to make me shiver. I appreciate the insight and for what it's worth I wish you a metric fuck ton of luck.

Thanks for asking. I have had moments where I am a total emotional freak. It ia very scary. Thanks for the support

My wife had that surgery about 2 years ago, all went well and she experienced substantial relief from most symptoms. Good Luck!

Hey thanks :)

Hiya. The link you provided is broken for some reason. Could you please rectify??? I have questions i wanna ask!

OK sorry fixed! www.facebook.com/sarahschiarijourney

How did you find out? What made you go to the doctor?

A life saving car accident ha! After my car rolled, hospital insisted on a cat scan and they saw it there.

Has this affected your balance? My mother had this same thing I believe and was having major balance problems. She successfully made it through surgery probably 20 years ago. She was about 40 when she had to do this.

Yes. Looking back it seems I do have crappy balance.

Well it sounds like what my mother had. If you wanted to talk to her about her surgery / recovery / whatever I could get her to get on your facebook page. Not sure what your looking for, support, advice, etc.

That would be great! If it is ok with her of course.

Have you seen or read any of the other Chiari boards on here yet??

I found one that doesn't seem very active.

I have a friend who is 23, beautiful, and does pageants who stands for Chiari awareness. It's because she has it and has had major surgery to help correct it. Just wanted to say don't let it put a damper on living life how you always would! What are the doctors saying needs to be done surgery wise to fix it?

Thursday the 28 I meet with the first surgeon, so will hopefully have more answers then.

Thanks for the encouraging words!

I had a Chiari Malformation with 12 MM descent. I had resection in 2009. It went really well and I am merrily living my life.

It can be totally okay so don't worry too much, okay?

Generally I am positive, thinking of the benefits of surgery. Thanks. It is good to hear the happy stories. I am worn out on the horror stories for sure!

People are more vocal about the negative. People who have the surgery and have positive results, go on and live their lives and never think about it again. They don't hang around and post about it on internet forums.

I remember that I had a lifting restriction of 5 lbs. for like 3-6 months afterwards, to avoid rupturing anything on the inside. My mom had to come live with me, because I had young children at the time and I couldn't life and carry them. Also, the pain didn't hang around too long but I was exhausted for a very long time, longer that I expected. I was napping or going to bed early for maybe 6 months after the surgery.

I can imagine! I am not vanking on it being easy. I do hope to have no complications, but it seems the risk is out there. I am so glad to hear you are well and feeling good.

I am recovering from chiari decompression surgery on April 6th. Neurosurgeon believes my syrinx will drain on its own. Best wishes for you on your journey! What neurosurgeon are you seeing and have you set a surgery date?

Seeing my first surgeon the 28th. They say the same about my syrinxes and BOY do I hope it is true!

Are you married or in a serous relationship, and if so, do you think you or your partner is handling the fear and uncertainty with more aplomb? (Im kinda thinking you cuz yknow. here and all.)

I am in a serious relationship. I suppose it depends on me and how I feel in the day. The wave of emotions are intense.

Quality "taking a step back" assessment. Most of these voluntary AMAs are sidelong book plugs or similar stunts. I'm sorry if I'm gettign to deep, but I'm enamored by the emotional strength it requires to do this. I would not have it. All my <3 and repsect.

Honestly, I am just killing time until surgery because the wait is killing me