please don't be afraid to call them for ANYTHING that seems not normal. i had so many complications after surgery, it's a scary process and it the worrying doesn't stop until you are fully healed, and never completely stops, to this day. it's been almost a year since sugery. if you want to talk, e-mail me if you'd like.*** hope all goes well!

Hi Stephanie, Im sorry to hear about you still feeling like **** after the surgery, i too got my surgery a couple months ago and I FEEL AWFUL! i talked to my dr today and told him how i was feel the same and more. I hope you get back on here if you want to email me please do! Missy.

My sister and I were very close, attached at the hip since she was born until we got into our fortys and she was diagnosed with chiari syndrome at Loma Linda Medical Center. She was sent to Neuro out of Long beach Univ. Hosp. for surgery.

She has changed so much, I don't know what to do for her. She hates me and almost our entire family, she is in pain, has terrible anxiety and worries excessively about her occipital area being injured so close to her brain. It is almost like she gained a split personality with this syndrome.

I am so grieved over losing her, I can't hardly breathe sometimes.

If you have had Chiari Decompression surgery and still have a constant headache, you may also have Arnold's Chiari. This is where the spinal fluid still will not flow after the surgery. I was diagnosed with both at the same time. I had a shunt put in first to allow the fluid to leave my head. After that I still had the Chiari symptons and eventually had the Chiari Decompression surgery. I am telling this because even after Chiari Decompression, the aquaducts to the brain may be too small (as in my case) to allow the flow of spinal fluid.

I have recently been diagnosed with Chiari. I am a 50 yr old female that started having severe headaches to the point where I have been unable to work on some days. I am scheduled to see the neurosurgeon tomorrow and I'm a little anxious. I am not afraid of having the surgery, I'm just not looking forward to the recovery. I was diagnosed with rheumatoid arthritis 12 years ago and some of the issues I have been dealing with I now learn are symptoms of the Chiari and not the RA. For that reason, I am excited about having the surgery done.
I am curious as to how large an incision has to be made and how long I will have to be off work. I know I can get these questions answered by the doctor, but sometimes they don't tell you everything. I am reading the posts on here and that has been very helpful. I want to thank everyone who has contributed information through their posts. I plan to also contribute as I travel through my journey to a better life. That's what this surgery means to me, and I hope I don't learn otherwise, is a better life for me, my husband, my children and my grandchildren as I work toward being more able to enjoy time with them.

Are you having a shunt inserted or the Chiari Decompression surgery? I have had both, that's why I ask so I can tell you more about how mine went.

I understand. From what my surgeon told me was that in some cases it doesn't get rid of the headaches, it just shouldn't get worse. For me it did but also there are some things we did to help. One we bought a chiari pillow. It keeps you cool through out the night. Also realized heat would bring them on a lot. We bought these bands that have crystals inside and when it gets hot I place it in water and will it will keep me cool for hours. For me I also have syrinx so there is nerve damage. I'm just trying to learn to deal with. Which is very hard. I hope I helped

OK! I am a 22 yr old male. I used to do a lot of gymnastics and i did a lot of stuff on trampolines! i think thats how i set off my ACM i was diagnosed with it 06/2011. I am at the point where i am trying to decide if i want to have surgery or just live with this for the rest of my life. Symptoms=
INtense vertigo that flares up once about evry 2 or 3 months- mild vertigo thats almost always apparent aka if i look somewhere reqqally fast or if i close my eyes while standing- Headaches oh god the headaches!- Insomnia... this just might be the worst symptom because it seems that the more sleep i miss out on the worst my dizzines and headaches are. - fatigue... i am 22 and i am usaully exhausted after 2pm. i am still in good shape and even though it kills me i still work out about 3 times a week.- BLoody noses (i am not sure if this is related but i do get them all the time- Arrousal issues... again not sure if it is related but i have a whole lot of dificulty gettin my manhood up even with a viagra. Bottomline is this, I am a cop so i run and chase bad guys all day and its so difficult to maintain focus driving writing reports and physically having to fight with bad guys while i am dizzy and have a horrible headache! so far it looks like 95% of the people on here regret having there surgeriess so i need to know if its worth it! I am 22 and i dont want ruin my life cuz its the only one i have!

Jarredddd,
I was diagnosed at 34 and had Decompression Craniectomy, with C1 Laminectomy at 35. I had disrupted CSF flow so my surgeon had to open the dura membrane and lyse the arachnoidal adhesions and then he used a dural patch to close the opening. The best advice I can give to you is to find yourself THE BEST Chiari Specialist around. You have youth on your side.....every young person I have spoken to with Chiari has healed much faster than us "OLD" folks..... Good Luck and keep us posted !!

thanks! i need all the help i can get! does anyone know about a fundraising for the surgery and recovery time?

how much does a normal AMC surgery cost?