Hi Tabitha,

I was diagnosed with the same type at the hospital a few weeks ago. I have to have a MRI on Monday. I feel so lost and scared too. I think I may have had this for a while and didn't know it. If you want to talk I'm here.

Hi Tabitha,

I was diagnosed with Chairi last year. I had a hard time finding a dr to see me or even take it seriously. My neurologist and the Chiari "specialist" in my area were no help at all. They both said that the chiari had to be at least 5mm and that there had to be fluid blockage. So since mine was only 3.5mm with no blockage the neurosurgeon wouldn't even see me. He told me that this couldn't be the cause for my daily headaches, migraines, neck pain, and numbness in my hands and feet.
I did not believe him, I knew deep down this was the problem, because I had tried everything over the past 10 years to get rid of the headaches and they just got worse. When I was finally informed about chiari, all the symptoms I had made sense.
So I continued to look for a neurosurgeon that specialized in chiari. I found Dr,. Dan Heffez in Wisconsin. I filled out his forms and sent a copy of my scans up to him. within a week or two I received a call saying that he did believe it was chiari causing my problems and that he would like to schedule an appointment.

I was very happy that FINALLY I found a dr that would listen and believe me! So I made an appointment, flew up there in July of last year from Arizona. I met with him and a neurologist. They both believed it was Chiari, but before we went forward with surgery they asked me to try a occipital nerve block. When I did that and it didn't work, Dr. Heffez agreed to do the surgery.

I flew back up there January of this year for the decompression surgery. It has been 6 weeks since the surgery and I feel great! I have not had a headache yet! And I was having them everyday, and having to visit the hospital at least once a month for migraines. I also got more feeling back into my hand and foot.

I was afraid of the surgery but it was very simple. It is an inpatient surgery and you are there for about 4 days, but it was nothing like I expected. Of course the first day wasn't fun. There is some pain and you are drugged up, but after that I can't really say I was in major pain from the surgery. Yes the incision hurt and the muscles were stiff and sore, but I was not on any major pain killers, just a Tylenol/codine a couple times a day.

I would highly recommend looking into Dr. Heffez. He doesn't believe in the chiari having to be a certain size or any fluid blockage. If you have chiari there is always the chance that it is pinching on the spinal cord no matter the size.

Good luck, if you have questions feel free to ask.

hi my name lee I had chiari malformation type 1 and 6 week later a VP shunt put in 2013. First don't worry or look on the internet for answers, any questions you have right them down and ask your consultant when you see them as its there job and we are not doctors. They only recommend the op last resort if need and remember they do the ops everyday. I asked why has it took over 10 months for start consultant to OP, its a way they monitor you .I was happy with the NHS service I had 100 %. Good luck

new-life, thank you for your comment! I was recently diagnosed and literally have the same option, surgery only. I have to find a neurologist yet that will do it, but I couldn't find much online (and my family doctor didn't have answers) as to what happens after the surgery. Your brain is essentially exposed right under the surface of your skin on the back of your head.... that is concerning.

Hi Tabitha, I was diagnosed with arnold chiari back in 2006 with a 6mm herniation. It is not well known up here in Canada therefore I have no choice but to live with it til it kills me. It has caused many issues for me in hearing sight balance motor skills. I personally quit going to doctors up here because I know there's nothing they can do and I'm not about to become a research project. My last hope was decompression surgery as well as to fix the scoliosis to a degree. Specialists told me I only had a 30% survival rate so it couldn't be done. I must use canes n crutches when I leave the house for balance and to take some pressure off my spine. I have had many many different symptoms that come and go, some stay some return. I get get on here that often but feel free to message me. I know there are treatments that surgeries that can help in the States....not really in Canada.