For those who have had the surgery

Just wondering what hoops you had to go through before they did the surgery?

Once I finally saw a surgeon, none. It took many years of not having a diagnosis that is when I jumped hoops. Once I got a proper diagnosis and went to a large teaching hospital with surgeons who knew what was going on it went quick. It was me who actually asked them to delay surgery so I could get my work and family prepared for my recovery. Best wishes to you.

Umm, my story is a bit different than most I believe. I was referred to a neurologist because of something weird on my CT-Scan. The neurologist said I had Chiari but couldn’t answer any questions other than the only “cure” was surgery (and he did say cure) but that it was a last resort. He then had me do neck exercises and whatever and came back in a month. At that point he told me if I was still in pain he’s do an MRI. Well, he changed his mind and decided instead to send me to a pain specialist. This pissed me off so I went looking for a doc in my area that knew something about Chiari and found one. I made a self-referral to him, and got an appointment pretty quick. When I saw him, he not only was able to answer my questions, he did an MRI as well. When the MRI came back he said that my symptoms warranted the surgery, so we scheduled surgery.

From diagnosis to surgery, was 2.5 months.

But, my surgeon also believes I’ve had it my whole liege and the symptoms have been there, just never connected.

In my case - 52 years old and reporting gait/balance problems and family history of brain cancer and MS - I am pleased that the docs correctly diagnosed hew chiari, and supported decompression surgery

My orthopedic doctor did an MRI for the numbness I was feeling and water like feeling down my leg. He advised of issues with my disc but did not see that this was the cause of my symptoms. He saw the syrinx (which was very thin) and sent me to a neurologist. He did MRI and sent me to neurosurgeon. My time frame to surgery was three months. I was basically find until I threw up one night and it got worse from there. I have felt better since surgery but if I do too much my head and neck hurts. Good luck.