Surgery (tonsillectomy & decompression) coming up Jan. 13--eek!

Hey everyone. It's been a while, I know, and I'm sorry. You have been such a tremendous support--I can't imagine dealing with this without the network of fellow Chiari patients I have interacted with over the past year.

Appropriately, I have an awful headache right now so this will be brief, but I wanted to share (and also seek experience, encouragement, etc. from fellow Chiari sufferers) that I am scheduled to have a tonsillectomy and decompression (no duraplasty) on January 13 in New York. My symptoms continue to progress, and my CINE MRI shows a complete blockage of CSF flow at the level of my herniation. That, combined with my worsening headaches (more frequent and more severe) bumped me into the good surgical candidate category for him.

Insurance will be a great big bucket o'joy as I am traveling literally coast to coast--I'm in the Los Angeles area--to see him. A kind friend set up a GoFundMe page for me and it has resulted in significant, humbling amount being donated. It at least will put a dent in what Blue Shield may pile on to us because my doctor is out of network. I wound up seeing him twice because none of my local doctors have been any good for me, and it's been frustrating as heck. I have lost faith in them, at least when it comes to Chiari. At this point, I don't care--I just want relief and help. The idea of having a part of my brain shrunken/removed is unnerving, but I'm reassured the tonsils have no function.

Has anyone here had the tonsillectomy and no duraplasty? What has been your experience?

Head is killing me right now, so this usually wordy person is going to cut this short for now. But--that's what's going on with me. I'm scared, but also eager for relief. I think my biggest fear is it won't do anything. But I'm at the point I want to try.

Take care and hope everyone had a wonderful Christmas.

Sorry for delay. Worst headache of my life today–first time I’ve thought about going to ER. Six hours of hell. Now have my head wrapped in a heat pad and have new prescriptions for zofran and Tylenol 3 and functional again, so, yay.

Dr. B advised the tonsillectomy only because the incision is smaller, the section of skull removed is smaller, and the incision in the dura is smaller, all of which mean the risk of a CSF leak and infection is greatly reduced. In fact, he told me in the 90+ of these procedures he’s done in the last three years, he has never had a leak or infection.

Every case is different and he goes with what he thinks is best in that particular patient. Taking everything into account, this is what he recommended for me.