11/23/18: Diagnosed with 11mm chiari and a large arachnoid cyst in occipital region.
I’ve had a decompression surgery on 11/29/18, then had CSF leak (between sutures; like a faucet) which resulted in another surgery for REVISION on 1/3/19. Then developed a huge pseudomeningiocele and was convinced a VP shunt would take care of it. So I had shunt placed 1/31/19.
I’m in much worse condition than I started. I had headaches with straining (tussive headaches), constant heaviness of head/neck, and fatigue. Now after the surgeries, I have constant headaches, tussive headaches, nausea, fever, chills and extreme fatigue.
My surgeries were done with a neurosurgeon who now I know is not a chiari expert (has barely done any chiari surgeries). I had only gone to him to review my MRIs as he was available the soonest but when I was there he said I need to be in CCU immediately due to severity of my condition (per MRI images). I got scared, got admitted and had surgery. I had an appointment with a chiari expert a few days later but couldn’t go there as apparently I needed to be in CCU with neurochecks every hour.
My surgery next week (3/5/19) is with Dr Frim who’s considered an expert at these surgeries and I’m praying for better results.
I would love to hear how you all are recovering by now.
Hello. I’ve experienced horrible jaw pain and clenching as well. Went from 1 cavity to 9 in 2 years, due to chiari. Spent hundreds of dollars on mouth pieces. Even buy over the counter mouthpieces, only for them to alter my teeth and causes worse headaches (as if they need any help). I have found a mouthpiece that just sits in between teeth versus forms to them. Is working well for now, in between appts. Heres a photo
I was diagnosed with a Chiari malformation Type 1 on Feb 28th of last year. At the time the docs at NYU Langone wanted to schedule my surgery for a week later on March 6th… I couldn’t accommodate a surgery that quick with having kids so they pushed the surgery date out to April 5th. Come April I had a bad upper respiratory infection and they canceled my surgery the morning of the procedure. I’m SOOOOO HAPPY that happened, it gave me time to go get a 2nd opinion and it gave me time to research and find the best doctor possible to perform the surgery. I have a 14mm herniation and when it was first found I had a 30mm cyst in my spinal cord as a result. By Nov 2018 the cyst in my neck grew to encompass my entire neck, from the base of my skull to my collar bone. I found Dr Jeffrey Greenfield out of Weill Cornell in NYC to take me on as a patient and I am so incredibly grateful for him. He just performed my surgery on March 4 2019 and I’m in the recovery process as we speak. He did the standard decompression surgery, laminectomy, and Duraplasty. He had a 1% fail rate on the Duran patch which is phenomenal from what I’ve heard from other docs and recovering Chiari patients over the last year. I left the hospital 2 days after my surgery when they expected me to be there for a week to 9 days initially. I go for my first follow up today to see what the doc thinks about my recovery thus far, but all things considered, I think I’m doing just fine. The pressure still is intense sometimes and I obviously have a lot of neck pain right now from the surgery, but hopefully that will all go away with time. I look forward to my next MRI to see how things go. Good luck to all of you and if you are in NY or the tri-state area, I HIGHLY recommend Dr Jeffrey Greenfield and Weill Cornell in general out of MY Presbyterian. Take care all!
Hi, I also have a 8mm chiari and I have numerous symptoms such as, confusion, words mix up, forgetfulness, pains of various places. When I was diagnosed in 2012 I saw a neurologist that used me as a guinea pig. He gave me all kinds of mind drugs and I went down the rabbit hole. Depression, etc. I went to my general doctor who explained what I had 3 yrs later… Stress makes it alot worse. I have learned to deal with it and came out better than I ever expected. She gave me muscle relaxers, and Naproxen. I have figured out how to live but did go out on disability because I kept losing jobs. I finally saw another neurologist last week (7 yrs later) after going to the eye doctor a few wks ago. Eye Dr said I have damage from Chiari, but it does its damage 1 time and done. Told Neuro that and she said thats not true. I have had 2 MRI’s, both said no chiari. Getting ready to do another one with a neuro radiologist checking it. I was never sent to a surgeon and and just stopped blowing my money. There is a list of no’s and I do try to stay away from them. I am 64 yrs old and enjoy life all I can! I feel very blessed!
ME TOO!!! And that ‘Rabbit Hole’ is about right and it’s a dark, gloomy, lonely place down there. I was trialled on all sorts of uppers and downers and meds that were just horrible. I gave up on ever getting answers for my ‘oddball’ symptoms, nobody could find a cause. ‘It must just be you…’ So, I buried myself in my work. I learnt to ignore it all and just keep on, keeping on. But then things got to a point where they could be ignored no longer.
I’ve seen all sorts of professors, physicians, specialists and doctors and they all have their own opinions and are very quick to reject any other opinion that does not align. I’ve been on this neuro journey for over 20yrs and still today I have medicos ‘having a guess’, it’s really disappointing and frustrating. When I saw an ophthalmologist complaining about my eyes he says to me (and I quote) “Well, you’ve had brain surgery. What did you expect?” I didn’t expect this.
I was diagnosed 6 years ago. I am currently 42 and going in for my third brain surgery. I have met people with chiari who have had no surgeries, 1 surgery and some people who have had even more surgeries then I. Every person is different. I hope you can find the right care. My suggestion is to go to a hospital neuro surgery group that has a chiari center. I went to one in Long Island NY that was amazing, and now I am going to UPMC in Pittsburgh which also has a chiari center. They have specialized testing that can get you more answers and options. Good luck.
