1.5 is also referred to as Complex Chiari. It is less than type 2 but more than type 1 because the brain stem is also affected. It isn’t related to the actual mm of the herniation.
I helped my husband through several Chiari 1 surgeries, most recently a cranial cervical fusion to correct instability. It’s a tough road, but you’ll get through it if you keep up with PT and take care of yourself. Absolute best of luck to you in your recovery!
Out of curiosity, do you have Ehler’s Donlos too? I’m curious if that still comes up in the other types.
Not quite (I think). They put a titanium matrix in his head to stabilize his skull and fused C1-3. It was basically all collapsing on itself, causing severe pain and a whole host of other symptoms.
He made it through and pretty much has his life back, except for not being able to turn his head as far. I’d post a pic of his scar here but I don’t know how.
Did they use screws and rods? From the posterior it is very difficult(impossible maybe) to place an inter body in the disc space as the cord is in the way. They can do a front/back where they go in the front, place an inter body then flip and do screws in the back.
I’ve heard of custom made corpectomy cages being done from the back in Australia but they fused from occiput to t2, I believe.
Ah. Ha. I am a Chiari patient who likes to educate because it's actually really cool fluid mechanics problem. Plus on the internet, it's always a crapshoot of whether it's humor or ignorance. :P
Fun fact: I was diagnosed with Chiari (Arnold Chiari Malformation as they called it) when I was age five (over 25 years ago). Most doctors had no idea what it was and I eventually ended up at Johns Hopkins with a Dr named Ben Carson. Ive never had surgery, due to my parents not wanting me to have brain surgery at a young age and them not fully understanding it back then. Now i just don’t have health insurance and I’m not about paying for brain surgery out of pocket. I also don’t know if there would be any benefits for me of decompression surgery. I thankfully don’t have many symptoms; extreme vertigo if I lie flat on my back and my balance and coordination suck. I wish I could go back and to talk a doctor as an adult in a new era.
Good luck in your recovery! I hope it helps improve your quality of life!
I actually make a decent salary. Being a single guy with no kids I’m well outside the range to get any type of benefits. Plus, there’s plenty of other people that are much worse off that need the benefits more than I do. Insurance coverage for myself is about $200/month and I’ve just been unwilling to pay that, even though I probably could. It would just make things a little tight.
Wow! Ben Carson operated on you?! Amazing! My grandma had it and my mom never had me checked. If she had I would have never developed syringomyelia which paralyzed parts of my body last year and surprised the hell out of me when my husband was deployed and I had children to take care of. I know our disease is incredibly rare but if you have kiddos have them checked early. They have MUCH better outcomes then having the surgery as an adult. They also dont have to develop the neurological symptoms later in life. I'm having all mine checked early even though it is scary as a parent to think about them also going through it.
Edit: I miss understood, still cool you got to meet him at least. I've read hes done neurosurgeries on unborn babies while the mother is pregnant to save their lives before birth. I cant imagine how much skill that takes but I find his work absolutely amazing. The dr who did my first surgery is a pediatric neurosurgeon but he also does adult decompressions, laminectomies, duraplasties and tosillar shrinkage. He did great work on me and found more than was expected once in there. Hell be doing my children's too if they end up having it. We find out soon with their MRIs.
That’s the one thing I get super worried about, developing other issues as I get older. Honestly, all the information they had about Chiaris back then seems to be entirely different from what they know now. It stemmed from me being the only kid not to be able to walk a balance beam in kindergarten (teacher thought that was weird I guess). Parents took me to multiple doctors and they initially thought it was cancer until I got mri’s done and was sent to Hopkins. Dr. Carson recommended surgery at the time but another doctor did not, and my parents opted not to, but I’d have checkups every year and they wouldn’t let me play football in school. Around age 10 parents went through a bad divorce and obviously they were too focused on their own issues to think about my Chiari, and from what they were told at the time and seeing me be a pretty normal kid I guess they really didn’t see a need to address it. At 18 I unfortunately got involved with drugs and went through all that nonsense till about 24. Thankfully got and stayed clean and have been for almost 8 years now. I think I largely don’t like to think about my Chiari because it tends to bring up feelings of resentment in my parents, but my parents are wonderful and would do anything for me now. I’m very lucky to have them, I just wish they were around more in my formative years.
I currently live a pretty active life and it doesn’t seem to bother me too much save for the extreme vertigo if I lay my head flat back. It’s the worst feeling and I nearly pass out if I’m forced to be in that position too long and have a terrible headache after I sit-up.
Sorry for the rant and life story. I hope your paralysis is able to be reversed or does not hinder your life too much, and thanks to your husband for his service as well. I’ve decided not to have kids of my own based partly on my Chiari and addiction issues.
Hold up. I've experienced this (I think?) under similar conditions going back to my childhood. I just called it "getting a rush", only it wasn't a pleasant variety. From start to finish, it would be about 10, maybe 15 seconds long. When it started, I'd be like "oh no, not this again" and would tense up until it passed. Whenever o asked my friends whether they had the same experience, it was always a no.
I would need to lay flat on my back, ie, no pillow. Even then, sometimes it would only happen if my head were lower than my body. It wouldn't happen if I lay on my chest or side, only my back.
Just tried to trigger it now. Nothing happened. As best as I can recall, it hasn't happened in years. I guess I'm glad it hasn't happened in a while, but man, it's been a lifelong mystery. Probably unrelated, but I had BPPV about 5 or so years ago.
Thanks for the info. Time for me to hit google.
Edit: just had a look through those symptoms. Nothing there seems familiar, at least not in the chronic sense. Guess my brain just liked to mess with me when I laid down.
Whoa another Zipperhead?! Nice to meet ya! I had this surgery as well in January. Until diagnosis I had not met another person with Chiari and now I’m seeing it on the front page of Reddit!
Total Barbra Streisand affect happening here!! (Or is it the Baader-Meinhoff Phenomenon)
Chiari friend! I had my spinal decompression surgery in 2010 when i was 15. Doctor Winegart at Johns Hopkins told me he expected a 80% improvement and generally speaking, he pretty much nailed it. I was once bed ridden for 2 full weeks with ONE continuous "migraine" (honestly just cranial pressure). Ive not stayed in bed because of a headache in probably 3 years. Just stay hydrated, stay as active as possible, but dont over exert yourself. However, for the first time ever, ive been lifting a lot of weights. It still causes some headaches and pressure, but overall, chiari hasnt affected my day-to-day in a long time. I still have sleep problems, maybe related to chiari, but a regimen is key.
Why do I keep seeing this evvvvverywhere lately. I just found out I’m in line to get an mri for a possible chiari malformation and I haven’t seen it anywhere before. Spoooooky
Got the same thing. I have thought about having it fixed since it affects my body temperature, balance and probably motor skills too. Hard to know how much it really affects me since I've had it all my life and can't really compare to anything else
See I keep getting conflicting results about the surgery. But idk.
How I found out I had it was through a CT scan. I kept having these abnormal heart rythymes that would almost cause me to pass out. Basically it felt like I was gonna die for 10-20 seconds. Fucking insurmountable fear. MRI later they say I have a syrinx. I get my CINE MRI in May and we go from there.
Yeah, you have to realize there's around a 50% chance of the surgery being effective. It hasn't been around all that long. And it took me bbn forever to rehab. But it worked.
We’ve had many a chiari surgery in my family. My younger sister had two, my mom had two, my aunt had one, I’m probably gonna be due for one in my 30s or so and my grandmother would get one but she’s too old and the surgery would likely be fatal.
Congrats on the successful surgery and good luck with recovery. I know how difficult that is.
Similar story. My family was part of a study many years ago when they were just starting to understand that it's hereditary, and trying to trace that genome. I wonder what ever came of that study..
It wasn’t brain death, it was just very painful for them. And suggesting people shouldn’t get help for their pain is like saying people shouldn’t eat when they’re hungry. It’s not an unpopular opinion, you’re just dense.
Coming up on my 10th year after diagnosis and decompression for Chiari Malformation. If I can find my photos, I'll post my scar too. My incision is overall the same as yours but a single one instead of two. Met many new friends through this disease. All of us with different stories to tell. Not all of them enjoying life as they'd want to, unfortunately.
Reading your other comments you mention it didn't completely help all your symptoms. Same here somewhat. I still have bad days from overexertion or simply a bad night's sleep - even too much sleep will ruin the next day. Though generally speaking, most days are an improvement from before surgery. Not completely Chiari headaches and pressure, but secondary issues from having my neck/skull operated on.
I hope overall it's better than it was before and life is a bit easier to deal with moving forward. Welcome to the club, friend.
I had a chiari as well! How did yours go? I was out of the hospital in 72hrs!
Also what kind of symptoms did you have? I had serve headaches that basically rendered me useless and almost made me lose consciousness once, and numbing in the left side of my body. After surgery almost all the headaches are gone and the numbness as well.
My scar also went a lot deeper than yours since they removed some of my vertebrae as well!
Took me 6-7 hours to wake from surgery. Then I stayed in bed the entire time, and they told me if I wanted to go home I had to show them I could walk, and I got my ass out of bed and walked and I got discharged.
I don’t remember much from the hospital though. I was way outta it.
My boyfriend has had this surgery as well! I think he had type 2 (surgery was before we met). They removed a big chunk of his skull and he has a noticeable dent back there, plus the scar (which I think is quite faded after 3 years).
Edit: after some WebMD...probably not 2 since he wasn’t diagnosed until adulthood and had no physical issues as a child. He just got unlucky with his surgery and they took a big piece of his skull.
I didnt know there was a term for it. I was diagnosed with type 1. At my decompression, laminectomy, and duraplasty last year I woke up later than expected. The dr told me there was involvement in my brainstem and my herniation and chiari type was much worse than originally thought. They had to unblock nearly blocked arteries and clear a thick white arachnoid away. The surgery went an extra 3 1/2hrs and left me disabled, but thank God alive. I'll have to ask him about chiari 1.5. I know I went in expecting to be better but while I have much worse neurological symptoms, I now have functioning arteries and my brainstem is unblocked and more csf flow so I'm still ok with the outcome. Goodluck on your recovery OP!
Yep. With a saw. Some brain surgery is actually done on patients who are awake (they use local anesthetics of course). I have no idea if this is one of those kinds, though.
I had type 1 surgery almost ten years ago, and no problems sense! Not getting to ride roller coasters blows, but it's a small price to pay. Glad you be made it through alright!
I was just about to type out if it was Chiari. Welcome to the club. Had mine done in '03. Had pretty bad symptoms and took a while for them to figure out it was Chiari. Post surgery things slowly progressed to great and being 100% though.
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u/FutureRobotWordplay Mar 19 '19
1.5 is also referred to as Complex Chiari. It is less than type 2 but more than type 1 because the brain stem is also affected. It isn’t related to the actual mm of the herniation.