Officially 6 months post op

1mo ⋅ ⋅

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It’s been since January 7, 2019. I finally decided to get the tattoo.

2yr ⋅

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A gift I made for my neurosurgeon. Thought you all would find it interesting!

7mo ⋅

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Decompression surgery was a success here’s to a new life!!

5mo ⋅

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Almost 6 weeks post op

1yr ⋅

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Post surgery update chiari decompression

4mo ⋅

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1 week post surgery and I feel more alive than I have in years. Happy to share my experience if anyone has questions.

2yr ⋅

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A poem about Chiari

3mo ⋅

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Picture of my 33mm Chiari hernia.

6mo ⋅

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I had my surgery on Tuesday. Does this look infected?

1yr ⋅

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17 years post op ask me anything

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8 days post op!

3yr ⋅

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Two days post-surgery

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Surgery went well- tips for recovery?

6mo ⋅

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Four days post op. I’m normally bald so will be proudly wearing this scar for the rest of my life. May need to get a little zipper tattooed at the bottom.

11mo ⋅

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16 days post op starting to see progress.

2yr ⋅

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Hole in head after surgery. Anyone else experience this? I’m 6 months into recovery. I also had a shunt placed.

1yr ⋅

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13 years post-decomp, and I’ve finally decided to decorate my scar! Made by Summer at Moon Maiden Tattoo in Oregon.

1yr ⋅

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Just had post-op MRI: Before on left, After on right. I feel so much better. Not sure the image looks like too much, but I can def see the missing skull!

2yr ⋅

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4 days progress post op! Tidying up nicely

2yr ⋅

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Something most of us can relate to

3yr ⋅

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3 weeks post op! Feeling great! Any questions I’m happy to ease your mind ❤️

2yr ⋅

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I’m about 5 hours post op. I’m alive, I’m well, walking and talking. Im aware I’m medded up on the drugs. I feel pretty okay for now. If you guys want to hear my story I can let you know day by day and share progress as I know how much it helped me.

2yr ⋅

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Meme/on-topic 😇

3yr ⋅

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Could my many symptoms be chiari? Doctor says it's not enough to cause problems

1yr ⋅

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5 days post op!

4mo ⋅

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“Excuse me mr.barber, trim around the scar just a little bit”😂😂, I hope no one else has this problem with hair stylists

2yr ⋅

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Surgery in 10 days!

1yr ⋅

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22 year old male, 6ft2 newly diagnosed with chiari type 1. Looking for guidance.

2yr ⋅

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8 weeks post op and happy to be alive.

2yr ⋅

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Found out why I’m not healing 3 months post surgery.

2yr ⋅

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September is Chiari Awareness Month

2yr ⋅

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Barometric pressure changes can aggravate Chiari symptoms.

1yr ⋅

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1 week post op,feeling better day by day

2yr ⋅

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I(f24) had decompression surgery w/duraplasty on 6/20, released from hospital on 6/22. Diagnosed with Chiari 1 and LARGE syrinx in April after sudden onset of pressure headache+dizziness. Weirdly pressure headache seemed to resolve in May. Now they are back! Is this normal? Wishing you all the best!

1yr ⋅

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Before and After MRI collage!

4mo ⋅

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Chiari

1yr ⋅

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My neurologist doesn't seem at all concerned with my chiari. Is it because it appears so minimal in images?

11mo ⋅

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Letter from neurologist

1yr ⋅

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~8 months post op second surgery - I had my first decompression surgery in July 2020 and then about 6 weeks later (mid Aug) required a second surgery due to the formation of a pseudomeningocele that led to CSF fluid leaking out the base of the incision 👊🧠

3yr ⋅

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Also here are some of the symptoms I deal with. Anyone able to relate?

3yr ⋅

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I have been suffering from chiari for 10 months now, with a 13mm herniation. I suffer severe pain in my head that feels as if my whole head is being scalped-I get this 24/7 and un-medicated I was unable to even lift my head off a pillow. Just wondering if anyone else suffers these symptoms?

2yr ⋅

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heders here, does this look normal? i'm also trying to get imaging for...

1yr ⋅

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Neuro didn’t believe I had syrinx, so asked my gp to order thoracic mri. Feels nice to be right

1yr ⋅

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intracranial hypotension? acquired chiari/brain sagging?

2yr ⋅

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Doctors 🤦🏻‍♀️

1yr ⋅

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Post Op Must Haves!

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8 days post-op and I’m feeling better and better every single day.

2yr ⋅

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I wanted to ask if this is the right community for this and if not where to go, most of the doctors and medical people I talk to seem to be lost as much as I am.

1yr ⋅

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Could anyone let me know how these symptoms compare to theirs?

11mo ⋅

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Finally got the zipper tattoo!!!

3yr ⋅

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In addition to my last update, here is how the incision is looking 5 days post op

4yr ⋅

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I’m a little bit red because I was itchy and scratched my head😂 Here I am almost 5 weeks post op!

2yr ⋅

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Chiari diagram

1yr ⋅

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Direct drainage of my syrinx after first 2 surgeries did not reduce the size of syrinx. Post op day 3.

4yr ⋅

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I’m confused

2mo ⋅

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Too small to be chiari? Symptoms in comments

1yr ⋅

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Yesterday was my 3 year post op anniversary, and my scar looks phenomenal! It’s hardly noticeable. My surgeon did a FANTASTIC job.

3yr ⋅

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Can anyone explain why the hair growing back around my scar is a different color (reddish blonde) than my surrounding hair (dark brown)? I'm fascinated, and Google was no help. Can anyone explain this phenomenon?!

2yr ⋅

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Neurosurgeon didn't tell my husband the measurement of his chiari , but after seeing pictures of others...this looks really wild. He is scheduled for surgery 2/3. We do have a 2nd opinion next week just because..but just wanted to share. Just got diagnosed this month.

3yr ⋅

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6 months post op. 9.5mm herniation and several syrinx. Feel free to ask me anything and I'll do my best to help!

1yr ⋅

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Me again! I had my incision cleaned up properly this morning! Today is exactly 2 weeks since my op. To say I’m impressed with my healing progress is an understatement!

2yr ⋅

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Here's how I'm looking 10 days post decompression!

3yr ⋅

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Pic from 2 days post-op!

5yr ⋅

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Scar from decompression on June 10 2019

5yr ⋅

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Emotional about it all

1yr ⋅

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Unofficial MRI Opinions?

3mo ⋅

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Opinions on my MRI?

1yr ⋅

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Look at my brain! I've seen posts of others doing this (I knooooow you're not medical professionals). What do y'all think? I got measured at 5mm. See anything else? Thanksssss♥️

2yr ⋅

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How accurate is this symptom/comorbid symptoms list I found online?

10mo ⋅

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Can someone please tell me what I'm looking at?

3yr ⋅

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Pre and Post op MRI

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Yesterdays X-Ray. My 6 month checkup after decompression, rib grafting, and some plates/rods. My neurosurgeon is happy with the progress!

1yr ⋅

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In ICU 6 hours post op.

4yr ⋅

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Check out my brand new syrinx y’all.

2yr ⋅

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Can someone please explain to me what this means? this is what was on my doctors screen that i wrote down about a week ago. (i received my diagnosis after an mri of my brain about a week ago) i’m seeing neurosurgeons tomorrow.

1yr ⋅

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Report says 5mm herniation... Doctors say it’s not enough to cause symptoms...does this appear to be Chiari

1yr ⋅

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This cream is a life saver!! I use it for my neck/back and under my hair on my head. It’s so so good. It has to be 1000mg or more of CBD to work well!

1yr ⋅

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Is this Chiari?

2yr ⋅

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11 Days Post Op

3yr ⋅

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One year post-op results. Syrinx almost 100% gone and neurosurgeon says I'm back to normal, no restrictions, and don't have to follow up again for 2 years 🙏🙏 started off at 14mm herniation with a syrinx from c3 to t4.

2yr ⋅

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What is/was your worst symptoms? And have you had decompression surgery?

2yr ⋅

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Advice for self-advocating...

2mo ⋅

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Arnold chiari as a 16yo (Need help urgently)

3mo ⋅

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Only 3-5mm herniation? Me too. Here's my CSF Flow results. It's rare I found a surgeon willing to operate on 3mm even tho its necessary. Too few like me get relief, so here's an example to help you see the tool & results to prove a need for intervention to the surgeon, hospital, & insurance. -Hugs

5yr ⋅

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His Frankenstein incision! So effing gnarly.

3yr ⋅

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My 2.5 year old- how worried should I be!?!

3yr ⋅

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3 days Post Op!! Saw the scar today and WOW

3yr ⋅

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Chiari type 1 decompression surgery I had 5 days ago. Surgery was supposed to be 2 hours but once getting inside the surgeon's realised it was worse than first thought and ended up taking 6 hours. Recovery is rough. Headaches like nothing before and the pain meds seem to not help too much.

4yr ⋅

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(44M) Diagnosed with Chiari Two Months Ago. Surgery Should be in a few Weeks.

2yr ⋅

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Night before surgery, best view!!

3yr ⋅

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Just wanted some random feedback, even if you're not a doctor. Feels like 30 mm's

2yr ⋅

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Looking for MRI 2nd opinion resources. Been told I have 6 herniated disks in my neck but that these aren't causing any issues, although since July I cant walk more than a few meters with crutches due to weakness in legs and I have severe pain in arms, hands, neck, lower back, hips and feet.

3yr ⋅

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24F pre and post surgery MRI images! I had decompression surgery Jan 2nd for a 30 mm herniation. The difference is incredible! You can see how much ample room there is now. I can finally laugh without a headache, & I no longer wake up with one every morning. Let me know if you have questions!

4yr ⋅

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Can a Chiari malformation be treated without opening the dural lining?

1yr ⋅

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Finally got my scans. Pretty bad syrinx

2yr ⋅

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Pre-op vs. 1 month post-op

4yr ⋅

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Day 7 and finally home. Staples aren’t hurting much. The places they put skull pins in during surgery are sore though. Staples come out next Monday. I have no range of motion in my next which sucks.

4yr ⋅

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Morning of day 8 post op, does this look infected/puesdomeningocele possible?

8mo ⋅

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Photo in regards to my previous post.

1yr ⋅

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5 weeks post op and all of my symptoms came came back. Could my seroma be the cause? MRI below:

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Who can relate?

5yr ⋅

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Post surgery staples/scar

6yr ⋅

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6 days post op

4yr ⋅

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Accidental finding?

3mo ⋅

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MRI Help

1mo ⋅

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What to send this neurologist?

3wk ⋅

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Operation on 1/28/2020 - Will be sent home 1/31/2020 from neurosurgeon Dr. Stephen based from the Colorado Chiari Institute. Dr. Oro was present during my surgery as well.

4yr ⋅

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My wife got her surgery done May 9th, no dura patch needed. What is some advice? I dont even know what to ask lol just need advice.

1yr ⋅

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Y’all. I have to go back to the ER. Been home 2 days ☹️

1yr ⋅

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New here and looking for thoughts. I was diagnosed back in April after months of working with my go to try to get my headaches under control. I was referred to a neurologist but she refused to look at my scans and gave me a book to read.

1yr ⋅

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Chiari Doctor Heffez states Chiari is not possible here, even with symtomology.

7mo ⋅

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3 days post Chiari surgery. Ask me anything. I’m in a lot of pain but will get back to you ASAP.

4yr ⋅

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Unsure of results

8mo ⋅

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Look like chiari? And other questions

1yr ⋅

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Worsening symptoms in red circled area. Any indication visible for this? I was told I have no syrinx.

9mo ⋅

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I hadn't thought of that...

5yr ⋅

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Had this done in Sept & just now got to see it. Doc says there is crowding, but it couldnt be the reason for my migraines?

2yr ⋅

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New MRI showed Chiari 4.5. What to expect at appointment and what questions to ask...

11mo ⋅

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Graduating college today; had to show off my cap to the people who’d appreciate it the most!

5yr ⋅

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Just got my stitches out!

5yr ⋅

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Got my decompression. I was in thw hospital for five days got out the day before Christmas eve. Neck is a little stiff. Oretty loopy from myacle relaxants. But: 1. I can freaking taste things, i felt my nephews foot foe the first time (squeee soft baby feet), my sleeping breathing is better.

5yr ⋅

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Just got my MRI photos. Shared it with a few others with Chiari and they are confused with how large the Syrinx is. My neuro team wants to rush the surgery, due to the size as well.

4yr ⋅

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Tried my best to compare MRIs. My neurologist saw growth. What do you all see? Just looking for as many opinions as I can get.

4yr ⋅

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Chiari malformation?

1yr ⋅

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Little confused about MRI terminology - does this definitely imply chiari malformation?

1yr ⋅

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Before and After my Decompression

5yr ⋅

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Last surgery was April 18’ I zippered up nice.

5yr ⋅

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Mri came back a few weeks ago

4yr ⋅

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Before surgery and 8 months after. Right pic is before and left is after. Syringomyilia more than Chiari.

6yr ⋅

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I got a new haircut and you can see my 4-month-post-OP (almost 5!) scar

4yr ⋅

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My 2007 MRI report said my cerebellar tonsils were located 3,8 mm below the foramen magnum, and as a result, I had been diagnosed with Chiari type 1. However, I had to do an MRI last week (see photo), and they didn’t find anything related to Chiari. How is this possible? It couldn’t just disappear?

1yr ⋅

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Round 2! I am about to go to NYC to see a true Chiari specialist.My 1st neurosurgeon removed too much bone causing my brain to slump. I believe I might need a plate. Has anyone else experienced this?

6yr ⋅

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This is one day post-op. It wasn’t all that bad!

6yr ⋅

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One year post op!

5yr ⋅

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Just diagnosed with Chiari been having worsening symptoms was told it is not due to Chiari since my spinal fluid flow looks good. Has anyone else had symptoms with a good flow of CSF?

3yr ⋅

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I haven't seen too many if any MRV's, so I'll leave this here. Perfectly normal according to the report.

2yr ⋅

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Waiting for Diagnosis but is this Chiari?

6yr ⋅

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I decided to draw my Chiari headaches.

7yr ⋅

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Well thank God no, because then i *might* stand a chance of being cured.

5yr ⋅

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MRW I sit down on the toilet to relieve myself and i can't stand back up because in 30 seconds of sitting my lower body has gone completely numb and I have to use my arms to turn my feelingless ass around and hold onto the toilet tank to stand myself up using upper body strength alone

7yr ⋅

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