This may be a silly question! And maybe not the right group… but I can’t find an answer for the life of me! Has anyone gotten Chiari Decompression surgery and had plastic surgery? I had decompression surgery 3 years ago, I want to get a BBL and a breast augmentation, but there are about two doctors that turned me away after me telling them I had that surgery.. can you not get plastic surgery if you’ve had decompression surgery?
Like the title implies, I'm looking to get my diagnosis of FND removed from my chart. This idiot neuro slapped it on my chart after not even 30 mins of talking to me and zero testing done. I don't fit any of the FND description in terms of symptoms or disease progression, and I believe she only put the diagnosis on there bc of my documented psych history w her organization (which has been fully resolved for years anyway). It has caused so many nasty comments from providers who assume I'm some crazy psych patient, it's incredibly difficult to get taken seriously, and it's also j not accurate. I have notes from my PT and an MRI showing cerebellar tonsillar ectopia that prove it's not FND, but honestly my symptoms and medical history prove it enough. It follows me like the plague and I'm sick of it, I need it off but no one seems willing to touch it even when they don't agree w the diagnosis either. I want the medical treatment I deserve, and I have no idea how to go about it. If anyone knows of any reliable providers in NJ, NYC, or CT (preferably in the NY Metro area or around UConn, but I'm willing to go a bit further if necessary), the suggestions are much appreciated.
had surgery May 2025. My syrinx is unchanged. But there was something added this time and I just want some thoughts on what this could mean? it says “The phase image demonstrates CSF flow, ventral more than dorsal, at the cervical medullary junction.”
Any ideas or knowledge is appreciated.
Was recently diagnosed with Chiari 1. Ive had it all my life but my symptoms have recently been acting up. The feeling of cut off circulation and slight numbness in my left arm has been persistent for 2 years, but what is recent is left side of my head, left top of ear are slightly numb, and I have a weird weakness in my left leg. Do these types of flair ups go away???
I was officially diagnosed with Chiari 1 about two years ago. The first time this happened was a couple months before an official diagnosis. Once every couple of months, my left arm starts to get tingly and it goes down into my hand. I then get chills all over my body to the point where I start shivering and can’t get warm. I also sometimes get a low grade fever. The first time this happened, I was shaking so bad that I ended up going to the ER in the middle of the night. They hooked me up to an IV and gave me fluids and did some blood tests. The only thing they found was that my magnesium was on the low side.
Has anyone experienced anything like this?
Thank you in advance!
got surgery on my birthday this year 7/9/26 (first pic was around 2-3 days post op) and am almost 2 months out now! last pic was a week or so ago after getting my sutures out :)
haven’t even had to take a lot of pain meds, only downside was small blood clots in my lung from getting surgery which i’m only on blood thinners for a few more months as a precaution. and just got my 1 month ct scan done today for my next neuro appointment. all in all, doing much better than i thought i’d be and i’ve had a lot of improvements with the headaches and neck stiffness i had before. it’s definitely sucked but any progress is good.
About to start week 2 of recovery.
My traps are so tight even on muscle relaxers. Using heat and ice as well. Any life hacks or things you did to help everything settle down and relax? Can feel tightness from my neck to the inside of my hands (thumb and pointer finger)
Chiari malformation. Mri says stable appearance since 2022. New worsening throbbing pain wakes me up from sleep. Early mornings. Peak pain in mornings. Pain is strictly left sided occipital area. Sometimes its throbs to the top of head on the left side sometimes behind the eye. During the pain it hurts to move, if i start to fall back asleep regardless of position it starts to throb. Starting qulipta to see if it will help. Does this sound like csf issues from chiari or migraine?
Hi everyone,
I am a 26F and I am having surgery for a 1.5 in a few weeks. I am so scared haha. I've been attending university for the past 7 years, graduated from professional school last year and finally started a job and making money only to be told I have to get the surgery asap. I'll be out of work for 6 weeks. My job has been so accommodating, so that's not what this post is about. I guess I'm just scared something will happen. My surgeon at Mayo was very honest about the possible side effects, and I am so scared I will face them. Additionally, I get sick often so I'm just worried recovery won't go well. I've spent so many years stressed in school and I feel like I haven't gotten a real change to enjoy life and now I have to face this major surgery with no idea how it will go. Of course I am optimistic, but I'm also trying to be a realist. When I met with my neurologist she told me that 9/10 people don't even need the surgery so when I finally met the surgeon I was so unprepared for what I was told and took it so hard. That's why I want to be prepared now even for the worst. If anyone has any words of advice or encouragement, I would greatly appreciate it. Even if it's just something tough I should be aware of, I'd rather know and prepare. Thank you in advance.
I had my surgery yesterday 8/14 later after and I have yet to get my pain under control. The oxycodone and muscle relaxers don’t last enough and the duladid has become ineffective.
I have not slept more that 5-10 mins at a min had any experienced this here! Any suggestions??
I'm seeing the Chiari specialist tomorrow to discuss my treatment plan and possible decompression surgery. What did you take with you to your appointment? Your symptoms list? Any specific questions? I appreciate your help.
For context I found out I have a 16m Chiari with brainstem impacts. No Syrinx. I went to see the top neurosurgeon in the county as I get pins and needles often, heart palpitations and restless legs. Headaches I’ve had since a child and they don’t really worry me.
Main Dr didn’t come in to the appointment until the triage doctor went through the history. Triage then summarised for main Dr. Main. Main Dr said no need for surgery as he could only guarantee it would fix the headaches which don’t really worry me and the other stuff he wasn’t convinced was related to Chiari. I was thrilled to not be needing surgery… but on reflection I’m not sure triage doctor replayed every symptom correctly… are pins and needles and restless legs related to Chiari, are they really worth surgery? Can they lead to more permanent stuff? Dr said no, so I’m not even sure why I’m questioning it. I hate the idea of brain surgery so was ecstatic when he said I didn’t need it, but I’m so scared of permanent damage…
My chiari has been getting worse, sure, but the thing exacerbating it the most are these random coughs I get. My throat gets scratchy and I try to waterboard myself, but the cough inevitably comes.
I cough after talking too long, eating, drinking, sometimes doing nothing at all.
And then I am on the floor until the pain passes.
Anyone else here?
If there are any others here who've undergone the surgery in either Barcelona, Italy or China.. Please let me know if you have any advice regarding my travels or stay or regarding my recuperation. Thank you!
I have chiri malformation type 1 and I honestly have been dealing with a variety of things . I mean the symptoms didn’t really start showing up until I got older and then too I have like brain fog dizziness fatigue headaches muscle pains anyone else have that
Attached is a photo of my scar. I am 16 days post op from my decompression surgery and suddenly the skin/ muscles around my incision are starting to swell more, hurt more, and itch intensely. There is swelling but it doesn’t r feel like a “water bed” and it’s not physically leaking so I don’t think it’s a CSF leak but I’m stressed about it. I’m 5 hours away from my actual surgeon, so if I wanted a CT id have to go to my local ER. Another detail to add is 3 days after discharge, maybe day 6 post op, i had a severe bowel impaction which forced me to severely bear down early on, causing increased pain. I’m hoping that didn’t spark any complications. Anyone have advice???
Hi there,
My surgery is in 5 weeks. I quit nicotine yesterday (learned on Weds I would need the operation next month.) I had a lot of nicotine gum daily the past few years and I’m worried it will affect my surgery/recovery even if I stop now. Any one have experience with this/information?
5 days ago I lost my ability to raise my head I mean I can but every time I do my head goes all swimmy pressure like my body goes weak and I get extremely dizzy, my visual snow has worsened and my ears ring 24-7, my brain fog has escalated and I feel so loopy. I have a know 7mm chiari malformation with a significant csf floor block but I think it’s worsened, I’ve been to the ER twice no help, I’m literally bed bound I’ve had ti have my partner bathe me and use a bucket to pee in NO JOKE, can’t get in with my surgeon until September 1st, I so so scared can’t even hardly lay on my back just my left side.
I got this lil guy as a gift and wanted to share
PLEASE HELP!!
I need advice I saw neurosurgery. neurosurgery doesn’t think I’m a candidate for surgery which I really don’t want surgery. Mild to moderate CSF decrease in posterior and anterior at the fornaem magnum. a headache specialist can’t see me until February. My neurologist can’t see me until October and he said he’s not sure what this pain is because it could be chiari or migraine. What do I do? I’m in pain every single day. No one’s helping me what could be causing this??
Chiari malformation. Mri says stable appearance since 2022. New worsening throbbing pain wakes me up from sleep. Early mornings. Peak pain in mornings and strictly starts in mornings. Pain is strictly left sided occipital area. Sometimes its throbs to the top of head on the left side sometimes behind the eye. During the pain it hurts to move, laying back down flat hurts. Drifting back to sleep hurts.