I'm having trouble holding head up like I used to be able to. I'm just wondering if the cause of it is my Chiari.
Hello! I have a autism service dog named moe he’s the best!! Does anyone else have one and know what to say to people talking to your dog when ur pretty much non existent in public or super over stimulated like me?
I am going to ask about a Chiari Malformation when I get an appointment to see a dysautonomia/pots expert and see if they refer me to neurology. I am a 17 year old female and looked at a list of potential symptoms of Chiari. Again, its just potential and not confirmed so I thought I’d just ask here if anyone else has these. My main ones : Stuffy ears (CONSTANTLY, and it is really uncomfortable), 27 degree scoliosis of Thoracic/lumbar spine (from T11-L4, and it has a compensatory, or the same ther direction, curve on lower thoracic spine too), Ehlers Danlos hypermobility, headaches (both valsalva and orthostatic), had an episode of like a couple of months of lower back pain and it just went away and didnt come back, nausea and dizziness, feeling of swaying while sitting, poor motor skills (fine motor and proprieoception), lump in throat feeling for about 6-7 months, sensitivity to audio stimuli, a feeling of pulsating in my occipital area of my head (it moves sometimes but it usually sits back there and gets worse with exercise, I notice it when I lay down mostly), and many other smaller symptoms, my most pressing is the last one mentioned as it bothers me the most and I’m a tad concerned about it. I want to hear your experiences? Again, not asking for medical advice just wanting to understand
I was diagnosed with Chiari Type 1 Malformation and now I have to see a neurosurgeon. I'm kinda scared about what they are going to tell me. If you have had this and had to have surgery can you tell me a little bit about what happens. It would really calm my nerves to know how other people have done.
I've been doing research on my symptoms lately, and the one I've found that matches the most is a chiari malformation, any advice?
I was diagnosed with a Chiari malformation today. My main symptoms are imbalance and occasionally issues with incontenence. I see a neurosurgeon tomorrow but I was curious about what your symptoms were, if you got it fixed, and if so was it worth it? I’ll of course see what my doctor has to say but I’d like to hear other experiences!
Has anyone here had a decompression surgery? I'm scheduled to have one soon and I'm not sure what to expect..
have you found anything that helps with the pain? do you experience new symptoms every year?
Hello! I recently had two concussions within two months. Due to the symptoms lingering my dr had me do an mri where they diagnosed me with chiari malformation and sent me a referral to neurology. I still haven’t met with them and I’m really anxious about it and what will happen
Should I go through with decompression surgery?
im wondering about others experiences with chiari 1 malformation, who possibly also have syrinx and the decompression surgury! i had scoliosis since the age of 4 with an incompitent doctor that only focused on that and none of my other symptoms that lead to chiari until we switched and contacted a neurologist when i was 9 who got me an MRI and discovered the syrinx was so bad if they hadnt caught it as late as they did id be paralized right now, and so i had the decompression surgury and by the time i was 11 the scoliosis was gone and now (im 18) the syrinx has shrunk to the point of not posing a threat anymore and i didnt have to get them drained :)
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Anxiety (Including GAD)