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Chiari Malformation

Also known as Arnold-Chiari Malformation

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  • Anyone with Chiari suffer from constant fatigue?

    Hello I have had issues for many years now.  Headaches, dizzyness/vertigo, tinnitus, you name it.  The absolute worst thing I suffer from is chronic fatigue.  I am always tired, I cannot hold a job full-time because I will just pass out.  It doesn't matter how much or little …

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  • Chiari malformation

    My daughter was diagnosed with epilepsy at the age of 19 after MRI test showed cerbral tonsil or chiari malformation injuries from her seizure are terrible and it's effecting her life daily some forums say the condition and epilepsy are not related how can this be anyone have an answer plz

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  • Physical activities

    Hey guys, So I have Chiari Malformation type 1. My symptoms are pretty under control but I do have some co-ordination problems. I am also really clumsy. I wanted to go bouldering or rock climbing. Does anyone on here do it? I used to when I was younger but haven't since being diagnosed. Just …

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  • Chiari malformation

    I have a 17 year old daughter that was having severe headaches, blurred vision , back aches couldn’t concentrate at times. We had gone several times in a three month span to the pediatrician until finally one of the partners suggested an MRI. Four months ago she was diagnosed. After meeting with …

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  • Recurrence?

    Question: I am post decompression two years. Recently, I've had dizziness, stumbling, hypersensitivity to light and a tightness in the back of my head. Only a slight ache that I can treat with Tylenol. I wear an APAP device at night for Sleep Apnea. But I have the dizzy/stumbling during the day. …

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  • 7 months on from decompression surgery

    I had my decompression surgery in January 2018 and it’s now 7 months on and I’m STILL getting severe head pain, usually when I’m laughing as of late. I honestly thought (or hoped) the surgery would fix me but I’m still getting the same amounts of excruciating pain at the back of my head. Has …

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  • Herpes and Decompression

    Hello, I have oral herpes and I am looking into being decompressed for CM1. My question is if anyone else with herpes was decompressed and ran into complications because of the virus? I genuinely appreciate your help and honesty. What are the risks of having this virus and getting decompressed? …

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  • I’m lost

    hello. I’m 37 yrs okd and have had 4 craniotomies to decompress and try to eliminate what chiari malformation has done to me. Since December of 2017, I’ve been suffering with so many symptoms fro severe head pain to numbness and weakness to double vision and so on. I returned to my previous surgeon …

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  • Will Brain MRi show chiari?

    Hi ppl!! Im currently under investigation for chiari malformation. met with a neurologist today... which claimed that chiari can't cause the symptoms im experiencing. He said it was ANXIETY, fatigue and depression or ALL IN MY HEAD! He did a bunch of tests,(reflexes&stuff like that, which …

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  • Is it Chiari?

    Hi all,  I have had a range of neurological symptoms for 2.5 years and was originally diagnosed with Functional Neurological Disorder. Symptoms come and go such as tremors, tingling in extremities, nerve and muscle pain, but I've had a few new ones pop up recently, including double vision …

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  • Need advice please

    Hello Everyone, I'm new to this forum. I'm a 38 year old female,who was diagnosed with chiari malformation type 1 about 12 years ago. When I get my severe headaches the only thing that somewhat helps me is regular excedrin. Can anyone suggest any other forms of relief, not necessarily …

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  • Curious on what to do?

    Good afternoon: I actully been having headache since march and when I went to the ER they give me a number to call and schedule my MRI. I actually didn't do my MRI until June 21st because of weather where I live at stop me. My neurologist nurse called me to make a follow up appointment to …

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  • Opinions Northwestern University CM1 Surgery

    I am having my surgery at Northwestern University in Chicago May 8th. Does anyone have any experience they can share about having their surgery at this hospital? I am not sure if talking about specific hospitals or doctors is allowed or not so someone please let me know if I can’t. If it’s not, …

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  • My Humble Tips For New Chiarians

    Dear new Chiarians I had my decompression on 8th of May, they sent me home next day(walked to home), I have been jolly, happy, I don't feel like I had an operation, They only done phase 1(put a hole back of my skull) hopefully this will work and my 40cm syrinx will shrink slowly(already feel …

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  • Different aymptoms

    I have Chiari malformation with aqueduct stenosis and fluid on brain. I had a etv surgery but ct scan showed no change a month after. My symptoms are all back. Headaches, neck pain, pain in throat almost as if tubes there. Pain across shoulders back and spine. Also a weakness down left side. …

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  • Chiari 1 malformation

    Due to my chiari 1 malformation it has caused a large syrinx through my spine. I had surgery 12 months ago but they left the syrinx. I have been and still am experiencing a sharp pain from the top of my arm down through my lower arm and into my ring finger every time I sneeze and it's only …

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  • Does this sound/look like Chiari?

    Hello! I've (25 y/o male) been dealing with quite a few unexplained neurological symptoms since the end of May of this year. I haven't received any answer(s) as to what would explain all of them, and I'm getting quite frustrated. There hasn't been a single day where I've felt …

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  • Dizziness after Chiari surgery .....anyone else ?

    My son had decompression surgery on May 8 at 15 years old.  His symptoms started quickly in November of 2017 with headache, dizzy , neck pain , clicking in neck , awful snoring...had to go on homebound from high school last eight weeks and so sad as he is so smart !!  Since surgery …

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  • I don’t believe my diagnosis.....

    I am a 51 yr old woman. I went to a new neurologist  because I was having blurry vision, dizziness and bad headaches/migraines daily. Back up in the years prior,  I was diagnosed as a teen, passing out as a football cheerleader,  with thoracic outlet syndrome. My mother and I decided …

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  • Occasional nausea after shunt and decompression

    So after having a shunt placed 5 weeks ago and then a Chiari decompression three weeks ago, I have no idea what is normal as far as recuperation. I am experiencing occasional nausea and vomiting. It is not debilitating and has happened maybe four times since the last operation. I really though that …

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  • No surgery?

    Hello,  I am 20 years old and have recently (this year) been diagnosed with Chiari type 1 at 7mm. My symptoms have been ongoing for around 6/7 years. They include awful headaches, dizziness, tiredness and some disturbed vision. I have seen a neurologist and have now been referred to a …

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  • Chiari malformation ???

    Hi I've had an mri which showed a 7mm tonsillar ectopia they said this was minimal but could that that be classed as chiari malformation the Neuro never mentioned it I only seen it after requesting a copy of scan

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  • Possible avm after cerebellar decompression

    I'm not even certain where to begin so I'll just try to touch on the main points. I am a 29 year old female and I started showing symptoms of a chiari malformation when I was in elementary school. I wasn't diagnosed until my senior year of highschool, I believe because my family doctor …

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  • post decompression and car accident

    My son had Chiari decompression and C1 removal in 2014. His scoliosis curve has continued to increase and was at 59 degrees in mid April. We are discussing spinal fusion surgery. During the past two months of getting referred to the appropriate surgeon he was involved in a car accident (they hit …

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  • Chiari and RH factor.

    I am curious if any other Chiarian's had Rh factor issues at birth and if so, how many had exchange transfusion(complete blood transfusion)?

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  • How long after surgery did it take?

    So today marks the 1 month point  since my surgery. I have two herniated tonsils of 8-11mm. I have no syrinxes. Pre-surgical symptoms were headache, brain fog, fatigue, and lots of neck pain in back, sides, and even front of neck and sides of face and jaws. I got the posterior fossa …

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  • Recurrence of Chiari malformation

    I had decompression 6 years ago for a servere malformation. Recently I have been getting similar symptoms to those I had before my operation . Can a malformation grow again after decompression? I would not like to go through the operation again.

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  • I’ve diagnosed myself

    So I went to my doctor and showed him my mri I had in 2017 and pointed out that my cerebellar tonsils looked herniated and so he ordered another mri and come to find out i was at 12mm and now I’m at 18mm so they are sending me to a neurosurgeon!! I hope I can one day be headache free!!!

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  • CSF Flow Percentages?

    My neurosurgeon at Northwestern University told me that there is no real way of calculating the percentage of blockage of my CSF flow. He said all they can really tell is if there is a blockage or not, and I guess see if it looks like a bad bloackage or minor one.  I bring this up because I …

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  • Is the surgery with dura opening the last straw?

    What comes after posterior fossa decompress with a dural opening if this oarricular surgery doesn’t provide the relief the patient was hoping for?  I had the surgery on May 8th, and I am still obviously very much in the recovery phase and I still have a couple months to go to get out of it. …

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  • Just diagnosed....experiencing lots of sx

    Hello everyone, my name is Angie. I'm 27 years old and I was just diagnosed with a chiari 1. Three months ago I started having extreme pain in my skull and facial bones. Then I started noticing that my skull and bones in my face were growing/thickening, which has caused my eyes to become …

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  • Chiari Malformation Type 1?

    Hi all, my first post and after some general advice please. As from last July I have had tinnitus. It wasn't until September I went to see my GP who referred me to an ENT specialist. I had a hearing test which confirmed some mild hearing loss and I was sent for an MRI to check for an …

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