Hello All! This is my first time using this website so I am happy to say hi for the first time.
I am a 23 years old with a Chiari Malformation 1 that is 13mm, no syrinx / syringomyelia, my cine MRI reports say there is reduced CSF flow at anterior and posterior foramen magnum suggesting a partial blockage.
I currently am having the following symptoms that were confirmed to be from chiari by a neurosurgeon: head pain when straining, dizziness and occasional pain when bending over or getting up.
Unconfirmed from Chiari: anxiety, nightmares, sleep paralysis, migraines, occasional shooting pains in limbs, stiff neck, severe tinnitus that comes and goes, random hearing loss, pressure in ears, tingling and crawling on scalp, joints that crack frequently especially in neck, jaw, wrists, feet.
I currently have a ton of referrals to try and work with all of these symptoms and find out if there are other causes before deciding on having surgery, which I was offered.
When I left the neurosurgeon I felt discouraged that there were not a lot of answers as to what is actually being caused by the CM1, or what symptoms would improve or go away with or without surgery. There was also no way to know if the CSF fluid was causing symptoms or would eventually lead to a syrinx.
I also wanted to say thanks for all of your help, every time you post I learn more.
@HelloThere26 Hello! Obviously anecdotal, but I can confirm that I have all of those issues too! I was just diagnosed at 35 but I realize now that I have had these weird symptoms for years. I have decided to have surgery. I would like to feel more normal, especially for my family.
I literally had the exact same experience with a neurosurgeon appointment yesterday. I have all those same symptoms, she only said Chiari would cause maybe 2 or 3 out of my extremely long list.
That is daftness. They really do not know much about the effects of Chiari malformation. Just think about all the structures that are physically compressed by the slumping cerebellum let alone the other structures that are affected by insufficient blood flow or nerve conduction!
No need to get into an argument though, as the neurosurgeon needs to decide if surgery is appropriate, not be hit over the head with the multitude of Chiari related symptoms. With symptoms, I always just stressed the most obvious Chiari symptoms. Perhaps, those who are actively seeing neurosurgeons could politely ask what they think are are valid Chiari related symptoms. I am just wondering what the current thought is right now.
Wow! I am sorry that you are going through this too. I am meeting with an endocrinologist, a sleep doctor, an ENT, getting Xrays and genetic testing, general neurologist, among others to try and rule out what is really what. I am not sure how far I will get but a lot of these doctors have really useful information.
Thank you for writing
It seems like everyone has different views all together, at least from what I can gather.
Thank you so much for writing and sharing. It is so helpful.
Hello there HelloThere26! (Sorry, couldn’t resist …)
You’re in NY, can I ask what clinic you are going to?
Seenie from ModSupport
Hello, my daughter was diagnosed in August and has all of these symptoms as well. She has already seen an ENT, a Cardiologist, an Optic Oncologist, a neurosurgeon and a neurologist. She’s had several MRIs , a barium swallow test, an echocardiogram, an been tested for RA. All tests were negative as far as causing any of her symptoms. If not the Chiari causing them, then what could it possibly be? We have another appointment with a neurosurgeon at Duke’s Children’s Hospital tomorrow and another neurologist appointment with Duke on Tuesday. I am praying they will have some answers for us since all the drs at MUSC were unable to help her and even referred us to Duke.
Thank you for writing. I am wishing you are your daughter well. How did your appointment go?
I am seeing different clinics in Upstate New York, NYC and Pennsylvania.
Hello! It’s been awhile since I’ve checked in, a lot has been happening. We met with a wonderful neurosurgeon at Duke. The neurologist on the other hand is still concentrating on her headaches and not the Chiari. He started new meds that unfortunately have, I believe made her worse. She also fractured her wrist this week simply getting out of bed. As bad as that is, the orthopedic doctor we saw confirmed my suspicions of EDS. Her symptoms are worsening and after reaching out to the neurosurgeon ( because the neurologist won’t return my calls) he has suggested taking her back to the Emergency Department at Duke. It’s been a frustrating few weeks. Thank you for checking on us hope all is well for you.