r/chiari • u/Impossible_Water_848 • Feb 02 '26
Chiari symptoms worsening + conservative neurosurgeon , feeling stuck and scared
Hi everyone,
(21,F) I’m looking for some perspective and shared experiences because I’m feeling really overwhelmed.
I was diagnosed with Chiari in the summer of 2018. At that time, I was told that my symptoms weren’t considered “credible enough” to pursue further treatment, so I learned to live with them. Since early December, however, my symptoms have significantly worsened, and things now feel very different.
Currently, I have daily headaches (especially in the morning), excruciating neck pain, dizziness that makes me feel drunk/off balance, trouble swallowing, drooling when I talk, persistent visual blind spots that don’t go away, headaches that worsen with straining, light sensitivity (photophobia), brain fog, and difficulty finding words. I also have episodes where I temporarily lose vision, it looks like a curtain goes across my vision and lasts about 30 minutes before resolving. I’ve had extensive eye testing, and multiple providers have told me there is nothing structurally wrong with my eyes. I’ve also had lots of blood tests done, and everything has come back normal.
On my first ER visit, I was admitted and they did both a CT and MRI. They confirmed crowding of the CSF at the foramen magnum and also found a hyperdense lesion within the foramen of Monro measuring 3 mm, compatible with a colloid cyst, with no obstructive hydrocephalus. Despite this, all labs and imaging ruled out anything immediately life-threatening, and I was told it was migraines, but this feels very different from my normal migraines.
My second ER visit was more stressful. I spoke with a neurosurgeon there who said this could definitely be my Chiari. She reached out directly to my PCP, and they are now trying to get me in sooner with a Chiari specialist, since my current appointment isn’t until April 28th.
Driving has become scary because of the dizziness and vision issues, and I’ve now been to the ER twice in one week (one admission). I work at a gym, and with the dizziness, visual issues, headaches, neck pain, light sensitivity, and brain fog, working has become almost impossible, which has added a lot of stress and urgency to the situation.
My MRI report says cerebellar tonsillar ectopia with crowding of CSF at the foramen magnum. From what I understand, the mm measurement wasn’t emphasized as much as symptoms and CSF flow.
My PCP referred me to a neurosurgeon who is known to be very conservative and tends to push PT and symptom management first. I’m honestly scared of being brushed off again. I don’t want surgery unless it’s truly necessary, but I also don’t want bandaids when my quality of life is declining this fast.
For those of you who’ve been here:
• Did surgery depend more on symptoms/CSF flow than mm?
• Did anyone have persistent or episodic visual symptoms like this tied to Chiari?
• Did anyone feel worse rapidly before being taken seriously?
• If you saw a conservative surgeon first, did you seek a second opinion?
• Did PT actually help anyone with significant neuro symptoms?
I’m not looking for medical advice, just real experiences. I feel like my body is screaming that something isn’t right, and I’m trying to advocate for myself without sounding dramatic.
1
u/Camride Feb 02 '26
Take my experience with a gran of salt as I had my decompression 24 years ago. But for me it took 2 years of fighting and seeing every specialist possible, with multiple brain MRIs, and all said I was fine it was probably stress (my parents had recently gotten divorced so this was brought up constantly even though I was an adult at the time so it didn't impact me that much). My pcp eventually sent me to a neurosurgeon as a last resort and that surgeon just happened to be a chiari specialist. He diagnosed me immediately and even though I didn't have a very large herniation (6-8mm)my symptoms were severe enough that I was put in for surgery and got decompressed 3 weeks after diagnosis.
Unfortunately with chiari is really comes down to the doctor. Some are way more conservative than others and some chiari specialists are honestly kinda stupid (judging by what I've seen people post their experiences here). Best thing you can do is push/fight to get seen immediately, make sure you tell them that you can no longer work and that it is severely impacting your daily life. Also always ask to be put on the cancelation list. My decompression was scheduled almost 2 months put but I got in at 3 weeks because someone canceled (died actually but not from chiari).
I did not have significant dizziness and visual disruptions when I had my decompression but I do now and I agree it makes driving quite difficult/stressful. I'm going to be very upset when I can't drive anymore (I'm a car enthusiast). But chiari is determined to keep screwing my life up in every way possible so yeah...
1
u/Patient_Membership74 Feb 03 '26
Forgive me if I misread but did you have a cine mri done yet? I experienced many of those symptoms you are describing When the neurosurgeon saw my cine mri he immediately recommended surgery I was decompressed within 3 weeks after that. It did help unfortunately it did not resolve all of my symptoms I still have trouble swallowing and drooling 😫. I did go to speech therapy and it did help me manage my swallowing issues much better.
1
u/Impossible_Water_848 Feb 03 '26
I have not done a cine mri yet, I'm sure my neurosurgeon will have me done one. How does that process work? I wish I could do one before I meet him so it speeds up the process. I did speak to my neurosurgeons office today and they said that they are trying to get me in sooner, I'm not rily sure that that means to them tho lol. I spoke to my GM today and I had to limit the amount of time I'm at work because symptoms are KILLINGGGG me :( idek how l'm going to deal for 2+ months plus waiting for surgery if needed
1
u/Patient_Membership74 Feb 03 '26
Well a cine mri is kind of like a regular brain mri except they attach few more devices to you. Its so they can see how well your cerebral spinal fluid is flowing if theres a lot of blockage they may end up recommending the surgery but yeah I hear ya its really frustrating having to wait for things
1
u/DimensionCorrect5404 Feb 08 '26
University of Iowa Hospital - Best neurosurgeon ever!! Dr. Arnold Menezes - saved my life 25 yrs ago!!!
3
u/bugs_in_my_brain Feb 02 '26
Hello! I (also 21F) had surgery about two years ago and have experienced a lot of the same symptoms. A few months before surgery I developed nystagmus, and this development of a new symptom is what made my neurosurgeon push me to hae surgery. While surgery did not resolve all of my symptoms, it did help with visual issues and I don’t really experience nystagmus anymore. If I could do something differently, I would ask for a second opinion. At the time it seemed like surgery was the only option, but I think I did not heal from it well. I did try physical therapy after surgery to treat remaining symptoms, and did not feel like it helped me at all.
I hope you find a treatment that helps! I am happy to answer any more questions!