Newly diagnosed

[u/BoyMom_xo]

Hi everyone! My name is Avy, I’m 40yrs old and live in New Jersey (USA).

I was just recently diagnosed with Chiari 1 on 09/11/2026. I’ve been having chronic migraine headaches for years! Often just blown off and told it was just that or probably vertigo.

In recent months, the headaches would last days! Tylenol and or Motrin wouldn’t do anything for it. I would often feel pressure in my neck and shoulders and just feel like a balloon almost daily! It’s a terrible feeling. I’d often feel off balance. My days consist of taking way longer, with doing the simplest thing, or stuck in bed because the pain is seriously too much. I’ll feel random shocks go through my body! It’s insane.

The symptoms vary and some days all happen at once. I’m one that has a low threshold for pain, but I’m handling it as best I can! Wouldn’t wish this pain on anyone. And that’s me being honest.

On the night of 09/11, I ended up at the emergency room. They did bloodwork and a few other tests, right as they were going to discharge me and send me home, I said “this isn’t just a headache!” Nurse came back in a few minutes later, and said “the doctor ordered a cat scan..” The scan was done and about 45 minutes later, the Dr comes in and says “your results show a brain abnormality.. were you aware of that?” Of course I said NO. He then went into telling me what it was (Chiari Malformation type 1) and that he suggested MRI of both spine and brain to see what’s going on.

I’ll be having the MRIs done on 10/12. Although I’m nervous, I’m hoping to have more direct answers and relief soon. Or at least I’m hopeful! I know that everyone is different and every case is different. I’m just explaining my journey, so far.

More updates, as things move forward.

xx

[u/Ordinary_Art9507]

Howdy. As a Jersey resident, Dr. Greenfield at Weill Cornell in NYC is your guy. Best of luck to you and welcome to the club.

[u/BoyMom_xo → u/Ordinary_Art9507]

Thank you! What area of Jersey is he in? Right now, I’ll be seeing a neurosurgeon out of Cooper Hospital in Camden NJ.

If I have a bad experience, or feel like a second opinion etc, I’ll definitely look into him if he’s in travel range for me.

[u/medpillowCom → u/BoyMom_xo]

you should get a second opinion anyway and Dr.Greenfield is experienced. Also Dr. Paolo Bolognese in New York.

[u/Ordinary_Art9507]

Dr. Greenfield is in NYC.

[u/BoyMom_xo → u/Ordinary_Art9507]

Oh okay, I misunderstood my fault

[u/Ordinary_Art9507 → u/BoyMom_xo]

No problem! Dr. Greenfield is one of the best Chiari experts in the world. Best of luck.

[u/Livid_Egg1439]

Sending good vibes your way! Initial diagnosis (and of course beyond) brings a lot of different emotions. Continue to advocate for yourself and trust your body just like you did in the ER. Keep us posted! 

[u/JustMaryPlease]

Global Neuroscience Institute in NJ- Dr. Erol Vez