New to Chiari and have some questions

Hello everyone. I have some questions that “Dr. Google” isn’t really answering for me. To start, a quick summary of my story is as follows: about 3 - 4 years ago I went through a very stressful time. My mother was dying (who lived in my home) and my work was putting a lot of pressure on me to create presentations via powerpoint… like none stop every day all day for over a year. I was hunched over a computer with alot of pressure to hit due dates. During this time, I suddenly began experiencing weird symptoms with my vision… to this day, I cannot focus on brightly colored objects without getting an instant strange like I’ve never had before headache, but its in the front of my head and around my eyes, not in the back of my head. (I am now employed doing a job that doesn’t require this.) But over the past few years, I still have been experiencing neck pain at the lower part of my neck, an almost constant dull (tolerable) pressure in the right side of my head, the right side of my nose and around the eye get numb (it comes and goes) and my neck is stiff on the right side. These are very mild symptoms compared to what I’ve been reading. Well anyway to continue, 3 years ago I had an MRI of the brain, neck, thoracic and lumbar spine. They were looking for MS, since my mother had MS the neurologist thought for sure I did but the brain MRI showed no lesions. I noticed an observation from the radiologist back then that I had tonsillar ectopia measuring 3 mm; this was noted on the brain MRI and the cervical MRI. I ignored this finding as “Dr. Google” said it was insignificant. My neck pain continued through the years. Recently, I decided to go to an Orthropedic surgeon who did another MRI of my neck. The observation by the radiologist said I have Chiari 1 measuring at 5 mm. I also have a protruding disc in C5 C6, and encroachments and stenosis at C2 - C3, and C3 - C4. When I seen the note of Chiari 1 I immediately began to do research and decided I wasn’t going to mess around. I found a neurosurgeon here in Michigan who specializes in Chiari, Holly Gilmer and made an appt with her (it was a video appt due to the pandemic). This appt took place only about 5 weeks after the results of the last cervical MRI. During the appt, she measured the tonsil herniation and said I was at 9.05 mm, she said it was never at 3 mm or 5 mm. But she also said she didn’t think my symptoms were due to Chiari and referred me for a cervical epidural. Which finally leads to my questions… 1. If I don’t get the headaches then the CSF flow must be ok, right? 2. Do I believe the MRIs or the neurosurgeon on the length of the tonsils? I understand that up to 5 mm is still considered a normal MRI, 3. It safe for me to get a cervical epidural since I do have descended tonsils? 4. Can the tonsils extend further with time, or is this just a measurement error? I have been asymptomatic my entire life up until 3 years ago and I’m not sure if any of my symptoms are from Chiari. My fear is proceeding with treatments, like a cervical epidural, that may make a Chiari condition worse or trigger symptoms like the horrible Chiari headache I’ve read about… so I’ve done nothing yet.

I appreciate you reading my long story, any information you can provide would be greatly appreciated.

1 Like

Hey Dionne! Nice to meet you.First,I would like to say I’m sorry to hear about your mother and all of the stress that you went through at this time.Im not a physician of any sort…just a MA in training and a chiari survivor.I say survivor because my symptoms started the same exact way…extreme sensitive to light,oain behind my eyes etc.The migraines began about 3 years ago I went through many drs who had no idea what they were dealing with until finally I was referred to a neurologist…who then told me that I would be fine but wanted me to see the surgeon because I would eventually need him.I went to that surgeon twice before he said I absolutely needed the surgery or I wouldn’t have very much longer to live.I had my surgery January of this year and still have symptoms however they are alot better.I can tell a big difference.Also,am still getting mris left and right…due to the numbness and pain in my spine.I have a friend now who has had 5 of these surgeries…im telling you this so that you will be aware not to scare you everyone is different.This is just my experience but dont stop until youre comfortable with a drs advice…And feel like youre getting the answer you need.This disorder is unfortunately a tough one to get clear answers on and this forum is the only thing that has really helped me.Best of wishes! =)

Thank you so much for your reply. I don’t want to be scared, but I am so if you don’t mind can you explain why the neurosurgeon said you have to have the surgery “or you wouldn’t live much longer?” Everything I’ve read says Chiari 1 is not fatal unless you start having progressive conditions as a result of Chiari. The neurosurgeon that I seen is supposed to be one of the best … she said she didn’t see a syrinx in my MRI and thinks most my symptoms are from the protruding disc. She said we’ll have to see, that my symptoms could get better, stay the same or get progressively worse. I’m not afraid of the surgery, just afraid of doing the wrong thing. I’m sorry for what you went through and am glad to know you feel better after the surgery. I really appreciate you taking the time to chat with me.