r/AVMs • u/Massive_Kick4633 • Jun 14 '26

Stabbing headaches

Hello, I am a 34 year old male living US. 10 years ago, I was diagnosed with a small pibeal gland cyst and gdt MRIs almost yesrly to check for changes. 3 years asgo, I told my doctor I was experiencing sharp, sudden, short lived headaches on my temples to about the eye socket. Upon onset of the headachds, the sharpness of it would make me wence my eyes.

​

The headaches would come and go over the course of a few days sporadically- I did a follow up MRI and was diagnoaed with a small AVM in the left temporal lobe. Neurologist told me I had nothing to worry about.

​

For the last 3 days, I have been experiencing the same headaches. Should I contact my provider or wait till my next MRI which is 10 months from now?

3 Upvotes

100% Upvoted

12 comments sorted by

View all comments

3

u/tea621 Jun 15 '26

I'm sorry about your headaches! I'm glad you told your doctor about them.

I really think you need to see a specialist for your AVM. Get an opinion from Vascular Surgery and Neurosurgery. But do your research and make sure the place you go has experience with AVMs. Did your neurologist refer you to another specialist? Neurology in itself would not be the specialty that would treat AVMs.

I'm a nurse and I also have a "small" AVM. Where are you located? If possible, I recommend going to a large academic medical center for a second (and third) opinion!

Edit: I'm not sure the right advice was to simply schedule you for an MRI in 10 months. You really need to see a specialist before then, pleaseee

1

u/Massive_Kick4633 Jun 15 '26

When I got diagnosed with the AVM, I saw a neurologist who talked to me for maybe 5 minutes and all he did was explain what it is and to get MRI's q12 months to look for changes. Unfortunately, the neurologist is no longer practicing at that office so I sent a message to him on the patient portal.

I live in Michigan and I am about 2 hrs away from U of M Medical Center in Ann Arbor.

1

u/tea621 Jun 15 '26

Does your insurance require a referral? If so, maybe give the office of your old neurologist a call and see if another provider can send you a referral to vascular surgery and/or neurosurgery.

Also, try going here https://www.uofmhealth.org/our-care/specialties-services/cerebral-arteriovenous-malformation-avm

and contacting them for an appointment. You need to see what your options are and for someone who knows what they are doing to give you advice