Forgive me if this is the wrong place to post this. I’m still trying to figure out the in’s and out’s of this site! After experiencing an atypical migraine last Wednesday I was sent in for an MRI. I have never had problems with migraines prior to this event. I presented with a blown pupil (right eye), pressure in my temples, pressure behind my right eye, an odd sensation that started at the base of my skull and radiated up to my crown and then down to my eyebrows. None of this was painful. Just ODD! The symptoms lasted 8 hours. Prior to this event, I have been experiencing odd stress type headaches at the base of my skull 4-5 days before my period.
The MRI detected an AVM that measures 11x7x7 cm. I’m thinking this is HUGE!! I don’t know where it is located only that it was found in the transverse section. I am being referred to a neurosurgeon. I don’t have that appointment scheduled yet. Waiting to hear back from my PCP. I have mild arthritis and clinical depression treated with medication. I’ve been studying online all that I can find from reputable sources.
I’d love to hear any advice that you care to give me!
I’m so sorry that you’ve been hit with this sudden and scary news. I’m so glad that you found this group (and so quickly, too) to help you as you deal with this new reality. I’m guessing it still feels pretty surreal to you right now.
You are right…it IS huge! You should probably consult with neurosurgeons who specialize in Giant AVMs (that’s what the big ones over 6 cm are called…Giants.) I would guess there are other places in the U.S. that specialize in the Giant AVMs, but Stanford University Hospital in California DOES specialize in the Giants. Usually they are too large to treat with only cyberknife, or only embolizations. Standford uses a multiple modality process wherein they remove what can be safely removed, embolize what can be safely embolize, and use the cyberknife on any portion of the AVM that is considered to be too risky to either remove or embolize.
Be sure to ask your neurosurgeon how many avms of this magnitude he or she has worked on, what their success rate has been, and if appropriate, if there are any medical centers or surgeons they would recommend that you see for a second opinion. These AVMs are so tricky, and most doctors are only comfortable doing what they’ve learned about/done/seen in the past, so it’s very valuable to get as many opinions as you can afford to get.
The very best of luck to you. Please let us know what you find out.
Chary- that is a large AVM. It would be my suggestion that you accelerate the doctor’s process somehow. Keep calling until you get a response from someone.
Chary, welcome to the site. And yes, that’s a whopper of an AVM! You’ve found this site early after your diagnosis, so that’s excellent. Lots of great advice here. Definitely want to see someone as soon as you can, and do make sure they specialize in AVMs. Kati gave some great advice. Remember also, as you have questions, write them down so you’re sure to ask the doctors when you get in to see them. Good luck going forward.
Oh…I also stopped taking my arthritis medication since it is an NSAID. What should I take? Tylenol?