Looking for support and information

Haven't posted since my surgery in July 2011. Why? I really don't know. Maybe I wasn't looking forward to delving into the topic of AVM's again - not emotionally ready, and maybe I'm still not. I am looking for some support from anyone who has had their cranio and is still working thru recovery. My main issue right now is dizziness and light-headedness....I read somewhere this may be due to Vertical Heterophoria? Any info or thoughts on this?

Hi Rachael,

I did a search of this site for Heterophoria and there no matches (other than your post). I also searched, using the box in the upper right corner of this page, for dizziness. Ugh, there are 48 pages of comments containing "dizziness". You'd get dizzy reading all them. [Sorry, I'll go stand in the corner now.............]

So I can't help directly. Glad to see you post though.

Ron, KS

Hi Rachel,

Have you talked to your neurosurgeon about it? If it is AVM-related, the surgeon would be the best person to help you sort out whether it has to do with blood flow, brain waves, vision change, or any of the other possibilities, so you can then see the right specialist for some help.

It could be due to something entirely separate from the AVM, too, like anemia. (Especially if it changes with position or activity.) Your regular doctor could run through the usual causes to rule them out.

Let us know what you find out!

Hi Rachel,
Glad to see that you feel well enough to post. I also had my surgery in July 2011 and I am still recovering. I have problems with my speech when I am tired, I forget what I want to say and I can't think of the words. I am not worried about this as I consider it part of my recovery. I also get dizzy spells when I change position in bed. Think this is related to my ear where there is a small part that has to be moved. Anyway my neurosurgeon was not worried about this. Cheers Ina

Thanks you for your replies. I constantly worry of this issue is something that should/shouldn't be happening 8 months after the surgery.

I have asked my PCP to set me up for bloodwork to check the anemia, and anything else that can cause these symptoms, and I am going to schedule another appt. with my ENT just to run it by her and get her opinion on it.


I also had problems trying to think of what word I wanted to use. I have slowly gotten better, and only occasionally do this now. I will hope this gets better for you as well. Take care.