Any clues?


My 10-year-old daughter had a hemorrhage from a ruptured AVM in 2009 that required an emergency craniotomy. A year later, she had a second crani because of residual AVM. Last year, same thing and third crani. The last one was last summer. In November, her vision was as expected – left-side field cut. By February, all peripheral vision is gone on both sides. Neuro ophthamologist today confirmed the major visual deficits that didn’t exist post-surgery. Doc says it’s either bleeding or swelling in the lesion. I am in a bit of shock and disbelief. We go back next week for an MRI and appt with neurosurgeon. My daughter has had 20 CT scans. So I am desperate to find out what’s going on in her head.

Any ideas?

– Tina

Sorry to hear that Tina.

I hope they find a cause, and then can proceed to a fix.

Best wishes,
Ron, KS

So sorry Tina. This hits me close to home. My dtr was 6 at time of her initial bleed too…last June. I hope they find the source and are able to fix it swiftly and completely!! Thinking of you!

I am so sorry that she has suffered so much in here young life. You know I will be praying for her!

Well, MRI was checked by two neurosurgeons – both said it’s clear. Optometrist says it must be just moving scar tissue and healing from July surgery, even if all was fine in December.

I have no idea what’s the next step. I have tried to just keep moving forward with things. But three brain surgeries, one eye muscle surgery and loss of about 75 percent of vision seems like a lot to throw at a 10-year-old who was completely normal at age 6.

For the first time, I find myself wondering what I did wrong to have delivered a little girl who’s got a lifetime a challenges ahead of her.

Sorry. A bit of an update and a bit of a rant.

Take care everyone. Best wishes,

I am so sorry and can only imagine what you and your daughter are going through. You did nothing wrong. Sometimes things just happen and it's just not fair. This is certainly not what we all anticipated! How is she doing? My thought would be if she is seeing the right specialty for her eye challenges. As a friend of the family (and retinal specialist at a world renowned eye hospital) said ... Neurosurgeons are great neurosurgeons...but they are not eye experts. IS the optomotrist a particular specialist in this area? Do you have access to a pediatric neuro-opthamologist. It may be worth looking into...I know Dr. Heidary at Children's Hospital in Boston is great! IT is a triple specialty and really the best for pediatric eye/neuro issues. There is a great one at CHOP too. May be worth calling and looking into espeically to save her vision! Good luck and hang in there!