Hi all,
I have posted here before, though it was many years ago, when my 9 month old daughter was diagnosis with a pial AV fistula. This was resected by craniotomy at 11 months old. We thought she was cured. Thankfully, she has done well since then with no deficits.
Follow up imaging showed a large area of “abnormal vessels” with slow shunting, which no one could define and we have been living without a diagnosis for almost 4 years. We have been following with routine imaging. My daughter is 5 now and still well, though she had her first seizure in September while she had a viral and bacterial infection - all is well since. Angiogram from this month showed a change or growth to these “abnormal vessels”, they are essentially growing with her and there are 2 new arterial feeders. I proposed the idea of cerebral proliferative angiopathy (CPA) to her primary team at NYU and they seemed to agree that it was most consistent with that. I wasn’t convinced, as I essentially diagnosed it myself. However, this was presented at the NYU neurosurgical conference MANY times and although no one really knew what it was, they agreed it was most likely CPA (after I “diagnosed it”) and to watch and wait.
After this new progression, I have asked for second opinions from Dr. Lawton at Barrow (the AVM expert) and Dr. Ed Smith at Boston Children’s (who handles a lot of CPA cases). They both have completely different opinions - BECAUSE WHY WOULDN’T THEY UGH
Dr. Lawton says it is residual slow flow AVM and can be treated with surgery (with pre-op embolization). Dr. Smith thinks is CPA, and surgery would be very high risk though not unreasonable, but watchful waiting is recommended but further progression is expected and can result in seizures/cognitive deficits as she ages.
We are hoping to talk with Dr Lawton on the phone on Wednesday. I obviously LIKE his opinion more, but I don’t know who to trust or who to listen to. How am I to make such a decision that can change my daughter’s life forever? At least with her first surgery it was “clear” that she needed surgery, and it wasn’t up to me.
Has anyone been in a similar situation? Any recommendations for another online second opinion?