Wednesday, November 16, 2011

We spent the day yesterday meeting our new neurologist, amongst other doctors too. Hannah's neurological exam was normal with no glaring issues. The doctor was very thorough and very smart. She said right away that she wanted to order an EEG, an extended EEG, a neuro-ophthalmologist visit, an MRI and an MRA. This brought to light for me many things I hadn't thought about before about Hannah's eye issues.  The doctor said we needed to start here and rule out things for Hannah.  The EEG's were to rule out seizures, which are common among brain tumor survivors, the ophthalmologist visit to check for any obvious neurological related eye issues, the MRI to rule out recurrence, and the MRA to check for stenosis (narrowing) of the blood vessels in the brain due to radiation. None of these options are particularly attractive, as they all carry their own consequences.

The doctor knew we came from a long distance away, so she immediately called and sent us over to the hospital for the EEG. She then called and set up another appointment for Hannah to see the neuro-ophthalmologist. These doctors can really make things happen quickly when they want to. It would have taken us weeks to get in to do these on our own!

We headed over to the hospital, thank goodness for our GPS, especially because I'm not the greatest with directions (I can hear my mom and dad laughing right now) and we were somewhere in the middle of Queens (I think.) Let me just say that GPS has no way of knowing where they send you, but they get you there usually the quickest route. We were lucky to make it through the neighborhood we were in! They took Hannah right in for her EEG, hooking up the electrodes to her head. It was a 20 minute test and they hoped that one of these "eye moments" would occur so they could catch it on the monitor. Hannah said right away that it didn't happen and the tech confirmed that it was normal.  To stick the electrodes to your hair, they put cream on the end and cover it with cotton. After the test, the tech started to scrub, and I mean scrub, Hannah's head to remove the cream. She was using a wet towel, so Hannah's hair was wet and all tangled when the lady was done. I could see that Hannah was crying, but I wasn't sure if it was because the lady was hurting her or because she was mad. I think it was both.

Then we left to meet with the ophthalmologist. Hannah sees 20/20, much better than her mother. The doctor said she has a cataract in one eye, courtesy of the radiation, but it was not large enough to cause any eye issues. She also has dry eye, slightly, another result of the radiation. The doctor said it could be causing her symptoms, possibly. Seems a bit far-fetched to me but we'll try eye drops just in case.

By this time, Hannah's eyes were dilated and she was done. We got home about 7pm. It reminded me of the days were used to go in early for chemo, and get home late. Long hours and bad food. The neurologist called just after we got in the door to say that she had already spoken with the EEG doctor and the eye doctor and wanted to be sure I knew the results! Now that is something! She had also spoken with oncology about setting up the appointment for the MRI and MRA.

We set Hannah's MRI/MRA for Nov. 26th, the Saturday after Thanksgiving. This Tuesday we are going to get the metal part of her braces removed. Most of the brackets are ceramic, but she has 4 that are metal plus the wires that have to come off for any MRI. Then, the Monday after the MRI/MRA she goes back to get everything back on. This didn't seem like such a big issue when her MRI's were only every 6 months. Well, not such a big deal, we just have to do it.

I asked the neurologist what her thoughts were about what this might be and she said she really didn't know at this point, so we have to rule out the obvious first. She also said she has kids that have these types of symptoms that have never had a brain tumor. I'm taking that as her way of telling me that it's not necessarily recurrence! You have to go with the positive!!

Thanks for your prayers and support, we'll let you know as we progress. Thanks also for your donations and gift cards, we received more in the mail this week! We are going to deliver the gift cards to the hospital on December 13th, when Hannah goes back to brain tumor clinic to follow up with the neurologist and oncology, so we have until then!!

♥Kim