The neurologist appointment - I've been slow to get this posted because I've been tired and wanted a few days to just do family things and recoup. Everyone is still in bed sleeping this morning so now is the perfect time to get the blog post done.
We made it to Moncton safely on Thursday at around 10:30. For some reason Roy thought the appointment was at 11 so when I asked "Should we go to Costco first?" I got a weird look lol.
Me - "Your appointment isn't until 1, we have a couple of hours."
Roy - "I thought the appointment was at 11. Are you sure?"
Me - "I have it written in my planner as 1 so unless you told me the wrong time it's 1."
Roy - "Well that must be the time..."
Dad - "You better call and make sure!" LOL
I called and confirmed our appointment was scheduled for 1 so we made a quick trip to Costco then dropped Dad and the kids off at the mall to do some back to school shopping while we found Dr. Harper's office. We ran into some construction so it's a good thing we left early.
We arrived 5 minutes before the appointment and I think we only waited 2 minutes before we got called in. Dr. Harper asked us to sit down and tell him what's been going on so we gave him the full history along with some family history. After that he performed a head to toe examination on Roy involving some hearing forks. He checked his reflexes and did a few balance type tests. After that we sat down at his desk where he loaded Roy's MRI on his computer screen and walked us through the entire scan so we could see for ourselves everything that was checked and how it all looks clear. I was really impressed that he did this and extremely thankful! Not that I fully understood everything we were seeing on the screen but I understood enough to know I wasn't seeing any growths. It's comforting to know that at least 3 professionals have looked at Roy's MRI now and found nothing wrong.
After reviewing the MRI Dr. Harper said he strongly believes this is a textbook case of Menieres disease. Some Menieres patients present with 2 or 3 symptoms...some even only 1 and Roy has all 4 symptoms. He has the tinnitus in his ear, he has the fullness, he has the vertigo and he experiences fluctuations with his hearing. He said he's not ruling out the possibility that the attacks COULD be caused by the brain but given his examination and the fact that Roy doesn't experience auras every time he has an attack, doesn't suffer any loss of feeling or numbness in his limbs - he feels that it's Menieres and not Migraine Associated Vertigo. If anything changes he said we're welcome to come back but he doesn't feel it would be necessary.
I brought up the fact that Dr. Campos said he doesn't feel like Roy is responding to medication the way he should be which led to an interesting conversation:
Dr - "What do you mean by that?"
Me - "Well...Dr. Campos said given the medication Roy is on he should be responding better"
Dr - "Well you could stop the medication and see what happens"
Me - "Roy tried that before and he started having attacks every single day"
Dr - "You have your answer then. It's just not the one that you want. He DOES respond to medication. It's just not the way you hope he would."
And that my friends - was the specialist hitting the nail on the head. Our expectations/hopes are that a medication will take all these attacks away from Roy and he pretty much told us this could be as good as it gets for a while. "I see patients suffering from seizures and just because I prescribe a medication that doesn't that patient won't ever have a seizure again." It sucks but I get what he was saying.
Anyhow, we go back to Dr. Campos tomorrow morning for 8:15 to discuss the appointment and do a 5th injection. Roy has been doing really well this weekend. He had a small episode the night we came back from Moncton and just last night he was feeling dizzy and is still resting it off right now. Overall though I do see an improvement with how he's doing. Perhaps the injections are helping? I don't want to jynx anything. Dr. Harper said we could explore the possibility of gentamycin injections to the middle ear which would attack the vestibular ear follicles but that comes with the potential risk of damaging hearing (reviews seem mixed from what we're reading). We'll have to see what Dr. Campos says tomorrow.
I'll write more about that appointment later!