We met with Doctor Wilkinson from the House Ear Clinic today. He was going to give Satomi a quick exam and discuss the VNG test results with us.
I’ve been waiting for his expert opinion for months now.
Apparently the test results were mostly unremarkable. He basically repeated his previous diagnosis of last fall: The dizziness is likely due to damaged nerves from the tumor removal or radiation treatments. Expect the dizziness to improve on its own but it may be months or years.
I asked about the nystagmus.
He confirmed that the area of the brain which controls eye movement is very near that which controls her hearing and balance. The bi-directional movement is likely due to some cerebellum damage from the radiation treatments.
He instructed us to continue her Vestibular Therapy. Is that it? Yup, that’s it and I’m disappointed.
We’re looking into a Neuro-Opthalmologist to continue our search for solutions.
So I’m still diabetic and I still hate it. At least a couple of times a week, I forget to take my pills so you know that my subconscious still hasn’t accepted it as fact.
But I’m making pretty good progress. Since being diagnosed in November, I’ve lost 42 lbs (256lbs to 214lbs) and our Endocrinologist has cut my medication in half. My blood pressure is about 115/75 and my fasting blood sugar is well within the “normal” range. My cholesterol is also well within the “normal for diabetic” range.
My weight has plateaued for the past few weeks but I need to increase my physical activity. So far, the weight loss has been due to 99% diet changes. I want to get down to 190lbs.
My stress is still sucky but at least I fit my old clothes.
As you can imagine, I have stacks and stacks of paper everwhere: medical records, forms, bills, articles, all my engineering business stuff, tax records, blah, blah, blah.
Late last year I had the idea of going paperless in the deranged effort to clear some of this clutter and hopefully make important information more accessible.
To this end, a couple of weeks ago, I began scanning all of Satomi’s medical records. I work on it irregularly so I am only halfway done but it seems to be working. All of the documents are converted to searchable text using Optical Character Recognition (OCR) software as part of the scanning process.
Now that I am searching for any signs of nystagmus in her right gaze, all I need to do is enter “nystagmus” in the little box and hit Search.
The word was found seven times in five documents. I now know that in April of 2009, our Neurosurgeon noted a “nystagmus in both directions”.
This thing is just too cool.
The VNG test was on Friday. Prior to the test, Satomi couldn’t take any pain killers as they could interfere with the test results. I was worried about it but it went just fine. It was mostly “soreness” as she described it.
“Geez Satomi, maybe all your pain is just imaginary…”
She didn’t think it was funny either.
The premise for the test is that a nystagmus (involuntary, rapid, oscillatory eye movement) is inter-related with the vestibular system (balance and dizziness center of the inner ear). In essence, the test quantifies her dizziness by measuring the movement of her eyes. The movement was tracked using some helicopter pilot night vision goggle things-it was really cool.
It’s important to quantify the dizziness so future changes (hopefully improvements) can be compared. Otherwise, the comparison is completely subjective. I really wish we could have done this test before.
It began with Satomi sitting on a chair and a series of moving dots on the wall. Her head was moved in various positions and the test repeated. It also included a shake test. She then climbed up on the table (with only a little bit of help) and got into various positions. She looked straight ahead as she laid still in those positions. Finally, a device that would cool/heat each ear individually was used to directly stimulate the right/left vestibular system. It was a very unusual sensation and it made Satomi hugely dizzy. All-in-all, the tests took just over an hour and it went smoothly.
Before I talk about the results, keep in mind that this information is based solely on my informal discussions with the Audiologist and looking over her shoulder at the computer screen. They are crude at best and false at worst.
Both the Audiologist and I didn’t expect the results. Satomi has a horizontal nystagmus when she gazes to her left AND her right. Actually, the data showed that her right side was WEAKER.
With her hearing loss on her left side as well as her history of a left gaze nystagmus, the persistence of the left side issues were status quo. The nystagmus issues on her “good side” were surprising. The Audiologist actually made it a point to show it to us so that there was no question that the data was not mislabeled.
You all may recall back in early 2009 that a nystagmus in her left gaze was the primary trigger to finding the original brain tumor. I take these results very seriously.
I am worried.
While it is true that we have never had this test before so there is an obvious lack of comparison, I find the simple presence of a right nystagmus alarming. As I recall, there was no mention of a right nystagmus in past office evaluations. I’m going to review her medical files later today.
This morning (Monday) I have already contacted our Oncologist office to request a Pet-CT or Brain-MRI. Our last full-body Pet-CT was in November and was clear for cancer but it triggered all those Vertebroplasty session at the City of Hope. Our last Brain MRI was back in July of 2009. It’s about time she had another scan of some sort. I’m waiting for a call back.
We have an appointment with the House Ear Clinic doctor tomorrow (Tuesday) afternoon so we should get the official test results then.
Update 11:44am: After searching through Satomi’s medical records there was mention of a “nystagmus in both directions” in our Neurosurgeon’s Consult Note back in April 2009. A scan is still warranted but I’m a lot less worried now. See my post “Going Paperless” for more information.
We got a call this afternoon from our Urologist. The CT results were back.
The kidney stones had shrunken noticably with the antibiotics but a 5mm stone had become dislodged and entered her Ureter (I don’t remember which side). The doctor ordered a KUB X-ray to track it’s progress. I set the appointment for Monday afternoon.
For most people a stone of this size would be disablingly painful but Satomi barely even noticed. She just thought her lower back muscles were a bit sore.
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