|My MRI image from June 2015: The almost circle |
like portion of the cerebellum near the occipital
bone should be above, not below, the skull.
Saturday, November 21, 2015
I haven’t written in… months. I had that hypoglycemia incident in, what? May? And haven’t had the energy, the ambition or the give a dang to write about the h-e-double hockey sticks this summer and fall have been. But seeing as writing about the here and now would be completely out of context, I guess it’s about time that I sum up the medical turmoil the family has faced since June.
At the beginning of the summer, I finally got around to identifying a general practitioner that HB and I are comfortable working with and feel we can trust. Having spent the last four years relying on specialists and the occasional trip to urgent care, we’ve been lacking a general continuity of care for all medical issues non-chronic and/or life threatening. So finally getting around to scheduling a physical, I squeezed an appointment onto the calendar between the end of GW’s school year and the start of my summer programming in Vermont for my master’s degree.
Explaining that I’d experienced an unexplainable (aka not blood sugar related) fall over Memorial Day weekend, the doctor ran several tests to establish a baseline of care, including a MRI to rule out Multiple Sclerosis. Feeling fairly confident that the MRI would be lesion free, I began to mentally prepare myself to get word that I’ve developed Celiacs Disease or Hashimotos Disease or some other diabetes-knock-on illness that is likely for type ones. So when the phone eventually rang, I took the news with relative detachment:
“Your lab results are all clear and your MRI showed no signs of MS,” he began. “However, it does show a borderline Chiari type 1 Malformation.”
“Oh, okay,” I responded.
Shocked that I not only knew what Chiari is, but how to pronounce it (kee-AH-ree), he helped me quickly set up follow up testing to learn the extent of my condition. Now, for those unfamiliar with this, Chiari is a brain malformation that occurs for any number of reasons but essentially boils down a too big brain in a too small of a skull with a portion of the brain known as the cerebellar tonsils being displaced into your spinal canal. This pressure and crowding of your brain can cause things like neck pain, numbness, dizziness, balance issues and a number of other generic symptoms that are easy to misdiagnose which, in my case, is likely why we never caught it before.
So following that first brain MRI, we crammed three more MRIs into the next week and scheduled a consultation with a neurosurgeon at the Johns Hopkins Medical Center in Baltimore for immediately after my return from Vermont in August. Feeling comfortable that my 5 mm profusion hadn’t caused problems in my life thus far, HB and I decided continuing on with life as if it were normal was the only reasonable thing to do - so off the three kids, my Mother and I went for six weeks of study and play in the Green Mountains.
Well, just days into our time in Vermont, things started to go south. Electing to take the summer off of school and just enjoy the children and the scenery for the blessings they are, I went up to campus to talk with the program director about withdrawing from my scheduled classes. And that’s when it started… I remember walking into the meeting and sitting across from this woman I’m quite comfortable with and floundering with my responses to her reasonably straight forward questions. I’d think of an answer and by the time my brain told my mouth what to say, it was gone… and then I was gone. The next four hours are snap shot images of my surroundings but otherwise they aren’t there. I don’t remember leaving the meeting … I know I got into my car to drive home but couldn’t figure out how to buckle my seatbelt or where to put the keys (thank God my Mom was with me) … I don’t remember picking the kids up from summer camp … I remember GW and GV eating yogurt at the table and wondering whose kids they were … I remember my Mom saying “you’re scaring me” when I refused to have anything to do with the baby … but none of that flowed in any context… None of it made sense… It just wasn’t me.
Toward the end of that time frame, the phone rang and I was vaguely aware of my Mom talking on the phone with someone about going to the hospital. Moving around me with a sense of purpose, my Mom handed me the phone as she began putting things into bag and shoes onto the kids.
“How’d your meeting go?” The voice on the phone asked. It was HB.
“I don’t know,” I replied.
“What do you mean ‘you don’t know?’ Did you see the director?”
“I don’t know.”
“Put your Mom back on the phone,” he instructed.
Within moments she had hung up and was shooing the four of us kids, grand and otherwise, out into the car. Slowly gaining awareness of what was happening around me, I sent a friend a few concerned, jumbled text messages as we pulled into the rural hospital’s ER parking lot. By the time we’d completed registration, triage and I was sitting on a gurney in front of the ER’s trauma doctor I was 100% back in control of my faculties and thoroughly freaked by the situation.
Being a small, local facility this particular hospital, unfortunately, sees more broken bones from ski accidents than they do complex neurological cases so the doctor was completely baffled as to what he should do. Calling over to the Dartmouth University Hospital, he was given general instructions to discharge me and send me to see them the following week. Not comfortable doing absolutely nothing, he ran a head CT to attempt to rule out a stroke, but without concrete evidence he eventually did as the Dartmouth neurologist instructed and we departed.
You can imagine how uncomfortable we all were. I mean, here I am with a new Chiari diagnosis and I’m coming out of a complete altered personality/blackout phase where I didn’t recognize my own children, the doctors are throwing around words like stroke/seizure/TIA, my husband is several states away, my Mom is caring for multiple scared children and I am just supposed to follow up next week? I don’t think so. Within the next two days, HB flew up to Vermont, helped us pack the house and drove us back to Virginia where immediate appointments waited for me at our new GP’s office and with the specialists at Johns Hopkins (yes, they made time for me on short turn around - seriously impressive!).
So over the course of July and August we ran tests on my nervous system, my cardiovascular system and circulation system to see if we could pin point what exactly happened. Determining that my Chiari was not responsible for the altered mental state and was not significant enough to worry about let alone warrant surgical treatment, the doctors biopsied four thyroid nodules that we found on the MRI (non-malignant, thank God), they measured the calcification in my carotid artery to see if second hand smoke may be to blame (more than the average person, but within age appropriate limits, so non-applicable), they ran EMGs and EEGs to track my nerve-muscle communication and brain wave function (all normal) and Lord knows how many blood tests. By late August, I’d begun to feel like a human pincushion. But, fortunately, I started to get solid answers from one doctor in particular at Hopkins who analyzed my symptoms, my medical history and my frequent headaches and concluded that I am suffering from complex migraines.
Stating that complex migraines differ from the common understanding of a migraine as a horrifically bad headache, the doctor explained that what I have can cause speech disturbances, motor impairments, significant confusion, visual interruptions, muscular weakness, nausea and any number of additional symptoms that none of us want to endure and I have been struggling with. Arguing that this condition is more concerning to him than Chiari due to the concomitant accidents complex migraines can cause - again, thank God my Mom was there to drive my car!! - he decided that getting them under control through the prescription medication is a top priority. So at three months into treatment with venlafaxine, things are looking promising. I have had “moderate” headaches, but none have been severe enough to warrant intervention or caused significant impairments (knock on wood). The doctor has high hopes that he’ll be able to further reduce my symptoms with a higher dose of this medication once I stop nursing next year, but that remains to be seen.
I guess, at this point, I am feeling comfortable and confident enough about the care I am receiving to write about it and face the future with more certainty than I did back in June. Back then I was terrified about the idea of brain surgery or the effect a serious stroke would have on my ability to take care of my children, or the obligation it’d place on them to take care of me, but way somehow opened and things don’t seem quite as dire as they did. Obviously I am still nervous about the worst possibilities my body could have in store, but I’m alive and more or less healthy, the kids and HB are alive and more or less healthy so what more can I really ask for? God delivered and, for that, I am truly grateful.
I know I’ve missed a lot of details in summing up this medical roller coaster in a singular post and, kids forgive me, I’ve lost so many sweet, blog worthy family moments in the noise of it all, but that’s where we’re at and what we have to cope with. Starting again is always painful - in writing, in running, in whatever - so the bandaid is off and here we go again.
See you soon. xx