Monday, August 13, 2012

I'm Just A Little "Off" In The Head...

It's been almost a month since my last post, and I have to say it's been an eventful one...and not in a good way. Things have been better on the D-front since I changed my basal rates, but my average is still running higher than I'd like. I'm ready to have my numbers closer to normal again, but first I have to get some other health-related stuff taken care of. Until then, I've had to keep my numbers up to avoid lows so that I have one less thing to worry about and so that factor is (almost) eliminated while I continue to feel "off".

About a month and a half ago, I wrote about an experience I had while I was doing some shopping at Target.  At the time, I thought it was another bad low; later, I attributed it to sinus pressure. However, since then things have just spiraled downward and I've realized that this time at least, diabetes isn't the cause of my problems.

What I believe is causing my dizziness and near-fainting episodes is a condition I was diagnosed with six years ago called a Chiari I Malformation. It's pretty rare (0.1-0.5% prevalence rate), so the fact that I have it and T1D (0.001 to 0.02%) further reinforces the fact that I'm a statistical anomaly (that's a 0.0001-0.01% chance of having both, by the way...yes, I'm a nerd). According to the National Institute of Neurological Disorders and Stroke:
Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. 
That pretty much sums it up. I've had all of those problems lately (and more), and it isn't fun. The problem is, the symptoms that Chiari causes can also mimic a lot of other diseases, so you have to first rule everything else out before you can attribute problems to CM. A while after I was first diagnosed, my symptoms basically disappeared for another few years and then resurfaced while I was in college. I had another MRI then, and it was confirmed that all that was there was the CM.  Once again, I was asymptomatic until this June, when it hit me like a ton of bricks. I had an MRI done on July 25th (the day after my 24th birthday), and aside from the Chiari, this is what my results said: 
There is increased T2 signal in the sulci of both posterior cerebral hemispheres in the flair sequence of indeterminate clinical significance. Consider obtaining lumbar puncture with analysis of CSF versus CT head to exclude blood products. This can also be seen with proteinaceous material as well. There is no abnormal enhancement in the corresponding sulci with IV contrast administration.
At first, all that came up on Google regarding the T2 hyperintensity was MS. However, after some more digging, I've found that it can also be caused by abnormal blood/oxygen flow...and since it's confined to the back of my head, I'm going to go with the assumption that it's Chiari-related. I'm scheduled to see a neurosurgeon on August 24th, and that appointment can't get here fast enough. Much to my dismay, the only treatment for CM is decompression surgery where they go in and remove part of your skull to create more room and fix the overcrowding issue. It's either that or the "wait and see" approach in which symptoms and MRIs are observed on a regular basis; however, sometimes, the nerve damage caused by CM can become permanent the longer you wait to fix it.

I know I'm jumping the gun by assuming all this is caused by Chiari and that I may very well have to have surgery; however, I'd rather know what I'm up against ahead of time so I can prepare for it. I've been reading up more on Chiari itself as well as on its statistics, surgery, and outcomes so that hopefully I can be an informed patient when I see the NS.

My mom also has CM, but I haven't met many more people with it until recently. The daughter of a friend I know through the JDRF had decompression surgery this morning, and another JDRF board member went through it in the past. When I posted something about it on Facebook, my junior high basketball coach/history teacher told me he had the surgery in January and has been doing great since. Incidentally, both he and the girl who had surgery this morning see the same NS that I'll be going to see. I asked around before scheduling an appointment because this is one of those situations where you definitely want the best, and I've heard great things about this particular doctor.

The concept of brain surgery (even though it's a relatively simple one) freaks me out. Not only that, but I have an almost-seven-month-old to take care of, and aside from a little outside help, I'm in charge of 90% of her care 24/7. Decompression surgery takes several months to completely heal from (in the ideal situation), and I'd definitely be down (literally) for at least a couple of weeks before I'd be able to do much of anything. The idea of not being able to take care of my daughter is worse than anything else, because I can't imagine missing out on that time; however, as someone pointed out to me the other day, I have to take care of myself in order to be able to take care of her.

Right now, I have a hard time doing the simplest things, from just making it through the work day (my neck feels like it can't support my head by the afternoon) to putting cereal in my baby girl's bottles (my fine motor functions are a lately). I even have trouble recalling words, which is completely out of character for me. I also frequently suffer from muscle weakness in my arms and sometimes my legs, and often feel like I'm in a mental fog or having an almost out-of-body feeling. Most days, I'm reluctant to drive further than work and back because of the dizziness. I hate going anywhere by myself because I'm afraid of the passing-out feeling that I get several times a week now. It has also been difficult to lose those last few (15) pregnancy pounds because I haven't been able to return to running due to the same fear.

Clearly this is adversely affecting my life, and at this point, I'm thinking that if the NS thinks things would improve with surgery, I would seriously consider it. Here's to hoping the next couple of weeks go by quickly so I can get some answers!


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