Back to Basics

First off, an update on my last post...I had my appointment with the neurosurgeon last Friday, and it went fine. He said that all of my symptoms were, in fact, due to my Chiari Malformation and that we had two options in regards to treatment. First, we could consider surgery (an option I wasn't a huge fan of due to the extensive recovery required), or we could simply wait and see if my symptoms got better. He was thinking that the vascular changes during the pregnancy and postpartum period may be causing more congestion in the craniocervical area and further compressing my cerebellum and spinal cord. In theory, then, once my body returns to "normal" at the end of the postpartum period (around a year after birth), my symptoms might be alleviated...fingers crossed!

Oh, and the T2 hyperintensity mentioned on my MRI report? He called it a UBO--Unidentified Bright Object! Thankfully, he said that I didn't have any symptoms of MS or any other neurological disorder, so he said for all intents and purposes we could consider it a fluke. He'll probably order another MRI in January to make sure that's the case, but I was satisfied with his explanation.

My next appointment with the NS to re-evaluate the situation is at the end of November. It seems like I've felt slightly better since the weather has cooled down a bit, but some days are still very difficult. Since I'm still breastfeeding, he couldn't give me anything for my dizziness or neck weakness, but he did say that massage might help. I haven't had a chance to call the one we have in town, but it's on my (never-ending) to-do list. He also said it was fine for me to start running again--I had stopped when all of this started because I was afraid of passing out. As long as I start slow and wait until it's a little cooler, the NS thought I would be fine.

Now that we've established that my symptoms are due to Chiari, maybe I can get a better handle on my blood sugar numbers again. I've been running higher than normal in order to (almost) eliminate the possibility of a low causing my sudden dizzy spells. Of course, with the way I've been feeling it's still hard to tell, so I've been testing A LOT more often...as in around 20 times/day instead of 10 or less. Not so budget-friendly, by the way--I've had to order a couple hundred extra test strips out of pocket in the past two months just to have a big enough supply. Thank goodness for Amazon!

My last official A1c was 5.5%, but I'm betting that my next one will be quite a bit higher. I'm hoping, though, that I can get things back on track and get my numbers back into the normal range where I like them.

To that effect, I decided to re-configure my basal/bolus rates for my pump. Of course, there are various methods and opinions on how to go about this, but I decided that it couldn't hurt to start back at the basics and work from there. It goes without saying (at least I think) that I'm not here to provide medical advice. As always, YMMV...what works for me may not work for you, and vice versa.

For the past week, I've used an average of 26 units/day, with 59% going to basal. It seems like it's best for me to have around 60% of my TDD as basal and the other 40% as bolus, but anywhere between the 50/50 and 60/40 range works fine. Given that my numbers are at least 20% higher than I'd like, I decided to increase my TDD to 31u/day (19% above what I'd been using). So:

31*0.60=18.6u total basal
18.6/24hrs=0.775u/hr basal rate

Since I'm still in the experimental mode for the time being, I decided to make that 0.75u/hr for simplicity's sake--which would mean 0.75u/hr*24hrs=18u total basal (58% of TDD)

I haven't had only one basal rate since I started using my pump, but I figure that you have to start somewhere! With the new rate, I can watch for patterns in my numbers and then adjust my rate accordingly.

Currently, I've been having a lot of correction boluses for highs...entirely too many for my liking. Since I've established that, I decided it wouldn't hurt to tweak my carb ratio too. Going on the 450/TDD=carbohydrate-to-insulin ratio (CIR) formula, that means my calculated ratio is 14.5grams/unit, rounded to 14. My pump was already set to a carb ratio of 15:1, but I've been dialing down the estimates a lot due to my recent fear of lows. Note to self: Stop. Trust the Bolus Wizard.

My nifty cartoon of how I envision the Bolus Wizard on the Medtronic Pump...

Next, Insulin Sensitivity Factor (or Correction Factor) is calculated by dividing anywhere from 1500 to 1800 by the TDD. The higher the top number, the more conservative the correction factor:

1800/31=58
1500/31=48

Since my previous ISF was set at 57, I decided to pick a number halfway between (53) until I know how it's all going to work. Hopefully I won't have to use it as often with my new settings!

Now I guess it's just a matter of testing, reviewing patterns, and adjusting everything accordingly. If everything goes well, I'm hoping that I can be back in the normal (or at least closer to normal) range before long!

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 bit...off 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!