Zipperversary and Recovery Update

With all the commotion I forgot to mention that Saturday was my 1 year zipperversary! The Chiari decompression surgery leaves a scar on the back of your head/neck that resembles a zipper, so for this reason the anniversary of your surgery is called your "zipperversary". So much has happened in the past year that I am incredibly thankful for. I have had 3 surgeries (wrist, port placement, and craniocervical instability), 4 new diagnoses (POTS, EDS, hypothyroidism, and CCI-craniocervical instability), and the start of appropriate treatment for many of my conditions. I have come so far in terms of my health in the past year and it just keeps looking better and better! I still have a few issues that are going unaddressed and some doctor I need to see, but in general I am much more stable than I was at this time last year!

Today was a little bit more difficult for me in terms of my recovery from craniocervical fusion. I woke up twice over night to take medications and there is a lot more pressure in my head today. This makes sense since many of the nerves that were cut and/or numbed during the surgery are starting to come back as the medications wear off. I also got very low on pain medications which I did not anticipate. I have more pain pills at home, but I am still in NY so that doesn't really do me a whole lot of good. I called my PCP, but she wouldn't fill it. I then tried my surgeon, but I guess they are not allowed to call it in because it is a controlled substance. Well after some conversation with insurance and my neurosurgeon's office we got a 5 day supply of pain medications called in to the local walgreens to last me until I get back home in a few days.

The bruises on my hands are still pretty bad, particularly the one on my right palm. I am not 100% sure what all of these bruises are from. Some are from IVs, some are from arterial lines (a line into an artery which can by used for blood draws and blood pressure monitoring), and I am guessing the rest are from the monitoring during the surgery. I have 2 puncture wounds in each palm, so I am guessing this was from a monitor they had to use for either motor or sensory function of my limbs. I am using the all natural cream I mentioned in the last blog post and that has seemed to be helping. The bruises on my stomach from where they injected the blood thinner (heparin) are also pretty sore.

A few of my steri-strips on my incision fell off today and the incision looks really good. I will post another picture of my incision once the other steri-strips fall off. I also got a really neat pillow from the hospital that has been helping a lot. It is purple with a triangular hole in the middle and raised sides. It supports my head, but does not put pressure on my neck. It is not comfortable to use while sitting up, but it is very helpful lying down!

I sent an email to my neurologist asking him a couple of questions. I want him to order a pump for my IV medications so that I can set the rate that I want the fluids to go at. My insurance said they will cover this as long as he prescribed it. I also asked if he had a recommendation for an endocrinologist for my under active thyroid that we just found. The last thing I asked him was if he thought that my rapid heart rate would come down on its own from the surgery or if I could up the medication that lowers my heart rate. I am thinking I might not hear back from him until after the holiday, however.  

The home infusion company is going to send a month worth of supplies for the day that we get back, so it will be nice not to have to reorder those so often. I am going to be getting 20 bags of fluids so we will have to find a place to store them all! My home nurse will come the day we get home as well, which will be nice because she can check my incision as well.

Please pray for safe travels back home and a happy holidays! I will update after Christmas some time :)