1 week post-op today! I decided to make this blog public because I do not want to bore everyone with the same updates over and over (I could talk about this stuff for days) but want to keep anyone who wants to know informed. So, here it goes!
Surgery was last Wednesday, the 16th. All signs pointed to pituitary Cushing's, so the plan was to remove the suspected tumor from the right side of my pituitary gland. This is done by going through my nose. It is a 3 hour surgery and most people spend just 1 night in the hospital. Some people have referred to it as the "Drive-Thru" version of brain surgery. The actual operation went well, I was moved up to a floor by Wednesday night, and had a few issues. My sodium levels were off, which led to peeing every 30 minutes for almost 36 hours after surgery! Thankfully, they fixed that problem with some anti-diuretic so I could get some sleep. I also had some fluid leakage, which they thought might be cerebral spinal fluid (CSF leaks are the most common complication from this type of surgery), so I had to stay an extra night to make sure they didn't have to go back in to fix the leak. They didn't, so I went home on Friday afternoon.
Things since Friday have been ok, I've been sleeping a lot and going to the hospital for lab work.
My first cortisol test after surgery was NOT good. Normal people range from 5-50. Before I had surgery, mine was in the 100-150 range. The first test after surgery, my cortisol level was 389. This was very discouraging paired with the neurosurgeons uncertainty about the tissue he removed. Thankfully, we got the next test back - and my cortisol level had dropped to 4! That looks much more promising and in line with a cure. I will be continuing to test over the next few weeks to make sure we keep getting those low numbers.
Symptom-wise, I can definitely tell something is different. I seem less puffy (no more leg swelling!) and people have commented that my face looks thinner already. I have lost 10 lbs so far (all while laying on the couch)! I am tired all the time, and take naps throughout the day. This will get better over the next week or so, then get worse again when they drop my steroid dose. I am NOT looking forward to starting that process, but I am looking forward to 6-12 months from now when I won't need them anymore!
I am still very congested but today was a major milestone - it was the first day I was allowed to (gently) blow my nose! It was a little scary at first, but you will never know how much you miss that luxury until someone digs around in your nose and sinus cavity then tells you to leave all that junk in there for a week. Oversharing, I know, I'll stop.
Thanks for all the cards, flowers, e-mails, phone calls, visits, everything! I am so thankful I have so many people who care about me and my health! Merry Christmas!
Surgery was last Wednesday, the 16th. All signs pointed to pituitary Cushing's, so the plan was to remove the suspected tumor from the right side of my pituitary gland. This is done by going through my nose. It is a 3 hour surgery and most people spend just 1 night in the hospital. Some people have referred to it as the "Drive-Thru" version of brain surgery. The actual operation went well, I was moved up to a floor by Wednesday night, and had a few issues. My sodium levels were off, which led to peeing every 30 minutes for almost 36 hours after surgery! Thankfully, they fixed that problem with some anti-diuretic so I could get some sleep. I also had some fluid leakage, which they thought might be cerebral spinal fluid (CSF leaks are the most common complication from this type of surgery), so I had to stay an extra night to make sure they didn't have to go back in to fix the leak. They didn't, so I went home on Friday afternoon.
Things since Friday have been ok, I've been sleeping a lot and going to the hospital for lab work.
My first cortisol test after surgery was NOT good. Normal people range from 5-50. Before I had surgery, mine was in the 100-150 range. The first test after surgery, my cortisol level was 389. This was very discouraging paired with the neurosurgeons uncertainty about the tissue he removed. Thankfully, we got the next test back - and my cortisol level had dropped to 4! That looks much more promising and in line with a cure. I will be continuing to test over the next few weeks to make sure we keep getting those low numbers.
Symptom-wise, I can definitely tell something is different. I seem less puffy (no more leg swelling!) and people have commented that my face looks thinner already. I have lost 10 lbs so far (all while laying on the couch)! I am tired all the time, and take naps throughout the day. This will get better over the next week or so, then get worse again when they drop my steroid dose. I am NOT looking forward to starting that process, but I am looking forward to 6-12 months from now when I won't need them anymore!
I am still very congested but today was a major milestone - it was the first day I was allowed to (gently) blow my nose! It was a little scary at first, but you will never know how much you miss that luxury until someone digs around in your nose and sinus cavity then tells you to leave all that junk in there for a week. Oversharing, I know, I'll stop.
Thanks for all the cards, flowers, e-mails, phone calls, visits, everything! I am so thankful I have so many people who care about me and my health! Merry Christmas!
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