Following the surgery, I have been taking a steroid called cortisone acetate which mimics the steroid cortisol which our bodies naturally produce. Often, following a pituitary tumour resection, a person's body is temporarily unable to produce the hormone which would stimulate cortisol production (I was recently told this is because the surgery is similar to peeling a grape so damage/disruption to the pituitary function is possible) so this steroid is necessary. Knowing this has not made being on this steroid any easier: I have been experiencing side effects of disrupted sleep, upset stomach, and anxiety attacks which I have never experienced so severely before (intense chest tightness and the sensation that I couldn't breathe). On top of all of this, my emotions were all over the map. I would go from being over the moon happy to unreasonably angry to devastatingly sad for no reason. I also found that I only wanted to focus on myself and literally not give a shit about anything or anyone else, but then feeling excruciatingly guilty and torn over this (only focusing on myself is not something I normally do). Between the surgery, not sleeping for two weeks after surgery, and my roller coaster emotions, I was exhausted.
Something else that came up after the first week was dizziness. This was occasionally a sense of lightheadedness when standing but I was also getting the sensation that the room was spinning and this would happen randomly regardless of me standing, sitting, or walking around. After speaking to the endocrine nurse and surgical nurse and neither one of them wanting to take responsibility for this, I decided it was time to go to a walk in. The surgical nurse did mention that I should be assessed for dehydration in case my fluid inputs and outputs were disrupted, but I was fairly certain that wasn't an issue.
After 5 hours of waiting, discussing my issues with a physician's assistant, getting bloodwork and an ECG done, I found out that all of my results were normal but I had fluid in my left ear which may contribute to my sense of imbalance. I suppose this could make sense since I had an ear infection a month before surgery and my throat and nose were so sore after surgery that my Eustachian tube could have become inflamed again.
The physician's assistant also went through how a surgery in the area of the pituitary gland can have ripple effects on the natural hormone productions which would explain the severe mood swings. He also discussed cortisone acetate as a steroid that provides a burst of adrenaline which could explain the tightness in my chest I was experiencing and why I wasn't sleeping at night (the instructions I had for taking the steroid were on tablet in the morning and half at bedtime). So I resigned myself to being an emotional, sleep deprived, anxiety ridden mess for awhile longer and took decongestants for the fluid in my ear.
This past Monday I had tests and an appointment with my endocrinologist. All of my hormone levels were tested - both the hormones produced by the pituitary gland and the ones that go on to be stimulated by these hormones - and then my cortisol levels were measured before and after an ACTH stimulation test to see if my body was producing adequate amounts on its own. I was told at this time by the endocrine nurse that many people need to be on cortisone acetate for the rest of their lives as this seems to be one of the most sensitive aspects of the gland. I was slightly upset that I was finding out about this way past the time I made the decision to go ahead with the surgery but tried to remain hopeful.
At the appointment with the endocrinologist I received a whole lot of good news. First, my cortisol levels and response to the stim test were adequate enough to allow me to slowly taper off of the steroid. The endocrinologist also mentioned that my second dose was actually supposed to be taken with my supper (I was given the incorrect info when discharged from the hospital) so, as frustrating as not knowing this for two weeks was, that alteration to the schedule should help me sleep at night.
The other good news was that my prolactin had come down by more than 50% and is now in a normal range and my estrogen levels had come up. These two things combined meant that my cycle should renormalize and my fertility should not be affected long term. I didn't think I would ever be so happy about the prospect of having my period again.
So with all that good news it has made my recovery feel like it's headed in the right direction. I am still having issues with anxiety and, in fact, ended up in the ER last night when a panic attack lasted five hours and I thought I was having a heart attack. I also almost freaked out when I had a nosebleed after using my nasal rinse. The way the endocrinologist put it when I mentioned my anxiety issues, surgery is a serious, traumatic event for a body and anxiety could definitely be an after shock of this situation, especially since it affects my natural cortisol production. I am going to try to ride this out and see if things improve after I am off the steroid completely. Rob and I now have a plan in place to try to manage my anxiety when the attacks occur and I have anti-anxiety medication I can take if I need to even though I would prefer not to. If this issue persists after the steroid is no longer a factor I will look into getting a counsellor because the physical manifestations of anxiety are no laughing matter and can severely affect my quality of life. I went years managing my anxiety on my own, but I can appreciate that this scenario is drastically different and sometimes asking for help is the best option.
A few highs of my recovery so far:
My dad giving me advice on how to get rid of my moustache if the steroid causes unwanted hair growth.
Seeing my niece and nephews (although this was also stressful due to crazy emotional me).
Spending time with my parents and receiving this beautiful book from my mom.
Training my parents' puppy with varying degrees of success.
Next time on the Priscilla Chronicles: follow ups with the ENT, neuro-ophthalmologist, endocrinologist, and neuro-surgeon to happen early May.
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