You ugly cry in the bathroom of St. Boniface Hospital.
I have a lot to catch everyone up on.
Returning to a normal life after my surgery was difficult. I had lots of ups and downs. More downs than I cared to admit at the time. I made more trips to the ER in a month than I have in my entire life before. I couldn't eat anything more than a super bland, easy to digest diet for over a month, losing almost 20 lbs in that time. I couldn't sleep through the night for many months, and this hasn't fully improved so I'm still occasionally taking Gravol to knock me out (and help deal with the nausea I frequently experience). I also experienced panic attacks for the first time in my life.
Panic attacks are a strange thing. They manifest differently in every person who experience them. One thing many people commonly relay, though, is that worrying about having panic attacks often brings on panic attacks. This was true for me. Every new experience I had while returning to my regular life - going grocery shopping by myself, driving when I got the okay from the surgeon, going back to work - made me worry about having a panic attack and then I would have a panic attack.
My symptoms included a racing heart rate, dizziness and lightheadedness, hyperventilating, and the worst part: the belief that I was dying or going crazy. They happened so frequently that I was scared to leave the house and would basically go to work and go home. At work I needed to confide in my coworkers about what was going on so they would understand why I would suddenly start crying/freaking out/need to be on my own for awhile. I couldn't function like that. So I spoke to my physician about medication for anxiety and started going for counselling for my anxiety and panic issues.
My counselling has included dealing with a traumatic event (I had some emotional reactions to the anesthetic and fears of not waking up), getting my sleep cycle back on track, stress management, and learning to give myself permission to take the time to heal and "be normal" again.
I am sharing all of this information because I think it's important to be able to discuss (and feel comfortable bringing up) mental health issues. I am still taking medication and going for counselling and I am not ashamed of this.
July was the beginning of me feeling normal again. I began walking to work every day, started playing ultimate frisbee again (huge props to my team putting up with me learning to use my legs again-I had lost a lot of strength and they would give out without warning), and took up walking the dogs every day again. Exercise became my outlet for anxiety, my way of not fearing an increased heart rate, and my path to feeling like me.
I had an MRI August 8. I wasn't worried going into it because I felt great. I wasn't worried coming out of it because, again, I felt great. I received a report a couple weeks ago stating "new baseline, repeat MRI in one year." I was on top of the world. I felt great and only needing to repeat the MRI in one year meant everything was good.
In the last month I have had follow-ups with my neuro-ophthalmologist, ENT, and endocrinologist. Dr. Mansouri assured me my vision was fine and, in his opinion, my MRI looked normal. I see him again in November.
Dr. Meen shoved an endoscope up my nose and told me everything has healed really well. I have some inflammation on the left side, but he can't say if it's related to the surgery or not. He prescribed a steroid nasal spray and said I don't need to see him again unless I have issues and feel the need to make another appointment.
I saw Dr. Ludwig this past Tuesday and went in super optimistic. It has been almost six months since my surgery. I have been feeling great, have been able to eat normally, and have received great news up to this point.
This appointment was where a bomb was dropped on my world (and resulted in me crying in the bathroom). My prolactin is elevated again. It's not as high as it was before my surgery, but it's higher than the level it went down to after my surgery. Dr. Ludwig is not certain what this indicates. It could be due to medication or stress. Or it could be an indication that Priscilla is still alive and well (even if it's just in the form of microscopic cells).
Regardless, if my prolactin levels remain elevated, it may eventually stop my ovulation and affect my ability to have children. I need to have my hormone levels closely monitored and my endocrinologist has suggested that I am diligent about getting my MRIs as she is concerned the tumour may return. Having children is potentially going to turn into timing my pregnancies around my MRIs and taking medication to reduce my prolactin levels. I guess time will tell.
The most difficult part of this news has been feeling like I went through the surgery and all the complications afterwards for no reason. It is something I will need to come to terms with, but at the moment I am just going to give myself permission to be upset and take the time to process the news.
Friday, 23 September 2016
Thursday, 2 June 2016
Nasal Suctioning Is Seriously Unpleasant
I ended up having four follow-up appointments in the span of a week back in early May (I have been busy adjusting to going back to real life so my update is delayed). The first one was with the ENT. I didn't really know what to expect from this appointment. I assumed they would shove a camera up my nose again to see what was going on in my sinuses. I was not expecting what really happened. I was taken into a room where I sat in a chair and suddenly a woman who barely took the time to introduce herself as a resident had me inverted in this chair with a scope and suction tube up my nose to deal with the crusting going on up there. She did the majority of the work, but there was a section that I guess was being particularly difficult so she went to get Dr. Meen to deal with it. All the while I was laying there with tears pouring down my face (mostly an involuntary reaction to having all of this happening up my nose).
After Dr. Meen completed his work - which included clipping and cauterizing on top of suctioning - he looked down at me and realized I was not doing so well. Keep in mind that I hadn't eaten solid food in almost a week at this point due to my esophagitis and gastritis issues. Apparently I was very white. After they wrapped my neck and face with cold cloths, he asked if I was okay. Anybody who knows me would know that this is the worst thing you can ask when I am upset/hurt/traumatized. All I could do was start sobbing. At that point, Dr. Meen asked if the work they had done was really that bad and my mom had to explain to him that I had been having GI issues and hadn't eaten much all week. After I calmed down, we had a discussion about this and he suggested I mention it to my endocrinologist in case it was something related to my hormones and he hoped I felt better soon.
The next week, I saw the neuro-ophthalmogist (Dr. Mansouri), the endocrinologist (Dr. Ludwig), and the neuro-surgeon (Dr. Beiko) in one day. My appointments with Dr. Mansouri and Dr. Ludwig were pretty uneventful (Summed up as: Have I seen you before? Why did you decide to go ahead with the surgery? You're having some issues? Well your vision/hormones are fine so I guess we will see you again in a couple months). It is a relief that I am doing okay in those regards, however I felt quickly dismissed in both of those appointments.
My appointment with Dr. Beiko was the one where I received the most information. The pathology came back for the tumour and it is definitely a pituitary adenoma (aka benign) which had a small cluster of prolactinoma cells (which explained my slightly elevated prolactin levels). Apparently my adenoma was slightly more aggressive than a typical adenoma (damn-it Priscilla!). Dr. Beiko said that if a normal adenoma had a proliferation rate - or rate of cell division - of 8% then mine would have been 10% so there's a slightly greater chance of it coming back one day. Due to this, he recommended that if I want to have children, I should probably do that within the next couple of years because high prolactin levels can affect fertility and also because each time surgery/radiation is done (which will be my treatment options in the future), there's a chance my hormones will be affected.
Dr. Beiko also said that I never have to see him again unless Priscilla comes back. So fingers crossed that I'm done with her forever.
My next scheduled MRI is August 8 so we will have a better idea after that of how successful the surgery was. This will be the last update that I share on Facebook for awhile, so thank you so much to everyone who has continued to follow my story and wish me well. I appreciate it all.
After Dr. Meen completed his work - which included clipping and cauterizing on top of suctioning - he looked down at me and realized I was not doing so well. Keep in mind that I hadn't eaten solid food in almost a week at this point due to my esophagitis and gastritis issues. Apparently I was very white. After they wrapped my neck and face with cold cloths, he asked if I was okay. Anybody who knows me would know that this is the worst thing you can ask when I am upset/hurt/traumatized. All I could do was start sobbing. At that point, Dr. Meen asked if the work they had done was really that bad and my mom had to explain to him that I had been having GI issues and hadn't eaten much all week. After I calmed down, we had a discussion about this and he suggested I mention it to my endocrinologist in case it was something related to my hormones and he hoped I felt better soon.
The next week, I saw the neuro-ophthalmogist (Dr. Mansouri), the endocrinologist (Dr. Ludwig), and the neuro-surgeon (Dr. Beiko) in one day. My appointments with Dr. Mansouri and Dr. Ludwig were pretty uneventful (Summed up as: Have I seen you before? Why did you decide to go ahead with the surgery? You're having some issues? Well your vision/hormones are fine so I guess we will see you again in a couple months). It is a relief that I am doing okay in those regards, however I felt quickly dismissed in both of those appointments.
My appointment with Dr. Beiko was the one where I received the most information. The pathology came back for the tumour and it is definitely a pituitary adenoma (aka benign) which had a small cluster of prolactinoma cells (which explained my slightly elevated prolactin levels). Apparently my adenoma was slightly more aggressive than a typical adenoma (damn-it Priscilla!). Dr. Beiko said that if a normal adenoma had a proliferation rate - or rate of cell division - of 8% then mine would have been 10% so there's a slightly greater chance of it coming back one day. Due to this, he recommended that if I want to have children, I should probably do that within the next couple of years because high prolactin levels can affect fertility and also because each time surgery/radiation is done (which will be my treatment options in the future), there's a chance my hormones will be affected.
Dr. Beiko also said that I never have to see him again unless Priscilla comes back. So fingers crossed that I'm done with her forever.
My next scheduled MRI is August 8 so we will have a better idea after that of how successful the surgery was. This will be the last update that I share on Facebook for awhile, so thank you so much to everyone who has continued to follow my story and wish me well. I appreciate it all.
Saturday, 14 May 2016
When My "Anxiety" Ends Up Being Gastritis/Esophagitis (And Everyone Keeps Telling Me To Get My Anxiety Under Control)
I have had a month from hell. In my last update I was more than willing to accept that the chest pressure, shortness of breath, and feeling like my airways were closing in were simply symptoms of anxiety and was waiting to be off the cortisone acetate (which is what everyone was attributing the cause of my anxiety to). Well the day where I stopped the steroid came and went and, if anything, my "anxiety" was getting worse and happening more frequently.
I had made an appointment with my family doctor to discuss my anxiety issues as well as some GI issues that had popped up since my surgery (++bloating after eating anything, abdominal pain that would sometimes wake me up at night, constantly feeling like my abdomen was full, and major acid reflux despite being on Ranitidine), but it was going to take 2 weeks to get in to see him. So I waited for that appointment and all of my issues kept getting worse and worse. I started not wanting to eat because the bloating would get so severe I would look like I was 9 months pregnant and this was painful, would only be relieved by walking around yet would make my legs so weak I could barely stand up, and it made breathing very difficult.
Two days before my appointment with my family doctor, I tried to eat a supper of lukewarm, steamed vegetables (I had been feeling awful all day and this seemed to be all I could even consider eating). These soft, barely warm vegetables caused so much pain in my chest and abdomen, I thought I was going to vomit, pass out, or both. I tried drinking an antacid and it barely helped. I ended up staying awake all night with this pain which would not be relieved by anything and early the next morning I asked Rob to take me to the emergency room, again.
After explaining my situation, being assessed, and having some blood tests done to rule out liver and pancreatic issues, the diagnosis was that I had pretty severe gastritis and esophagitis that was likely caused by the steroid I had been taking (probably because I had been told to take it before bed and not with a full meal at supper time like I was supposed to). I was given a prescription for a stronger antacid to allow my stomach and esophagus some time to heal and sent home.
I went to my family physician the next day and explained everything that had been going on. The GI symptoms were worse that day and my shortness of breath was quite evident when I was in to see him. He said that it sounded like I have gastroparesis (which is where the stomach takes too long to empty) but that this is a rare condition usually caused by nerve damage. He ordered some more bloodwork to rule out H. Pylori bacteria and then filled in a requisition for a barium meal test (which is a series of upper GI x-rays) to see if there are any strictures or blockages in my esophagus and stomach. He is suspecting that I have a hiatal hernia (part of the stomach ends up in the thorax through the hiatus where the esophagus goes through the diaphragm) so he marks the rec as urgent. We discussed how the symptoms of gastritis and esophagitis could easily explain the "anxiety" symptoms that everyone else kept dismissing and then went over the types of food I should try to eat while my stomach and esophagus were healing. Then I went home.
The next morning I was nibbling on some saltine crackers when I started to feel some pressure in my abdomen which quickly turned into a stabbing pain and intense nausea. There was so much pressure I could barely take a breath. I tried to walk it off but it kept getting worse so I finally called Rob's mom to ask her to take me back to the hospital. At the hospital they hooked me up to an IV to give me anti-nauseants and fluids. My esophagus kept having spasms which was both painful and frightening. It also kept bringing what little stomach contents I had, including acid, into my throat. I had a chest x-Ray done to see if I had a large hernia (sometimes they are visible if they are big enough). After being at the hospital for several hours I started to feel better, but I knew that was just because I hadn't eaten anything for awhile. They couldn't find anything wrong with me so they decided to discharge me with an increase in my antacids, and the advice to figure out what my triggers are for acid reflux. They also told me that I needed to get my anxiety under control (I guess being emotional when I'm in pain is unacceptable). One nurse actually wrote down a website for counselling for anxiety and depression and told me she "highly recommended it" for me. I took it, but was slightly upset. I know I have anxiety but my physical symptoms were not just being caused by that.
The next week was rough. I could only handle fluids so was living off of boost (hind site: anything with dairy is not a good idea for my upset stomach), Gatorade, and chicken broth. Even those few things would often make me nauseous and achy. I lost 7 pounds on top of the 7 I had already lost since the surgery.
I have since been making a pretty good recovery in the past week. I started adding really soft, bland foods to my diet. I don't have any pain anymore and I rarely feel nauseous. I still can't eat very much at one time but I have been eating often and seem to be maintaining my weight now. I have also been sleeping well for the first time since my surgery, which is unfortunate since I'm sure my body could have used the rest well before now. I was supposed to return to work last week, but with everything going on I knew I had to give myself some time to heal and delayed my start date to next Wednesday.
My "urgent" barium swallow test has been scheduled for May 30 (it took my doctor's office three days to even fax the requisition) so we will see what comes of that in the near future.
Next time on the Priscilla Chronicles: follow up appointments with the ENT, neuro-ophthalmologist, endocrinologist, and neuro-surgery.
I had made an appointment with my family doctor to discuss my anxiety issues as well as some GI issues that had popped up since my surgery (++bloating after eating anything, abdominal pain that would sometimes wake me up at night, constantly feeling like my abdomen was full, and major acid reflux despite being on Ranitidine), but it was going to take 2 weeks to get in to see him. So I waited for that appointment and all of my issues kept getting worse and worse. I started not wanting to eat because the bloating would get so severe I would look like I was 9 months pregnant and this was painful, would only be relieved by walking around yet would make my legs so weak I could barely stand up, and it made breathing very difficult.
Two days before my appointment with my family doctor, I tried to eat a supper of lukewarm, steamed vegetables (I had been feeling awful all day and this seemed to be all I could even consider eating). These soft, barely warm vegetables caused so much pain in my chest and abdomen, I thought I was going to vomit, pass out, or both. I tried drinking an antacid and it barely helped. I ended up staying awake all night with this pain which would not be relieved by anything and early the next morning I asked Rob to take me to the emergency room, again.
After explaining my situation, being assessed, and having some blood tests done to rule out liver and pancreatic issues, the diagnosis was that I had pretty severe gastritis and esophagitis that was likely caused by the steroid I had been taking (probably because I had been told to take it before bed and not with a full meal at supper time like I was supposed to). I was given a prescription for a stronger antacid to allow my stomach and esophagus some time to heal and sent home.
I went to my family physician the next day and explained everything that had been going on. The GI symptoms were worse that day and my shortness of breath was quite evident when I was in to see him. He said that it sounded like I have gastroparesis (which is where the stomach takes too long to empty) but that this is a rare condition usually caused by nerve damage. He ordered some more bloodwork to rule out H. Pylori bacteria and then filled in a requisition for a barium meal test (which is a series of upper GI x-rays) to see if there are any strictures or blockages in my esophagus and stomach. He is suspecting that I have a hiatal hernia (part of the stomach ends up in the thorax through the hiatus where the esophagus goes through the diaphragm) so he marks the rec as urgent. We discussed how the symptoms of gastritis and esophagitis could easily explain the "anxiety" symptoms that everyone else kept dismissing and then went over the types of food I should try to eat while my stomach and esophagus were healing. Then I went home.
The next morning I was nibbling on some saltine crackers when I started to feel some pressure in my abdomen which quickly turned into a stabbing pain and intense nausea. There was so much pressure I could barely take a breath. I tried to walk it off but it kept getting worse so I finally called Rob's mom to ask her to take me back to the hospital. At the hospital they hooked me up to an IV to give me anti-nauseants and fluids. My esophagus kept having spasms which was both painful and frightening. It also kept bringing what little stomach contents I had, including acid, into my throat. I had a chest x-Ray done to see if I had a large hernia (sometimes they are visible if they are big enough). After being at the hospital for several hours I started to feel better, but I knew that was just because I hadn't eaten anything for awhile. They couldn't find anything wrong with me so they decided to discharge me with an increase in my antacids, and the advice to figure out what my triggers are for acid reflux. They also told me that I needed to get my anxiety under control (I guess being emotional when I'm in pain is unacceptable). One nurse actually wrote down a website for counselling for anxiety and depression and told me she "highly recommended it" for me. I took it, but was slightly upset. I know I have anxiety but my physical symptoms were not just being caused by that.
The next week was rough. I could only handle fluids so was living off of boost (hind site: anything with dairy is not a good idea for my upset stomach), Gatorade, and chicken broth. Even those few things would often make me nauseous and achy. I lost 7 pounds on top of the 7 I had already lost since the surgery.
I have since been making a pretty good recovery in the past week. I started adding really soft, bland foods to my diet. I don't have any pain anymore and I rarely feel nauseous. I still can't eat very much at one time but I have been eating often and seem to be maintaining my weight now. I have also been sleeping well for the first time since my surgery, which is unfortunate since I'm sure my body could have used the rest well before now. I was supposed to return to work last week, but with everything going on I knew I had to give myself some time to heal and delayed my start date to next Wednesday.
My "urgent" barium swallow test has been scheduled for May 30 (it took my doctor's office three days to even fax the requisition) so we will see what comes of that in the near future.
Next time on the Priscilla Chronicles: follow up appointments with the ENT, neuro-ophthalmologist, endocrinologist, and neuro-surgery.
Wednesday, 20 April 2016
The Ups and Downs of Recovery
So it has been almost three weeks since my surgery. The first week basically went how I thought it was going to: I couldn't breathe through my nose for the most part and when I did I could not smell anything. This also altered my sense of taste quite significantly which made eating anything a bit interesting (I couldn't taste garlic at all but salt and sweet flavours sort of made it through).
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.
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.
Sunday, 10 April 2016
Goodbye Pig Nose
I was under the impression that the nasal packing would be taken out the day after surgery (since all the papers I had gotten about the surgery stated this as a fact). However, when the doctors did their rounds Friday morning they said the packing would have to stay in until Sunday possibly. I did not like this news. The packing hurt, made it difficult to eat, and necessitated breathing through my mouth which I did not enjoy. I did remember the ENT resident telling me that in order to make sure things heal properly they had to make me really uncomfortable for a couple of days so I ended up accepting this. The staff did provide me with an oxygen mask that they added a mist to do that helped with the mouth breathing.
They did at least end up taking the catheter out on the Friday so I was able to get up and go to the bathroom myself. The downside was that I had to urinate in what the hospital staff called a "hat" because they still needed to measure my fluid inputs and outputs. Oh well, at least I wasn't measuring someone else's pee.
Saturday morning arrived and the neuro-surgical resident who had taken part in my surgery asked me if I was ready to get the packing out. I did not even hesitate. YES. Having that packing taken out was simultaneously the best and the worst feeling. It was excruciatingly painful and you do not even want to know what else came out with it (unless you are a disgusting human being in which case I do not want to talk to you). The instant relief of not having a foreign object jammed up as far as it would go in my nose was so satisfying though. Plus I could breathe through my nose for about two seconds before becoming congested.
Another part of my hospital stay that I did not enjoy was the heparin shots. These hurt. A lot. My nurses did not even sugar coat if, they just said that it would be painful. They are also necessary to prevent blood clots in patients after surgery since most people are not very active for the first little while. I tried to just breathe through them and not make a big deal out of it, it's not the nurses fault it feels like they're injecting acid into my body. I apparently impressed one of my night nurses by not making any noise because he told me he's had grown men cry when given that shot. What can I say, I'm a tough lady.
The rest of my hospital stay was pretty uneventful. I ended up being moved out of the step down unit into a room on the floor where I was not monitored as closely. I was encouraged to walk around more so I went for a journey to the cafeteria with some visitors that afternoon.
I did get a glimpse of the complications that could have occurred with my surgery while I was in the hospital. My roommate when I was moved to the ward had had the same procedure that I had except she ended up with a cerebral spinal fluid leak after surgery (this is a very real possibility when there's surgery that involves cutting open someone's skill). One way to manage a CSF leak is to insert a spinal drain and relieve the pressure that would cause the CSF to seep from the surgical opening. Unfortunately, this process can sometimes cause bacterial infections which is what happened to my roommate. She had bacterial meningitis and was being treated with intense anti-biotics for that which meant she had been in the hospital for 12 days. It made me feel guilty for recovering so well in contrast.
By Sunday morning, I was cleared to be discharged. I wasn't in much pain, I wasn't voiding too much urine, I didn't have CSF leaking out of my nose or down the back of my throat, my vision was fine, and I was feeling relatively OK (other than still not being able to breathe through my nose, the discharge from my nose. having the occasional headache, being tired, and feeling like someone had beaten me).
I have spent the past week out of the hospital at my parents' place in Ste. Rose because I'm not supposed to do anything too strenuous (no lifting anything more than 10 pounds and no housework) for two weeks. I feel like I make a lot of progress every day and anyone who doesn't know that I had surgery likely would assume there's nothing wrong with me right now. In fact, everyone keeps commenting on how good I look. This is nice but I almost wish I had an impressive scar to show what I went through eight days ago because it was still quite the ordeal. I guess I do have this one bruise to show off.
The issues I'm having now: fatigue (I think the steroids I'm taking are affecting my sleep patterns), breathing through my nose is difficult and hurts, occasional headaches. The healing of my nasal septum is uncomfortable and disgusting. There is a lot of "crusting" occurring that makes it difficult to breathe and also causes some tenderness. I have nasal sinus rinses that I now have to do three times a day and I hate them even though I know how necessary they are.
The next step for me is follow up appointments. I see an endocrinologist in a couple weeks to assess my hormone function as there is a chance that was affected by surgery. In about a month I will see the ENT, neuro-surgeon, and neuro-ophthalmologist and then I will get another MRI in three months. I'll keep the blog updated on those appointments as I go.
The support I have received from Rob (special shout out to the man who has taken all of this in stride and been there for me every step of the way, saying that as long as I am good he is good), my family, friends, coworkers, and even people who I haven't spoken to in years has been overwhelming to say the least. I am so thankful for all of it, especially people taking the time to read about my experiences and cheering me on.
I am so in love with all the amazing and thoughtful gifts I have received along the way. Here are some of them:
They did at least end up taking the catheter out on the Friday so I was able to get up and go to the bathroom myself. The downside was that I had to urinate in what the hospital staff called a "hat" because they still needed to measure my fluid inputs and outputs. Oh well, at least I wasn't measuring someone else's pee.
Saturday morning arrived and the neuro-surgical resident who had taken part in my surgery asked me if I was ready to get the packing out. I did not even hesitate. YES. Having that packing taken out was simultaneously the best and the worst feeling. It was excruciatingly painful and you do not even want to know what else came out with it (unless you are a disgusting human being in which case I do not want to talk to you). The instant relief of not having a foreign object jammed up as far as it would go in my nose was so satisfying though. Plus I could breathe through my nose for about two seconds before becoming congested.
Another part of my hospital stay that I did not enjoy was the heparin shots. These hurt. A lot. My nurses did not even sugar coat if, they just said that it would be painful. They are also necessary to prevent blood clots in patients after surgery since most people are not very active for the first little while. I tried to just breathe through them and not make a big deal out of it, it's not the nurses fault it feels like they're injecting acid into my body. I apparently impressed one of my night nurses by not making any noise because he told me he's had grown men cry when given that shot. What can I say, I'm a tough lady.
The rest of my hospital stay was pretty uneventful. I ended up being moved out of the step down unit into a room on the floor where I was not monitored as closely. I was encouraged to walk around more so I went for a journey to the cafeteria with some visitors that afternoon.
I did get a glimpse of the complications that could have occurred with my surgery while I was in the hospital. My roommate when I was moved to the ward had had the same procedure that I had except she ended up with a cerebral spinal fluid leak after surgery (this is a very real possibility when there's surgery that involves cutting open someone's skill). One way to manage a CSF leak is to insert a spinal drain and relieve the pressure that would cause the CSF to seep from the surgical opening. Unfortunately, this process can sometimes cause bacterial infections which is what happened to my roommate. She had bacterial meningitis and was being treated with intense anti-biotics for that which meant she had been in the hospital for 12 days. It made me feel guilty for recovering so well in contrast.
By Sunday morning, I was cleared to be discharged. I wasn't in much pain, I wasn't voiding too much urine, I didn't have CSF leaking out of my nose or down the back of my throat, my vision was fine, and I was feeling relatively OK (other than still not being able to breathe through my nose, the discharge from my nose. having the occasional headache, being tired, and feeling like someone had beaten me).
I have spent the past week out of the hospital at my parents' place in Ste. Rose because I'm not supposed to do anything too strenuous (no lifting anything more than 10 pounds and no housework) for two weeks. I feel like I make a lot of progress every day and anyone who doesn't know that I had surgery likely would assume there's nothing wrong with me right now. In fact, everyone keeps commenting on how good I look. This is nice but I almost wish I had an impressive scar to show what I went through eight days ago because it was still quite the ordeal. I guess I do have this one bruise to show off.
The issues I'm having now: fatigue (I think the steroids I'm taking are affecting my sleep patterns), breathing through my nose is difficult and hurts, occasional headaches. The healing of my nasal septum is uncomfortable and disgusting. There is a lot of "crusting" occurring that makes it difficult to breathe and also causes some tenderness. I have nasal sinus rinses that I now have to do three times a day and I hate them even though I know how necessary they are.
The next step for me is follow up appointments. I see an endocrinologist in a couple weeks to assess my hormone function as there is a chance that was affected by surgery. In about a month I will see the ENT, neuro-surgeon, and neuro-ophthalmologist and then I will get another MRI in three months. I'll keep the blog updated on those appointments as I go.
The support I have received from Rob (special shout out to the man who has taken all of this in stride and been there for me every step of the way, saying that as long as I am good he is good), my family, friends, coworkers, and even people who I haven't spoken to in years has been overwhelming to say the least. I am so thankful for all of it, especially people taking the time to read about my experiences and cheering me on.
I am so in love with all the amazing and thoughtful gifts I have received along the way. Here are some of them:
Tuesday, 5 April 2016
Hospital Food, Pig Nose, and Lack of Sleep: The Worst Parts of Recovery
Recovering from surgery is a weird process. Coming out of the anesthesia is probably one of the oddest sensations I have ever experienced and is something I hope to never have to experience again. That being said, recovery hasn't all been bad. Here's a list of the ups, downs, and in betweens.
1. Apparently when I'm coming out of general anesthetic, I think I am freaking hilarious. I came up with the title of my last blog post (Ding Dong the Bitch is Dead) during that time. I also made lots of jokes about feeling like I was insanely attractive in that moment. This is the selfie I decided to send a bunch of people to show off just how beautiful I am immediately after surgery:
2. My nephew, Lucas, is the truly hilarious one in my family. When he saw the above photo, he asked if it was from picking my nose and how would I have done that without Rob seeing it happen? He then said that if Rob would have seen me picking my nose, he would have said, "Aunty Breanne, that's gross" and I would have stopped.
3. The only pain I really felt right after surgery was a sore throat and nose (not sure if this was explained but the surgery to remove my tumour was up through my nasal cavities/sinuses). I assumed I was on great pain meds but apparently my IV was just hooked up to antibiotics and saline. If I ever had a headache I was given Tylenol.
4. Without the crazy gauze covering my nose, I really only looked like I had been beaten up and had a swollen nose. When someone showed me a picture of what I looked like, I said "I look like a pig. Hah!" Also, laughing with mega packing up your nose is hard and I don't recommend it.
5. My throat is still sore and my uvula is swollen to a crazy degree (I constantly feel like I have something in my throat). This is apparently normal due to the intubation done during surgery but it's still an awful feeling and I can't wait until my uvula is a normal size again. With this pain, it made eating in general difficult, especially the same day as surgery. When they brought my supper that evening, I couldn't quite believe what they expected me to eat. Potato wedges, mystery meat, and blueberries did not go over too well. Thank goodness my mom went and bought me some jello.
1. Apparently when I'm coming out of general anesthetic, I think I am freaking hilarious. I came up with the title of my last blog post (Ding Dong the Bitch is Dead) during that time. I also made lots of jokes about feeling like I was insanely attractive in that moment. This is the selfie I decided to send a bunch of people to show off just how beautiful I am immediately after surgery:
3. The only pain I really felt right after surgery was a sore throat and nose (not sure if this was explained but the surgery to remove my tumour was up through my nasal cavities/sinuses). I assumed I was on great pain meds but apparently my IV was just hooked up to antibiotics and saline. If I ever had a headache I was given Tylenol.
4. Without the crazy gauze covering my nose, I really only looked like I had been beaten up and had a swollen nose. When someone showed me a picture of what I looked like, I said "I look like a pig. Hah!" Also, laughing with mega packing up your nose is hard and I don't recommend it.
6. Waking up with three IVs, a catheter, and crazy stockings that get hooked up to a machine that rhythmically expands the stockings to help my circulation is disconcerting. I have come to hate needles so having three IVs (plus one more puncture wound where they tried to get one started) was probably the worst part.
7. Not sleeping after surgery is awful. My first night in the hospital, I could not fall asleep. I had one neighbour who screamed all night because he was in so much pain and another one who yelled at the nurse every hour for pain meds (even though they were giving it to him as often as they could). Between that and being woken up the few times I did drift off to do tests, I think I maybe got three hours of sleep that night. Then the doctors and residents came around to do rounds at 7 AM and I was sent for a CT scan at 8:30. It made for an exhausting beginning to my recovery.
8. My neuro-surgeon came to visit me the first morning after my surgery to see how I was feeling and to reiterate at that point that the surgery was very successful. He also mentioned that the CT scan I had had that morning showed no residual tumour, which was above and beyond what I was expecting from all of this. I did not think they could get all of it because of all the critical structures (arteries and nerves) in that area.
I'm going to end this post on that very positive note. Dr. Beiko did mention that an MRI would be a better imaging modality to see the brain tissues but I will only be getting that done approximately 3 months after surgery. I am still super excited and positive about the results and reassurances from the surgeon, however.
Next time on the Priscilla Chronicles: the removal of the nasal packing was simultaneously the worst and best part of recovery and heparin shots hurt like a son of a gun.
Sunday, 3 April 2016
Ding, Dong, the B**ch is Dead
Well, scheduled surgery number two started out a lot like scheduled surgery number one. I arrived at HSC at 5:45 AM with my family, we checked in with admitting and then were brought up to the surgical prep area. I donned my wonderfully attractive gowns, compression socks, and booties and was basically at the same point I made it to last time. The nurse attempted to find a viable vein for my IV to be put into, but my veins were not cooperating this time around. The nurse said she would leave it to the anesthesia nurse just so they had something they could work with. Then, much to my surprise since I was really half expecting surgery to be cancelled again, someone came to get me to take me to the pre-op area. In that area I met the anesthesiologist, the anesthesia nurse, one of the surgical residents who would be taking part in my surgery, and then I was left alone for a short while.
Suddenly, another nurse approached and introduced herself as the charge nurse for the OR. She mentioned that the hospital's network was down so they were not able to access my MRI or CT scan so my surgery was going to be delayed until the network issue was resolved. Apparently my surgery was the only one at that time that required diagnostic imaging as all the other patients gradually got rolled in to their respective ORs and I was left alone.
After about half an hour, Dr. Meen, the ENT came out and asked if I was starting to feel like they were cancelling on me again. I mentioned that it was starting to feel very familiar and he reassured me that the network was in the process of being fixed and they would be taking me in shortly.
In the meantime I had the anesthesia nurse searching for Rob to notify him that the surgery was delayed just so they wouldn't all be thinking that I had been taken in at 7:30. She returned to the pre-op area with Rob just after yet another nurse came to get me ready to take into the OR. This nurse jokingly told us that he could close his eyes if I wanted to give Rob a big smooch.
So, an hour behind schedule, I was finally brought into the OR. There were several people in the room but I had started to lose track of who everyone was at this point. They had me shimmy over to the operating table, covered me in some warm blankets, started explaining everything that I would experience prior to falling asleep, and how I would feel when I was in the post op area. Then they put a mask over my face, instructed me to take some deep breaths, and the last thing I remember was a sharp pain as the anesthetic went into my arm and saying "Ouch, that's unpleasant."
The next thing I recall was someone asking me if I was feeling any pain. All I could really feel was an intense pain in my nose (which I found out after was from all the packing they had shoved up there). I was apparently shaking pretty badly so they covered me in warm blankets and gave me some anti-anxiety medication through one of my IVs. They had given me two extra IVs plus a catheter while I was asleep in the OR so I had tubes coming out of everywhere.
The next two hours were spent in the recovery room. It went by fairly quickly to me despite being asked the same questions over and over and over again...What is your name? Where are we right now? What's the date? Can you squeeze my hands as hard as you can? Lift your arms, close your eyes and hold them there. Lift your legs one as a time and hold them there. Resist against me pushing on your feet. Just stare at my nose while I shine this flashlight in your eyes...
My neuro-surgeon, Dr. Beiko, came to visit me at this time to see how I was feeling and to tell me that the surgery was very successful. He gave me a chance to ask any questions but I was still in a state where it was all I could do to remember what the damn date was so any questions I had for him were not present in my brain.
Once I was deemed stable enough, I was taken to the step-down unit where they could continue to monitor my blood pressure (I was at 150/80 when my resting BP is usually around 110/70 ish) and keep a close eye on my urine output. This might seem like a strange thing, but the pituitary gland produces something called anti-diuretic hormone and sometimes even just performing surgery close to the pituitary gland can cause a temporary or permanent imbalance in ADH. Basically someone's body would not be able to determine the best fluid balances and too much urine would be produced in conjunction with an extreme thirst, yet they would still be dehydrated.
This is turning into a much longer post than anticipated, so I will end this here and continue the next part about my road to recovery. Part One: Hospital Food and Pig Noses are the Worst (complete with photos!)
Thanks to everyone for following my journey so far.
Suddenly, another nurse approached and introduced herself as the charge nurse for the OR. She mentioned that the hospital's network was down so they were not able to access my MRI or CT scan so my surgery was going to be delayed until the network issue was resolved. Apparently my surgery was the only one at that time that required diagnostic imaging as all the other patients gradually got rolled in to their respective ORs and I was left alone.
After about half an hour, Dr. Meen, the ENT came out and asked if I was starting to feel like they were cancelling on me again. I mentioned that it was starting to feel very familiar and he reassured me that the network was in the process of being fixed and they would be taking me in shortly.
In the meantime I had the anesthesia nurse searching for Rob to notify him that the surgery was delayed just so they wouldn't all be thinking that I had been taken in at 7:30. She returned to the pre-op area with Rob just after yet another nurse came to get me ready to take into the OR. This nurse jokingly told us that he could close his eyes if I wanted to give Rob a big smooch.
So, an hour behind schedule, I was finally brought into the OR. There were several people in the room but I had started to lose track of who everyone was at this point. They had me shimmy over to the operating table, covered me in some warm blankets, started explaining everything that I would experience prior to falling asleep, and how I would feel when I was in the post op area. Then they put a mask over my face, instructed me to take some deep breaths, and the last thing I remember was a sharp pain as the anesthetic went into my arm and saying "Ouch, that's unpleasant."
The next thing I recall was someone asking me if I was feeling any pain. All I could really feel was an intense pain in my nose (which I found out after was from all the packing they had shoved up there). I was apparently shaking pretty badly so they covered me in warm blankets and gave me some anti-anxiety medication through one of my IVs. They had given me two extra IVs plus a catheter while I was asleep in the OR so I had tubes coming out of everywhere.
The next two hours were spent in the recovery room. It went by fairly quickly to me despite being asked the same questions over and over and over again...What is your name? Where are we right now? What's the date? Can you squeeze my hands as hard as you can? Lift your arms, close your eyes and hold them there. Lift your legs one as a time and hold them there. Resist against me pushing on your feet. Just stare at my nose while I shine this flashlight in your eyes...
My neuro-surgeon, Dr. Beiko, came to visit me at this time to see how I was feeling and to tell me that the surgery was very successful. He gave me a chance to ask any questions but I was still in a state where it was all I could do to remember what the damn date was so any questions I had for him were not present in my brain.
Once I was deemed stable enough, I was taken to the step-down unit where they could continue to monitor my blood pressure (I was at 150/80 when my resting BP is usually around 110/70 ish) and keep a close eye on my urine output. This might seem like a strange thing, but the pituitary gland produces something called anti-diuretic hormone and sometimes even just performing surgery close to the pituitary gland can cause a temporary or permanent imbalance in ADH. Basically someone's body would not be able to determine the best fluid balances and too much urine would be produced in conjunction with an extreme thirst, yet they would still be dehydrated.
This is turning into a much longer post than anticipated, so I will end this here and continue the next part about my road to recovery. Part One: Hospital Food and Pig Noses are the Worst (complete with photos!)
Thanks to everyone for following my journey so far.
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