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pennie_dreadful) wrote2016-04-19 03:32 pm
pennie_dreadful) wrote2016-04-19 03:32 pm
If you ever find out you need a thyroidectomy, or any other type of surgery for that matter...
So here it is, almost a year later that I'm finally posting about this. I'm doing this for others who find out they have thyroid problems similar to mine, or for people who have found out they need to have surgery for the first time, and take to google to find out more about it. Because that's what I did, and a lot of what I found...was not reassuring. People tend to only post their horror stories, and okay, my situation was not one hundred percent smooth sailing. But like a lot of things, the anticipation is worse than the actual thing we're scared of. Keep in mind this is my personal experience, everyone's body is different, etcetera etcetera.
Background: I used to be really fat, but last year I lost a lot of weight. I distinctly recall feeling rather miffed that I went down a bra size before I lost the double chin. Well, there was a reason for that. One particular evening I was trying on some new clothes and noticed an odd swelling in my neck that was only visible if I turned to the side. My first thought was that I must have a swollen lymph node. I didn't worry about it much. Until it didn't go away...if anything it was getting bigger. So I googled it, and diagnosed myself with a goiter. It occured to me that this was probably the reason I got out of breath so quickly when I exercised, and google confirmed (lol, "confirmed") that suspicion. I tried dealing with it myself. I started using iodized salt instead of kosher, and because I have a family history of autoimmune disorders, I went on this diet that's even crazier and more strict than Paleo (The Autoimmune Protocol) when I found out I have a cousin with Hashimoto's (which Google told me is the main cause of goiters in the Western world.) Now, obviously that was not the smartest thing to do, but I was uninsured at the time. Also I am a litle bit scared of doctors and hospitals. Always have been, and I don't recall a specific incident that triggered it, just that doctor's appointments were always a source of anxiety for me.
Clearly however, none of that worked, so I resolved that when open enrollment for Obamacare started, I would sign up and finally go to the doctor. By the time that happened, the goiter was big enough to see from the front. Or at least I could tell. I still had a lot of fat around my face so people didn't notice it unless I pointed it out.
I was officially diagnosed with a multinodular goiter in April of 2015. Suprisingly, my thyroid was still functioning normally. I first had a physical exam, where my GP felt my neck. Then I had an ultrasound of my neck, and then was refered to an ear, nose and throat specialist. The ENT reviewed the results of the ultrasound, did another physical exam, and sent me for a CT scan. When I met with him again to go over those results, he told me I would need a total thyroidectomy, sooner the better. I asked him if it could wait until the fall, when work was less busy. He told me that if I waited much longer, my thyroid would have compressed my trachea to the point where I couldn't be intibated for the surgery, and if that happened, he would have to refer me to a specialist in Atlanta. So less than three weeks later, I was scheduled for surgery.
YIKES
In retrospect that was probably for the best, because I only had three or four panic attacks, but if I'd had three or four months to get good and worked up about it? Yeah, no.
So, the surgery itself? Not a big deal. I checked in for the surgery, sat in the waiting room for a bit. Then I was taken to the area where people are prepped for surgery. If you're a woman they have to give you a pregnancy test, so make sure to save a little pee for that. Then they gave me a hospital gown and a cap, and a bag to put my belongings in. A nurse came by to check my blood pressure and blood oxygen, and to put in an IV. That, I'm not gonna lie, was not fun. I'm not scared of needles, but the one they use for IVs is bigger and it does hurt worse than a regular one. Also, you can still sort of...feel it, once it's in. It didn't hurt, it just felt weird when I made a fist. Oh, and they put on these special compression socks to prevent blood clots.
After that they let my dad come back and sit with me until it was Time. The anastheasiologist and some techs came by to ask me some questions. They asked me if I had to use the bathroom again, I said no, and then they asked if I wanted a catheter. I was...not enthusiastic about the idea. But he said that even though my bladder was empty right then, I would be getting IV fluids throughout the surgery, and I would definitely have to pee afterward, and that it would not be a good idea for me to try and get up to use the bathroom so soon afterwards. So I told him to do it (not realizing they would wait until I was already under anastheasia to put it in and take it back out). Then they wheeled me back to the OR, put the mask doohickey over my face, and the next thing I knew, I was hearing a nurse say "She's got some blood in her hair". I asked if it was over, and was told it was. Then, I became extremely nauseous. I told the nurse I felt like I was going to throw up, and she handed me a basin. I can't be too sure, but I think I was actually moaning and writhing a little. I also remember hearing another nurse saying to give me phenergren and zofran, and that worked. Then I was taken out of recovery to my regular hostital room. The way there, the nurse told me to try to keep my eyes open in case I got nauseous again. That was SO HARD. Anastheasia is no joke.
My parents were already waiting for me in the room, and another nurse brought me some ginger ale in case I got nauseous again. Then the floor nurse introduced himself, and wrapped these things that look like giant blood pressure cuffs around my legs. Every so often they would start squeezing my legs--not hard, and it wasn't painful so much as annoying. Then we were left alone for a while. Then visiting hours were over and I was by myself.
I was too tired to think or do anything. I just kind of dozed for a while. But eventually, I had to pee. And I really wished I still had that catheter. I called the nurse's station and told them I had to go the bathroom, and my nurse and a tech came and helped me. I needed help sitting up, because of the general lingering "blah" feeling from the anastheasia but also because trying to move my upper body put a lot of stress on the incision. And then, with both of them holding my hands, I made it to the toilet. And I peed. And I peed. And I peed. Those IV fluids really do a number on the bladder. And I was very glad I was doing this five or six hours after the surgery, and not immediately after, so: don't get freaked out about the catheter.
I made it back to bed, and that's where my experience becomes distinctly my own. Because I am apparently one of those special people who has an atypical reaction to narcotics. (I was on hydrocodone fyi.)The nurse didn't put the cuffs back on my legs, but it felt like he did. I felt like something was squeezing my legs at regular intervals, even though I checked that the cuffs were definitely not on. Then I began to feel like there was a heavy weight on my legs. Like someone was actually pushing me into the bed. I was not creeped out by this at all, why do you ask?
Anyway, by that morning at about six am, a tech came in, checked my vitals, drew some blood, and gave me my first dose of levothyroxine. Then I got breakfast (chicken broth, a sugar free popsicle and sugar free sherbet, because I was on a liquid diet, ugh). Then a student nurse came by. She helped me get up, go to the bathroom again, and I managed to walk around the nurse's station a couple times. Then she helped me brush my teeth and wash my hair with this shower cap--looking thing that had shampoo in it that didn't need to be rinsed. That felt very good, I was basically getting a scalp massage. I felt much, much better after that. I still had some pain from the incision, but not much, as long as I kept still. Later that morning, the surgeon's nurse practitioner came by and took the bandage off--I was wearing this special bandage that looked a little bit like a neck brace to keep me from looking down or turning my head and tearing the incision. When my dad saw me he told me I looked like I had lost a lot more weight. My sister in Savannah saw a picture of me and said I didn't even look like the same person. I disagreed when I saw myself in the mirror, but then later I did a before and after photo comparison, and...whoa. We really are our own worst critics. Anyway! She also told me my blood calcium level had barely dropped at all, everything else looked fine and I was to be discharged later that day.
(A note about calcium: if you are having a thyroidectomy, your doctor has likely already told you about the possibility of your calcium levels dropping after the surgery, and that you may need to take a calcium supplement afterward. DEFINITELY GO AHEAD AND TAKE CALCIUM ANYWAY, EVEN IF THEY TELL YOU YOUR CALCIUM LEVEL IS NORMAL.)
So, I was sent home to recuperate. My sister stayed with me to help me around the house. I still needed help getting out of bed/chairs. But other than that I felt okay. I was up and moving around, making myself tea. But later that night the weird pressure feeling I had in my legs came back, but it had moved up my body until it felt like there were hands touching my head. In fact it felt just like the student nurse was washing my hair again, except creepy. Then it felt like someone had their hands on either side of my head and were squeezing as hard as they could. That was a lingering effect of the hydrocodone. What was not a lingering effect of the hydrocodone was the tingling/almost pins and needles sensation in my face. That was a symptom of my calcium levels getting low. Then the next day I had a major case of brain fog. Again, I thought the hydrocodone was still messing with me. But nope. My calcium levels were still dropping. And unlike the day before, I felt tired and weak. But I didn't think anything of it.
Fortunately, my mom stopped by that afternoon to check on me and bring me sherbet. While she was there, I started slurring my speech, and the pressure/tingling just kept getting worse. Then I started thinking, okay, this is maybe something serious. So my mom and sister took me to the ER.
Once I was out in the heat, the symptoms got much worse. The pressure/tingling intensified, I needed help just walking from the car to the ER, my face was getting more paralyzed. It was not fun. It was so bad that I needed my mom to help me get a urine sample. Then when they tried to draw some blood...then I started violently trembling. My mom had to hold my arm still for the nurse to get the IV in, then the muscles in my face went from semi paralyzed to locked up. I couldn't open my eyes, I could barely open my mouth enough to talk. I had a panic attack right then, needless to say. My mom talked me down, and I got my breathing under control. I remember telling everyone that I wasn't shaking because I was having a panic attack, I was having a panic attack because I couldn't stop shaking. (Not only because of that, obviously, but I'd had all I could take at that point.)
Guess what the bloodwork revealed.
Hypocalcemia! (And hypomagnesemia--low magnesium. Because I am a special snowflake.) So take some damn calcium after your thyoidectomy even if your calcium level is good immediately following the surgery. It would also have been nice if at any point the symptoms of hypocalcemia were described to me, so I could have at least known what was happening and got to the hospital sooner. For the record, they are: tingling in the face and fingers, lethargy, confusion, muscle weakness and muscle spasms. And for you to actually have those symptoms, then it's dangerously low and you definitely need to go to the hospital.
It took me a while to bounce back after that little incident. The general feeling of weakness persisted for about a week. I had no energy, I just felt like crap. Of course, on top of trying to recover from everything, I was on a too low dose of levothyroxine, which certainly didn't help. It took about two months after the surgery, when I finally got in to see my endocrinologist and got my dosage adjusted, for me to feel normal again. But, the thing for those of us with total thyroidectomies? Once you figure out the right dose of medication, as long as your weight doesn't fluctuate wildly, you're good. Every time I see my endo, she tells me my hormone levels are all normal. So, yes, it's going to suck a little bit. Especially those few weeks immediately after, because hey, you're missing an important internal organ and your body isn't sure what to make of this synthetic stuff you're giving it instead. But, it will all go back to normal eventually.
Background: I used to be really fat, but last year I lost a lot of weight. I distinctly recall feeling rather miffed that I went down a bra size before I lost the double chin. Well, there was a reason for that. One particular evening I was trying on some new clothes and noticed an odd swelling in my neck that was only visible if I turned to the side. My first thought was that I must have a swollen lymph node. I didn't worry about it much. Until it didn't go away...if anything it was getting bigger. So I googled it, and diagnosed myself with a goiter. It occured to me that this was probably the reason I got out of breath so quickly when I exercised, and google confirmed (lol, "confirmed") that suspicion. I tried dealing with it myself. I started using iodized salt instead of kosher, and because I have a family history of autoimmune disorders, I went on this diet that's even crazier and more strict than Paleo (The Autoimmune Protocol) when I found out I have a cousin with Hashimoto's (which Google told me is the main cause of goiters in the Western world.) Now, obviously that was not the smartest thing to do, but I was uninsured at the time. Also I am a litle bit scared of doctors and hospitals. Always have been, and I don't recall a specific incident that triggered it, just that doctor's appointments were always a source of anxiety for me.
Clearly however, none of that worked, so I resolved that when open enrollment for Obamacare started, I would sign up and finally go to the doctor. By the time that happened, the goiter was big enough to see from the front. Or at least I could tell. I still had a lot of fat around my face so people didn't notice it unless I pointed it out.
I was officially diagnosed with a multinodular goiter in April of 2015. Suprisingly, my thyroid was still functioning normally. I first had a physical exam, where my GP felt my neck. Then I had an ultrasound of my neck, and then was refered to an ear, nose and throat specialist. The ENT reviewed the results of the ultrasound, did another physical exam, and sent me for a CT scan. When I met with him again to go over those results, he told me I would need a total thyroidectomy, sooner the better. I asked him if it could wait until the fall, when work was less busy. He told me that if I waited much longer, my thyroid would have compressed my trachea to the point where I couldn't be intibated for the surgery, and if that happened, he would have to refer me to a specialist in Atlanta. So less than three weeks later, I was scheduled for surgery.
YIKES
In retrospect that was probably for the best, because I only had three or four panic attacks, but if I'd had three or four months to get good and worked up about it? Yeah, no.
So, the surgery itself? Not a big deal. I checked in for the surgery, sat in the waiting room for a bit. Then I was taken to the area where people are prepped for surgery. If you're a woman they have to give you a pregnancy test, so make sure to save a little pee for that. Then they gave me a hospital gown and a cap, and a bag to put my belongings in. A nurse came by to check my blood pressure and blood oxygen, and to put in an IV. That, I'm not gonna lie, was not fun. I'm not scared of needles, but the one they use for IVs is bigger and it does hurt worse than a regular one. Also, you can still sort of...feel it, once it's in. It didn't hurt, it just felt weird when I made a fist. Oh, and they put on these special compression socks to prevent blood clots.
After that they let my dad come back and sit with me until it was Time. The anastheasiologist and some techs came by to ask me some questions. They asked me if I had to use the bathroom again, I said no, and then they asked if I wanted a catheter. I was...not enthusiastic about the idea. But he said that even though my bladder was empty right then, I would be getting IV fluids throughout the surgery, and I would definitely have to pee afterward, and that it would not be a good idea for me to try and get up to use the bathroom so soon afterwards. So I told him to do it (not realizing they would wait until I was already under anastheasia to put it in and take it back out). Then they wheeled me back to the OR, put the mask doohickey over my face, and the next thing I knew, I was hearing a nurse say "She's got some blood in her hair". I asked if it was over, and was told it was. Then, I became extremely nauseous. I told the nurse I felt like I was going to throw up, and she handed me a basin. I can't be too sure, but I think I was actually moaning and writhing a little. I also remember hearing another nurse saying to give me phenergren and zofran, and that worked. Then I was taken out of recovery to my regular hostital room. The way there, the nurse told me to try to keep my eyes open in case I got nauseous again. That was SO HARD. Anastheasia is no joke.
My parents were already waiting for me in the room, and another nurse brought me some ginger ale in case I got nauseous again. Then the floor nurse introduced himself, and wrapped these things that look like giant blood pressure cuffs around my legs. Every so often they would start squeezing my legs--not hard, and it wasn't painful so much as annoying. Then we were left alone for a while. Then visiting hours were over and I was by myself.
I was too tired to think or do anything. I just kind of dozed for a while. But eventually, I had to pee. And I really wished I still had that catheter. I called the nurse's station and told them I had to go the bathroom, and my nurse and a tech came and helped me. I needed help sitting up, because of the general lingering "blah" feeling from the anastheasia but also because trying to move my upper body put a lot of stress on the incision. And then, with both of them holding my hands, I made it to the toilet. And I peed. And I peed. And I peed. Those IV fluids really do a number on the bladder. And I was very glad I was doing this five or six hours after the surgery, and not immediately after, so: don't get freaked out about the catheter.
I made it back to bed, and that's where my experience becomes distinctly my own. Because I am apparently one of those special people who has an atypical reaction to narcotics. (I was on hydrocodone fyi.)The nurse didn't put the cuffs back on my legs, but it felt like he did. I felt like something was squeezing my legs at regular intervals, even though I checked that the cuffs were definitely not on. Then I began to feel like there was a heavy weight on my legs. Like someone was actually pushing me into the bed. I was not creeped out by this at all, why do you ask?
Anyway, by that morning at about six am, a tech came in, checked my vitals, drew some blood, and gave me my first dose of levothyroxine. Then I got breakfast (chicken broth, a sugar free popsicle and sugar free sherbet, because I was on a liquid diet, ugh). Then a student nurse came by. She helped me get up, go to the bathroom again, and I managed to walk around the nurse's station a couple times. Then she helped me brush my teeth and wash my hair with this shower cap--looking thing that had shampoo in it that didn't need to be rinsed. That felt very good, I was basically getting a scalp massage. I felt much, much better after that. I still had some pain from the incision, but not much, as long as I kept still. Later that morning, the surgeon's nurse practitioner came by and took the bandage off--I was wearing this special bandage that looked a little bit like a neck brace to keep me from looking down or turning my head and tearing the incision. When my dad saw me he told me I looked like I had lost a lot more weight. My sister in Savannah saw a picture of me and said I didn't even look like the same person. I disagreed when I saw myself in the mirror, but then later I did a before and after photo comparison, and...whoa. We really are our own worst critics. Anyway! She also told me my blood calcium level had barely dropped at all, everything else looked fine and I was to be discharged later that day.
(A note about calcium: if you are having a thyroidectomy, your doctor has likely already told you about the possibility of your calcium levels dropping after the surgery, and that you may need to take a calcium supplement afterward. DEFINITELY GO AHEAD AND TAKE CALCIUM ANYWAY, EVEN IF THEY TELL YOU YOUR CALCIUM LEVEL IS NORMAL.)
So, I was sent home to recuperate. My sister stayed with me to help me around the house. I still needed help getting out of bed/chairs. But other than that I felt okay. I was up and moving around, making myself tea. But later that night the weird pressure feeling I had in my legs came back, but it had moved up my body until it felt like there were hands touching my head. In fact it felt just like the student nurse was washing my hair again, except creepy. Then it felt like someone had their hands on either side of my head and were squeezing as hard as they could. That was a lingering effect of the hydrocodone. What was not a lingering effect of the hydrocodone was the tingling/almost pins and needles sensation in my face. That was a symptom of my calcium levels getting low. Then the next day I had a major case of brain fog. Again, I thought the hydrocodone was still messing with me. But nope. My calcium levels were still dropping. And unlike the day before, I felt tired and weak. But I didn't think anything of it.
Fortunately, my mom stopped by that afternoon to check on me and bring me sherbet. While she was there, I started slurring my speech, and the pressure/tingling just kept getting worse. Then I started thinking, okay, this is maybe something serious. So my mom and sister took me to the ER.
Once I was out in the heat, the symptoms got much worse. The pressure/tingling intensified, I needed help just walking from the car to the ER, my face was getting more paralyzed. It was not fun. It was so bad that I needed my mom to help me get a urine sample. Then when they tried to draw some blood...then I started violently trembling. My mom had to hold my arm still for the nurse to get the IV in, then the muscles in my face went from semi paralyzed to locked up. I couldn't open my eyes, I could barely open my mouth enough to talk. I had a panic attack right then, needless to say. My mom talked me down, and I got my breathing under control. I remember telling everyone that I wasn't shaking because I was having a panic attack, I was having a panic attack because I couldn't stop shaking. (Not only because of that, obviously, but I'd had all I could take at that point.)
Guess what the bloodwork revealed.
Hypocalcemia! (And hypomagnesemia--low magnesium. Because I am a special snowflake.) So take some damn calcium after your thyoidectomy even if your calcium level is good immediately following the surgery. It would also have been nice if at any point the symptoms of hypocalcemia were described to me, so I could have at least known what was happening and got to the hospital sooner. For the record, they are: tingling in the face and fingers, lethargy, confusion, muscle weakness and muscle spasms. And for you to actually have those symptoms, then it's dangerously low and you definitely need to go to the hospital.
It took me a while to bounce back after that little incident. The general feeling of weakness persisted for about a week. I had no energy, I just felt like crap. Of course, on top of trying to recover from everything, I was on a too low dose of levothyroxine, which certainly didn't help. It took about two months after the surgery, when I finally got in to see my endocrinologist and got my dosage adjusted, for me to feel normal again. But, the thing for those of us with total thyroidectomies? Once you figure out the right dose of medication, as long as your weight doesn't fluctuate wildly, you're good. Every time I see my endo, she tells me my hormone levels are all normal. So, yes, it's going to suck a little bit. Especially those few weeks immediately after, because hey, you're missing an important internal organ and your body isn't sure what to make of this synthetic stuff you're giving it instead. But, it will all go back to normal eventually.