Laryngeal nerve damage

I haven't said much about laryngeal nerve damage so I'll focus on that now. I have recordings of my voice after surgery but I couldn't figure out how to post it on Blogger so I'm sorry to say that you won't get the multimedia experience. My voice sounded like it was hard to get a whisper out (it was). Thankfully, about 5 weeks after surgery, my voice is completely back to normal. If this happens to you, I would recommend resting your voice as much as possible. Try not do anything that will get you out of breath because your breathing is also affected. Don't strain yourself either, I should not have gone on a mountain bike ride two weeks after surgery because I felt like I was having an asthma attack. My breathing (very shallow) seemed to be worse after that and I think my voice got a little worse too. About a month after surgery, I had body work and my friend (a therapeutic massage therapist) focused on my diaphragm which she could tell was very tight on the right side (the side that the nerve was damaged). After she worked on me, It seemed like by breathing and voice started to get better. Body work focuses on muscles and my problem was a damaged nerve but maybe the muscles near or around the nerve started to let go after she worked on me. Also, my husband went on a work trip so I didn't talk as much at the end of a day when my voice was tired so.. 1. Time - it takes more time than you would want for it to get better. 2. Strenuous Exercise - no! - Don't do anything that will make you breath very hard 3. Rest - seriously, do rest the voice 4. Have someone work on your diaphragm - I laid down on the ground and my friend put her hands on my diaphram and had me take deep breaths in and out while she had her weight on me. I really do think that it made a difference for the better. 5. I believed that my damage was permanent so I was very scared but it was not. Trust that it will probably get better.

The Good News

My Hashimotos symptoms should be much better once my entire thyroid is removed. I asked, “even if I am taking thyroid meds?” and found out that the antibodies are attacking the thyroid tissue, not the hormones. So when my thyroid is totally gone, those symptoms should go away. That is such great news. I didn’t ask if I could eat cake again but I am pretty sure the answer is yes. In fact, since I found out that I’ll be taking out the rest of my thyroid, I have ordered pizza twice and I had a chocolate chip cookie – all gluten-full. I figure, my thyroid is already super sick and sticky so what’s another few slices of pizza and a delicious cookie? It will all be gone within the next 2 months. Will I be able to enjoy Dipsea pancakes again??

We Need to Talk About Your Pathology Part 2

2 weeks after surgery, I had an appointment with the surgeons and I had a huge list of questions about when my voice would be better and a few questions about when I could start running or riding my bike again. Which brings us to the “we need to talk about your pathology” that Dr Campbell said. I could not believe that I had cancer. I never thought for one moment that I would have it. Of course I knew that the reason we had surgery was because that was a danger but I really did not think that I would have it. I just thought that we were taking it out before it turned into cancer. Dr Gosnell and Dr Campbell asked if I had any questions and I had already asked all of my prepared questions which were about my voice and working out. I had not prepared any questions about cancer so I finally asked “uh, what’s it called?” Papillary Cancer, I learned. And, “uh, is there some place that I can read up on Papillary Cancer?” Thyca.org, I learned. And then there was the practical: we won’t do the next phase of surgery to remove the left side of your thyroid until your laryngeal nerve is healed. And we will test your thyroid function in a few weeks to figure out if you need to be on low-level thyroid medicine between surgeries. I will have that nerve tested in about a month and then have the next surgery approximately 2 months after the first assuming the nerve is better by then. After the second surgery, I will have to take thyroid medicine for the rest of my life and while it can take some time to get the dosage right, I figure that it will be great to finally have a functioning thyroid even if it comes from a pill and not actually a functioning thyroid. My appointment with Dr Gosnell & Dr Campbell started about an hour late and I was with them for about an hour so Paul called several times when I was in there. When I got out, I didn’t want to call him right away because I was kind of scared and didn’t want to scare him. I didn’t want to tell him on the phone but he called me when I was driving and asked what they said and I told him that I could run/bike whenever I felt like it and then he asked, what did they say about the pathology? So I had to tell him along with the “my life won’t be cut short because of this”. He told me that he loved me and that we would go through this together. I was glad that he knew. I didn’t want to call my mom because I knew she would worry but I decided to call her anyway because I wanted to talk to her and she had a really good reaction. She was calm and said that we would just get through it. And so began the calls.

Home Sweet Home

When Dr Gosnell came by to see how I was doing, I told her that my pain was in control, I had gone to the bathroom and that I wasn’t nauseous so she said that I could go home if I wanted to. I asked what she recommended and she said it was really up to me and that I might get a better night of sleep at home since the nurses would be checking on me all night. So I decided to go home. I was checked out and Paul & I were in the car heading home by 5pm. And by 5:01pm, I was feeling incredibly nauseous. To get to my house from Mt Zion hospital, you have to go up and over the hills of Divisadero towards the Golden Gate Bridge and I was miserable but thankfully I made it home without getting sick. Paul & I set up the second bedroom as my sick room with a bunch of pillows so I could sleep with my head elevated, ice pack on my neck and pain killers at my side. The nurse let me take the paper tape measure home so Paul measured my neck every hour until I went to sleep. I took pain meds but not very many. Uli (the dog) was acting a little odd the night I came home from surgery and the following day. He slept at my feet so he was close but not super cuddly. By the third day after surgery he became mister super loving cuddlebunny and he could not get any closer to me. I thought that was odd but then I realized that maybe he was aware that I was a little weak after surgery and then as I was feeling stronger, he knew that he could be cuddly. My neck was stiff and I was feeling weak but that only lasted 2 or 3 days. My voice was the longer-term problem but my body recovered pretty quickly. I didn’t realize that my breathing was compromised until I tried a bike ride 2 weeks later.

Recovery - Weird Voice

Not long after I was brought into the recovery room, the nurse that was assigned to me came in to tell me what our plan was: we were looking for three things: 1. Pain management – let’s keep it under control 2. Bathroom – let’s make sure I can go to the bathroom 3. Internal bleeding – let’s make sure my neck doesn’t swell up. She would come to my room every hour to measure my neck. 4. Nausea – let’s make sure I'm not feeling sick. Paul sat in a chair next to my bed – There was another patient bed next to mine but it was empty when they brought me into the room so it was just me and Paul for a bit. Then Claudia came in – she is Paul’s younger sister and she works at UCSF. It was kind of funny because when she came in, she told the nurse to give me morphine. I got scared because when I think about morphine I think about it as a drug that you give to people who are dying so I didn’t want that. Instead, I said that I would take a pill so they brought me a low dosage of Oxycontyn. They also gave me ice chips and those felt great in my throat – especially in combination with the ice pack that was on my neck. My throat was sore and my voice was tired and weak and I felt like I was a little congested so I asked for a throat lozenge. Dr Campbell (the second surgeon) said that it was normal since the breathing tube had those feelers on the outside. He said that there was trauma in my throat. Dr Campbell told me that during the surgery, my laryngeal nerve was damaged. He said that he could tell that my voice was weak and higher pitched than my pre-surgery voice. He said that my thyroid was very sticky and sick which was a result of Hashimotos. He also said that the calcified nodule was pressed right against the nerve and every time they tried to move the nodule, the nerve would move too. It was like they were fused together. Since the breathing tube was able to monitor the health of the nerve, they knew the exact moment that the nerve was injured. It took effort to talk and all that came out was a weird sounding whisper. The nurse brought some food but all I could eat was the honeydew melon. It was delicious and everything else was super gluten-full. I sent Paul & Claudia home because I wanted to nap. I didn’t sleep a whole lot because the lady in the bed next to mine (she came in about 45 minutes after I got into the room) and I started to chat. And it turned out that she knows my boss! She was really sweet and she had a drain after surgery because her thyroid nodule was so big. But her voice sounded like a normal strength voice so it did worry me that my voice was so very weak. The picture below is from the recovery room with the tape measure that made sure I wasn't bleeding internally. The small line under my incision is (I believe) what they used to mark and measure the neck. It is not a second incision.

After Surgery - the Best and the Worse Part of it all

The procedure took just under 3 hours and I remember waking up feeling super groggy. Immediately there was a nurse above me asking if I was in any pain and I told her that it felt like my neck was cramping so they put something in my IV and that pain went away. I was groggy pretty soon after that and then eventually started becoming more alert. The staff was very tuned into me and when I was able to keep my eyes open for a pretty reasonable amount of time, they decided that I could go to my recovery room. I was probably in the post-op room for 30-45 minutes before they moved me to the room. The best part of leaving post-op was as soon as they brought me out of the room, I saw Paul standing there. We went to the elevator and Paul disappeared for a few seconds when they got me in the elevator then they let him in and he made his way next to me and held my hand. I felt so safe and happy to have him there. The worse part of it all Paul just lost his father and he spent my time in the operating room writing his dad’s obituary. It’s hard to not feel guilty for putting him through this when he is dealing with the loss of his father after years of dementia and diminishing health.

Surgery

I have never had surgery before but I did as told and didn’t eat or drink anything from midnight until my 6am check-in time. I woke up at 4:45 and took my Uli out for a walk and then took a shower. It was so peaceful to be outside with my babydog at that time. Then Paul drove me to the hospital and I went into the “check-in” room on my own while Paul waited in the waiting room for me but after a few minutes, I asked if I could bring him in and the nice lady checking me in said of course. So I asked Paul to come in and I felt a tiny bit less scared having him there. By 6:45, I was brought into a room and given a gown. That is when I started to get nervous. Once I was in my gown, the nurse came back in the room and I asked her if I could leave my underwear on and she told me “no, everything off” so I had to go back in the bathroom to take them off. I felt weird about that but later on when I had an IV in my arm and had to go to the bathroom, I realized what a good idea it was. I also appreciated the “open in the back” hospital gown for that same reason. Anyway, it was a very fast paced process after that. A nurse came in to put the IV in my arm, I was given a warming blanket and when I asked for a second one, they quickly brought one, a lady that is conducting a research test that I agreed to came in to say hi (I knew I would give blood before the surgery for the research), the anesthesiology team came in to talk about the procedure and to ask me if I had any loose teeth that they should know about. I told them that I didn’t but that if I came out of surgery with one, I would know who was responsible – we giggled about that (mine was a nervous giggle). Here I am before things started really moving forward in the pre-operative room. They put an oxygen strip into my nose at some point and then the surgeons came in to see how I was doing and to ask if I had any questions. Paul had my long list of questions and so he asked some and then commented that I had a lot of questions and that some are probably better to ask after surgery. I laughed because I was hoping he would ask my question about how hard the thyroid is to remove – my example that he did not read referred to chicken – some bits are super easy to cut apart – just snip a little part and you’re done and then other parts are harder to separate. What part of the chicken is most similar to the thyroid? Paul looked amused as he read that question to himself and skipped to the next one. The surgeons told me that the breathing tube that they would use for this surgery would have “feelers or sensors” on the outside so that they could monitor my laryngeal nerve throughout the surgery. I had been told earlier that before they took me into the operating room they would inject something into the IV that would relax me. Thank goodness because things were happening so quickly that by the time I was ready to go into the operating room, I needed to be relaxed. My normally very low blood pressure was elevated pre-surgery. I was able to look up and see Paul’s face while all of those people were coming into the room. After I was relaxed, (I think it took all of 30 seconds to be effective) the team moved me from my hospital bed to a stretcher and into the operating room. I remember being moved from the stretcher onto the operating table and seeing two or three giant light sources above the table. I remember saying that the lights were like I remember from TV shows like ER and the staff laughing. I was told that they were going to put sticky monitors on my body and they did. Then it was time to tell me that they were going to put an oxygen mask on my face and that I would fall asleep pretty quickly. I think I was out within 5 seconds. Maybe less.

Dr Jessica Gosnell

When I met Dr Gosnell, I liked her immediately. She is young, smart, she was wearing a Nike Fuel band and she is a thyroid specialist. She felt the calcified nodule immediately. She told me the risks of surgery: 1. Internal bleeding – she wants her patients to stay at least 6 hours after surgery to make sure that isn’t happening. If it is, they will know because your neck will swell up. And if it does happen, they need to get me back into the operating room to stop the bleeding. 2. Nicking the parathyroid glands can cause low calcium levels and prompt the need for taking higher doses of calcium. 3. Infection after surgery. 4. Stress or damage to the laryngeal nerve which is the size of dental floss and runs behind the thyroid. There is a 5% chance of damage to this nerve and if it is damaged, the voice will be compromised. This nerve also moves around as you breath, swallow, sneeze, eat, drink, etc. I liked her, I trusted her so surgery it was. Oh, and I asked her if she would be taking out both nodules and she let me know that she would be taking out the entire right side of my thyroid rather than just the nodules. She said that the nodules were like marbles in jello. You can’t just take the nodules out – you have to take the whole half of the thyroid out. And she also made it clear that she would not take out both sides of the thyroid unless she knew for sure that it was malignant while she was in surgery. They would do a quick pathology during surgery but the more comprehensive pathology test results would be complete over the next 7-10 days.

The Fourth Super Obvious Hint that was not really a Hint after all – it was a loud and clear alarm bell.

On a Friday - two days after the biopsy, I got a call from the pathology department at UCSF telling me that I needed to go back in for a follow-up biopsy and they open at 9am on Monday, can I come then. I said “uh, sure, ok” and then immediately called Dr Woeber who was gone for the day. Then Pathology called me back and cancelled the Monday Biopsy and said that maybe I don’t need another biopsy. I begged Dr Woeber’s assistant to ask that he please call me at home over the weekend and thankfully (and kindly), he did. He told me that my pathology results were suspicious and that I have three options – I could do nothing now and just keep an eye on it and do more biopsies in the future. Two, I could be proactive and have surgery to remove the nodules. Three, I could do another biopsy where the tissue would be submitted to a genetic test which is new, it has a 90% accuracy rate but because it is so new, many insurance companies will not pay for the test. He also said that the “suspicious” findings of my biopsy had a low risk of being malignant – only a 5-10% chance. I didn’t want to sign up for a future of biopsies, I didn’t like the math of taking a test that had a 90% accuracy rate with a suspicion that had up to a 10% chance of being malignant so I chose surgery.

The Second and Third Hint

Second: During the ultrasound, the lady conducting the procedure said things like “oh that’s interesting” and “let me check the lymph nodes” which may have been part of the standard procedure but I wasn't expecting it so that gave me something to think about and when I left she looked me in the eye and told me in a sincere tone of voice “good luck”. That scared me. But the fear didn’t last very long. The Third Hint: Dr Woeber called to tell me that I have two nodules in my thyroid and he wanted to order a biopsy just to be sure that it was nothing to worry about. He said that it was probably nothing but that it is always good to be sure. The day of the biopsy I was told that I have two kinds of nodules: a calcified one that would be hard to biopsy because that would be like putting a needle into a marble and a squishy one which would not be hard to biopsy. I’m pretty sure they did not call it squishy but I forgot how they described it. They said that they would biopsy both but if they are not able to get into the calcified one, they would bail quickly but that won’t be a problem because it is very rare for a calcified nodule to be cancer. Sure enough, they had to bail on the calcified one and that was no concern to me. The biopsy was not painful but it was uncomfortable. Especially when they were trying to get that calcified one. I could feel the needle pushing that marble around and it did not feel good. I was glad when they called off that part.

The First Hint

I started to wonder if I should take thyroid medicine to help with my less than normal thyroid function so I thought I should find a thyroid specialist to answer that question. I was surprised to learn that it is not easy to get an appointment with an endocrinologist. I had to start by finding one that took my insurance and the ones that had been recommended were not on my insurance plan. But I found a wonderful man at UCSF, Dr Kenneth Woeber who is a Thyroid specialist and he agreed to see me once he looked over my blood test results. I wondered if I should have been worried when his office called me the day after I sent my blood tests to schedule an appointment and he was able to see me the very next day. That was the very first of a series of hints that I probably should have been worried. When I saw the charming Dr Woeber, he asked me in his South African accent “why are you here?” and I told him that I have Hashimotos and I wondered if I should be taking thyroid medicine to make sure my body got the benefit of a functioning thyroid and he said that before we answer that question, let me examine your thyroid to see if there is anything else going on. That surprised me since I had no expectation that there could be anything except for that annoying Hashimotos. I should explain that the end game of Hashimotos is Hypothyroidism which is what my mom has so I never thought that my thyroid problems extended beyond Hashimotos. I just thought that I caught my problem earlier than mom caught hers and that; hopefully, I would be able to manage mine before I ended up with the hypo problem. As Dr Woeber examined my thyroid, he mentioned that my thyroid was enlarged – about 1.5-2 times as big as a normal thyroid. I thought that was weird but I was not really worried. He asked me 4 times if it hurt when I swallowed. And he recommended that I get an ultrasound just to make sure everything was ok. He said that he didn’t feel anything but in hindsight and with more information, I am pretty sure that he did feel one of my two cancerous nodules. Of course he did not know that they were full of cancer but I am pretty sure that he felt one of them because one of them was calcified (hard like a marble). And the reason I believe that he felt it was because a few weeks later when I met with the surgeon she told me that she could feel one of them. Anyway, off to get an ultrasound and I was not worried - my feeling was more "well, that's curious". I figured that it was a good idea to check it out and that I was doing the ultrasound just because my thyroid was enlarged - not because there might be a problem in there.

How Did I Know There Was a Problem?

I have never had a weight problem. I have been a normal, healthy weight and size for all of my life until about 4 years ago when I started to gain weight steadily. Which might be normal for someone hitting middle age but to start putting on a significant amount of weight over 4 years and 2 of those were years that I was training for a marathon was odd. And for all 4 of those years, I was incredibly active with running, riding bikes and doing yoga. I averaged 4 on a slow week and 6 days of exercise on a good week. I used the Nike + app and a Nike Fuel band and both of them indicated that I was significantly above average in the amount of exercise that I did compared to the total user base and to women within my age group. It just didn’t make sense that I would gain that much weight in such a short period of time while I was so active. My regular doctor told me that since the blood tests indicated that my thyroid function seemed to be fine it was probably because I had recently gotten married and I was probably eating bigger portions. Part of me worried that it was just because I was getting older and my metabolism was slowing down but another part of me was worried that it was my thyroid because my mom has hypothyroidism and she went from being a small framed woman with an A cup to a lady with Double Ds. I was terrified that that was what was happening to me at a much younger age than it happened to my mom. One of my friends suggested that I make an appointment with a new doctor who might order a more extensive panel of blood tests beyond the standard ones so I made an appointment with Dr Teresa Black who is a MD who also practices acupuncture. Lucky for me, we talked for a long time about why I thought there might be a problem with my thyroid that was not showing up in the standard blood tests and she listened and then ordered a test for thyroglobulin antibodies and that finally gave me an explanation. I was diagnosed with Hashimotos Thyroiditis which is an autoimmune disease where your body produces antibodies to attack your thyroid and one of the symptoms is weight gain. I felt giddy with excitement to finally know that there really was something beyond my occasional ice cream treat to explain my weight gain. My thyrogloblulin antibodies were incredibly out of range but that didn’t seem to alarm my doctor a whole lot. In fact, thank goodness I asked for a copy of my blood test results because when my doctor went over them with me, she somehow missed the thyroglobulin antibodies results. I looked over them when I got home from my appointment and almost had a heart attack when I saw that mine were 2,503 when the normal range was less than 20. I immediately called and had to leave a voicemail because I had been the last appointment of the day and to make matters a little more stressful, the office was closed for another 2 days so I had 2 days of Google searches and worry until Dr Black called and apologized for missing that - we had two set of blood test results - an incomplete set which she was looking at when we spoke and a complete set which her assistant gave to me. Dr Black told me that I had Hashimotos and that it was super common and that one thing I can do to help reduce the symptoms is to go gluten free. There is something in gluten (is it a protein?) that looks a lot like something in the thyroid tissue and with Hashimotos, the body produces antibodies to attack the thyroid - when gluten in the body, even more is produced. The end game of Hashimotos is Hypothyroidism so it is very likely that my mom had it and just never knew it. That said, after a few months of being gluten free, I did not feel any different than when I was enjoying gluten. And my mom had recently gone gluten free and she felt a huge benefit – her years long gastrointestinal problems were much much better and she was able to lose weight which she had not been able to do ever since her body exploded with hypothyroidism. But I was making progress because I had a second blood test and my thyroglobulin antibodies had dropped to 2,300 which is still super-high considering that normal is less than 20 but it was also a bit lower than the original test. So I felt that I was making some progress and that it would just take a bit of time to feel better.

"We Need to Talk About Your Pathology"

8 days ago I heard some pretty shocking words that were followed by “it was cancer but it will not shorten your life span and it will not have a major impact on your life besides the need to go back into surgery to remove the rest of your thyroid.” So I got some pretty good news with the bad and I really did hear the good but it’s almost like the world stopped spinning and everything got silent except for the echo of the word cancer. It is such a heavy word and I associate it with death, misery, and the dismantling of a body. But my version is almost like cancer-light or cancer-ish. Sure, I have some bad stuff going on in my thyroid but it is very slow moving and with this kind of cancer (papillary), as long as you catch it early, it is very easy to get rid of it. And I knew that mine was caught early. Surgery and possibly a radioactive iodine pill afterwards and I’m done. Life will go back to normal.