No Laryngeal Nerve Damage from my last surgery!

I arrived at the hospital at 7am and I was brought to my room to get started. First, change into the gown, then the no-slip socks and then get into the bed and answer questions like: when did you last eat? What was the last thing you drank? Are you in any pain, etc. Then the anesthesia Doctor came in and I told her that I was nauseous in the car when I went home the last time so she told me about the anti-nausea stuff they were going to put in my anesthesia cocktail and she gave me a patch to put behind the ear to help address longer term nausea. The surgical resident and an intern came by to introduce themselves and the nurse who would be with me in surgery came by to do a few thing (get few more signatures, etc.) I put on the blue shower cap thing, said bye to Paul and they started to roll me down the hallway to the operating room. The next thing I knew I was in the Operating room and then I do not remember much after seeing those big surgical lights and all of those people standing around. Some were putting sticky things on my skin so they can monitor important things like heartbeat and who knows what else. For this surgery, one of the most important monitoring tools is a specialized breathing tube that has sensors that monitors the my Laryngeal nerve. The machine makes all kinds of noises it if recognizes a change in the nerve function. I was in the operating room for 3 hours and when I woke up, my neck was cramping so they gave me something to make it stop. I sort of remember waking up from surgery and asking if my voice was normal and I think I asked a few different people. Thank goodness there was no damage at all to the nerve on this side! For this second surgery, my incision was stitched and taped rather than glued shut. I had the recovery room to myself and the nurse lowered the shades so it was dark and cozy. I had cantaloupe, honeydew and pineapple for lunch. Paul spent some time with me after surgery but he left for a few hours so that I could get some sleep. And I did sleep but a few times I woke up because I was super nauseous and I did actually get sick in the bathroom. It was pretty terrible. Despite my nausea, I still wanted to go home that day but I couldn't leave until they tested my calcium levels. They were a little low so I was given a prescription for Tums. Which is pretty inexpensive so it's good to know that is a good way to get calcium. By 8:15PM we left the hospital and headed home sweet home. We were against the clock trying to make it to the pharmacy before they closed at 9pm but traffic was no problem and we made it to the pharmacy at 8:45. When we got home, I started to walk up the stairs to our house and as soon as I got to the top of the stairs, I turned around because I knew I couldn't make it to the bathroom in time to get sick again. I threw up 4 more times outside of the house. It was dark and I really hope the neighbors did not hear or see me. I am so relived that my voice is normal. I feel more tenderness compared to the last surgery but maybe I didn't pay attention to the pain because I was so concerned about my voice. So now I am at home and my dog is by my side and my parents are here too. I meet with the Endocrinologist next week. I want to know if he agrees with the surgeon that I should do the Radioactive Iodine treatment. If he says yes, I will find out how soon I can get that done.

Tomorrow - Surgery #2

In 12 hours I will be in surgery to remove the rest of my thyroid. I feel a mixture of anxiety and also excitement. Not that I am super excited to have surgery but I am super excited that this phase is almost behind me. I have a feeling that my laryngeal nerve will make it through unscathed this time around but if it is damaged, I know that it will get better. I wish I could figure out a way to load my voice recordings to make this a complete record of this experience but I don't know how to do it. My surgeon told me that I am a good candidate for the RAI/Radioactive Iodine treatment so when I see my Endocrinologist next week, I will find out what he thinks. If he says that I should do it, I want to get it done as soon as possible. My surgeon also told me that UCSF tests Papillary Thyroid Carcinoma for the BRAF V600E Mutation and I tested positive for this. She said that they have been testing people with this kind of cancer for that gene and that the majority of people (approximately 80%) test positive for the gene and that they are trying to figure out what this means and how they can act on this information. Another thing she said was that in Japan, they are doing a study with people who have this kind of cancer and rather than operating, they are just watching the patients to see what happens. She said that the medical community is very interested in seeing what they learn. One final piece of information that I found very interesting is a Q&A about Thyroid Cancer in the New York Times from an Endocrinologist from Sloan Kettering. For some reason, I can't insert a link to the Q&A but I recommend googling: Ask an Expert About Thyroid Cancer with Dr. R. Michael Tuttle, an endocrinologist at Memorial Sloan-Kettering Cancer Center. It was published in October 2010. OK, it's time for a bath and then off to sleep. Or to try to sleep.

Surgery #2 is on the calendar

I have a date for my next surgery and it is in about 2 1/2 weeks which is great because that means that I can get this over & done. And I know that if I have damage to my laryngeal nerve, it will get better and my voice will get back to normal like it is now. I have a pre-operative phone consultation with the nurse next week and a pre-operative in-person appointment with the surgeon also next week and then it is off to surgery from there. I already have a post-op appointment with the surgeon and I have requested an appointment with my Endocrinologist after the surgery so we can see how much we will need to bump up my thyroid medicine dosage. And I placed an order for a new beautiful scarf as a treat for surgery #2. I should also mention how great my husband has been through all of this. He has been really strong and kind and gentle and thoughtful. I could describe him that way on a normal day but through this, he has been exceptional - I feel loved and that I am really cared for. And if that isn't wonderful enough, after the first surgery he went out and bought me two beautiful Burberry scarves which are in the picture here. He did not even know at the time that I would be needing a second surgery - he just wanted me to have one for a warm day and another for a cool day. I will definitely be using them both a lot in the upcoming months. Lucky that I work in San Francisco because July is usually quite windy and cool so it won't be weird to be walking around with a scarf in the summer in this town. I'll post again in a few weeks after the next surgery.

Normal Vocal Cord Function!

My Vocal Chord Function was tested this morning and the Doctor said that my function was completely normal. Here is a quick recap of why it was necessary. In my surgery to remove part of my thyroid, my Laryngeal nerve was stretched so one of my two vocal cords was not working properly. Here is an image I found that shows what your cords are supposed to do when they work normally: Pretty simple, right? They separate when you breathe and they open and close and vibrate and do all sorts of things when you talk. There are two nerves that run behind the thyroid that make the vocal cord work. One of the nerves is under the thyroid on the right side and the other is under the thyroid on the left. My surgery was to remove only the right side of my thyroid and when that nerve was stretched in surgery, the result was that the vocal cord on the right side did not move. It just stayed in the closed position. Since the nerve on the left was not damaged, that side worked fine. My voice sounded pretty strange (very weak) and my breathing was very shallow but at least I could talk and breathe. It took about 5 or 6 weeks for my nerve to heal on its own. The doctor told me that there is nothing that you can do to hurry up the healing process and I asked if my bike ride (when I felt like I was having an asthma attack) made my recovery slower, he said no. Anyway, the procedure to check the function was really interesting though I almost passed out when I saw the tool that he was going to use to test the function. This instrument of terror is called a 70 degree rigid endoscope. Before the procedure, the nice Dr Fink asked if I was in any pain and I told him no asked if that was about to change. He said no but I wasn't sure that I believed him so I asked "what are we about to do and what are you going to do with that thing?" He said that he would examine my ears which have no connection to the vocal cord but that is part of their basic exam since they are part of the Ear, Nose, Throat group at UCSF. Then he used the popsicle stick to make me say "ahhhh" and then he recorded me reading a few pre-written sentences. Now they will have a record of my voice when it is healthy. Before we did that, I let him listen to the recording I made of my voice a few days after surgery. Now it was time for that scary tool. The Doctor was really nice and he put me at ease pretty quickly when he said that he would insert the tool into my mouth until he reached where my back teeth are and the tool has a high resolution camera in the tip which is angled at 70 degrees and would let him see my vocal cords. He said he was going to have me say the letter "e" a few different ways and he would film the cords doing their "e" thing and then we would be done. That didn't sound terrible and it wasn't. Before he put that thing in my mouth, he dipped the tip into a cup of hot water and quickly told me that the instrument of terror was sterilized and that the hot water had nothing to do with cleaning it but rather, they warm it up so that the camera does not fog when it is put in your mouth. His gloved hands picked up a piece of gauze and he used that to hold my tongue and stuck that thing in my mouth and started telling me how he wanted me to pronounce my "eees": regular, high pitched, low pitched, high to low, low to high, high low high low, fast, slow and that was about it. It lasted no more than a minute, probably more like 40 seconds. He told me that some people have a very strong gag reflex so for those who can't handle having that thing in their mouth, they have to take a little camera and stick it down their nose for the test. Thank goodness I could do this one. The Doctor let me see the video of my cords in action and I will say it was really cool to see. He said that the function was completely normal so that means that I can schedule my next surgery to have the rest of my cancerous thyroid removed. Yay! On a related note, my Mom has a friend who had a total thyroidectomy and she suffered damage to both of her laryngeal nerves during the surgery and that was a pretty terrible outcome - it has been a few years and she is still not 100% back to where she was before the surgery. My humble advice is that if you have to have this surgery, make sure your surgeon is a thyroid specialist and does hundreds of these surgeries each year. My surgeon fits that criteria and I still had damage to mine. I also recognize how important the breathing tube is for this surgery. The one that they used for my surgery had feelers/sensors on the outside which constantly monitor the laryngeal nerve function throughout surgery. The second mine was damaged they doctors knew it had happened and if I had been in there for a total thyroidectomy instead of a partial, they would have stopped the surgery after they had finished removing the thyroid tissue from the damaged side. They would not have continued with the total. I think about Mom's friend who had this surgery a few years ago and I assume that this specialized breathing tube was probably not invented yet or maybe it was not in widespread use because had they had one, the minute they knew that one side of her nerve was damaged, they could have finished removing the thyroid on the damaged side and stopped the surgery. She could have recovered from the damage and then go back in for round 2 when everything was better. Of course I do not know the circumstances for her - maybe they HAD to remove both sides immediately no matter what and maybe rather than just stretching her nerve they actually cut it and it would not have healed so there are certainly many things that I don't know about this but what I will say is: 1. Make sure your surgeon is a thyroid surgery specialist who performs 100+ of these surgeries each year (I got this number from thyca.org) 2. Make sure your surgeon will use the breathing tube that monitors laryngeal nerve changes during the surgery. I hope this helps!

Tips for hiding the Scar

After surgery, I wanted to hide my scar so I brought our a bunch of scarves that I had but I also wanted to have a variety so I went shopping. First of all, I treated myself to a pretty scarf that was unique because it is not very wide (approximately 2 inches wide). Not only was it a treat but it was also quite a splurge - I wouldn't normally buy such an expensive scarf but I figured that I would be wearing it very often. Here is a picture of it from the brand's website. I also went shopping to find other options and I came across a bunch of super inexpensive ones as well. I bought a bunch of fabric hair bands from Forever 21 which were around $3 each and I just cut them and tied them around my neck so they could fit snugly. Here is what those look like. And here is a picture of one of the headbands turned into a scar-hider: To recap, #1 splurge on a beautiful scarf #2 get a bunch of cheap ones too so you have lots of variety

Friday is a Big day: Voice & Swallowing Center appointment

I am going to the Voice & Swallowing Center at UCSF on Friday to test my laryngeal nerve function. Since it was damaged in surgery, I can not have the follow-up surgery to remove the rest of my thyroid until it is completely healed. I am quite sure that I will pass with flying colors because my voice is completely normal now but I do think that swallowing feels different since I have had the surgery. I don't know if that is really true or if I am just ultrasensitive. I will ask the experts on Friday. Also, I hear that the test will include sticking something down my throat and making me talk. I've also heard that it is not very pleasant but I will provide an update once it is done. I want to hurry up and schedule my next surgery for two reasons. One, I would like to not have cancer in my body anymore and two, my health insurance plan year ends at the end of June and I have already hit my out of pocket maximum. Wish me luck!