# My LONG surgery/post-op update!



## next2normal (Apr 10, 2013)

Hey guys, long time no see!
I am finally well enough that I can update everyone on what happened.
*Warning*: _long post ahead in two parts._

*A little background:
*
I am a female in my late twenties. On April 17th, 2013, I had a total thyroidectomy due to a mess of a Graves disease situation. I was on no thyroid medicine, but I was on a beta-blocker. Nine days before surgery, I was given Lugol's iodine solution to put in grape juice three times a day. Gross. EVERYONE I talked with said that I had the BEST endocrine surgeon in the area. She does at least three a day, whereas others in the area maybe did three a week. Obviously, depending on people's needs. This was my first surgery of any kind. I was told the standard no eating/drinking past midnight the night before, but other than that, no prep on my part. Two days before, I got a phone call asking questions about me, my medical background, yada yada.

*Surgery:*
Wednesday came around and I was prepared as I was going to be. I was nervous, but both my mom and dad came along for support so I was feeling okay. Immediately upon arrival, I get whisked to a private room, accompanied by my parents, for more questions, identification, changing into a gown, urine sample, blood pressure, that kind of thing. We sat around for maybe forty five minutes, including all of that. After that, my nurse prepped my IV, but didn't hook me up to anything yet. We sat around talking for a little while, and then they said it was time. I was put in a wheelchair to go to my holding room. I had to part with my parents, which all of a sudden made the experience very real.

The holding room consisted of me moving to a hospital bed in a room full of other beds sectioned off by curtains and nurses coming and going. A nurse eventually came by and handed me an awful magazine (but it's the thought that counts) and a little while later, attached my IV to some fluids. I mostly laid there, trying to breathe and keep calm. Eventually, the anesthesiologist came by, introduced himself, asked what I was having done and if anyone in my family had adverse effects to anesthetics. He was the only member of my staff I didn't absolutely love, but I had no grounds to protest on. About two minutes later, he said it was time, and with the help of a nurse, I was wheeled away into the operating room. They told me to say hi to a man, who I have no idea if he was a tech or nurse or whatever, moved a tray full of who knows what next to me. Next thing I know, I was out. No counting backwards. No inane questions that I can remember. Just out like a light.

*Recovery*
My awakening was much more memorable than falling asleep. I woke up grasping for air. Choking. I vaguely remember a mask of some kind very close to me, either going on or off. Someone yelling. I was sweating profusely. I could not breathe, cough, or move. Black out. In a blink, I'm still trying to cough. There's an oxygen mask. I've been wheeled into recovery. There was a nurse over me like a hawk. My blood pressure sky rocketed to 220/something. I had a high fever. They kept asking me if I could tell them my name/birthday. I was fully conscious, but still grasping for air. How could they expect me to answer if I couldn't breathe? I was very close to death and everyone knew it, but no one said it. They changed my gown and put a wet wash cloth on my head. Slowly, my blood pressure was going down, and after many many sips of water and a very very nice nurse, I could vaguely breathe. Before surgery, I was told that my time in the recovery room would be about an hour. However, because of my situation, I was in the recovery room for four hours of attempting to breathe. I completely calmed down after about two hours, but they wanted to monitor me and wait for my surgeon's next surgery to be over so she could give the all clear herself. My surgeon came in, checked my vitals, talked with the nurses, and then came to be and asked how I was doing. I could talk, but I was very quiet and very hoarse. The surgeon explained that my thyroid was wrapped around my vocal chords and there was an issue getting everything unattached. They finally took off the two aperatuses I was connected to. I was put on immediate vocal rest but asked if I wanted to go up to my room. The answer, of course, was yes. With a thumbs up and a wave to a man who would wheel me away, I was off.

I ended up in a private room (woohoo!) where they needed to transfer me to my actual hospital bed. It required lifting my head, and moving my entire body. It hurt. I didn't think it was going to happen, but I moved without anyone having to lift me. They look my vitals (blood pressure, pulse, temperature), and asked if I wanted a blanket (uh, no, I was still on fire.) Someone or another hooked me up to massaging machines on my legs and I still had my IV. My nurse came in, and was the nicest, most caring, helpful woman I have ever met in my life. She immediately said she knew I was on vocal rest, so I didn't need to talk, but she introduced herself and made sure I had a pencil and paper, showed me my call button, and my remote, along with getting my some water and a cup of ice chips. She asked me if I wanted my parents to come in and I indicated yes. My parents hung out for a while, and my mom ordered me some chicken broth, jello, 7-up, and a Popsicle from the cafeteria (it was going to close in about an hour.) Hurrah for a clear liquid diet. Both the popsicle and chicken broth felt AMAZING going down my throat.


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## next2normal (Apr 10, 2013)

My parents left and I stayed staring at the ceiling/wall for a little while. I wasn't tired, but I didn't want to every watch TV. Eventually, I had to use the restroom. This involved called the nurse and getting unhooked from everything, and trying to walk the five feet to the restroom. I immediately got nauseous to the point of tears. Everything hurt and now I wanted to puke. The nurse, very quickly, got me some anti-nausea meds, changed my IV to include potassium, and got a bucket, just in case. The nausea let up after a little while and I was just left with the pain and discomfort. After a while, I turned on the TV. I didn't sleep at all. Every time I drifted off, someone was coming in to get my vitals or to make sure I didn't need anything. Sometime later, I was brought chocolate ice cream. Bless you, ice cream giving nurse. It seemed like I was consistently being given pills to swallow, which was a HUGE process in of itself. One pill was allowed to be crushed and I took it with chocolate pudding. At one point, someone pointed out my upper right arm which was covered in a rash and several cuts. It happened during surgery, but no one knew what exactly happened. It did provide a problem when they wanted to get blood, however. The first tech steered clear away, using my left arm. My second tech was a pro, and found my vein despite my mangled arm. I was told that someone would be back at 6 AM for more tests and meds. It was three. I fell in and out of sleep. Nothing restful.

The nurses/techs came and went, doing the same tests they had been doing all night. Around nine, my endocrinologist came to check on me. My voice was stronger, but still sounded ridiculous. I hurt, but didn't care because they kept giving me pain meds. Nothing hurt until I tried to get up or shift my body. If I was still, there was no problem. haha. A couple hours later, my surgeon came in, looked at all of my results, and said instead of releasing me at noon as planned, she would be back "sometime after three." Great. At least I was told that I could eat solid food. I wasn't hungry but was encouraged to eat anyway.

I was discharged from the hospital about 5 in the evening. I was so excited to get home to my own bed. I was sent home with a prescription for pain pills, some vague instructions, and was told to call the surgeon next week for an appointment to follow-up. I hadn't had pain pills for a few hours. HUGE mistake.

I got home and stumbled up to bed. Between the cuts on my arms, five bandages, PLUS what was on my neck, I looked like a suicide victim zombie, but I didn't care. After about a minute, I decided I wanted to get up to use the restroom before I tried to sleep. At that point, my body jolted with an unbelievable amount of pain that I couldn't express. I could not move. I was crippled with pain. I cried and cried and tried to scream, but couldn't. My poor dad had no idea what was happening, but helped me move. I had to send him for pain pills that very second.

The next few days were uneventful. My days became filled with watching mindless shows on netflix and being given pills every four hours. Oh, and lots of jello. I either didn't sleep or I slept for no more than five hours at a time. Monday came and I made a follow-up appointment for Thursday. By Tuesday, I could get out of bed without hating everything, but I was sweating a ridiculous amount and couldn't turn my head in any direction, along with a really nasty sounding cough.

On Thursday, the surgeon asked how I was feeling, focused on my voice sounding like I have a cold (I don't.) and she took off my neck bandages. I had some movement of my neck, but not full. My blood pressure was high (but not deathly high, just higher than it should be), and she was concerned about how tired I was/how hot I was. She decided to have me stop taking my synthroid (which she had started me on on Sunday), get some blood work, and said we would reconvene on Monday (today.)

Over the weekend, my body went in full-out confused mode. Friday (first day with no hormone), I was very anxious. My dad asked if I wanted lunch and I started bawling. What? Very irritable, and switching between very hot or very cold. Saturday, I was exhausted to the point where I could not move off the couch if my life depended on it. Sunday, I was mentally feeling much better, but I had a headache all day and was continuing to sweat profusely.

Monday comes, and I am mentally feeling like myself, but just a little off. I called my surgeon, she found my bloodwork, and said it looked great (but she didn't mention my levels). She wants me to stay off my synthroid until Wednesday when she said my endocrinologist wants to see me. I made the appointment for noon and am hoping he can figure out what to do next.

_And that's everything up to date! I'm a hot mess, but on my way to recovery._
As of now, I can turn my head every direction except for up. I get infrequent jolts of pain, but nothing horrible. My voice is about 95% normal, although I can't speak too loudly. My scar looks great, and is really not noticeable unless you're looking for it (or are a little kid who points out EVERYTHING). Today I was able to go out to eat and go to two stores before getting too exhausted and needing to come home for a nap (clearly, I've reverted into toddler mode).

*What I learned from surgery:*
1. My neck pillow was a blessing. It was the ONLY way I could lay on the hospital bed.
2. If someone wants to take care of you, let them. 
3. Get a cup with a lid and bendy straws. You don't know how nice they are until you don't have them.
4. Rest, rest, more rest.
5. Time is completely irrelevant. Sleep when you can. Take your meds as often as you need to/can.
6. Before surgery, get everything done that you can: laundry, vacuum, those pesky errands, whatever.
7. Jello and pudding are amazing. Cheap, low cal, soft, cold snacks. 
8. If you have kids/pets, have a back-up plan for them. Some people are up and ready to go the next day, but I'm a week and a half after surgery and just yesterday was able to bend down enough to put on my dog's leash.
9. Ever tried to take a shower without getting your neck wet without being able to move your neck? It's hard. Be mentally prepared to forego a day or three without a real shower if necessary. I had a bath stool that helped in getting my body clean without moving my head.
10. V-neck t-shirts and PJ pants are the way to go. Have several sets so you aren't forced to do laundry right away.
11. A back massage would've been really nice.

*In conclusion, I am so so jealous of all of you who had easy recoveries, but am still glad I took the surgery route instead of the radiation one.
*
Sorry this is so long, and for anything I may have left out or spelling/grammatical mistakes. It is almost three AM!


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## next2normal (Apr 10, 2013)

OH! I left out the most important thing!
Last Monday they had my pathology results and it was noncancerous! Woohoo!


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## joplin1975 (Jul 21, 2011)

I'm glad it's not cancer!

Hang in there...it'll get so much better quickly. I'm glad it's over for you!


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## webster2 (May 19, 2011)

It will get better and congrats on a good path report!


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## Nowensmama (Mar 28, 2013)

Sorry your recovery has been so rough. I was grateful for being in the hospital 3 days so I was more 'myself" before coming home to my boys. Recovery was a lot slower than I expected too. But it gets better each day. I'm finally able to lift my head up.. don't remember exactly when it happened but I'm 3 weeks post-op tomorrow.. and I'd say the soonest it happened was this past weekend. Hope you're able to get more restful sleep and feel more yourself soon! Wonderful news on the path report!!!


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## Andros (Aug 26, 2009)

next2normal said:


> Hey guys, long time no see!
> I am finally well enough that I can update everyone on what happened.
> *Warning*: _long post ahead in two parts._
> 
> ...


Oh, my gosh...................you had a very rough time of it. Just reading all of this was scary.

How are you doing now? How is your incision and most importantly, your breathing?


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## jenny v (May 6, 2012)

Wow, you had a rough go of it! Take care of yourself and take it slowly, everyone reacts to surgery and anesthesia differently. Did they ever figure out what caused the scary recovery episode?


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## jsgarden1 (Aug 29, 2009)

So glad you are about past the hardest part, and SO GLAD for you that there is no cancer. It's such a huge relief...I cried when they told me I didn't have it  You really did have a hard time in the hospital, my gosh. Make sure you try and move your neck around some. Someone on here had posted about turning your head in a circle. I couldn't really tip my head back very far yesterday so I did circles when I thought of it. Today a lot of that stiffness is gone. Take good care of yourself and you will be back to normal very shortly


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## next2normal (Apr 10, 2013)

This is what my scar currently looks like (13 days post-surgery). It is probably just over two inches long and not bad at all. Everyone seems pretty impressed at how well it is healing. Personally, I was hoping for a cooler battle wound, but I guess in the long run, this is for the best!

As for my breathing, I've felt like I've been breathing normally since maybe two hours after I first went into the recovery room. However, my voice has been sounding very nasally, as if I have a cold. My nose is not blocked up, so I think it's just my throat trying to deal with itself. It sounds better every single day so I'm not worried about it.


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## Andros (Aug 26, 2009)

next2normal said:


> This is what my scar currently looks like (13 days post-surgery). It is probably just over two inches long and not bad at all. Everyone seems pretty impressed at how well it is healing. Personally, I was hoping for a cooler battle wound, but I guess in the long run, this is for the best!
> 
> As for my breathing, I've felt like I've been breathing normally since maybe two hours after I first went into the recovery room. However, my voice has been sounding very nasally, as if I have a cold. My nose is not blocked up, so I think it's just my throat trying to deal with itself. It sounds better every single day so I'm not worried about it.


Thank goodness; you even sound cheerful!!! And we all have something to be cheerful about when the news is good; right?


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## next2normal (Apr 10, 2013)

Gotta be cheerful when the news is good!
When I went for my follow-up with my surgeon, there was a girl just a few years older than me in there for her follow-up as well. She found out she had cancer and was being sent to another specialist at that moment. In the big scheme of things, I got off pretty easy, despite the nearly dying and long recovery time!


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## Andros (Aug 26, 2009)

next2normal said:


> Gotta be cheerful when the news is good!
> When I went for my follow-up with my surgeon, there was a girl just a few years older than me in there for her follow-up as well. She found out she had cancer and was being sent to another specialist at that moment. In the big scheme of things, I got off pretty easy, despite the nearly dying and long recovery time!


You did have a very difficult surgery but I have reason to think your surgeon is excellent. Do you agree?


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## next2normal (Apr 10, 2013)

Yes, I believe I had a great surgeon. After all, I'm here, with only a minor scar. I loved her and felt completely confident with everything.


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## next2normal (Apr 10, 2013)

Welp, had my follow-up to my follow-up today with my Endo.
He did more blood-work (I don't know how much more blood I have to give!), after being off synthroid for a week, and we are waiting for that to come back so he can determine my new dosage of Synthroid. He is either going to start me on 50 mcg (after I was taken off my originally prescribed 112) and then gradually work me up as needed or have me restart the 112 and see how my body does. Throw me into the fire, so to speak.

As of now, I know I need something, but my body was not happy when I first started taking the 112, or when I had to go off of it. My endo is pretty sure it could take a month for my body to sort itself out and completely accept my replacement hormones. He is unsure of why my blood pressure is still high, but we are now monitoring that daily and hopefully dealing with that, soon.

What a pain.

Regardless, my scar is healing nicely. My endo was very impressed. I am in good spirits, and still don't regret having the surgery.


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## Octavia (Aug 1, 2011)

Welllllll....I am 99.99% certain that 50 mcg of Synthroid is going to be WAYYYYY too low of a dose, so I sure hope the increase isn't gradual. You will be miserable.

You may have had a "thyroid dump" of extra hormone during your surgery, and if that's the case, taking some time off of the Synthroid is good. But starting back on 50 mcg is going to be a miserable, miserable experience, in my opinion.


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## next2normal (Apr 10, 2013)

I agree completely. I am hoping my bloodwork shows good news and we don't have to start small and work our way up. I'm pretty sure he was saying his definition of "gradually" is like a week long period, but I am so ready to be normal, or at least next to normal, again.
My body never likes new pills or being played with. This could be a long process. I just keep telling myself, "it could be worse!"


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## Octavia (Aug 1, 2011)

Oh...if "gradually" means a week or two, that's great! I was hoping you weren't talking about small increases with 6-8 weeks in between for labs. Nightmare!


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## joplin1975 (Jul 21, 2011)

Ditto Octavia's posts. 

I was started on 50mcgs after surgery. At my six week blood draw, my TSH was 121, my free t4 was barely registering and I don't think they could even get a number for my free t3. I gained 27 pounds in 6 weeks, had horrible muscle cramps (as in, I was in a hotel in Atlanta and thought about calling 911), and was so tired I could barely get through the day without passing out. And then there was the depression....

I couldn't tolerate synthroid pre-op...just a cautionary tale...if you doc insists on staying with 50, be prepared to fight like made to get that upped.


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## next2normal (Apr 10, 2013)

Blood work wasn't in today. I am hoping it shows up tomorrow even though my doctor doesn't keep Friday/weekend hours. I will keep everyone updated with what he decides!


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