Friday, September 13, 2019

How the Surgery Went

I went in to have my Tonsillectomy/Adenoidectomy done Monday afternoon. I had already been expecting several possible complications after the surgery, but the things that did end up going horribly wrong were not even things we had expected to occur.

First off, my surgeon is cold, callous, and mechanical. (That's a very nice way of saying he's an asshole.)  He's been this way throughout the entire year long process, considering this was supposed to be done back in March 2018. The reason it wasn't done then was because there were too many "unknowns" that made him deem the surgery "too dangerous" for me. There was the chance that I could become Manic/Psychotic as there was no real way to treat my pain. At the time, we didn't know that opioids/narcotics can trigger my Mania/Psychosis (we didn't learn this until last September, the hard way), but I knew from previous experiences that these conventional pain medications do nothing for my pain either way. (They just cause me to lose my mind.) Therefore, since this was such a huge risk and there were no other alternatives for pain management, he cancelled the procedure on the same day! (Yes, my family and I had all woken up at 4am and went to the hospital, I had already emailed his clinic my concerns weeks prior and they did not address them until the day of! It was ridiculous!)

I had still met with him for the Post-Op appointment, even though the surgery never happened, and he said that I seemed to be doing better. For a little while, I was. I changed my diet and lifestyle, reduced my sugar intake significantly and started drinking green vegetable juices/Emergen-C daily. He said I resolved the issue myself, but that if I really needed the procedure in the future, he would gladly do it for me. And this time, the right way. He said we would ensure it was safe for me through obtaining medical clearances from both my Primary Care Physician (PCP) & Psychiatrist, and that he would authorize for a 24 hour hospitalization to monitor me and manage my pain.

So now that you know some of the history, I can bring us back to this year, 10 more bouts of Tonsillitis/Strep Throat later, a total of 22 times in the past 2 years. And how the surgery actually went this past Monday.

His clinic actually called me in early. I was expecting to be seen at 1pm, then called in for surgery at 3pm. My Aunt Robin was driving me there while I received a phone call at 12:50pm from the surgery scheduler asking if I could come in earlier. I said I was about 5 mins away. She said they would be ready for me as soon as we got there, and they were. (I had a prior missed call from her as well, which looked to be about from 10am, so maybe they wanted me there even earlier?)

They prepped me for the surgery and had a different person from the medical staff come talk to me before we began. As is required of all procedures, I was starving and dehydrated as you can't drink or eat anything 8 hours prior to the operation, and I was incredibly sleep deprived since I had appointments and class back to back every day last week. Regardless, I was ready to get this shit done & over with.

After the nurse finished speaking with me, the surgeon came. Smugly, he asked me, "Are you sure you want to be hospitalized for the full 24 hours?" I kept on a good poker face and simply answered by nodding my head and saying "Yes." But this question was baffling. OF COURSE I wanted to stay the full 24 hours! I have had to jump through hoops to even get Medi-Cal to cover his authorization, had to attend SEVERAL medical clearance appointments, and I had been waiting months for the main facility to be available so it could happen! I found it incredibly insensitive and presumptuous that he would even ask, and especially with such a sardonic tone.

Secondly, he looked through all of the paper-work, asked me a few questions, barely even making eye contact with me, and so once I got a chance, I took out the letter I had prepared. 2 of my Psychiatrists had warned me that there was a risk that the Anesthesia alone can cause a person with my mental health history to wake up Manic/Psychotic, and so I wrote a brief letter just instructing the medical team what to do in case this were to happen. (The protocol would be to simply administer a higher dosage of my psychotropic medication, and I informed everyone at the hospital already during my Pre-Op appointments.) I pull out the letter to hand to him, and he dismisses me by saying, "Well I'm just the surgeon, I just do the surgery. This if for the nurses to worry about, not me." I politely responded by letting him know that it was simply a pre-caution in case I woke up disorganized or delusional, so that they could all be aware of how to proceed.

Again, the way he was speaking to me and retorting with such insensitivity made it seem like he had a huge stick up his ass! He was completely devoid of sympathy or compassion when here I am, getting ready to do one of the most difficult and scariest things I've ever had to do in my life, and just trying to be extra cautious in making sure I'm properly cared for.

Luckily, my Aunt Robin was right there with me and I introduced her to him. She watched the entire transaction we had, and after he left the room, she summarized her observations with what I consider the most perfect and appropriate conclusion, "He thinks he's God." We exchanged glances of validation, both disgusted with his aloof demeanor and in disbelief of his horrendous bed side manner. She had heard the stories of my previous experiences with him, and seeing it for herself clearly confirmed everything.

The next person to enter the room and speak with me before the procedure was the Anesthesiologist. She seemed very nice and upbeat, walked me through a series of questions, and indicated that she would do her best to care for me. Made me and my Aunt Robin feel a lot better after our ridiculous encounter with the surgeon just minutes prior. After I answered all of the questions, that was it. It was time for surgery! And I get the sense that they really wanted to just get this over with, because my Aunt and I had barely waited at all, and they did see us immediately after we had gotten there. Like I said, wasn't expecting to actually have the surgery done until 3pm. It wasn't even 1:30pm yet when they rolled me in to the operating room.

So that was that! They engaged in some light and playful conversation with me while wheeling me to the operating room & connecting me to everything, I didn't see the surgeon anywhere, just the nurses and Anesthesiologist, we laughed at a few jokes together, and before I knew it, I was out.

I woke up a couple of hours later, my throat, the primary object of my main concern, feeling fine, albeit very dry and tasting like burnt chicken, but to the rest of my body in excruciating pain. It felt like every muscle was spasming all at once, as if you were having a Charley Horse throughout every part of your entire body at the same time. It was a horrific shock to my system, and I didn't understand why or how it was happening immediately after the procedure. I was crying and calling out for help, trying not to hyperventilate as I couldn't risk hurting my throat, but it was a living nightmare. My Aunt Robin was called to return to me, and she was shocked and upset to see me in such a state. She tried her best to comfort me as I tried to calm down. I begged and begged for water, the nurses only gave me a little bit and insisted I would get more attention once I was moved to my room. They didn't really know what was happening except for one nurse who specified that she suffered from Fibromyalgia too and knew what this was like. The contracting of every single muscle at once and the violent pain it caused. She substantiated my claims with her own experience and they wheeled me to my room for the night.

My Aunt Robin spent the night with me and had to pull me up out of my bed every 20-45 minutes so I could use the restroom. I was in horrible pain, and my throat was the least of my concerns. (Quite contrary to what the surgeon said, over exaggerating how painful my throat would be!)  I felt completely incapacitated, immobile. I could move, but it was overwhelmingly painful to shift my weight into any position. I was inundated with the fear that any sudden movement would make my muscles spasm even harder, so I stayed real still for the majority of my time there unless I had to get up to use the restroom, in which I had to do so very slowly and carefully, be disconnected from everything and then have my Aunt Robin lift me out of the bed, I used the IV holder as a walking stick. I felt crippled and completely disabled. though very glad to have my Aunt Robin there helping me when the nurses were failing to. (She was a fucking rock-star!)

This was not the end of my problems. (But wait.  .  . there's MORE!)

Anxiously awaiting to have some fluids, I received my first tray of liquids. I was immediately upset to see so many things that I could not have because they were against my dietary restrictions and the specific instructions that the surgeon had given me. There were cups of Italian Ice in flavors Orange & Cherry. I am not supposed to have any citrus acids as first off, this upsets my GERD (acid reflux disease, which can cause acid to travel up my esophagus), and citrus will burn the wounds very badly, and the surgeon's clinic also told me I could not have any red dyes as they can stain the surgical site and make it appear bloody as if it is not healing correctly. They had given me Cranberry juice, which is HIGHLY acidic, with a hot soup and cup of hot tea. I was instructed not to have any hot foods because the temperature can damage the wounds, causing them to bleed. They had also given me a bag of Mint Tea! Mint can open the sphincters in the esophagus, allowing the acid to travel up through the throat more freely, and if ingested after this type of surgery, it would immediately sting and irritate the newly cauterized tissue on the back of my throat! Are you fucking kidding me!?

I told them very adamantly that I could not have a majority of the items on my tray and that they needed to replace them with items that adhered to my strict dietary requirements. After a while, they did return with some sugar-free tropical fruit gelatin, some apple juice and Chamomile tea. (I had to add that I am also on a very low sugar diet since I have to maintain my blood sugar and weight with all of the medications I take. This should also already be in my file as I have previously discussed it with them.) I even handed them a copy of the dietary requirements that the surgeon's clinic gave to me so they could update the system and make sure that these mistakes didn't happen again.

Did that prevent them from happening again?

.  .  . NOPE!!!!

Later that night, they had given me another tray of liquids with several items I could NOT have AGAIN! The Mint Tea was back, more Cranberry juice, and Orange flavored cups of gelatin! I had to tell them to return everything again and bring me back new liquids!

Mind you, during this time, my Tylenol (the only pain medication I can safely take throughout this entire procedure and recovery process) is starting to wear off. I was told by the Anesthesiologist that she would administer some after I woke up from the surgery, and that she would schedule it to be administered again at 8:30pm.

As I felt it wearing off, the pain started becoming more noticeable throughout my face, neck, and jaw, so I told the nurse. At first, she said I'm supposed to receive Tylenol in tablet form. My Aunt Robin and I were like "Hell no!" The whole reason I was hospitalized was so I could receive it intravenously. So she goes back to figure out what's wrong and says there was a mistake on my chart.(Duh!)

Meanwhile, we're still waiting. She comes back again and says the Pharmacy hasn't ordered it yet, so it's not available! Even though we were expecting it to be ready by 8:30pm!!!! (Ask any medical professional, you're NOT supposed to chase the pain!)

I patiently waited and asked to take my regularly prescribed medications as well. The nurse told us that the attending physician said I won't be taking any medications tonight, I can take them when I get home.


I had already very carefully instructed the surgeon's clinic that I would need ALL of my daily medications to be given to me! I cannot skip days! It's too dangerous for me to skip any of my medications, and I had listed all of my mandatory medications and explained the dosage I take of each with the nurses at the Pre-Op appointments. They took notes on everything I said and added them to my file. If I don't take my psychotropic medications, I can literally have insomnia for days and then become Manic/Psychotic. (which was literally one of the biggest risks we were trying to avoid!)  If I don't take my birth control, I will bleed intermittently throughout the month or have a very painful period (which I did NOT need on top of the pain from this surgery!) And if I don't take my iron supplement for my Anemia, I can become very faint and dizzy, which is especially unsafe after surgery! Skipping days is NOT an option for me! 

After I demanded that taking my medications is NON-NEGOTIABLE, the nurse contacted the doctor and finally got the okay to give them to me. I did not receive them or the IV of Tylenol until almost 10:30pm that night, two hours later than I was supposed to have.

I got almost no sleep that entire night. I shared the room with another patient, and our IV machines kept going off, beeping, at all odd hours. It would take the nurses several minutes to come stop them! Once it took over an hour! I managed to fall asleep for 5 minutes, only to be violently awoken by one of the IV machine's alarms going off for more than 45 minutes before the nurse came to stop it! It was sickening!

I asked the nurse if she could give me a higher dosage of my prescribed medication to help me sleep. She said it was too late for the doctor to answer her call, but she would try contacting him anyway. Sure enough, he never answered.

I had brought all of my medications with me just in case, but they directed me not to take anything against the doctor's orders, which is a mandatory regulation, true, but all of my prescriptions are given to me at my own Psychiatrist and PCP's orders, so I've been taking them as instructed. Regardless, I wasn't allowed to.

Therefore, I could not fall asleep until after 4am, and it was a very light, in and out like sleep for about 3 hours. I woke up still in a ton of pain and very thirsty.

Once again! They brought another tray full of liquids I was NOT SUPPOSED TO HAVE!!! More Orange and citrus flavored cups of gelatin, the fucking Mint Tea for a 3rd fucking time, and the hot soup! At this point I was livid! I had already given them the list of foods that I was not allowed to have! And they still got everything all wrong!

I had to wait almost an hour or more for the soup to cool off before I could try it, and I think it was supposed to be a Chicken or Vegetable Broth, but it tasted like there was some kind of Cayenne Pepper or spicy seasoning in it, so I could feel it tingling/irritating the back of my throat! I had to wait for them to replace my gelatin cups and tea before I could really drink anything. And though they gave me about 6 cups of apple juice, they were so high in sugar that I only drank one! They told me they really didn't have many sugar free options available. (So what the hell do they give Diabetics then?)

Here I am, this woman who just got out of surgery, can barely walk, am in a ton of pain, am extremely sleep deprived, having no choice but to advocate for myself again and again as they keep making ridiculous mistakes! I'm the patient! The one that's supposed to be taken care of, and I'm fighting for my own safety and well-being! WTF??!!!

Fortunately, the 2nd day was much better. My day shift nurse was very friendly and on top of everything. And they ended up sending the Head Nurse to our room because the patient next to me also had some issues with the nurses taking care of her. I told her everything you've just read, and she was very sympathetic to my concerns and apologetic.

She brought up my file and showed us that in fact, all of my medications and health conditions were listed right there, as I had already informed the hospital not only last year when this procedure was originally scheduled, but twice last week to update the information! She said there was no reason the doctor shouldn't have given me my medication as I instructed.

She apologized for the nurses having a "bad attitude" and making us wait so long for them to attend to us or the machinery. She said that's their job and there should have been a faster response time.

However, she said that my surgeon never made a note of indicating that my diet was to avoid red dyes or citrus, which is why the cafeteria kept sending the wrong fluids to my room, so they had to enter this into the system manually because he had not done it himself. What the hell!?

My Aunt Robin and I had told her about my horrible experience with waking up from the surgery in so much pain, and the Head Nurse admitted that this has happened to her before as well. She explained that several years ago, she gave birth to her child through a C-Section, and that her entire head/neck locked up in painful spasms. They sent a Neurologist to evaluate her and couldn't figure out what was wrong, so they dismissed her completely. She said it's a very rare phenomenon that can occur after surgery, and it took about 4 days for it to wear off. This validated what my Aunt Robin had Googled, and my foster mother also admitted that this has happened to her after each and every single one of her prior surgeries, because like me, she lives with Fibromyalgia. The Head Nurse said that she does not have Fibro and this has only happened to her once in her life, but she said she felt grateful to have met me because though she was sad to see me in so much pain, this was the first time in her life she had met someone who had been through the same nightmare, and that made her feel understood. She thanked us for candidly speaking with her and said she would definitely report all of our concerns to management.

Later, the Physician came to meet with us before I was discharged, and he further confirmed the phenomenon I went through. It's called "Post-Operative Myalgia" and occurs due to a substance called Succinylcholine, a muscle paralytic that is administered during the Anesthesia process to prevent you from waking up/moving during the procedure. It basically causes all of your muscles to contract at once, and the after effect for some people is intense pain/spasming once you wake up from the surgery. The term "myalgia" translates simply into "muscle pain," so my educated guess here regarding both my own and my foster mother's experiences is that this may be inevitable for people who live with Fibromyalgia, as we are already prone to muscle tension, pain, stiffness, and cramping on a daily basis. The Physician explained to us that most doctors are not familiar with this risk unless they were trained as an Anesthesiologist, which he had been.

Upon doing further research, I discovered a peer reviewed article from the year 2000 that said this phenomenon is still not understood or well known, even though we've been utilizing Succinylcholine for over 40 years. Therefore, I don't think I can be angered or upset with my Pain Management clinic or Rheumatologist for not warning me, because I honestly think they didn't know this was a risk factor. Though once I'm fully recovered, this is a conversation I will have with them. They need to be aware so that they can warn others!

But I am saddened that I did everything in my power to educate and prepare myself for all potential risks, I was hoping for the best, prepared for the worst, and this threw us all for a loop. Was not expecting this at all.

The Physician finished speaking with us, was very kind and supportive, and discharged me late Tuesday afternoon. I've been home ever since, and it has been a very slow recovery.

Like the Head Nurse mentioned, it has taken 4 days for the substance to wear off. I was in horrible pain throughout my entire body for the whole week until today. I could walk just fine once I was up, but moving around, shifting my weight, or trying to lift myself up out of bed was a very difficult task. I felt so crippled, I'm glad to have my mobility back, though I feel very weak and fatigued now.

Because I'm home, I'm able to take as much of my prescribed medications as needed and rest without interruption, so I've gotten much better sleep, which has been desperately needed. 

My throat seems to be recovering fine. The wounds look how they are expected to, healing with a white membrane surrounding them, though it is very painful for me to speak, so I avoid doing it. I also cannot eat solid foods yet, I've been subsisting only on Pedialyte, Koia protein shakes, water, and ice cream, all preferably as cold as can be. I've already lost 10 pounds, which I guess I knew would happen. I'm very hungry and can't wait to eat some mashed potatoes and a cheese burger, but that may take another week or longer.

I still cannot take any Ibuprofen, though that is my pain medication of choice, because there is still a risk of bleeding until the wounds are completely healed. So I am only using my Maximum Strength Arthritis Tylenol which my Rheumatologist suggested my Pain Management Clinic prescribed. It's doing the best it can, which isn't much, but it's all I have I guess.

But though I am doing better today, please don't misinterpret my words and think that I'm "okay." I am NOT okay. It has been a grueling few days, I have been miserable and suffering, all for reasons that could have been avoided. I am so outraged that the surgeon and hospital were not in proper communication on my dietary restrictions and medication regimen. I am so angered that they would not listen to me even though I clearly laid out of the instructions to care for me. I am furious with all of the mistakes they made and all of the added stress they have caused me that was NOT necessary! I will definitely be filing my own complaint once I am fully recovered.

For now, I'm NOT okay. But I am channeling my anger and frustrations into good, in hopes that I may prevent these types of errors from taking place and hurting others in the future.

Thanks for Reading. <3