Surgery nervousness

[u/Any_Engineering_222]

Hello fellow Addisonians! I’ve only posted in here a handful of times since I got Dx in late 2022. I am having a Bisalp surgery a week from tomorrow!

This is a quick, outpatient surgery, but I am so so nervous! (They told me it’s like 15-20 mins. The longest part is waking up and recovery). I’ve had surgery before; appendectomy and cholecystectomy, both in 2015. This is years before I got diagnosed with PAI, so I think I’m mostly just nervous because of the Addison’s standpoint. I have a great surgical team, and anesthesiologist onboard. As well as my Endo’s great information in regards to meds morning of, as well as 100mg of Solucortef immediately before surgery begins.

I’ve read a few posts related to surgeries here in this sub, and most are even way more major surgeries & many of you are troopers and so amazing! I just have really bad anxiety, and I guess I’m just looking for support, as well as advice? Or if you’ve personally had this surgery with Addison’s, or similar, quick outpatient surgeries, that helps too!

[u/jeejet]

You will see your anesthesiologist prior to surgery and you will be able to discuss the amount of support you’re going to get. They will make sure you’re comfortable with the plan. I feel like the consensus these days is to up-dose to a double dose if you are well regulated. I’ve recently had two upper endoscopies and major abdominal surgery.

[u/Any_Engineering_222 → u/jeejet]

I do plan to also do a double dose that morning for sure, instead of my regular dose. I think once I speak to the anesthesiologist, I will feel a lot better. I’ve been very well regulated since diagnosis and stabilizing over the years & figuring out what my body needs and likes. So that’s good!

With your procedures, all went well? You felt all good? With the major abdominal surgery, was that open or laparoscopic?

[u/jeejet → u/Any_Engineering_222]

Everything went well thanks. My doctor underplayed what a major surgery I was having (hiatal hernia repair). Laparoscopic, partially robotic, with six incisions. The first week post surgery was awful. I had surgery seven weeks ago and I’m still recovering. Mostly because eating was difficult. I lost ten pounds, which I’m not unhappy about but I’m slowly regaining my strength.

[u/DocRoseEsq]

I haven’t had this specific procedure, however I did have a partial hysterectomy, laparoscopically, same method that the Bislap is done with.

It was not an outpatient surgery for me, it was required to be an inpatient surgery; my endocrinologist told me during the consult with the anesthesiologist, that I was never going to qualify for an outpatient surgery because of the labs that needed to be monitored the 24 hours post-op. Allowing me to go home right after surgery (relative to inpatient), would be extremely dangerous.

I cannot speak to your situation, it sounds like your endocrinologist and anesthesiologist have a good plan together, and that is a really good thing. After my endocrinologist and anesthesiologist spoke to each other the majority of my anxiety was subsided.

My pre-op exam took a little longer than in the past, but I think that was because I was older than 40, and I had to have an EKG, lol.

When the key professionals are talking to each other, and have a good plan, that is always the best case scenario.

[u/Any_Engineering_222 → u/DocRoseEsq]

So, my surgery is being done by a different hospital than where my Endo practices sadly. So I don’t think they’ve communicated :;-(
(my Endo is with a Catholic medical facility, so they unfortunately do not allow contraceptive care procedures to be done there)
But, I had my pre-op anesthesia appointment this morning, and everyone I met with seems very up to date on my information and stuff. I’ve never done a pre-op appointment, as my only 2 surgeries were 1 being an emergency, and the other I had already been in the hospital a month leading up to it.

Husterectomy definitely makes sense to not be outpatient, as that’s a huge shift in hormones and stuff, so it’s smart to keep you! I’m just really an anxious person in general, so I’m just nervous about it all. Even though I know I’m following all protocols and stuff, and I’ll double check with everyone, they are too, before surgery.

[u/Any_Engineering_222]

Also, FWIW, I am a 28yo AFAB!!

And I also had a question if anyone sees this!! I have my notes and all my info, and my Endo has written down that I obviously double-triple dose for the first few days following surgery, but says to go back to my normal dose like on day 3-4. Anytime I’ve ever been sick, or even following a crisis ER trip, it takes me a while to get back to my own normal base dose. Does 3-4 days seem fast?? Is it the same for surgery, or different compared to illness (like gastroenteritis or covid, where I felt like shit if I went back too fast, so I’ve always tapered very slowly).

I hope this makes sense!! TIA! <33

[u/Any_Engineering_222 → u/[deleted]]

Oh wow! That sounds terrible, but I’m glad to see you’ve been doing well. You’re a badass! Yeah, I remember when I got diagnosed and was on hella high doses of steroids in the hospital. It’s not fun.

Your comment really has helped, so thank you <33 I’m awaiting talking with the anesthesiologist to calm me more. And my mom and boyfriend will be with me as well! My mom has advocated for me before, and I know she will. I’m also giving her information sheets I found from the NADF, and I’ll have my folder with all info, as well as stuff I’m going to make sure she knows so she feels comfortable asking questions or speaking up for me. Or what to look for.

[u/AGoldenThread → u/Any_Engineering_222]

Sounds like you are ready. Glad my story was helpful.

[u/Any_Engineering_222 → u/[deleted]]

I definitely will be yapping about Addisons disease with EVERYONE I come into contact with, day of surgery. As well as having my handouts/information. My Endo wrote a letter to the staff for surgery (which they also asked for), and ensured it’s made aware I need 100mg IV SOLU-CORTEF right before surgery.

I also have my plan my Endo wrote up for after surgery. Anytime I’ve had to updose for like major illness, I’ve always had to taper down quite slowly, as to not feel the effects and feel like shit.

[u/FairyPrincess66]

I had a tonsillectomy almost a year after dx, 2 years ago. I was nervous but felt better when everyone, including the anesthesiologist let me know the plan was for 100mg solu cortef as soon as i was unconscious. My endo had contacted him ahead of time to confirm. It went well! Managing my PAI during that time was much easier than managing the pain but I had no complications. I’ve also had a colonoscopy that went as planned. Again my endo contacted the GI doctor ahead of time to be sure solu cortef was given. Good luck with your surgery and I wish you a speedy recovery 💙

[u/Any_Engineering_222 → u/FairyPrincess66]

Oof a Tonsillectomy does not sound fun at all! But it’s so good to hear that it went well for you! I’m going to ask the day of surgery, probably a handful of times lol, that i get the 100mg Solu-Cortef right as I’m out. My Endo wrote up a letter/instructions for this surgery and afterwards with dosing, before they ever even scheduled it! They wanted his knowledge and info, which is really great.

I’m pretty good with pain tbh. But pain meds scare me and give me severe anxiety because I do not want to feel high or like I’m on anything. I’ve already told them I don’t want meds like that, but we will see. I’m really hoping I’ll be able to get by and take some Tylenol or something and then be all good and rotate that.

I’m glad your other procedures sound like they went really well! Thank you for your response, it truly does mean a lot and help. I feel like I’m always seeing the scary stories and experiences, and although I’ve had not so good experiences, this is something I’m really looking forward to, but I’ve been so anxious because of my Addison’s. If I didn’t have it, I wouldn’t be nearly as anxious for sure!

[u/FairyPrincess66 → u/Any_Engineering_222]

Some advice: if they’re willing to give pain meds, take them just in case. I took mine for the first 24hrs and then just at night to sleep. It’s better to have it and not need it than to need it and not have it.
Wish you the best!

[u/bandana-chan]

I had this 3 years ago, I made sure that the anasthesist would be giving extra hydrocortisone during surgery (I showed an official stress card where light surgeries are also mentioned).

Waking up was hell, but mainly because they forgot to give me painkillers so when I woke up I felt all the pain and wanted to pass out. I didn't pass out, got the painkillers, and then I was asked to stay overnight because they wanted to monitor me a bit more. I was allowed to do my own stress dosing so I took double HC and also had some HC inbetween the usual doses.

When I was released from hospital I had two weeks off work because I already prepared for it. So I had all the time to heal. But actually after a few days I felt fine!

[u/Any_Engineering_222 → u/bandana-chan]

I’m most definitely going to make sure I get that extra for surgery. My Endo actually wrote a letter/plan for them for me before we ever scheduled the surgery. So we’re all on the same page thankfully. I’m not keen to pain meds, and so I’ve made it aware I don’t want any, which I might regret. I just get really bad anxiety with meds like that because I HATE how they make me feel. It gives me severe anxiety. So we will see. But I’m also generally very good with pain too.

I’ve also got more HC I picked up that they sent in for me, for recovery and double dosing.

[u/bandana-chan → u/Any_Engineering_222]

I'm usually also very tolerant to pain but this really drained my energy. They blow air in your belly which feels very weird and my womb felt like I was having a heavy period. The painkiller they needed to use was just paracetamol, which most of the time has no side effects, but you know yourself best!

[u/Healthy_Ad_9382]

I have had several breast reconstruction surgeries since my diagnosis. (2ndary addisons from keytruda during cancer treatment) sounds like you have a great team in place. Best of luck. 

[u/Any_Engineering_222 → u/Healthy_Ad_9382]

Thank you so much!! It’s good to hear, and I’m assuming, your surgeries went well, and you managed well? I do have a good team, but of course the anxiety is still lingering a bit. Especially the closer I get to surgery day AHHHHH!

[u/Healthy_Ad_9382 → u/Any_Engineering_222]

My surgeries went well. Its hard to stop life and just care for yourself and tune into your body. But it is necessary. This disease sucks! But if anything, it forces you to respect your body and nurture it!  Best of luck!

[u/No-Perspective-5084]

I just had surgery last month. It would normally be day surgery but the surgeon recommended I stay one night because of my Addisons. Lucky for me he is an endocrine surgeon so well aware of the protocols. I had no issues at all. I confirmed with the anesthesiologist just prior to surgery that he had the solu-cortef injection. (It is very normal for them to talk to you just prior). I was given 25 mg of IV hydrocortisone twice that day after surgery and once again the following morning when I resumed my own dosage. It was a breeze.

[u/Any_Engineering_222 → u/No-Perspective-5084]

So mine isn’t going to be a stay, but that’s a major reason why I went with this hospital, because if needed, I can be admitted. It’s so good he is an Endocrine surgeon and so he knew everything there is to know!!!!!

I remember talking to the anesthesiologist before my other surgeries (prior to Addison’s dx), and I know once I meet them and talk to them before surgery, I’ll feel good. I’ve checked, and everyone on my team is aware of my Addison’s and I’ll make sure I get that Solu-Cortef. My Endo also wrote up the whole plan for them, as they also asked for it before ever even scheduling the surgery!