Yesterday had a bit of shock in it, I went off to see a sinus specialist and I’ve been booked in for surgery! Sometime in the next three months the hospital will call and arrange the date. That does make it quite difficult to plan for. I’ll be having septoplasty, ethmoidectomy, antrostomy, and tonsillectomy. The first three are surgery on the structures of my nose, hoping to improve the functioning of my sinuses. The last I’ve already had as a child due to severe and chronic tonsillitis, but enough tissue has regrown that I’m getting bouts of it again frequently.
I wake up most mornings feeling like someone has punched me in the face. I’ve never had troubles with my sinuses until 2 years ago, when severe facial pain was misdiagnosed as TMJD (pain due to tightness in the muscles of my jaw) – which I also suffer from chronically. Unfortunately, in that case, I actually had an infected tooth that had developed into an abscess. The infection went unchecked for long enough that it breached through my gums into my sinuses and caused a severe sinus infection. I was very, very sick and in terrible pain! Fortunately my doctor became concerned and ordered a cat scan which revealed the problem. I went onto steroids and antibiotics for the infections and had a root canal on the dead tooth.
One year later and I’m getting constant sinus infections. That winter my immune system crashes and I develop along with sinusitis, laryngitis, tonsillitis, bronchitis, and severe inner infections in both ears. I am profoundly ill for three months, and in recovery for longer.
Two years on and I’m suffering severe anaemia due to unmanaged endometriosis, chronic facial pain, and constant low grade sinus infections with the occasional flare into a full blown severe infection needing antibiotics. The structure of my sinuses has been altered so they no longer drain, despite treatment with steroid sprays we can’t make the chronically inflamed and swollen drainage do it’s old job. So sinus fluid stays trapped in my face, as stagnant ponds ready to host the next infection.
Fibromyalgia for me has brought with it not only a fragile liver that no longer processes many common medications I used to handle fine, it’s also shut down my mucous producing cells. This means things like – I don’t produce enough saliva, and without sufficient saliva to protect them, my teeth decay at many times the rate of most people. So there will be a lot more dental work and infections in my future. An average year for me has between 5 and 11 new caps and fillings applied to my teeth, under minimal anaesthetic. With this in mind and the potential for chronic tooth infections to be travelling into my sinuses, the specialist was unhappy about proceeding with any more conservative approach and booked the surgery on the spot. I’ve also been advised to avoid extraction of any top jaw teeth at all costs and continue to use root canals as the teeth die,as any extractions risk creating holes into my sinuses where infection can travel from my mouth.
I’m off tomorrow to a TMJD specialist dental surgeon to discuss the role that TMJD is playing in the chronic pain, and for a specialist opinion about shadows on my xrays that may be chronic infection at the roots of my teeth, or may be merely scar tissue from previous infections. Obviously you handle those situations quite differently, so it’s important to assess them correctly.
All very well and good, but the last times I’ve had minor surgeries, things have been pretty rough. One was the extraction of 5 teeth and a salivary biopsy. I wound up with no pain relief after 24 hours as I was psychotic as my liver began to break down. The pain was intense as stomach acids ate into the 6 wounds in my mouth, the vomiting caused by allergic reactions to the pain relief. I remember sobbing on the floor thinking that if childbirth was going to be worse than this, the vivid feeling of biting deeply into red hot coals, then I would never be able to be a Mum.
Another surgery was supposed to be day only but I wound up in hospital for a week with allergic reactions to the anaesthetics and everything else. It triggered a major fibro flare that saw me into a wheelchair for mobility for a long time.
So, I’m nervous! This could be great, I am very frustrated by being constantly sick and run down with chronic infections and pain. On the other hand, I am probably in for some pretty bad pain, allergic reactions, and possibly another med induced psychosis. The breezy 10 day recovery time suggested in the literature may extend considerably for me. And the whole hospital experience is one I find pretty traumatic.
The plan is to keep my inner kids away from the whole experience as much as possible as they’re scared. With the exception of the 12 year old who is the only one of us who handles hospitals. Rose will take a couple of days off work once we come home, and we’ll plan for the possibility of an extended hospital stay if it’s needed. Apart from that, mindfulness, being present, managing the anxiety around possibly getting very sick again, and spending time doing fun things with friends. Focusing on healthy eating and exercise with the idea that the better shape I’m in, the better I’ll bounce back from the surgery, and continuing with my business plans. I’m so lucky to have friends and family who care about me, it makes such a huge difference to handling scares. I won’t pretend I’m not spooked and in need of some extra love – cuddles from Rose, dinner with Mum, killed a lot of zombies with my sister last night (Left for Dead 2, best game ever!). But I’m also determined not to let anxiety cloud my days and steal my joy. Life is still good! Carpe diem. 🙂
4 thoughts on “Booked for surgery”
Having surgery since I have DID is sort of nerve wracking for me, I never have any idea what will happen next. I’ve learned to tell Drs. about my DID beforehand, especially the anesthesiologist, considering it really freaks everyone out when I just wake up suddenly on the operating table after a switch. Having to do that much education with someone who is already in the medical field is a pain also, since most anesthesiologists here haven’t been taught a lot about it and don’t really have much of an idea what I am talking about. I especially dislike it when I get one who thinks he knows what I’m talking about but doesn’t, but won’t listen to me when I try to explain what could happen while I’m out. I also wake badly from the anesthesia, depending on who all was affected by it. Once I punched a nurse in recovery because I very much felt she needed to give me some water and she wouldn’t. They strapped me down then, which was very aggravating and frightening. Not trying to scare you here at all. These have just been my experiences and I’m sure yours will be unique to all of you of course. Just saying, it is an ordeal every time, and I hope it goes incredibly well for you and you feel so much better afterwards. Keep the faith and good attitude you have going on, it will most likely help you heal better after surgery. I wish you luck and good health.
Hi Samira, Yeah DID and surgery can be a horrible mix! I’m sorry to hear you’ve had such a rough time of it. 😦 I’ve had a few surgeries and so far I’ve found if I can help the 12 year old to stay present things run much, much more smoothly for us. We don’t handle anaesthetic well either, take a long time to come round from them, really scares the hell out of a lot of us. I’m hoping that with support from Rose and friends I won’t need to talk much about the DID with the various doctors – it shouldn’t impact their work much and I don’t expect useful support from them. Fingers crossed, anyway! 🙂 Thanks for writing 🙂
Hi Sarah, I have just read this blog post and my heart goes out to you. You have been and continue to go through so much. Good luck with your surgery and I hope you find some relief and answers. I know you have probably tried so many things but I could identify with a number of your symptoms including the fibromyalgia, chronic pain, teeth problems and immune system issues. While I did not have endo I did suffer very painful complications for several months after a miscarriage and this was followed by infertility. I was lucky enough to find help via a wonderful Naturopath/Chiropractor/Kineseologist in Adelaide. He specialises in immune system issues and hormone imbalances. His name is Dr Eric Pierotti. I only share this as it may help you and I have been so grateful for the help and improvement in my health that he has given me :). Honestly I feel like a whole new person and am the healthiest I have been for almost 9 years :). All the best and take care xxx
Hi Libby, thanks for writing, I’ll check out your chiro 🙂 I’m sorry to hear about your health problems and loss, that’s so painful. 😦 Take care too xx