Hey friends. I’m struggling and don’t know where else to turn, to be honest I feel like I am talking about symptoms/surgery too much with friends sometimes. My ES surgery on the 19th makes the 3rd surgery in 3 years. This does not count any surgeries and medical tests I needed as a child (I can go into more detail if desired). With everything I’m learning about my body, I suspect there are two more on the horizon (R styloidectomy and nasal surgery to correct sinusitis). While it’s great that I live in a place I can get the medical care I need, I’m not looking forward to multiple surgeries.
In addition to the surgeries, I’ve recently found out I have a genetic condition that should have killed me before 10 - I’m 23, and now makes me much more susceptible to infection than the average person. I am trying really hard not to catastrophize or look too far ahead. But it’s hard. Honestly not sure what I’m hoping for with this either, maybe just having it out there will help.
So sorry that you’re dealing with all this, at such a young age, to have had that many surgeries already. Feel free to talk to us on here, we do understand, & are happy to listen! It must be hard as I guess your friends probably can’t really understand…Given the current virus situation, I’m sure that hospitals & staff are being ultra careful to avoid infections, which will help you.
Being young, hopefully you’ll heal & will recover quickly! I was really worried about the surgery, but it wasn’t as bad as I expected, & I think if you read how many people go on to have their 2nd sides removed, that should reassure you.
Sending you a long distance hug, & praying too 
Thanks Jules. Hospitals are definitely being extra cautious, the two big things are a required covid test no more than 3 days before surgery and not being allowed visitors in most cases. I’ve also been advised, due to my chronic sinus issues, to call for antibiotics if needed before surgery.
The second side stories help. Coupled with recognizing that my right side is probably causing symptoms that I’m just not focused on due to my tendency to hyperfocus. Mom’s trying to get me to process that with these surgeries I could be off the ice (not seriously training) for another year as we sort this out, between my love of the ice and being autistic it’s not really sticking.
Thank you for the hugs and prayers.
You’re dealing with autism too? You’re amazing! what mountains you’ve climbed, & so hard for you to be off the ice if it’s something you really love…
Anharris, This is just a note to say that I’m thinking about you. You can do this!
Wow Anharris, you are a champ. Any average person without your additional challenges would struggle with all this. I went thru a narly chemo for 6mths that required 3 blood transfusions and at the end of it fell and had to have a total rotator cuff surgery, then 6 mths later rolled my ankle in a pothole and tore completely 2 ligaments requiring another surgery and use of a scooter. I will never forget the 1st week after that surgery when I had to crawl up the stairs to get to my bedroom. I was so beat down and tired. I literally laid halfway up the stairs on a landing and cried. One step in front of another. I did what I needed to do. It was hard but you make it to the other side of all this and recover. You will get your life back. It may not be as fast as you want. Ive learned to look at these challenges life puts in front of us as “personal growth experiences” and what doesn’t kill you, makes you stronger. These challenges will form your headspace and approach to life, for the rest of your life and you will be for the better because of it. Only those that walk this path truly understand what you are going through and what you are feeling. Hang in there! yo will make it thru this.
Snapple,
Sounds like you went through the ringer! I’m glad you got through it. My last surgery (2018) was for torn ligaments, but thankfully everything in my house was on one level then.
Jules,
I was officially diagnosed in 2017, but we’ve had suspicions most of my life. The ice has been my escape since I was a child, it’ll be hard not to push myself back too fast.
Update: surgery went well, Dr. Omlie was pleased with the results and thinks it’s highly possible my symptoms were caused by the styloid + as he put it well defined muscles. I’m home and resting, the inside of my cheek is still quite swollen. Not sure if this is from surgical trauma or bc they used a drug I am allergic to (mild rash, swelling, and numbness to the area long after typical) to reduce post surgical pain. Regardless, I’ll be adding that to my already impressive list of allergies in my chart, and taking off anything that I can watch for so future stays are not as difficult for me to eat.
Anharris. I think a lot of sinusitis that I had may have been inflmmation or irritation from my styloids. If you still have it after this surgery and have a choice over thecother styloid or sinus surgery, I would clear out the other styloid before choosing sinus surgery. You might not need a sinus surgery after. I had sinus relief or what I thought was sinus problems relieved after both my styloids were removed. You are a true survivor.