Hi I am a newbie at ES. Ear pain for about a year eventually referred to ENT and ct scan. Surgeon suspected ES from start stolid measuring just over 5cm. From all the advice in here I realised I have other niggles like neck and shoulder pain headaches etc. I am due back to see surgeon this week and been told it was up to me if I wanted surgery or not. Still cant decided if want to go through with it. Mainly looking for advice on questions should ask surgeon. He has never done ES surgery but is a skull and neck surgeon usually dealing with neck tumors and spinal issues. I dont have option of going to london to some of the well known surgeons due to it being 7hr train ride and having 2 small kids. Any advice on what to ask appreciated x
As for whether or not you have surgery, it’s a personal decision- there are risks with the surgery, but equally leaving the styloids in can damage nerves, & it’s not going to go away, surgery is the only real cure. I left having surgery for a while as the pain was bearable, & I felt the risks of surgery didn’t outweigh the pain I was getting. But things worsened so I felt I had no option but to have it done.
I would normally say only have surgery with someone experienced, but if that’s not an option then a head & neck surgeon isva very goid bet. It may well be that he’s had to remove styloids to get to neck tumours; yiu could ask that.
A good start is whether he’s going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection. You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If your stylohyoid ligaments are calcified, then any calcified section needs to be removed- do you know when you were being diagnosed if the ligaments are calcified?
There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
If you search for what to expect after surgery, it’ll give you an idea about recovery too; have you got someone to help with the children afterwards, as you will need to take things easy?
Hope this helps!
Thanks for the advice. He is only prepared to to do it externally for the reasons you mentioned. Never considered that there may be further nerve damage by leaving it. More to ponder x
Jules has offered you great advice. It can be a tough decision about surgery. It does take about 2 mos post op to get your energy back & start feeling more normal. That said, it’s worth it if your pain/symptoms are stopping you from being able to be a good mom, wife & live your life freely. Mine got to that point. Pain became my reality & so I looked forward to surgery to stop it. Though I’m not 100% symptom free, I’m good enough to live my life as I did pre-ES & what’s leftover is a simple reminder of how far I’ve come.
We are here to encourage & support you, whatever you decide.