ES surgery update

Dear everyone

It has now been two months since my intraoral styloid process dissection. Bilateral: 1cm off each side. Surgeon found that my left tonsil tissue were damaged by the styloid process causing inflammation and compression of cranial nerves in that area.

There is no elevator pitch for this one. This have been the trial of my life.

Surgey pain were awfull for a long time. A mixture of tissue healing, muscle and nerve pain. Some days my nerve pain was even worse than before surgery. Jumping out from a very large building seemed very compelling at times. So my recovery has been very unpredictable and for a long time I did not feel sure of the outcome. For a long time I had very bad nerve pain when yawning. As if the styloids new edges were cutting themselves into the surrounding tissue. This were terrifying and very painfull.

3-4 weeks after surgery I began sensing that I felt better. Still nerve pain on and off, but better than before. I keep a pain journal, and as I read backwards I could verify that my ES symptoms actually had decreased. One month after surgery I were still on pain meds: two diclodan, two pinex og and one oxynorm. But by that time I went completely off my nerve pain med, Gabapentin. I figured that I could always go back on it, if nerve pain became unbearable.

Just as I thought that I were getting all well and better I had a pain relapse for a week. Glossopharyngeal neuralgia, as before surgery. Shooting unbearable pain from left side back of tongue.
I then read a medical article stating that morphine meds could make nerve pain worse after long time usage. So I decided to try to go off my Oxycodone to see if it affected my pain. And it really did. My nerve pain slowly decreased again.

I am not a 100% pain free and may never be again. The glossopharyngel pain flares up now and again. But it is usually brief and random. Sometimes a few times a day… sometimes a little more. I still have the lump in the throat sensation, but it is different now. Not sharp and cutting. more like muccus build up. I know that this is nerve related to. It might lessen in time or it might be permanent nerve damage. I still have occasional nerve pain in my nostrils. Brief and random like in my tongue. Every day I have little nerve related reminders of my ES. And some days I am really sad about it still.

But I have to compare all that to how I felt like dying every single day before surgery. I never feel like that anymore.

Surgery has really worked out for me!! I am feeling much better and almost cured. Some days I feel back to about 90% normal. On theese days I feel blessed and lucky. I am enjoing my kids, cherishing every single moment with them. Living life again. Working again. Laughing again. I would do it all over again NO doubt about it.

I am so thankfull that I had a great ENT and a skilled surgeon. And I am thankfull for having thos site to turn to when it all have seemed hopeless and to painfull to go on. It has made huge difference to me that you are all out there and to meet understanding and emotional support. Talking to you - reading your different stories and symptoms has also been a great motivation to go get this surgery!!! Thank you!!

The sum of it all right now… status quo is that … most of the time I feel terrific. I LOVE my life. I feel so lucky. Even with the remaining nerve pain … I feel reborn.

Hopes and best wishes to all of you.
Eagle Rose

Eagle Rose who was your doctor, I am updating Spreadsheet