It is because of this organization of because of you all that I was able to do my homework, research and get my 3D images seen. I have been heard and I officially have my bi-lateral ES diagnosis. I’ve been referred to an amazing surgeon here on the East Coast (Charleston, SC) is my location. I’ve agreed to meet with him but if he has not yet performed this procedure, I do not plan to be his first. I will then plan to be referred over to Dr. Hackman in Chapel Hill (4 hour ride)
Upon speaking with my ENT today, she was thankful for the knowledge I brought to the table. She spoke with the radiology office and they now know how to order these 3D images. So the news is spreading and you guys are the reason! Thank you to each of you that reached out and helped!
This is cause for much celebration @annaleighm! I’m so happy your ENT was open to listening to you & viewing your 3D images. It’s so great when doctors are willing to learn from their patients!!
Please let us know how the appt goes with the surgeon. Dr. Hackman is for sure a good choice if you decide to have him do your surgery.
That’s great to hear, & well done you for not giving up, advocating for yourself & for educating the medical profession where you can!
If you haven’t seen it, we do have a list of questions we suggest members ask a doctor if you don’t know how much ES knowledge & experience with surgery they have:
How many ES surgeries have they done and what was the success rate?
Whether they’re 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 the styloid is only shortened a bit it can still cause symptoms.
If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
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.
Will it be a day case surgery or will you need to stay in?
Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
What painkillers will be prescribed afterwards.
Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
Let us know how you get on with the local doctor?
