Hi everyone, I would be greatful to hear of successful stories for those who have undergone intraoral surgery, as well as external surgery.
I have been suffering with ES symptoms for the last 8 months and my pain has flared up over the last week. I have found a good surgeon here in Australia who has performed ES internal surgeries (do not know the number, but will check). I have been unable to find anyone I am comfortable with to perform external surgery and quite frankly such surgeons are very limited here.
I have elongated styloids bilaterally with my left side being symptomatic but no calcification of my ligaments. The surgeon is proposing to remove as much of the styloid as possible as close to the base of the skull along with my tonsil, but will not be removing the ligament. Is that an issue?
The other alternative would be to travel to the US and self fund external surgery which I have not ruled out but will need to wait a few months before I am in a position to do so.
Your thoughts and experiences will be appreciated!
I know that the external surgery seems to give better access so potentially has better results, but there have been lots of members who’ve still had successful surgery with intra-oral, so it sounds like the best bet for you. The ligaments only need to be removed if they’re calcified- mine weren’t, so only the styloid processes were taken out. If yours aren’t, then no need to worry! If you’re surgeon is going to remove as much as possible & thinks he can get close to the skull base, that’s great!
It is weird how the pain of ES can suddenly ramp up for no known reason; hope yours settles soon & that you feel comfortable with your decision. Best wishes!
I know that you’ve been really careful in trying to find the best surgeon, just wondered if you’d be interested in our Mod Support’s input - Is surgery controversial?
The new technique he mentioned I think is on this research article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4379291/
I don’t know if you’s feel comfortable raising this with your doctor?
Thank you Jules, really helpful and I will discuss this further approach with my surgeon. I think I’m overthinking this in some ways but want to be comfortable in the procedure as I know some members have had ongoing symptoms following the internal approach.
Comforting to here that you also did not have your ligaments removed as they were not calcified and feel that I might now go ahead with doing it. I will ask my surgeon a few more questions including checking how many surgeries he has actually done.
A few more questions, if ok?
Do you think that the tonsil needs to be removed? My surgeon is saying it he wants to remove it rather then working around it.
Have found another surgeon who is a cancer head and neck surgeon. His experience is that he leaves the tonsil intact but said he only shortens the styloid to normal length which I’m not comfortable with but must say appealing not to have the tonsil removed because heard it is quite painful!
Also, I had a CT scan without contrast which showed elongated styloids. I’m thinking I would want to have another one with contrast just to see if there is impingement on arteries etc so I can have an understanding of the whole picture. Do you think this would be helpful?
Thank you Jules, really helpful to have your input!
I agree from reading other’s experiences on here that having the tonsil removed does seem to add to the pain post-op, but it does give more room for the surgeon to move, & therefore get more of the styloid out… you could ask him about the new technique mentioned in that research article, as there’s no need to remove the tonsil where they go in. But that might offend them? Depends how approachable they are? The other surgeon you mentioned doesn’t sound as good a bet if he’ll only shorten the styloid to ‘average’ lengths- if the styloid is wide or angled it could still leave the patient with symptoms. & what average figure would he use? There’s no agreement on that, it varies between doctors!
As for the CT with contrast, it would give a fuller picture but if the surgeon hasn’t asked for one & is happy to operate without, then you would be giving yourself an extra dose of radiation- you have to weigh up whether that’s worth it for your peace of mind (or not, if there was much vascular involvement? Would that worry you more? For me, knowing there was definitely compression of the jugular veins made the decision to have the op easier; I wanted them out!!) Also I don’t know if your system is like the UK’s- it’s quite a wait for a CT, & then again another wait for results, on top of the wait for surgery as well; do you want it to delay surgery any longer? There’s no right or wrong answer with this, it’s your decision! (sorry!)
I hope this is helpful!
Hi Jules, I tried sending you a message a few days ago but seems like it did not go through. I wanted to say thank you, i have found everything you have said very helpful and comforting in moving towards making a decision. Thank you!! ️:bouquet:
You’re welcome! I got lots of help from this site when I was first diagnosed, so it’s nice to pass it on! (To send a message, you click on the persons icon, click on the message tab which pops up, then after you’ve typed your message you have to click the send tab at the bottom.)
️:bouquet: