Appt with doctor is today- surgery discussions

I would love to know the nitty gritty truth about the risks. I know it is a major surgery, especially when not done by the specialist y’all talk about. So, obviously using another doctor is a risk itself, but just as a general rule- what is the likelihood of mortality with the bone being so close in proximity to veins, the carotid, and nerves? How many have had negative experiences and wish they would have never had the surgery done? I am one of those people that like to know EVERY THING and I have been reading everyone’s post and this blog is so much more educational than google!

Hi Dysonsmom -
Nitty gritty here we go! First off, the more experienced doctors we advocate on this site are not “the end all”. There are many gifted surgeons in this country who may or may not be familiar with ES. Any well practiced skull-based, ENT, or head & neck surgeon should be able to perform the surgery you would need to relieve you of elongated styloids/calcified s-h ligaments because all 3 specialties work in that area of the body.

The bigger issue is finding someone who’s willing to do a complete eradication of the styloid & s-h ligament i.e. from skull base to hyoid bone as this generally gives the best & most enduring end results. External surgery requires going through the neck. Many doctors just want to shorten the styloid & are happy doing an intraoral surgery which allows for that. The intraoral approach has worked well for some people & not so well for others. In my opinion (I say that a lot because that’s what this is…), there is a higher success rate w/ external surgery because the whole styloid complex is much more accessible & able to be dealt with. That said, it’s also a more invasive surgery & has risks the intraoral approach doesn’t have.

The major nerves can be monitored during external ES surgery, but that doesn’t mean they don’t get irritated or damaged. They are often in the way, & the process of moving them to access the styloid/ligament irritates/damages them. Such post op problems as lower lip droop, first bite syndrome, or partial tongue paralysis are examples of nerve irritation/damage from surgery. In most cases the nerves recover nearly completely if not completely. Even if there is some residual nerve damage, it’s usually less of an impairment to life than the ES symptoms were. I have nerve damage from my first ES surgery which is annoying but certainly a far cry better than living w/ ES!!! My life is very normal now compared to pre-diagnosis & pre-op.

Finally, I’m aware of reports of one or two people (not from this forum) who’ve died from an elongated styloid process eroding through either a carotid artery or jugular vein - NOT as a result of surgery.

Since you’ve read many of the posts here, you know the struggles people have had pre & post op. We are each designed a bit differently, heal at different rates & experience pain uniquely thus ES symptoms & the post op experience can vary greatly.

I hope this tome hasn’t overwhelmed you & has answered at least some your quesitons. :relaxed:

Second all that!
Of all the people who we’ve known on the site who’ve had surgery, I know one member who had a stroke during surgery, but that member had had a stroke before possibly due to vascular ES also. There have been a few who have had nerve damage to the facial nerve, but this generally seems to heal with time, and a couple who have had arm and shoulder problems from damage to the accessory nerve.
Obviously we don’t hear about everyone’s post-op experience, although in general I’d say it’s people who have had issues who come back on after surgery as they need support still- a lot of people once they’ve had surgery & it’s worked well don’t come back on as they want to move on with their lives!
I think the doctors who don’t have the skills to operate generally don’t want to do the surgery & will tell you it’s too risky.
I have to say I read a member’s very negative post-surgery experience with the doctor closest to me, & it put me off surgery for a long time- in the end I messaged him to see how he was, & he said he felt great! he’d posted a couple of days when feeling really rough, & never came back on to update us, so I wasted a year of not getting treatment & nearly never had it at all! I don’t know where I’d be without having had surgery now- I felt so ill before I got it done, now feel great!
Obviously we don’t want to deny that there are risks, and it is a very personal decision- if the symptoms are really affecting your quality of life, then you get to a point where the benefits of surgery probably outweigh the possible risks.