Flare up fed up v2

Hi Mafre!

Good (& bad/sad) to hear from you. I’m sorry you’ve had to come back but am glad you had that 6 mo. respite from your symptoms.

Not being a doctor, I can’t tell you for sure what the new lump is you feel in your throat, BUT from my years of experience in this forum, I can tell you that the styloid is the origin attachment for 3 small muscles - the styloglossus, stylohyoid & the stylopharyngeus. The styloglossus muscle assists in tongue function & runs in/near the area where you’re feeling the additional lump. It’s been about 4 years since you were diagnosed & in that time your styloid process could have grown longer &/or thicker which would put pressure on those small muscles & especially the styloglossus w/ the angle that your styloid is growing such that you can feel it bulging into your throat. It’s entirely possible that little muscle is being squished/squeezed by your styloid & has swollen up a bit to defend itself. Here’s a link to a good picture to help you see the muscle locations: https://www.earthslab.com/anatomy/styloglossus-muscle/

As far as intraoral vs external surgery goes, IF intraoral surgery is done well, it will give just as good of a result as external surgery. The problem is, there is a tendency for doctors who don’t know much about ES & do intraoral surgery, to only slightly shorten the styloid(s) i.e. “snip the tip” & leave most of the remainder intact & some don’t bother to smooth off the remaining styloid which leaves sharp bits that can irritate nerves. Additionally, if there is stylohyoid ligament calcification, it is very difficult to remove that via the intraoral approach. This can leave the patient without symptoms relief plus having to recover from the surgical injury to the throat. Often, the tonsils on the affected side are also removed which makes healing even more challenging & painful. The type of patient your primary doctor is familiar with likely only had the “tip snipped”.

Even for cases such as yours, where the styloid is pressing into the throat area, external surgery is our preference because during surgery, the nerves & vascular tissues can be seen, monitored & moved out of the way, & the styloid can be cut back closer to the skull base & s-h ligaments to the hyoid bone more easily (cut end of the remaining styloid needs to be smoothed off). During intraoral surgery, the surgeon is essentially “cutting blind”. External surgery is also a less painful & quicker surgery from which to heal. A good surgeon will make incisions in areas where they are basically invisible once healed up.

To summarize - intraoral surgery is fine if you can find a surgeon who will take the styloids back as close to the skull base as possible & smooth off the bit that is left & remove any calcified ligament that may be involved; external surgery is our preferred approach for the reasons stated above, but again, both types of surgeries have had good successes. I hope some of our intraoral success stories will chime in.

Here is the link to the Doctors List again. Perhaps Mr. Jonathan Hughes in London would be helpful for you. I’m not very familiar w/ the layout of your country so perhaps there is someone closer.

https://forum.livingwitheagle.org/t/doctors-familiar-with-es-countries-outside-us-current-list/4753