Good morning, I seen Dr Ondrey yesterday and he is very honest, he is very picky with who he operates on because he wants the outcome to be positive, he leaves the original 2.5 cms behind because he doesn’t feel comfortable digging any deeper into the neck to remove more, so I think I will go ahead and let him do my surgery, I feel confident in his abilities to not do damage, I see Dr Cha next week if she can recommend someone that will take it all the way to the skull, then I will rethink, that fear of it growing back is definitely not fun, surgery should be the end of March or the beginning of April, if it grows back then I will go to see one of the top surgeons but it seems like only a few have re growth so hopefully I’m one of the ones that doesn’t experience this, I have allot of calcification of the ligaments, so removing that will hopefully help with allot of my symptoms, I also just have to keep my fingers crossed that he takes out enough to release my jugular vein
We see the occasional member who’s come back with re-growth, but it is still quite rare. A couple of people have had theirs taken back to skull base & still had re-growth! I think if you’ve found someone you feel confident with that’s good, I think freeing the jugular vein is more important than thinking about re-growth…hopefully removing calcified ligaments will make a big difference to your symptoms
Question regarding removing calcified ligaments: what is the consensus regarding leaving the part of the ligament (if any) that has not yet calcified? My understanding is that it’s fine (it falls back to the hyoid bone), but thought I’d check in with the group about it.
Mine were left in, there was no calcification on them at all. I think that maybe Dr Samji removes them anyway, if I remember right, but maybe someone can correct me if I’m wrong?! As for other doctors, I think they’re left in if not calcified.
Thank you, Jules.
Hopefully more people will respond, I’m always interested in knowing different surgical approaches.
Jules has a great memory! Dr. Samji told me he removes them to prevent future calcification. He said they have a minor role in swallowing so we don’t miss them when they’re gone.
I wonder if it’s problematic to leave behind the parts of the ligament that are not calcified, from what I understand it’s not. Thank you for sharing Dr. Samji’s reasoning. I wonder if it’s more common to remove them in their entirety or only remove the calcified sections. Mmmm.
It seems like most doctors leave the s-h ligaments alone unless they’re calcified or have calcified segments.
My gut feeling is that either option is fine.
Same. I trust the surgeon who told me his plan to only remove the calcified part of the ligaments. I’m also interested in deep learning about other people’s experiences and alternate surgical approaches for ES, which plagued me for a long time before diagnosis.
Before I knew what it was, I had bouts of migraines and dizziness, I’d loose my voice randomly and my hearing, I had it under control for a while with a chiropractor, I had an ablation that seemed to help then an osteopath was awesome, I did tons of pt, mostly release, if I kept the muscles I’m my neck from getting too tight this helped lots, I used allot of muscle relaxers until it started to effect my heart, then finally I found a neurologist that worked it out, hope that helps
Great suggestions, thank you. A lot of them helped me with pain management as well until all the pain symptoms became constant, varying only in intensity. Which led me to discover I have ES with “ginormous” styloids and bilateral IJV compression.
This might be a stupid question, I understand that there might not be a need to get all of the ligament out if it isn’t problematic, but uh it’s not like it’s going to function if you leave it in, right?
Styloidectomy means some portion of end of styloid (where stylohyoid ligament connects) and/or the ossified portion/s of the ligament is/are removed. Unless the surgeon reattaches the ligament to the new end of the bone or reconnects whatever portions of ligament are remaining to eachother, it wouldn’t function as a ligament anymore because it wouldn’t be connected to the styloid and the hyoid anymore, right?
I believe allot of them leave them connected but just shave out the Calcified section, but I could be wrong
Your question isn’t stupid at all, @DoloZ. I have considered that very thing many times. I recall hearing something that made sense - when the s-h ligament is detached from the styloid but not removed, it does become useless so the body absorbs it i.e. it disappears. This explanation, however, doesn’t jive w/ my surgeon telling me he removes the ligaments to prevent any chance of future calcification. In the end, knowing that disconnecting the s-h ligaments has a minor effect on swallowing as it’s only detriment is reassuring.
I don’t think that they’re re-attached, usually too much of the styloid would be removed and they’re usually cauterised off I think? Could be wrong though!