I was diagnosed very unexpectedly by CT scan with ES 3wks ago. I’ve been seeing drs for months to finally figure out symptoms I’ve been having for years. I have some other health issues (FAP, desmoid tumors, osteomas, Graves’ disease/overactive thyroid, and potential hyperparathyroidism), so I’ll only consider styloidectomy if performed by a surgeon who works with other drs at a big (regular) hospital [no clinics or smaller private practice, etc.].
I have appts with Dr Chhetri (UCLA) and Dr Annino (Boston) (both i read good things about here and on fb). I also have an appt with Dr. Kutler (NYC), but haven’t read anything about him yet.
My symptoms are pretty bad and worse on right side, but still pretty serious on the left (my styloid processes are the same length). If I’m a good candidate for surgery, I’d want the external surgery (I don’t care about the scar). I’m going to ask all the drs whether they’d recommend surgery on both sides at the same time or not (and pros/cons) and whether they’d recommend and/or perform or coordinate performing thyroidectomy and potential parathyroidectomy at the same time as a styloidectomy. I am very open to their medical opinion. Some of my conditions (FAP and desmoid tumors) increase my risk of growing a desmoid tumor when I have surgery, especially if it’s a repeat surgery in the same area. Desmoid tumors are not cancerous, but can be painful, can interfere with organ function, and can be life threatening, so I’d really like to avoid growing desmoids in my neck.
I also have a job that involves lots of talking (especially september-December) and will likely be interviewing (even more talking) from September-December this year, so I’d very much like to do what I can to be in good shape by Fall. I’m in good shape/health generally and do cardio regularly.
For now, I sleep with my head very elevated.
Any pointers/suggestions are helpful. I don’t know if just seeing Drs Chhetri and Annino should be enough to develop a plan?
My symptoms include:
throat and neck pain
hurts to swallow
jaw hurts (near constant pressure/pain)
near constant face pressure
vocal issues (hoarse or high or no voice or hurts to talk or sing)
tachycardia, PVCs, feeling of heart racing when it isn’t
bouts of dizziness/feeling like room/bed/chair is shaking
feeling like I might pass out (but I don’t) when I turn my head and/or when I bend so my head is lower than my heart
daily gagging
constant feeling of something in my throat and of neck fullness
my neck is bigger (looks like there are lumps in it- maybe scalene and SCM are irritated/large)
I think you’re on the right track with getting 2-3 opinions since your case is fairly complex. Instead of Dr. Kutler you should consider Dr. Costantino who’s in the same general area. From prior posts, it appears he may be a more experienced ES surgeon.
It’s my personal opinion that having a bilateral styloidectomy plus thyroid & parathyroidectomies all in one surgery would be too much. The problem would come from the amount of post op swelling in your throat/laryngeal areas which could limit your ability to breathe & swallow properly for a few weeks.
Though ES surgery is slow to recover from many people are highly functional within 2-6 weeks post op. The slow part is nerve recovery which can take up to a year so it’s more dealing with the intermittent nerve pain as they recover that lingers.
Based on the symptoms you’ve listed, I’d say your trigeminal nerve (jaw pain & face pressure), glossopharyngeal nerve (swallowing, throat pain, gagging feeling of something in throat), vagus nerve (heart issues, vocal issues, & possible bp issues) & accessory nerve (SCM/scalenes & shoulder pain) are disturbed by your styloids. The dizziness w/ head position change could be coming from vascular construction that occurs when your head is in the particular positions you mentioned, so try to avoid those. Some of our members have noted swollen glands among their ES symptoms so that could be at least part of why your neck seems enlarged/lumpy.
Thanks so much. From what others have said, I’ve been guessing that you’re probably right and that surgeons with expertise won’t recommend doing more than 1 (or maybe 2 max) surgeries together. I prioritize safety and breathing of course, so will defer to expert judgment. I just hope to get going relatively soon so I can fit in the one or two most-needed surgeries to relieve symptoms and then recover before September.
It looks like some drs want anywhere from 3-6mos in between styloidectomies.
You are correct about the spacing between styloidectomies. The timing is intended to allow sufficient recovery from the first surgery before traumatizing your body w/ a second surgery in kind. Mine were scheduled 6 mos apart but ended up being closer to 9 mos apart. That was too long to wait for round 2.
When I asked him about intervals between styloidectomies he recommended waiting at least 3 months, though he did say he had a patient who felt so much improvement after the first that they had the second done approximately 6 weeks later!
Experienced and trusted endocrine surgeon said he doesn’t recommend doing thyroidectomy (or parathyroidectomy) along with any Eagle’s syndrome surgery. So I have that answer at least. He also said he’s pretty sure that my thyroid nodule looks malignant & should be removed. So there’s that.
Appt regarding styloidectomy on Monday.
Trying to think of best ordering for surgeries if I need to have multiple. I’m tempted to consider thyroidectomy first since recovery is so much easier. But it might feel defeating to still feel so bad in throat, neck, face etc while recovering.
If there’s a chance the thyroid tumor is malignant, I would absolutely put that surgery as priority #1. Still having some pain post op may not be as discouraging as you think since you’ll have a plan in place for the next step which will hopefully take care of the remaining neck/throat pain.
I agree with @Isaiah_40_31 - if there’s a chance the thyroid nodule is malignant I’d want that removed first…hope your appt on Monday goes okay, let us know how you get on!
Maybe they can do a fine needle aspiration biopsy on the thyroid. I have a thyroid nodule which has typical signs of malignancy but FNA was negative and now I have annual US imaging to monitor it (was 6 months for a time). Which is not to say that yours is not malignant! Whatever the outcome of that, I wish you all the best with treatment and care.
If the thyroid nodule is malignant, I think your medical team will recommend prioritizing treatment for that first.
Good advice @KimberlyNYC. I also have thyroid nodules & have them monitored by US annually. I’ve hd FNA of a couple of them as they are calcified but so far all is well. Much better than jumping into unnecessary surgery.
Sounds so similar to mine: micro calcifications which are typically seen as a sign of probably malignancy. My nodule has been stable for a number of years.
Was there a list of symptoms that maybe @Jules had posted and/or a list of questions to consider asking a potential surgeon? No clue why I thought I knew where everything was & now either can’t find it or realized I’ve got hyperparathyroidism confused with Eagle’s syndrome (?!)
Jules wrote 2 long posts about symptoms which used to be at the top of the list when the word symptoms was searched. I looked for them yesterday & found they are both in the Newbies Guide:
For questions to ask a surgeon, it’s been mentioned a few times in discussions, it probably ought to get put in the Newbies Guide Section, I’ll get round to it at some point!
Here’s a few ideas:
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!
I hope this helps & if anyone thinks of anything else feel free to shout out!
