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New to the site, but thankful this community is here.

Recently diagnosed with bilateral ES; 4.8cm on the right and 4.2cm on the left. To date, I have only been symptomatic on the right though, with ever intensifying vascular symptoms over the past 12 months. What started as mild (but persistent) pain/irritation behind my ear and jaw line has now manifested itself into the symptoms/issues so many of you have described, i.e. the brain fog, dizziness, weakness, lethargy, headaches, eye focusing issues, etc. along with panic attacks, heart racing, etc. at different points.

In similar fashion, getting to a diagnosis was an exhausting process: I have seen 3 ENT’s, 1 vascular surgeon, 2 neuro specialists, 1 jaw specialist, 1 endocrinologist, 2 naturopaths, 2 GP’s and 2 ER’s who ordered a total of 3 MRI’s, 3 CT’s, 2 ultrasounds, and a thyroid biopsy; all to misdiagnose me with carotidynia, migraines, tension headaches, tmj, meniere’s, a patulous eustachian, hahismoto’s syndrome, a dissected carotid, depression, and chronic fatigue syndrome amongst other maladies.

Currently scheduled for intraoral surgery next week. The symptoms are such that it can’t be put off any longer. The intraoral option is at the election of my doctor who feels it makes the most sense in light of the styloid’s angle and how it is pressing into my throat.

Would certainly appreciate any thoughts/insight around the relief I might expect from my vascular symptoms, but also happy to answer any questions around symptoms or process for others still struggling. My diagnosis wouldn’t have been made had I not advocated for myself and pushed for one final CT with the right doctor(s). It shouldn’t have to be so hard.

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Welcome to the site, jgonzo. Glad you found us!! I’m sorry to hear all you’ve been through, but sad to say, your story is more of the norm than the exception. I applaud you for your tenacity in driving for the right diagnosis. Clearly your persistence has paid off. It’s also good to hear you have your surgery scheduled.

Assuming your surgeon removes enough of your styloid(s) you should have noticeable relief from at least some of your symptoms as soon as when you wake up from surgery. Since some of your symptoms have been w/ you for awhile, it may take some time for nerves to heal & vascular tissues to decompress so you may have some residual symptoms which will heal over the course of the next 6 months to a year.

The upside of external surgery over intraoral is that the styloids & stylohyoid ligaments are more accessible so can be completely removed. Vascular tissues & nerves are also visible & easier to avoid via the external route. With intraoral surgery, the styloids can only be partially removed, & I’m not sure about the ligaments. Please check to make sure only your styloids are elongated & you don’t have any calcification of your s-h ligaments. ES is defined as calcification of the stylohyoid ligament(s) OR elongation of the styloid process(es) OR a combination of the two. If your surgeon only cuts back your styloids & leaves calcified or partially calcified ligaments in place your outcome won’t be as good.

As far as I know, there isn’t really a reason to do one approach over the other - it’s the surgeon’s choice & what (s)he is most comfortable with.

I wish you well next week & will pray that you have the best possible outcome.

:blush:

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Firstly well done to you for persevering & getting diagnosed & now treated; it’s a shame it takes so long, but sadly you’re not the only one here… but great that you’ve told your story as it’s so encouraging to others!
The vascular symptoms I had improved hugely within a couple of days after surgery on my worst side. Other symptoms took longer to go as Isaiah says. I eventually had both sides done- I has bilateral compression of the jugular veins. I get a little symptomatic every now & then- the surgeon I saw thought that the veins might not have sprung back completely, & suggested that it would be possible to have stents put in, but as there are risks with that & things are so much improved I didn’t want that. Obviously your recovery could vary depending on which side is giving the worst symptoms- are you having one side done or both? If just one side then you may have symptoms still for a while, & surgery for some reason can upset the side with the remaining styloid process, so don’t panick if that happens!
There’s lots of info about what to expect after surgery, in the Newbies Guide section & in the past discussions which are searchable, so if you’ve not looked already that would be an idea. Lots of pillows to sleep propped up, cold packs, & very soft foods or ingredients for smoothies etc. are really useful to get in ready! And make sure you get plenty of rest afterwards, be patient for the nerves to heal, & very best wishes to you!
God Bless, Jules :bouquet:

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