CT scan result yesterday confirmed ES, though I had been made aware of this some time back by dental Xrays which plainly showed bilateral elongation.
Due perhaps to angulation I have never experienced the typical throat, face, or tongue symptoms & have failed to gain the attention of ENTs or to get any medical advice at all, really. It was only by begging that I got the scan ordered, & only after months of acute symptoms.
Sound familiar anybody? It has been so helpful to be part of this group! I have made arrangements through medical tourism to get a bilateral external styloidectomy in the immediate future.
Anyone with experience with medical tourism or with bilateral surgery (I just have symptoms on one side - should I just stick to that or do 'em both since I’m there?) - I would be grateful to hear any thoughts you have about this!
One other question - another finding on my CT scan was a ‘mildly heterogeneous’ thyroid gland. Anybody have insight about this? I realize it’s off-topic.
I can only give input into the idea of bilateral surgery- several experienced doctors refuse to do both sides at once because of the swelling, but there have been some members who have had this done, and lived to tell the tale! I know from experience I’m glad to have just had one at a time, as it was too painful to lie on that side for a long time afterwards, so if both had been done I think getting comfortable enough to sleep would’ve been quite an issue. That said, a lot of people have found that for some reason the second side does seem to get more painful after the first side’s removed, so have gone on to have a second op 3-6 months later. (I had to wait a year for my 2nd surgery, but that was more about UK waiting times!!)
Glad to hear though that you’ve been listened to at last!
Good news regarding your diagnosis & pursuing of surgery! I second everything Jules said. We’ve both “been there & done that”.
Are you planning to have surgery close to home or are you traveling to get your surgery done? Based on your comment about medical tourism, it sounds like you’re traveling. I know of a person w/ bilateral ES who utilized medical tourism & just traveled to Mexicali, Mexico, to have bilateral surgery - both sides at once. The post op pain has been substantial which it tends to be even just getting one side done at a time. As Jules said, there are people on this site who’ve had both done at once & lived to tell the tale, but I’m sure glad I wasn’t one of them!
If you’re going to travel, consider going to California to see Dr. Samji. You can have a phone consult w/ him for a fee. If interested, contact his medical assistant: ■■■■■■■■■■■■■■■■■■■■■■.
Thanks so much for your comments. As you point out Jules, swelling is a concern. My understanding is that this is particularly problematic with the intra-oral approach, & less of an issue with the extra-oral, which is planned in my case.
Isaiah - I believe I’ve been in contact with the ES patient you describe, who recently returned from Mexicali. In fact the surgeon there, Carlos Velez Landeros, put the two of us in contact. It has been very helpful to hear from this patient about the surgery, the hospital, the wifi reception for Netflix streaming post-op, etc.
My top concerns going into this are infection of the site & damage to surrounding nerves. As I read on this & on the Facebook forum, I hear reports ranging from people getting styloidectomy on local anesthetic & going home with asprin to people needing months to recover.
I have been in touch with Kimberly at Dr. Samji’s office. I initially thought, when I obtained my CT scan, to delay treatment & seek the phone consult Samji offers. But - my symptoms are acute. The danger of permanent damage to nerves in my shoulder seems significant. Speedy intervention seems very important.
Things are coming along fine. Not sure if you’d seen the recent post in ‘general’ but I’m a week post surgery & recovery is coming along.
Still a long ways to go to recover function in my shoulder that had been lost over the months of my ‘acute’ phase of ES - and still substantial swelling of the surgery sites - but I’m moving in the right direction & the underlying pain is totally taken care of.