Saw Annino this afternoon, and after looking at my styloids feels my symptoms align more with HBS? And still isn’t sure that is what is the cause of my issues.
If anything he believes my greater cornus are very long and close to my spine, and clipping them as resectinf some of my right posterior digastric could bring me some relief.
He was wonderful and really brilliant, I’m just having a hard time because so much of my constant pain is directly below my ear and behind my mandible. And palpating my hyoid directly doesn’t cause pain? But he urges strongly that removing styloids first isn’t a route he recommends. I’m obviously grateful he isn’t suggesting a surgery he doesn’t think will help, I ’m just feeling a little lost based on my symptoms and pain area.
I’m seeing Cognetti on the 15th which will either confirm or add more confusion to the mix haha.
The pain in the area where you’re pointing w/ your thumb could definitely be coming from your hyoid as opposed to your styloids as that’s where the tip of the right greater horn would be pressing. Our member @CJsBattle had HBS & surgery. He would be a good resource regarding symptoms. I’m sure he’s posted them in one or more posts. You can try searching his screen name & reading posts that come up. I’m not sure if palpating the hyoid brings up symptoms the same way palpating an elongated styloid does. Perhaps CJsBattle could answer that.
Hopefully Dr. Cognetti will be of the same mind regarding the hyoid, but your styloids are pretty long, too, so you may need to have both the hyoid & styloids taken care of eventually. It’s worth it to get one or the other done & heal to see if the symptoms all go away before planning a second surgery.
That’s a tricky one, both the hyoid & styloids look long! I’m glad that you have Dr Cognetti to see as well, and I hope that you get a clear answer!
Thanks Wendy! I was honestly taken so aback- I never thought it could be my hyoid as palpating it causes zero issues for me, although I do know my horns are quite long and it was described they could be pressing structures and bother my posterior digastric. @Jules ironically enough, Annino didn’t seem to think my styloids were long! And since they didn’t show vasculature compression he didn’t seem convinced they were my issue. But I do have a photo of my right styloid making direct contact with my ICA.
So it’s all just very confusing- I just want to have the right surgery and stop this constant pain.
That is all very confusing. Echo both Wendy and Jules that a second or even third opinion would be good and hopefully clears the air. Certainly frustrating getting answers…I have noted in the past, that we really need neuro input to help see if symptoms can match to nerves, but there doesn’t seem to be that option unfortunately… Looking forward to what you learn on the 15th…
Thanks Leah- yeah having neuro input would be super helpful here, especially with my palatal myoclonus coming into play, which Annino did say could be caused by GPN compression (via styloid, not hyoid). Which again, continues to add to more confusion. I went as far as to ask if he could do both both surgeries in one go lol
That’s a reasonable question. What was Dr. Annino’s answer?
Also, it’s surprising that he acknowledged the possibility of styloid induced GPN irritation/compression causing the palatal myoclonus but still didn’t think a styloidectomy was in order. Interesting about the styloid/ICA connection. The arteries are sensitive & the styloid touching your ICA could also be causing pain symptoms.
He said he couldn’t because they aren’t really in the same area.
Unfortunately I wasn’t able to show him that image (the appointment moved so quickly) so I emailed it to him last night- waiting to see what he says about that part. I’m making sure to bring it up with Cognetti tomorrow!
@Leah @Isaiah_40_31 @Jules email back from Annino regarding styloid coming into contact with carotid
Unfortunately I didn’t render this specific image myself, a friend in the ES FB group did who isn’t doing well recently so I don’t want to ask if he can assist with helping me get more angles.
I’m glad your appts are close together. I hope you’re able to have a thorough discussion abt styloids, hyoid & ICA w/ Dr. Cognetti.
@etherealcataclysms - How did your appt. w/ Dr. Cognetti go?
Hey Wendy, thanks for following up. He said similar things to Annino in terms of no compression. He did completely differ and said he didn’t think hyoid is an issue at all.
I was a bit thrown off because he wants me to keep a symptom journal (daily) for 2 months to see what makes me have better and have worse days. However, I felt I tried explaining every day I have constant pain and I know what makes it worse and better and clearly stated that to his attendings. Then, we would follow up in 2 months and decide if I want to have the surgery. I’m not sure how the daily journal will help me understand better than I already do honestly, however he did say he wanted me to have a game plan for if the surgery didn’t work so maybe that’s part of that. I truly have no idea but I left disheartened.
He seemed concerned that if I’ve had any positive effect from Botox behind the mandible that it could not be Eagle’s, but I’ve read many people in this forum and the Facebook group that have had mitigated pain via Botox. Plus, it hasn’t gotten rid of it completely, otherwise I wouldn’t be there haha. He said we wouldn’t know unless we took it out. The two months just feels unnecessary for me. He seemed keen that some forms of Eagle’s can be muscular and treated without surgery, but I’ve already tried 2 rounds of Botox, dry needling, PT, acupuncture, massage, oral appliances, you name it.
So frustrating for you, if you’re doing a 2 month diary of symptoms would you be able to be on the waiting list for surgery while you do this, or would you have to get back to him after the 2 months & then go on the list? Just thinking if he has a bit of a wait anyway you might as well be doing a diary while you wait? Or do you feel more confident with Dr Annino?
I believe I would go on the waiting list after the 2 month diary. It’s extremely frustrating ): I honestly prefer Annino- I feel like he listened to me more at the initial consult.
I almost want to ask if he would be willing to do the styloidectomy first even though he advised against and to do HB surgery first.
I think there may have just been slight miscommunication at my appointment with him, because my list of “what made symptoms worse” was swallowing, talking, laughing, etc, and it’s not so much the actions as much as the movement of my jaw causing the mandible pain, but I can see someone thinking “HBS”.
I just also don’t want to ask my surgeon to do a surgery he advised against doing before doing the surgery he did say I should try first. He did say he would do the styloidectomy if HBS didn’t work, I just really don’t know if that’s my issue and don’t want to have HB surgery just to have it- it also seems more invasive.
I sent him more questions about what makes him lean more towards HB via the patient portal and his nurse wants to schedule a follow up to dicuss, but he doesn’t do telehealth, so I’m feeling a little stuck on what I should do next.
Here is my thought - it’s your body, & if your gut says do styloids first to see what resolves then consider HB surgery if symptoms persist, then Dr. A would hopefully respect your opinion.
It is a bit frustrating that you would need to see him in person to ask more questions. It certainly seems he could answer you through the patient portal.
That’s what I’m thinking too. I called his office and asked his assistant directly if he can answer them via patient portal because I’m located in Texas. Apparently his nurse isn’t the most reliable at relaying his messages.
The good news his, my local-ish ENT confirmed with radiology re-reviewing my scans that my right digastric does have inflammation (which Annino also caught, Cognetti said he didn’t see it), so we are going to be doing HB diagnostic injections in the next few weeks to either confirm or rule it out. Such an amazing doc!
I’m also going to ask him if we can directly inject steroid into the inflamed digastric because that’s where a ton of my pain is. From there, hopefully that gives me enough info to know which way I should go first because I can take that info to Annino.
My question is- why is the digastric inflamed in the first place so significantly and on one side, no one seems to know.
I hope that the injections do help you! That’s a good idea to try those first
Good job figuring out a significantly useful next step, @etherealcataclysms! I’m glad you have a supportive doctor closer to home!!
The muscles can become inflamed because of physical irritation i.e. getting poked by something like the hyoid, or constricted by a vascular tissue, nerve or other soft tissue. Nerve irritation can also cause muscle inflammation. Since the trigeminal nerve innervates the digastric, if you’ve noticed other TN symptoms, that may be the culprit in this case.
Thanks so much! I really haven’t noticed a lot of TN issues, so I wonder if HB or nearby structure- or honestly, malocclusion even is causing a digastric strain. I have a significant overjet, which I know can over exert certain muscles. I’ll keep the forum updated with my diagnostic injections of the HB as well as digastric muscle!