Great news that your surgery went so well especially since it was pretty extensive! Very awesome that you’ve noted significant symptoms reduction. Please be aware that some of those may come back for a bit once the operative meds wear off, but the good news is, over time, most if not all should disappear. I can’t remember if you have bilateral ES, but if so, remaining symptoms could be caused by the other styloid so don’t worry that the surgery “didn’t work”.
I had the same problem w/ my tongue post op but was told it was my glossopharyngeal nerve that caused it. I must say, it makes more sense that it was the hypoglossal. I’m glad you’re able to eat solid food already. That’s pretty amazing! I had trouble chewing (moving food around in my mouth) & swallowing for a number of months after surgery. Talking w/o sounding drunk was also a challenge.
Hey, everyone! Had my appointment with Dr. Annino yesterday.
He removed my steristrips and said my surgical wound is healing nicely.
He told me the hypoglossal weakness should resolve within 6 weeks to 6 months and that it’s only considered permanent if it lasts more than a year.
We decided to postpone my second surgery until I’ve hopefully regained full function of my tongue to avoid the risk of having it happen on both sides (highly unlikely but better to be safe.)
My left side was largely asymptomatic prior and I didn’t even know it was long until I saw my CT scan. The only symptom I have is thumping pulsatile tinnitus at night (which seems to be worse now than it was before the surgery, I’m guessing my right was so bad I just hadn’t noticed my left I also think my left neck is just tight from the fact that it has been used more recently. So I’m hoping it doesn’t get much worse while I wait.
The post-surgery pain is almost completely gone and my laundry list of symptoms in my original post is almost completely resolved hoping the remaining discomfort goes away once I’m farther out from my surgery. (Only 11 post-op days currently).
I’m back to non-weight-bearing normal activity for the most part, glad recovery hasn’t been too rough.
Thanks, everyone, I appreciate everything this group has helped me with and will definitely give back in any way I can to help other members.
It’s so great to hear how well your recovery is going! Sorry for the ramped up pulsatile tinnitus but I think you hit the nail on the head regarding why you may be noticing it more now. Additionally, you do have extra swelling in your neck at the moment & things may have shifted a bit w/ one styloid gone. Those two factors could be contributing, too.
I hope your healing progresses consistently & your tongue function returns to normal soon. I know from experience how annoying a half functional tongue is!
That’s great to hear @Matheou! so pleased that the surgery has helped you, & I think it’s sensible to wait a bit for the second surgery, I hope that side doesn’t ramp up too much…take care
Wow thanks to Jules for pointing me to this thread. It makes me feel so much better. I’m seeing Dr. Annino on Nov 13th snd hoping I’ve gotten the right scans. I have been asking my drs to arrange things but it’s the blind leading the blind. I have yet to find my CD reader and upload my CBCT into radiant.
Thank you guys so much for sharing your journey here.
Hey @Thans, I had my surgery on March 17th, my recovery went really well Dr.Annino did a great job and removed most of my right styloid it was ~4.5cm in the scans and the pathology report showed he had removed 4cm, as well as the greater horn of my hyoid which was pressing on my right carotids.
In my case he said the reason I had issues with my tongue post-surgery was because he had to retract the nerves in opposite directions to access the styloid then the hyoid. Thankfully the effect was temporary and the right side of my tongue was fully functional within a month. I read about this happening to other members prior to my surgery so I wasn’t too worried about it.
I haven’t had any of the symptoms I described in my original post since then. My vision even improved my right eye. Overall I feel amazing compared to before the difference is night and day.
I have scar tightness and occasional pain when it’s cold but it hasn’t even been a year and given that it was major surgery it can take anywhere from 6-18 months for the tissue to heal completely.
I went to see Dr. Annino for the other side but the scans don’t show any compression and I am asymptomatic so he decided he preferred a conservative approach and I should only go back for the second surgery if it becomes a problem.
Overall, I had a great experience and don;t regret my decision at all.
Let me know if you have any questions, and good luck with your appointment!
THANK YOU SO MUCH. So glad for your outcome and positive experience. Your journey …. made me tear up a little.
I don’t know why I didn’t get any of this info either. In my case it all started when I slept on the floor of an apartment in NYC during 911. It’s been that long. That night I started Hypnic Jerking.
Well it didnt start then. I had head issues as a child, then it cleared at 8 yrs old when I saw a chiropractor for the first time. I was able to smell, my head drained.
Still happens to this day. Sometimes I feel things cheating when I sit up.
Holy I have a lot of those symptoms as well. Sometimes they disappear (not fully but enough to be to be kinda relived) almost like you got nun going on then bam it’s back with vengeance! Did the surgery really help? It’s hell living like this and talking to doctors rn it’s taking a while appointments are months apart had to wait til the first to fix my Insurance plan. Need to mail dr.cognetti one my cds the office ordered the other day.
