Hey all sorry I haven’t posted in such a long time. TBH I’ve been crazy overwhelmed with so many other issues in my life I’ve been just struggling to hang on. The good news however is I’m having surgery with Dr. Annino on 6/7 and hopefully I’ll get some relief. After meeting with him a couple weeks ago I learned that not only is my styloid causing issues, but on top of that my hyoid is impinging on my jugular vein on the left side.
I have a few questions for the forum regarding some of my current symptoms and what to expect from surgery .
One of the burning questions for me that Dr. Annino smartly couldn’t commit to answering is regarding Vagus nerve irritation. As a reminder I was first diagnosed with ES in 1999 but at the time the symptoms were minimal and I didn’t realize the scope of other symptoms until recently. Sometime around 2002 I started having what I now know is visceral pain, its kinda like a string stretching from my pelvis to my chest causing me to hold my gut in. Also around this time I had to start being treated for high bp. Then as I got into my 30s I started having stomach pains as though I was always full, combined with gas, heartburn and constipation. Over the past 12 years I’ve had my stomach and colon scoped twice with no findings. I’m wondering if anyone here has been diagnosed with vagus nerve irritation had similar symptoms and how they were treated.
I also have questions regarding how the nerves in that area are affected and what they might find when they open me up and how they will treat it. I know my glossopharyngeal is being affected because I have a biter taste and tingling at the base of my tongue on my left side for about 8 years now which is what led me to finding out ES may have been causing a lot of issues. I’m not clear on what is actually happening to cause this and how they will address it and also how would this relate to the vagus nerve.
Based on what little I’ve read and some probably wrong assumptions I feel like they have a plan going in to cut the bones but then also they have to see what they find and go from there?
I also didn’t get to discuss the fact that I seem to have stylohyoid complex syndrome rather than ES and what the means for treatment and for the future.
Lastly I’m just wondering what to expect from the surgery and recovery. Since I’m driving 5-6 hours for surgery I’m trying to gain insight on how I’ll be feeling so I can plan for how long I’ll stay before driving home. I’ll be spending one night in the hospital with a drain so I’m thinking I should be ok to be driven home the day I’m discharged, so understanding my limitations and how uncomfortable I’m going to be will be helpful. Also I have my follow up 6 days later and I’m wondering if I’d be able to drive myself to that appointment or will I have driving restrictions?
Thanks you all so much for your help and support, it’s truly appreciated!
Hi Rick, welcome back! I’m happy for you that you have a date scheduled! Despite it being a big surgery, you should look forward to discovering what symptoms were related!
I dont know how much of what I have to offer will be as helpful as what others contribute but let me give it a try.
I had my left styloidectomy last Wednesday. When my journey began on ‘02 I was diagnosed with LPR (reflux reaching my throat but doesn’t give heartburn like regular reflux). Symptoms were classic of it and I’d had the symptoms the year before that went away with allergy meds - because at that time, that’s what my PCP thought. This time, the ear pain/fullness and throat burning were accompanying the other symptoms. Meds did nothing for the ear and burning but hindsight, took away the classic reflux symptoms. Since my other symptoms didn’t resolve, I was encouraged to explore reflux surgery despite having normal GI scopes and mildly “puffy” vocal chords. I persued the surgery and my ear/throat symptoms never resolved. Fast-foreword a couple years and here I am learning I have ES and that it can irritate your Vegus nerve which in turn impacts your GI system! Very likely that I never needed that surgery.
Regarding surgery, we know imaging can only show so much. I think you’ve got a good grasp that they’ll need to really explore what they can once they’re in there. Many posts Ive read have shown unexpected findings.
Having just had surgery, no drain and still an overnight stay - personally speaking - I’d recommend a cozy air bnb or a comfortable hotel for at least one more night and if that’s the case, then you may as well put your body and healing first and stay for the added days. I found that an hour drive home for me was exhausting and difficult. And I don’t feel that I rank under the “whimp” category. Not to mention, you won’t know how you’ll react to anesthesia or if you’ll have narcotics for pain. There’s dizziness, nausea and all kinds of other “what ifs”. Then again- I’ve read a few posts here how a very few have felt perfect after surgery. Most though seem to have a recovery period.
If you do drive home have lots of water to drink, maybe a soft neck travel pillow, soft snacks and loads of ice. I found the old fashioned ice bags sold on Amazon held the cold much longer than gel packs and they form better to your neck.
Today I’m 8 days post op. I just now feel comfortable driving (and was not given any restrictions) but my neck turning is still a little tough and stiff. I’m certain there’s still a bit of inflammation going on under that scar.
Rick, I wish you the very best outcome and hope you’re pleasantly surprised to find symptoms fade over the following post-op months. I hope you share your journey so others can benefit from it. I know reading experiences (good and bad) on this forum sure has helped me!
It would be interesting to know what Dr Annino thinks about the hyoid impinging on the jugular vein; are there any plans to trim the hyoid process as well? I don’t know if the styloid is shortened, any calcification removed on the ligament then that side will be ‘freed’, so the hyoid may shift a little & that might be enough to keep it away from the jugular?
As @Tjmhawk01 says they’ll explore when they’re in surgery, sometimes there are surprises with the anatomy; for example Isaiah’s hypoglossal nerve was wrapped tightly round the styloid so couldn’t be removed… @Tjmhawk01’s recovery experience is pretty relevant as you have the same surgeon, as often different surgeons do this op with alternative methods, although as we’re all unique & our styloid’s are at different angles, it can still vary a bit with recovery & what nerves are moved/ stretched. I had a 2 hr drive home which was fine for me, but a neck pillow is a good idea with ice packs & a chilled drink for the journey. Re driving, with my first surgery I couldn’t drive for a couple of weeks as my neck was too stiff to turn. & certainly wouldn’t have wanted to go too far after that. But 2nd surgery was easier. If you could get someone to take you for your post-op that would be better.
Not too long to wait! Will make a note of the date & will be praying for you
Tracy,
Yeah I keep thinking that they are going to find a crazy amount of calcification because I’ve been diagnosed with it for so long and I do have other excessive calcium issues. Based on my meeting however, and even more from what I’ve read about Dr. Annino I’m confident he is one of best surgeons for the job. Also I’ve decided to stay an extra night, especially since we will be traveling with a 1 year old! Thanks so much for your kind words and good luck in your recovery!
Jules,
I did discuss that with him but he is unsure what will happen. The hyoid is pressing quite far into the vein which has caused the other side to expand to compensate. He only spoke of trimming the hyoid and the styloid, but based on my conversation he is very hesitant, smartly to speculate.
I’m very interested to see what exactly is happening with my glossopharyngeal nerve and a little apprehensive that it is going to be bad. As is sit here typing this the bitter taste in the back of my throat is almost unbearable and if I’m active all day like today (stay at home Dad during the day and working part time at night) by the time I’m lying in bed tonight it’ll be much worse and it will be tingling like crazy and even seems to spread to the other side at its worst. But time will only tell is suppose and even if it is bad its a step towards recover so I’m all in! It is also interesting to note that that I do have retropharyngeal carotid artery on the right side so they defiantly might find something else funky in there!
@ Rickstarbird,
My glossopharyngeal nerve got upset by my first ES surgery (rt side) so half my tongue was temporarily paralyzed as a result. I had sensation in my tongue but the motor part of it just didn’t work at all. Try talking & eating w/ only half a working tongue!! This is just to say that if your GN needs to be moved out of the way during surgery, you could end up w/ that post op side effect. It’s not one of the more common but we do have several members besides me who have experienced it. Mine took about 9 months to fully recover (I was doing much better by 6 mos post op), but many people are back to normal w/in a couple of months. This is not to scare you but to prepare you in case this happens. If it does, I can send you some short videos w/ exercises you can do to help your tongue/GN heal more quickly. I didn’t learn about these until after my tongue had fully recovered.
@Isaiah_40_31
Yeah what worries me is it already feels kind of “fat” I guess is the right term? Its kinda like that part of my tongue is lagging behind maybe? So hard to explain. I’m not too worried about it more curious I would say. But knowing my luck its going to be complicated! Thanks for the support!
I understand the “fat” tongue feeling. Try sticking your tongue out of your mouth & see if it deviates to the left or right. That will demonstrate which side is having the most trouble. It was the right that was paralyzed for me & my tongue still deviates a bit to the right when I stick it out of my mouth. I could probably fix that by doing the exercises I mentioned, but I’m doing PT for other body parts right now so my tongue is being left behind. Besides that, my tongue is working well enough I don’t notice it anymore.
I had what felt like extreme pressure on the back of my tongue - like something was pressing down on it hard or pushing it from behind as if to push it out of my mouth (though it didn’t move). I’d periodically stick my finger back there to see if I could feel what was causing it but never felt anything so had to assume it was a nerve sensation. I did occasionally get the feeling like the roof of my mouth & my upper gums had been scalded (like it feels when you drink something that’s too hot & it burns your mouth). It would last an hour or two then gradually go away. It was quite bizarre!
Besides that, my tongue is working well enough I don’t notice it anymore. 