Excellent news, ESinLV! May your healing be smooth & your setbacks be few!
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Hi everybody! ESinLV thanks for the update and glad you are doing well - it was so helpful to touch base during the past week 
I’m happy to report that I’m doing pretty well! Dr Samji was amazing and I am just so continually grateful that I followed all of the advice and anecdotes here. Very kind, compassionate and direct. My main symptoms were voice related (singing and speaking) and he told me there were no guarantees, but based on my CT and story he felt it was most likely from the styloids and he could help me. I was honestly terrified and cried the entire pre-op up until when I got put to sleep!! It was my first surgery ever, and as a pro-singer, surgery anywhere my throat was of course terrifying on another level. All that said, the care at the surgery center was great - everyone was very kind. I remember the OR nurse holding my hand as they put me to sleep since I was so anxious!
After waking up, the pain was a little intense but quickly remedied with the meds, and after napping a bit I think I was out of there in like 45 min to and hour? That was the worst pain I had, just the few minutes after waking up. The rest of the past week I’ve managed the pain really well with meds, which I’m taking less and less of…the pain was never as bad as I expected - more just uncomfortable with the whole neck/ear/jaw area being very tight, swollen, sore and numb. The nausea medications really helped…I’m usually very easy sick and I didn’t throw up once from the anesthesia or pain meds. Zofran is a dream medicine haha.
When I woke up, I remember hearing Dr. Samji saying my surgery was difficult, so when he came to check on my lip/tongue/smile movement I was so relieved that everything was okay. He said it was a little droopy, but I think it was just tight because everything looked normal to me later that day. I feel very very lucky because he said my surgery was really tough…and I feel that means a lot since he has done so many of these. He said my styloid was really angled and tight in there, compressing lots of stuff & hard to get to. I’m so grateful he is such an amazing surgeon bc I think I honestly just didn’t even let myself comprehend how dangerous the surgery could be. He said it was “not a happy styloid” so I FINALLY feel like I have the answer to all my vocal pain. It feels very freeing and validating to finally have the proof…even after diagnosis, no ENT would conclude my problems were definitely Eagles…it seemed the surgery was the only way to prove it. If a bone poking into nerves in my throat isn’t what was affecting my voice - I’ll never know haha! The most obvious and immediate change was no longer feeling the bone near my tonsils with my tongue! It’s gone!!
The time since has been pretty smooth! Just taking it really easy, resting a lot, sleeping elevated, taking the meds when needed…I was on soft foods for a week, I’m just starting to be able to chew a little bit more now. My jaw has been very sore so hard to open my mouth very wide or chew anything hard - but it’s getting better! Ate lots of soups, smoothies, yogurt, ice cream, mashed potatoes, etc…I’m ready for a cheeseburger haha
At my post-op, Dr. Samji reinforced that my surgery was tough and told me that my ear lobe will be numb forever! This was a momentary shock but I really am not very upset about it - given what else could have happened. He said I should get some more ear piercings 
He said all the numbness will get better except my ear lobe - I guess the nerve to the ear lobe was right where he had to make the incision so it was cut. Interesting bc I never read about this happening to anyone else on the forum I don’t think? Maybe the nerve isn’t usually in that place but mine was? I really don’t know…Scary but I’m grateful it was just my ear lobe if anything. I will take a numb ear lobe to have my voice and life back!!
Other than that, I started noticing First Bite Syndrome a bit about 5 days post surgery…it is pretty shocking and painful for about 30 seconds, but I have noticed it’s already a little better in the past few days. I’m hoping it will get better over time as I have read…Dr Samji said it could go away anywhere from 2 weeks-3 months…though I have read accounts of people having it for years? Just trying to be patient with this! Any remedies welcome 
That’s about it! I’m just trying to stay patient and kind to myself along recovery As you know it is a VERY emotional and scary journey. I had a bit of a delayed emotional reaction to it all a few nights ago - just kind of had all the fear, emotion, relief hit me all at once! I never imagined I would be diagnosed with a rare “syndrome” let alone one affecting my singing which is the center my whole life, career, and spirit. I am really really hoping I don’t have to do the right side, so trying not to get too ahead of myself with that. I want to be done with this journey and remember what it’s like to sing pain-free as I did for 32 years
Thank you all for the support and information - this forum is invaluable!!! I’m so sad and sorry to everyone who has had to go through this - but thank god there is a cure and doctors like Dr Samji who are devoted to helping us. He was the first doctor I’ve dealt with in a long, long time who didn’t make me feel crazy. I will forever be grateful to him! I look forward to keeping you updated and giving any advice I can to ES newbies
xoxo Jessica
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jessicarae87,
Thank you for this thorough & positive update. I’m so happy to hear how well things went for you! A post op permanently numb earlobe is a first on here, but I totally agree, if something has to be numb, why not the earlobe. It’s pretty inconsequential! I have an area along my jawline that’s never recovered full sensation and am totally unaffected by it. I only notice it when I rest that part of my face in my hand (not very often). It’s a reminder of how far I’ve come & how well my body healed. I’m so thankful for that.
Sorry you got FBS. It’s not uncommon w/ surgeries in the neck area. I got it too & sympathize. It does get less intense as time passes. I hope for you, too, that it goes away completely.
Rest, rest, rest…that’s the most important thing you can do for yourself now. Listen to your body. Be careful not to overdo when you start feeling more energetic. If you do have significant symptom flares that last, those may be a sign your remaining styloid is at work. Hoping that doesn’t happen though & you can safely ignore it, & the thought of a future surgery.
Please let us know if you have any questions as you heal. We’re here for you.
Thank you!! Wow that’s so crazy no one else has had the ear lobe thing!? Why was my nerve where the incision is made but no one else’s!? Crazy! I can accept it though
Thank you for the reminder to take it easy…I find I will feel pretty good and be up and about, and then it will be more sore that day. Rest is key! Have you heard of any supplements for help with nerve regrowth? Someone suggested Lions Mane Mushroom to me and I might try it.
Dr. Samji said FBS will go away between 2 weeks and 3 months but I’ve def read a lot of stories that people have had it for years…he said gabepentin could help? The body is mysterious that’s for sure.
Thanks again!!!
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So pleased that you’re through surgery & have that spike out! Also really, really pleased that you had Dr Samji do your surgery- if he thought it was tricky, I dread to think what a hash a less experienced surgeon might have made!!
I have a numb patch on my ear lobe too, & a little bit on my jaw- I’ll take that over pain!
I really hope that you’ll be back to singing in the not too distant future!
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Interesting, Jules! I never knew you had a numb patch on your earlobe…so make a liar out of me…
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This is great that you both are doing so well and recovering nicely. I had the same experience with Dr Samji and the surgery center and heading in for the other side in about 8 weeks. I was down to one pain pill on the 3rd day myself. I had some first bite but it went away within 3 weeks or so. I have struggled with jaw pain though but I have TMJ and was warned it would kick up. Ive been getting injections into this area and only recently felt good enough to schedule the other side. I still have numbness below the ear and towards the chin line. Im about 5 mths out from surgery. I notice every couple weeks a little bit more numbness go away. I feel more of a stretching feeling from below the ear towards the throat. It doesnt hurt. Massage person says its scar tissue. I keep stretching and working the scar tissue. Take care of your self girls and take advantage of time off. Its hard we we are on the go. I am thankful I was off work for awhile and tootled in the yard gardening. I did probably overdo it a few times though.
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Thanks for sharing that Jules! Dr Samji said the nerve that innervates the ear was right where he had to make the incision…(so wouldn’t that happen to everyone!?) It explains the entire area being numb…but doesn’t explain to me why everything will come back except the ear lobe? Maybe the nerve can recover except the end of it that supplies the ear lobe - the body is crazy! But oh well - as you said - numbness is nothing compared to pain!
Thanks for sharing this! I hope my FBS will go away like yours did! I am prepared for the numbness to last awhile…but hopefully 1% progress each day haha. My jaw is also still very sore and hard to open my mouth too much. Interesting about the scar tissue…I had wondered about that and if it could have any additional affect on my singing/muscles in the future. Time will tell…best of luck with your second surgery!
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Ive heard others here take 1+ years to feel fully recovered. As long as I don’t hurt, I dont care. 
Given you are dealing with vocal concerns, I’m sure that numbness (but not ear) could present with some hurdles.I would suggest working that scar tissue when you feel up to it. I didn’t feel comfortable having my massage person touch that area for about 4-6 weeks. Listen to your body and give it time to heal. I felt up to about 12 weeks out, I had a host of various pains, numbness and tightness. The fact you are doing so well post-op, I’m sure your on track for a good outcome. Thanks for the well wishes on the 2nd go around. Happy healing.
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Jessica, It sounds like you had a wonderful result – fantastic! I have a numb earlobe from my surgery. Initially it was densely numb with no sensation at all. It was strangely difficult to put in earrings because I hadn’t realized how much I was relying on feeling in the earlobe to guide the earring in. (Fun trivia: a friend who does robotics explained that this deficit when there is a lack of proprioceptive feedback is the same reason it is hard to program robots to do certain tasks that require more than moving something to a specific location in space.) In any case, over about a year I got partial feeling back in my earlobe. It doesn’t feel normal, but I can feel enough.
Hi, thank you for sharing that info! Question - was more of your face/ear/jawline numb for awhile? Mine is still totally numb…but Dr Samji said all would come back besides my ear lobe. I’m confused because if he cut the nerve to my earlobe and other things are numb…why will they come back except the earlobe!? So strange!
Hi! Do people generally find that their other side flares up after the 1st surgery? I’m very discouraged because I had close to no symptoms/pain on this side, but now it is starting to hurt some now. I’m hoping it’s because I’m putting extra weight on those muscles when talking to compensate for the swelling…and that when everything settles back to normal maybe the symptoms will go away. I really hope because the thought of going through this all over again for the other side is very difficult for me emotionally 
That said…it is also appealing to know you would be done with it once and for all…
Still getting better everyday, but the past couple days I have a lot of dizzy spells. I notice them even while sitting which I find strange. Is it because of the pressure release behind the ear when the styloid is removed? All the nerves are turning back on so I have a lot of interesting “pulses” going on throughout the neck and jaw line. I do find the right side flaring more than it did prior to the removal of the left styloid so I am hoping it starts relieving itself a little, it wasn’t this active prior to surgery.
Is there any remedy to the “first bite”? I do massage it daily which I think helps but every morning it’s back… especially with yummy foods. 
Hi jessicarae87,
Unfortunately, in bilateral ES, it’s very common for the remaining side to flare up after the first styloid is removed. My more painful side was done second & it REALLY made itself known in the months after my first surgery. When I had my surgeries done, Dr. Samji required 6 months between surgeries. I begged him to do mine at 3 months. He declined & it ended up being closer to 9 months between my surgeries. I guess that gave me more reason to be thankful for the great outcomes I had. I do understand the emotional anxiety that comes up when considering having to go through the surgery a second time. I was totally onboard w/ my first surgery, almost excited to get it done. I was a bit apprehensive about the second one even though I’d had good results w/ the first. The upside is that my second surgery was a quicker recovery for me & I was able to eat & drink normally immediately after my second surgery whereas it was a month or more after my first one before I could do that.
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Agree First Bite is no fun! Mine is waxing and waning a little bit in severity though…is your ear/cheek/jawline still very numb? Sorry you are having dizzy spells!!
Hi ESinLV,
The remedy for FBS is time, however, what I found/find most helpful is to stay very hydrated i.e. 60-80 oz/day of water, herb tea, spa water (lemon, cucumbers, berries, etc. floating in the water to flavor it but no added sugar). Caffeine, dairy, & sugar in your drinks are not your friends right now as they are dehydrating. When my saliva is more dilute my FBS is much more mild or even non-existent. Another thing that works intermittently is if I put a bite of food in my mouth & let it sit on my tongue for 10+ seconds before starting to chew. That allows my taste buds/salivary glands acclimate to the food before jumping into action.
If your pain is bad enough, Dr. Samji will Rx Gabapentin or some other nerve pain med to help you along until FBS subsides on its own.
I don’t have an explanation for your dizziness. What you suggested is a possibility. Another option is if you had bilateral ES, your remaining styloid could be causing some vascular compression & that can express itself w/ dizziness. An irritated vagus nerve can also affect equilibrium. If it persists, I’d talk to Dr. Samji to get his opinion.
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I had what sound like very similar symptoms to yours. Surgeon initially told me that I might not get any sensation in earlobe back. At first I was densely numb in all the places you name — just like novocain at dentist. After 1 year, I am the most numb in line alone my jawline starting just near ear. I really only feel pressure there and no other sensation. My ear un-numbed slowly from the top down. At this point the top of my ear feels normal and then it gets more numb as I go down. He said I could notice change even 5 years post-op.This was very weird to get used to at first — felt like someone attached blob of flesh that was not mine to my head. It is now much, much better and I rarely notice it.
In answer to your question, my understanding is that severed nerves can indeed regrow, although it is a slow and sometimes incomplete or not quite normal process. Here is an image of the greater auricular nerve, which is what innervates the earlobe, outer ear, and area along part of the jaw. http://www.ajnr.org/content/21/3/568
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my cheek was the first to “defrost” and seemed to come back pretty quick…within a few weeks. Below the jawline in the middle of the cheek is still pretty numb. Its down to about a quarter in size now. I never had any ear numbness like some but feel a tug on the ear from the incision. I think it depends on where your nerves are when they open you up…as that is how Dr. Samji explained to me. Everyone’s body is different and he often doesn’t know until he opens you up and see where everything is placed. I know they have to spread the incision and nerves open (that’s why they keep nerves monitored during surgery).
Hi
I think my face is starting to come back more, the numbness is finally starting to fade. The FBS is still there, it’s not as bad if I massage it before I eat. I wouldn’t quote it as being painful just a weird sensation. Honestly nothing is as painful as that elongated bone poking me from the inside. The right side is starting to calm down a bit as well. I’m hoping it calms down to the point of it being unrecognizable for a little while at least. Tomorrow I am going to start seeing my chiropractor for laser treatments on the surgery side. It’s a red light laser that helps improve circulation. I’m hoping it helps the last bit of numbness and the FBS to go away. The dizzy spells are better today so far…
Are you still taking pain meds? I tried to not take one yesterday, it didn’t pan out. 
That first shower was amazing! Oh and finally sleeping at a normal level too. Totally the little things everyday! 
Hope you’re doing well!
Have you tried singing yet?
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