Oh wait a second, am I going to make first bites syndrome worse by eating things that trigger it? It just occurred to me that if it’s like the physical nerve pain then you need to let it be calm for it to recover. And I have been eating what I wanted to eat knowing that the pain is only momentary. But I certainly don’t want to make it worse or make it go on for longer than necessary. Also, I cannot remember the name of the person who has had surgery with Dr Constantino and has set up his own web page to help patients go through this and openly shares his experience with blogging etc. I’d like to reach out to him to see if he has the aftercare instructions at hand and would be willing to share them with me? I did find one other patient and reached out to them, but if they are like me, there is a good chance they will not see the message for days or weeks 
@akc -
I don’t think eating things that trigger FBS make it last longer or make it worse. It seems to run it’s course regardless of what you eat. I found pretty much everything set mine off, even water sometimes so short of starving to death or dying from dehydration, I didn’t have a choice of avoiding triggers. Staying super hydrated so my saliva was very dilute reduced my symptoms most. I also found that putting food in my mouth & letting it sit for a few seconds before starting to chew helped sometimes, too.
You can start range of motion movements right away, but limit your movements to those that don’t increase pain. Gentle muscle massage is fine, too. Just be sure to use lotion, Bio Oil, coconut oil or some other lubricant to help your fingers glide over your skin & not irritate it. We recommend not working on the incision until it’s pretty well healed somewhere between 3-4 weeks post op.
Barrootz is the member who did the video/blog: You deserve to feel better
I hope your TOS PT is tremendously helpful tomorrow. I am so sorry your shoulder pain is debilitating but hopefully will begin downsizing soon!!
I still ate whatever, didn’t make it last longer I don’t think, & it could be random, one day something would set it off and another day not 
Thank you both again for sharing this. I will continue eating what I want to then 
I got the surgery notes from Hepworth today. It reads that the accessory nerve was strangling the jugular vein and was also wrapped around both the styloid and the hyoid. So he had to do a fair bit obviously to get it from all of that. Oddly, and a plumber, he did not mention the other two nerves in the notes. I’ve read that from another patient where he told them about the nerve that was tangled up that the report read without even mentioning it. Since I got all this nutty activity though I’m going to assume that it was just an omission. But drats, it’s the silly things like that that you look forward to actually reading
I agree about missing details in surgical notes being disappointing. Mine didn’t mention that my GPN was wrapped around my styloid…I had a half paralyzed tongue & killer FBS to prove it though!!
At least you know that the accessory nerve was messed about with so understandable your post-op symptoms, and hopefully this will be very temporary for you 
Yes! Absolutely!
So haven’t heard back from Hepworth crew and understand it matters to get on a real steroid pack ( I thought that That is what had been ordered for me, but when I actually looked at the dosage, it was basically the equivalent of having 7 milligrams of prednisone for seven days and then 3 for 7… So definitely not what I should have been taking.)
I am really lucky to have my amazing neurologist in my corner through all of this. He took what I know is his lunch break yesterday for a virtual visit with me, Reminded me that I do have a very sensitive body and it has just been traumatized and will take some time to heal, and that I need to give it that time and stay resting (We were talking about my incredibly spasming muscles from all around my neck and both sides of the chest and shoulder area, left more, but even the right one has flailed after surgery, and range of motion of my head is almost nonexistent right now because it’s so tight and angry (And I’ve got a compound cream that I can apply and I am trying to stay really relaxed and not use it apart from when I’m peeking on muscle relaxants when I’m intentionally just love you a little bit in each direction within the area that it’s comfortable for me to turn a bit even if that’s only like one centimeter to the right…)…
AND he sent through a prescription for a proper steroid pack starting at a high dose and working down over the next 10 days.
And he also told me that I can use two different muscle relaxants at the same time but to just make sure and check that my breathing isn’t being impacted. I was really glad to hear that because the one that I’m on right now is really good for a couple of hours once it kicks in but you can only take it every 6 hours. Before Surgery, I had been taking a different one at night every day, and it’s one that you take every 8 hours. So he told me that I can work that one back in, And use both of them which hopefully will make a difference.
It is so important to be in the hands of a wonderful surgeon, but it’s also so important that something like a prescription for a steroid pack is attainable post surgery if there’s any kind of complication or things are overreacting or you’ve got all of this stuff from the irritated nerve going on. I will definitely share some feedback at the end of my follow up in 3 1/2 weeks. I know it’s not him, and I don’t think it’s Sarah… I wholeheartedly believe that if either of them thought that I was having a problem they would do something. I think our messages don’t get through. Calls aren’t relayed. So I’m definitely going to advise them that they need to get their staff to prioritize patients that are post op, and also put them in the front of the wait list?! Like seriously… I know that new patience that you to get in, but patients that are actually having post surgery complications definitely should be top of the list to be seen if there’s an opening (Oops that kind of came out as a little rant isn’t it sorry about that. I’ll keep it at any way :).
I’m ridiculously weak and exhausted as if I’ve ran a marathon all the time. That fatigue thing is something isn’t it but my goodness, having this weird funky thing that I can strap around that helps to keep my shoulder up a little bit, it really makes a difference for the moments that I am up. I actually managed to walk a whole block and then turn around and walk back home today. And yeah I felt like a random marathon. So I probably was not following my neurologist’s instructions with that one… :-/ And I know that fatigue will stick around for a while and slowly fade away with time as well. i’ve been through this part before when I went from being able to be doing a whole bunch of stuff or walk miles on miles to boom. I can get past boom again.
And yet, despite fatigue, sleep is indeed very elusive…
baby steps
Here’s one I’m trying to not think about so much although it’s kind of hard not to because it’s literally in my head: My head pain is completely back. It’s actually worse than it was before in this period… I’m not sure if I wrote that in one of my last comments here, I did have this weird event when one of the doctors was talking to me and I was sitting through the conversation which I never should have been. But my head just started feeling horrible in a really different and much more intense type of way. Not migraine but indeed completely blown up beyond what it’s ever been. Me being the dingbat that I am kept my poker face on and as soon as he left the room did exactly what mine knew my body needed, and lay down on the bed. Several minutes later I got up and went and looked at myself in the mirror and I was as red as a red delicious apple. So, I am hoping not, but I know that it’s possible that in that moment the Jugular went and decided to flop. That was actually the beginning of me having the old pressure related head symptoms back. And pulsing vision and beating vision and today I got my first pulsatile tinnitus back in the left ear.
But, I also know that it can take time for the blood and everything to figure out what it’s doing. So I am most definitely not giving up hope absolutely not! I might just be one of those people where it takes some time for my new exit paths to sort themselves out.
Okay, that’s me for tonight. Thanks for sticking this through and being there @Jules via Living with Eagle and @Isaiah_40_31 via Living with Eagle
Hugs to you both
Sadly there are ups and downs with recovery, so tough to get head pain and pressure back again… @Warrick has just posted saying the same after his surgery in the UK too. Hopefully it’s just swelling and the steroids will help 
Good that your neuro is so supportive, focus on the positives, it’s great you’ve been able to walk a little way today! You sound really strong, you’ve obviously been fighting a long time
Will keep praying for improvements for you
@akc - I’m sorry, too, that your symptoms have come back in force, but I agree they are likely due to the post op swelling especially if you’re more prone to having a reactive body as you mentioned. The correct steroid regimen should make a big difference but may take a couple of days for you to notice it since things have gotten so out of hand. Prednisone can also make it hard to sleep as one of its side effects so it’s recommended to take your dose in the morning as that can help reduce the sleep issue.
I will continue to pray for your symptoms to subside so you can notice measurable healing. I’m so sorry Dr. Hepworth’s ofc has been “difficult”. They deserve your rant. When you do talk to him, you need to be direct about the problem you had re: lack of communication when you really needed his advice & care post op.
Just wanted to pop in to very quickly share with you and Jules that yesterday and today were better than the days before I managed to walk an entire two and a half blocks yesterday… and today Jasper drove me to the park and we layout one of my soft mats and I just laid outside with my dog on the end of the leash enjoying the sun and the trees and the sounds all around me for about 1 1/2 hours. My head pain is right now as it was before surgery. That means that it significantly improved from what it was up until I started the steroids. So there’s a win
And, Speaking of focusing on the positives, although this would have been probably at the bottom of my list for things that I really wanted to resolve, the muscles around my left eye used to Twitch on and off regularly Ever since that incident that took me over the edge in 2019. Annoying, And silly though it is, embarrassing. Well, they haven’t switched a single time since surgery. So at least there’s that
@akc - HOORAY for small healing victories!! The lack of eye twitch must indicate your facial nerve is happier! I’m so glad your headache has reduced to a lower level. That must be a kind of relief, too!
Glad that you were able to get out for a little while! Very glad too that the steroids have improved the head pain, lets hope that it continues that way! Hugs and prayers
Hi I need to post an update soon, but have a couple of quick questions.
How long does it normally take for the obvious swelling around the incision point to go away?
And same with numbness - how long before feeling is restored - normally
I ask these understanding that we are all different and heal at different paces, but I am curious on these.
Thanks so much,
hmm - I have no idea how I made the font so large, and so can’t work out how to fix it… sorry about that…
It does vary alot, @PatientD has posted about advice to help with swelling, here’s a link:
Reducing neck swelling - General - Living with Eagle
Numbness can take a long time to go from around the wound & jaw area- mine improved gradually over months, I still have a couple of places which are numb, I’ll take that over pain! You can try stimulating the nerves in the numb areas with things like stroking with a feather etc.
@akc - Interesting about the font! You obviously have mad skills!
My incision was significantly swollen for about 4 weeks post op, but recently people seem to be having reduced swelling sooner so they either heal faster than I did or doctors are using better suturing methods. Remember that even if swelling is gone on the outside, it’s most likely not gone on the inside so continuing to take it easy is important.
I had numbness along my lower jawline on one side that lasted for months, as @Jules experienced. It was an interesting experience as the nerves started waking up as they’d alternate between making my jawline feel warm then cool. Back & forth or some days warm & others cool even though there was no differentiation in how the area felt to the touch i.e. it wasn’t warmer or cooler than the area around it. Just felt that way. It’s still slightly numb but I too opt for numbness over pain. 
Oh that’s really good to hear that it takes a long time for the numbness. And yes and totally on board with not having an issue with numbness especially if it’s over pain they can lose just checking to see if I’m a little bit behind the pack in my recovery because I do still have visible swelling and very palpable swelling at the incision site. My brain didn’t twig that of course numbness is a nerve thing and therefore will heal at the pace of a nerve.
Thank you so much @Jules For the links. Helpful! I tried to find that neck thing but all of the links that I can find for it at least in the US seem to be dead ends. It’s almost like the company stopped making the neck article but are still making compression sleeves and toes and legs et cetera.
On the very upside today is the first day that my brain and head felt like presurgery me. And of course I thought that I would be able to walk to the park and back, and yet by the time I got there I was so exhausted I had to call my husband to come and pick me up. It’s funny how the energy that you think you have can just dissipate in no time. But seriously, it was great to mentally feel like myself again. Again pre surgery me but I’ll take that for now knowing that that will get better with sign too.
Take care both.
Ah sorry the links don’t work for you. Is there anything similar out there/ I’m glad you felt a little better today
I’ve been praying for your recovery to progress more obviously, @akc, so it’s really good to hear that it is. Getting back to pre-surgery level is a good step in the right direction!
I don’t know how far away the park is, but I’m glad you felt well enough to embark on that trip even if your energy level gave out on you! It was definitely two months post op before my energy came back, but when it did, it seemed to come back overnight. I went to bed feeling the post op exhaustion I’d been having, & the following morning I woke up feeling “normal” for the first time since surgery. It was a gift!! I expect it doesn’t happen that way for everyone though.
Another tip to add. For when we hear somebody having first bite syndrome. Apparently Dr Hepworth is recommending Sucking on a candy called Warheads and then use act or other fluoride enriched mouthwash. The warheads are apparently a candy that are extremely sour. It is very painful in the beginning, however it works as a therapy to significantly speed up the process to healing that FBS. The person who shared it with me said that so far they are having really good results with it. I’m going to look for this candy and give it a go myself. PS mini update to say that week over week is better than the last not yet to the point where I am better than pre-surgery. But I am very happy with where I am today.