Next surgery is scheduled for December 19th. I will be getting my left side done. I can’t wait to be done with it all. I can’t believe that I waited so long suffering through the symptoms thinking that I could deal with bc surgery is a big deal. Well it was also a big deal of how much better I feel since I had the surgery!!! If you are boderline as to get the surgery or not, I say do it! Thats my only regret is not getting the surgery sooner.
My dr is Dr. Samji in California is an amazing Dr. His staff are amazing as well. He hand picks them and they def take their time.
Has anyone else had first bite syndrome after surgery? Just wondering how long it lasts?
First Bite Syndrome can last from a few weeks to forever. It does get less intense as time passes. There have been people on this site who had it for a few weeks then there are several of us who still have it more than a year post op. I have found it is especially triggered by acidic foods like fresh pineapple, fresh citrus - oranges, grapefruit, lemons & limes, etc., & spicy foods. It seems worse on days when I don’t drink enough water (i.e. mild dehydration makes it worse) & being stressed or really tired also seem to make it worse. I have found some relief through chiropractic work on my jaw followed by cold laser treatment though this hasn’t been a permanent fix. You can try gently massaging the area around your parotid gland on a dailly basis to see if over time that helps it to be less sensitive. I keep thinking I should do this but haven’t been focused enough to remember to be consistent.
I hope this is helpful info.
So pleased that the surgery has worked well for you, and great news that you’re able to get the second side done with not too long a wait!!
I think the first bite does vary- mine seems to come back every so often, sometimes with no reason. I agree with Isaiah on the food front, and sugary drinks set mine off too. Mine has just come back with a vengeance as I’ve had to have two wisdom teeth removed:grimacing:
What is first bite syndrome and by any chance do or did your symptoms change daily? I do not have the same symptoms every day but I am garaunteed to have them weekly. Nausea is the worse and even after having my left side done IS HORRIBLE!!!
A part of me almost wishes I live near Dr. Samji.
My choices are VERY limited here.
I am being sent back to work tomorrow Dec. 19th despite telling my ENT that I still do not feel well.
When they completed my FMLA paperwork, they even indicated that I will not have any flare ups negating the fact that my RIGHT EAR HAS NOT been done.
I have challenged with believing that healthcare providers treat patients like this. And it is as if we have NOOOOO rights.
When my left ear was done, my surgeons performed my surgery wih an UNCLEAR CTSCAN. I know this because the night before is when I had my CT SCAN for surgery and the Clinician got ALL of the contrast in my arm NOT MY VEIN!! I’m still disappointed that they went through with the surgery and am not surprised that I still have symptoms.
WOW! That sounds like an unprofessional situation! I had only one CT scan done several months before my surgery. It was without contrast but confirmed my ES diagnosis. Dr. Samji also did my surgeries & it has made a world of difference. There are several people on this site who have traveled from out of state to California to see him & have their surgeries done. Dr. Cognetti in Philadelphia is also a good option.
First Bite Syndrome doesn’t cause nausea just pain. It starts in the parotid gland (found behind the bend in your jaw just below your earlobe) & pain shoots from there into the jaw & facial muscles on the affected side. The muscles spasm briefly then the pain goes away. This happens for the first bite & sometimes first several bites of a meal or snack. Subsequent bites of food cause no pain. Some foods cause a more severe reaction than others i.e. sour, bitter, spicy & very sweet foods & drinks are the worst. More bland foods generally don’t cause the first bite reaction. The problem tends to subside & become less intense as time passes after the initial onset. In some cases it goes away completely.
I’m so sorry you’re still not feeling well. I don’t know how long ago you had your first surgery, but bear in mind that ES surgery is major surgery and takes several months to a year for complete healing.
Praying for you to feel better ASAP!!
P.S. If you’re having nausea & have bilateral ES w/ only one removed, your remaining styloid could be causing that problem. In some bilateral cases, ES symptoms get worse after removal of 1 styloid because of the remaining styloid. For example, my neck, skull, ear & eye pain became worse on the side of my remaining styloid after I had my first one removed.
Thank you.
I guess my false sense of no more pain stems from the doctors telling me to go back to work; despite barely being able to keep my head up, beyond three hours.
My surgery was November 29th. It was a 911 situation. I passed out ( my heart stopped completely) twice. Once a Verizon and once dead smack in front of the ER doctor. Extraoral left side. Surgeons had never done an ES patient. The heart doctor tried to send me home 20 hours after surgery AND NO ONE gave me any helpful hints. ALL I kept hearing was WOW you have a REALLY RARE disease.
Thanks for explaining the first bite I DEFINITELY have that. I went back to the doctor because of it. He gave me antibiotics. It’s not as bad now but to be honest, the symptoms change sooo much, I lose my appetite a lot and generally go back to eating soups ands sweets:weary:
. My sleep quality is rough. I MISS getting a sound 8 hours of sleep. Wednesday I’m scheduled to be put on a heart monitor.
I’m back at home though. No work right now.
Lord knows I don’t want the kids to see me pass out😳
God knows I’m praying REALLY HARD for ALL of us.
Seems like Dateline, Dr. Oz, someone would help us Shine the light on ES!
Oh lawd😳
I had a dizziness test done and failed it on the unoperated side. I go for a MRI Thursday. The operated side still has this painful tickling/prickly feel that causes me to feel as if I will pass out. And I generally see the room spin. I keep pressing behind my ear as I did prior to my surgery. And the inside of my ear burns.
On the unoperated side I started getting sharp shooting pains Sunday. But none today🤔
Blessu2, do you know how much of the styloid the doctors took out? And how much is remaining? It’s very early yet, so it’s hard to say because you’re still healing, but if the doctors don’t take enough of the styloid out, the patient can often continue to have symptoms.
A couple years ago quite a few of us sent in our Eagles stories to the Dr. Oz show and the Doctors show, but they never responded or did anything. I think sending your stories in to these shows can’t hurt. Maybe if they see enough of them over the years they will eventually notice.
Its not listed in the report. I asked and he showed me using his fingers. LOL.
I’m going to NCBHWFU tomorrow. I mentioned getting another scan done to see how much was removed. Unfortunately, I do not understand how two inexperienced doctors performed the surgery without a clear scan. How long does the surgery generally take? Did you return to work? They said my heart stopping complicated matters more. They are exploring the idea of a pacemaker, due to my heart stopping.
I should have figured. They don’t want to do any work. Only the easy, fast money shows. Cali and Philly are very far from NC. Traveling would be difficult for me.
My vascular side wasn’t as severe as yours, but I had several surgeries and went back to work after 2 weeks. After one of my surgeries I had a harder time and it took several months for me to get back to work. I don’t know if a clear scan is that important as long as they get in there and see the styloid themselves. The doctor I went to at the Cleveland Clinic said my styloid was longer than it appeared on the scan, so I’m not sure how important the scan is to the surgery. It’s important to the diagnosis, of course.
By the way, I had multiple surgeries because they didn’t take enough of the styloid out on both sides. I’ve been all over the country to try to get all the styloids out.
Also, people with more knowledge may have better information on the clarity of the scans and the importance of that to the surgery, so I hope they can chime in.
How do you know which one you have? The only pain I feel on the opposite side are occasional shooting pains in my head. Most pains are on the surgical side but, not consistent. They are random. The only one that I am most concerned about is the pain that is in the same area as when my heart stopped. It causes my head to spin or drop.
4.5 doctor says it aint ES
Doctors use different measurements to determine whether a styloid process is elongated or not- the average is 2.5 cms though, so at 4.5 cms they would be elongated. If that’s something you want to look into (in case you have to fight your corner) there’s info from research papers where the doctors state what they feel is an elongated SP.
I think as Isaiah has said, sometimes you don’t always know what side is causing what symptom until you have both operated on, and wait to see what resolves. If you do ask for another scan, it would be good to try and have a CT scan with contrast, as this would show if there’s any compression of blood vessels in the neck. (Vascular ES can cause dizziness and passing out). But it won’t show any nerve involvement, so won’t explain some of the pain, and also it wouldn’t show if the Vagus nerve is affected, which can cause problems with heart rate too)
Blessu2,
I want to stress what you have observed: taking your pain meds for at least the first month post op is imperative. You can start cutting them back after the first or second week. The goal while healing is to keep the pain controlled because your body will heal faster when it isn’t in constant pain. The brain’s tendency is to fight to overcome pain rather than put effort into healing. It is most unlikely you will become addicted to your pain meds in a 2 month period. I worried about that myself & stopped taking mine too soon first time around. It set me back several days as I had to play “catch-up” to try to get the pain controlled again. I found as I got farther out from surgery, I could begin cutting my pain pills in half but still take them on the required schedule then over time I was able to take pain meds on an occasional basis & finally didn’t need them at all.
I hope this info is helful & encouraging. Please take it easy. This is a slow surgery to recover from. It is considered major surgery. Be patient w/ your body.
@kcannady,
I hope you are recovering well and that this time around there isn’t first bite on your other side. Have you recovered faster? Was this sides’ experience different than your first side?
I am going in with Dr Samji next week any advise would be great.
Hi Seamom,
Kcannady and I both had our left styloids out. My husband took care of both of us.
I won’t answer for Kara, but I can say that we have discovered no two people are the same LOL. I am thrilled absolutely thrilled that I am able to talk again. That was my main symptom. My voice was painful and I had episodes of total loss that lasted weeks to months. I can now communicate beyond texting and it is wonderful.
I had first bite syndrome today, but just a slight case.
I just erased a bunch of stuff.
BTW there are wolves in sheeps clothing here and they tried to scam the doctor. It made him think I was a scammer because I don’t cry over physical pain. It’s all OK now but I went into depression wondering what in the (&&%^# was going on.
Dear scammers if you haven’t met divine justice yet, let me introduce you. I have stories that will make you wish you never tried to prey on sick people. I have seen first hand what happens when a righteous person prays for protection and justice. I am not afraid, you should be.
Dear sick people be careful with your personal info. Protect the doctors who are trying to help you.
Dear everyone. WOW! so many things are better that I did not contribute to ES. Hang in there! I will be praying for you