Post-surgery post

[Thans]

Hi! Happy holidays, all. I’ve been waiting to post, as I’m only a few days out and some symptom clearance is unclear due to surgical pain. I had right side surgery with Dr Annino in boston on Tuesday, Dec 19th. I had symptoms for 24 years but was only told about Eagle syndrome by a dentist on Sept 5th. Sidebar to those who followed the insurance issue and hospital requests for $- I was not asked to pay upfront in the end. They accepted the in network single authorization. But they (Brigham and women’s) gave me a real hard time throughout the entire time prior to surgery. Once I got there, the care was amazing. Anesthesiologist was superb.

Surgery seems quite successful so far. I’ll attach my symptom list and what’s cleared already below. Dr. A found a large inflamed type 2 lymph node just about the same size as my styloid that he had to remove to get to the styloid. My scans had identified a parotid nodule as well but that was not addressed.

He said that my styloid was very close to my carotid and vagus and then in close proximity to nerves 9 & 11. So recovery is coming along but yesterday I developed a mild case of first bite syndrome. It’s like my parotid gland is on fire when I chew. Anyone have suggestions for this? I was able to do just Tylenol before this but when this started happening I also started getting throat spasms and coughing. Then I took some oxycodone. Helps a little. Allows for sleep.

So I am treating my throat with thick aloe, along with manuka, lemon, ginger tea. It’s helping, throat spasms are less. Now I’m putting heat on the parotid (on my right side). What a delayed reaction. Ps those hospital leg cuffs felt awful on me. My whole body reacted negatively. I wonder if it’s because of improper circulation I had for so long, maybe it was too much. My calves and legs were KILLING.

I’ve never seen a vascular specialist but I think I will to ask questions about this and the lymph node potentially impairing lymph flow. Chat GPT has been more knowledgeable and reliable than the docs (see attached). Oh, I asked Dr Annino to cut my digastric muscle due to my research and he did. I think that was a good move.

SYMPTOMS:

-JERKING: Hypnic Jerking preventing sleep entry, the minute my muscles relax into sleep (lessened by Diamox and atlas orthogonal). GONE ON RIGHT SIDE (GOR)

-SLEEP: Inability to stay asleep (waking from ear pain, throat pain). SEEMS TO BE GONE

-MUSCLES: cramping and knotted jaw muscles, SCM pain, sore spots around jaw, chin and all over head, sometimes neck. SEEMS TO BE GONE but have post-op pain still, hard to tell.

-NAUSEA: when something touches front of neck or if I bend down or travel (cars, boats, etc). Nausea when waking up and on an empty stomach GONE (unsure about travel / movement sickness). It’s UNBELIEVABLE that this gnawing gut issue was indeed vagus related.

-EAR: bilateral outer ear pain with almost any touch /pressure (unknown due to surgery pain). Left side pain still there.

-WATER BALANCE: Intermittent diabetes insipidus from empty sella (ADH issue) GONE. Sudden onset dry eye and throat. LESSENED dry eye. Dry throat GONE.

-NEURO: needing to keep left eye closed when laying / waking STILL THERE

-THROAT: cough when swallow, throat tickle/spasm STILL THERE

———-

Recent symptoms last few months prior to surgery:

-Shooting pains in inner ears GONE

-Pain up and down the sides of my head GONE

-Body pulsing when laying GONE

-Tinnitus in right ear GONE

-Weird head feeling / constant pulsing GONE

-blood stuck in head (strangle feeling) attacks GONE

-headaches, top of head tightness, daily head rushes. I THINK GONE

-Leg pain with exertion, bending (circulatory issue) GONE

[Leah]

Wow!!! Well, what an amazing outcome you’ve had so far! I hope this continues and you get your life back and can move on!

Thanks for the update ))).

[Isaiah_40_31]

You’ve given us some really amazing news, @Thans! Thank you for your post op update. I’m really glad the insurance issue worked out so that you could have surgery w/o that huge monetary outlay. It’s also really good to know you had a great surgical experience.

I suspect if the lymph node that was removed had blocked lymph drainage, having it gone should allow the lymph flow to return to a more normal level.

With regard to First Bite Syndrome, its onset is often delayed (it hit me on day 5 post op), but I’m not quite sure why. Perhaps the anesthesia, epinephrine & whatever else is put in the IV during surgery, holds back the nerve response for a few days. After much trial & error, the thing that worked best for me was to stay extremely/excessively hydrated (drink 70-100 oz of non-sugary fluid/day) as that kept my saliva very dilute which in turn seemed to lessen the intensity of the FBS symptoms. I promise they’ll reduce as time passes & normally go away altogether w/in a few months. If the pain is bad enough, you can ask your doctor for an Rx to a nerve pain medication which should help calm the pain.

Please remember that recovery is a bit of a roller coaster ride thus if some of the symptoms that are gone come back for a bit, don’t panic, they’ll most likely leave permanently later on. I hope you continue to feel better & better so you can enjoy this holiday season fully!

[Thans]

Omg so helpful, thanks for this!! Victoria, who was my surgery buddy, needs to read your response as well.

It was very entertaining that a few weeks before my surgery, I saw someone else post that they were anxiously awaiting surgery on the 19th with the same Dr. She turned out to be his surgery right before mine, and as I predicted, we were “suite-mates” or shall I say “curtain-mates” in their overnight recovery unit. It was so helpful to be connected with her!

And it was so amazing to have a longer standing connection with another person from this forum who ended up having both her appointment and surgery with Dr. Annino dovetailing mine a week before. We met up the day before my surgery (the day of her post-op) in boston. The most helpful part of my experience!

Amazing to link with wonderful folks, I feel so grateful.

One more thing is that, due to my reading about some of what Dr Costantino does and asking chat gpt about it in 10 different ways, I was able to speak with Dr. Annino about it (cutting into fascia/digastric). It was eerie, I mentioned it right as I was being prepped for surgery and he was like… “Oh, I can do that, would you like me to?”. After asking him what the downsides were, I saw no reason as to why he shouldn’t do it. I wonder if that pressure release has helped me.

[Jules]

So pleased that you were able to get surgery after all the hassle beforehand…and very pleased that you’ve seen improvements already, I hope that your recovery continues smoothly and that the new year is better for you

[Thans]

Thanks so much! Thanks for moderating and responding! So appreciative to you guys!!

[Brandy]

Glad you are healing well! Digastric muscle is typically involved with these surgeries. I know my Drs both mentioned to me that mine was compressed. Keep icing.

[Thans]

TY.
Usually surgeons just move it out of the way. I don’t think it’s common to cut into it. But it can help decrease pressure for those struggling with longstanding pressure issues, according to what I’m reading.

[Isaiah_40_31]

@Thans - thank you for the info about the digastric. I didn’t know it was related to pressure issues. I know I still have occasional swallowing issues & have learned if I massage my digastric (ouch!) & get it to relax, my swallowing problems leave.

Please share whatever info you think will help Victoria or send her this way to become a member so she can be fully supported by our forum.

[slekeille]

What a wonderful update! I am so genuinely thrilled for you. How cool that you had surgery the same day with the same surgeon along with another forum member - AND got to stay right next to each other over night!

I am having my right sided surgery on January 8 with Dr. Hackman at UNC and I am NERVOUS, but stories like this bring me so much hope.

Keep us posted on recovery!

[Thans]

Hi! So glad! Pls keep us updated!

[Kaycee]

My doc said no lemon after surgery or I would get first bite syndrome…eek

[Isaiah_40_31]

I’m not sure I agree w/ what your doctor said, but it might be true. Best to adhere to his recommendation than tempt fate by testing out his theory to see if he’s right.

[Kaycee]

Its like it makes you use your salivary glands more and he wants to keep them from having to work too hard.

[Isaiah_40_31]

FBS is caused by the parotid gland getting overstimulated by the glossopharyngeal nerve when you take your first bite or two of food. Normally, if the glossopharygeal nerve hasn’t been irritated by surgery (it often is irritated by ES surgery, however) then it’s a pretty safe bet that you can eat & drink whatever you want w/o getting a first bite reaction. Since it can’t be known for sure if the glossopharyngeal nerve survived surgery unscathed, it’s best to be cautious for awhile post op. I’ll add the no lemon (I’d also add no fresh pineapple as that sent my FBS symptoms into orbit!!) to my mental inventory to share w/ others who ask about FBS.

[Thans]

Hi guys! Just got back from my follow-up in Boston with Dr. Annino. He said that having salivary gland issue and first bite is a result of contact with the ICA (carotid). I’ll review what he said again as he explained more on it and then answered a bunch of questions…
Was a good follow-up meeting.

[Isaiah_40_31]

I’m glad he gave you an explanation that makes sense to you. I would also add it’s a result of the glossopharyngeal nerve being irritated during surgery.

[Thans]

Yes that would make sense. I recorded what he said, it was way over my head, so I’ll have to listen to again. ANS sensor connection to ICA.

[Isaiah_40_31]

I’ll try to look that up.

[Thans]

First bite syndrome is a rare condition characterized by severe pain in the parotid region (the area near the jaw joint) upon the first bite of each meal. This condition is often associated with surgical trauma or damage to the sympathetic nerves near the internal carotid artery.

The sympathetic nerves run alongside the internal carotid artery and are involved in controlling various involuntary functions, including the regulation of blood vessel constriction. If there is damage or disruption to these sympathetic nerves during surgery around the internal carotid artery or adjacent structures (such as in procedures like carotid endarterectomy or head and neck surgeries), it can lead to abnormal signaling and dysfunction, causing intense pain during the initial bite of food.

Though rare, first bite syndrome can occur due to surgical manipulation or trauma near the sympathetic nerves related to the internal carotid artery, leading to this distinctive and uncomfortable symptom upon the first bite of food.