Day 16 post op update and concerns

@amzi160586 - I just checked, & the facial, glossopharyngeal & vagus nerves all innervate our taste buds. Since these are 3 of the nerves most commonly irritated by ES, the sweet taste is likely a product of one or more of those as they heal. Much better than shooting or stabbing pains which some of us get!! I hope it does resolve sooner than later for you, though.

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Glad that things improved for you, and great advice :smiley: It’s so helpful when members come back to share their stories, especially when you’ve been through the same surgery.

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Thank you all for your posts, feedback and recommendations. I read everyone’s messages!!

Dr. H ordered the prednisone today, so I will begin this evening.

I have started to massage the areas affected (light, light, light facial and neck massage) and it helps a little. Also, the epsom baths really help - thank you for that info!!

I plan to continue to engage with this group indefinitely so that others planning to move forward with the surgery can have another voice to consider.

JPB

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I am so sorry that things are worse. Maybe, just maybe, you can have a respite tomorrow for Thanksgiving. Thank you for your feedback - I begin my prednisone tonight and no, he didn’t discuss the neck bra (no one even told me that existed).

Thank you!

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Just a suggestion, @JPB - Prednisone tends to be a stimulant. You might want to wait & start it first thing tomorrow morning. The worst side effect for me w/ prednisone (besides growing fangs & horns :japanese_ogre:) is not being able to sleep at night. Since that’s already a challenge for you, taking in the morning vs bedtime will potentially help reduce its effect on your sleep.

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Thank you!

This is a 5 or 7 day pack with intervals throughout the day and night. Unfortunately I have had these before and stayed up forever just as you described :).

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I couldn’t agree with this more! Well put per usual!
Happy thanksgiving!

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Happy Thanksgiving back, @Ddmarie & everyone else who reads this post!! :turkey::potato::croissant::dumpling: :blush:

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Hi - I have not read all the comments and I tried to respond when I first read your message. I had my first surgery at Northwestern University in Chicago with Dr. Bove (he no longer does the surgery). I had similar symptoms which I wanted to ignore. I called the nurse - nothing was recommended. On the 10th day, I was spitting blood, thankfully I was next door to NWU.

The nurse assigned, said it was his first day and he whispered that I had my cycle and that I was lying and I was so out of it and about to faint unknowing that I was slowing bleeding internally and dying.

As I stood up ready to go home, I began to vomit blood - I was hemorrhaging slowly in front of Dr. Akihiro Joseph Matsuoka, MD - I remember he grabbed his head and the room went into a code. In minutes I had over 10 people trying to find my veins and stop the bleeding.

It cost over $3MM to bring me back to life. I was laughing when the doctors told me that I was dying. I remember myself trying not to swallow a blood cloth and move sidewise (something I learned from a rural in hospital in Panama donated by my grandpa and where my sister and I worked as kids), as I was being aspired. I could hear the resident physician telling the nurse to stop aspiring. that is the last thing I remember while the doctors thought I was out… I spit the blood cloth before and don’t remember the rest. My kids and I were on vacation (Black Friday) with our friends and no one knew that next door to the Hilton in Chicago I was fighting for my life.

When the doctors visited after surgery - I don’t remember anything immediately, I asked the resident to leave, because she gave up on me.

My husband had died of service related causes (US ARMY) and my four kids were under the age of 10. I did not have the luxury to die and that was the reason I laughed when the Dr. Matsouka told me I was dying.

I thank Dr. Matsouka for saving my life. He asked me why I was laughing. I said that I did not have the luxury to die as I had just finalized the adoption of 3 little girls (siblings left in my care) and I had an infant. He asked me where was my husband and I said that my husband had died recently…The nurse told me that Dr. Matsouka had been in surgery for 24 hours and I do not know how he did it. Gd bless him.

I can’t stress enough how dangerous it is to ignore your symptoms. The stupid first day nurse, was gaslighting me and I never told Northwestern Hospital, but I did take a picture of that male nurse before I loss consciousness. I signed myself out of the hospital after surgery because I was going blind. THE BIGGEST MISTAKE made was to ignore my Zinc levels which caused me not to have taste for over two years.

My boss made something I couldn’t eat: shrimp and gave it to me as a remedy to restore my taste. Then he gave me tonic water: it worked… Technically zinc and a zinc ionophore…

I’m lucky to be alive. After surgery I moved to Panama where I hired someone to help me with the kids. I had the most amazing people from Venezuela helped me and worked for me. In 2019 during what I thought it was a short visit to New York, I felt the same light-headed symptoms and days later (not months), I was having surgery with Dr. DeLaCure. No, it was not a recurrent bilateral Eagle Syndrome. I was told recently that during the 2015 procedure, the elongation was not removed…

I’m still waiting to have a second (left) side procedure and experiencing all the symptoms. If I look down, I get disoriented and light headed. Dr. Rena (NYU Langoge) did a dynamic angiogram, but did not find a compression of my artery or vein, however there is no way he could replicate my symptoms (under sedation). I was in a car accident last year, which has made my symptoms worse… I have been waiting to have my surgery.

Also - anyone here is allergic to the anesthetics?

Thank you all for this group

You’ve been through so much, so sorry to hear about your husband…you sound amazingly strong, I hope that you can get your surgery soon :hugs: :pray:

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@JPB I was thinking, could you be allergic to the Monocryl/Vicryl sutures Dr Hackman uses to close the muscle and skin incisions? Some people are.

Your experience sounds horrible and I am so glad you remained vigilant in owning your health through that ordeal.

@vdm, that is possible - I will look more into that. My range of motion has been limited so I opted to begin some PT.

Still taking ibuprofen daily, CBD pill, and occasional anti-nausea meds.

Oh, and the first bite is real - 3+ weeks in and oh my goodness.

Thank you all!!

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I totally sympathize w/ your FBS pain! Mine would nearly drop me to my knees! I’d get an adrenaline surge & my heart would race crazily every time my first bite symptoms hit. It does get less intense as time passes & will hopefully go away completely before too long!!

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I am truly sorry about the very tough times you are experiencing. I hope you get some improvement and relief soon. D

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Thank you!!!

Hi just wanted to check in and see how you are doing?
I had to reach out to Dr H office today. Having some issues with stitches on right side of neck and under ears. Super irritated. I would’ve thought by now they would’ve dissolved? So will see what they have to say. Unfortunately I’m sad to report my left side jaw pain is back. I also let them know too. seem to have a lot of swelling on that side. :woman_shrugging:t3: just praying and hoping that’s all I can do. Hope you are doing better!

Thank you for checking in!

  • stitches - I have had issues with this too - what does yours look like? Mine is itching, rashing, and red (some pustules that have since decreased).

  • jaw pain - I have these random shooting pains that I didn’t have before in those areas, moreso when I am eating.

  • first bite - this was a fun experience. Drinking water prior helps

Please let me know what you find out when you speak with them. Are you taking ibuprofen still?

@Ddmarie,

I’m sorry to read that your stitches are causing trouble. It takes several months for the sutures to dissolve completely so you could be having a reaction to them. We had a member some years ago who had a painful scar for a couple of years, then an undissolved suture worked its way to the surface & her pain ended. I’m not sure if there’s a way to get dissolving sutures removed if they are causing irritation but I expect there must be one.

The jaw pain may come & go during healing. It’s most likely being caused by healing nerves. If the pain doesn’t resolve in a couple of weeks or if it gets worse, you might want to try a nerve pain med for awhile during your healing process.

I still get jaw pain once in a long while, & my surgeries were 8 yrs ago. ES is a gift that keeps on giving. :face_with_diagonal_mouth:

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Will keep praying for you, you’re having a rough ride…strange that you & @JPB have both had reactions to the stitches, I hope you find something to help. Prayers and hugs :hugs: :pray:

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