I was wanting to see if anyone has had food and medication intolerance that got better after styloidectomy surgery. I started having intolerances to gluten/wheat/eggs and some other food plus intolerance to penicillin and other meds. Symptoms are red chest rash, tight throat, itchy arms low blood pressure. Never turns into anything more. I was wondering about it being from the vagus nerve that controls so many things including histamine and inflammation. Just wondering if surgery helped. 
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Interesting idea, I do think the inflammation from ES maybe contributed to a possible autoimmune condition for me (only mild so not pursued a diagnosis!), & others have AI conditions too…
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My son had bilateral styloidectomy in December and it did not help his throat and tongue pain that flares up after certain food, preservatives, spices, etc. He does not have any of your symptoms but his issues flare up more directly from these certain things.
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I have some similar symptoms, but I have Ehler-Danlos as well. There is commodity with eagles and EDS. Have you looked into Mass Cell Activation Syndrome?
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Yes but I don’t have it. Do you have MCAS?
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I am having symptoms. I am going to ask allergist to find out.
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Kerri have you guys tried H1 and H2 blockers for MCAS? I am being treated for it, do not have a confirmed diagnosis as the markers are hard to test for and aren’t reliable. Sometimes the symptoms along with response to treatment is used for clinical diagnosis.
I’m still working through getting it under control however, when I started the H1 and H2 blockers, my pain reduced significantly. I had to go off of those in order to have allergy testing and I could tell the difference.
So right now I’m taking Zyrtec twice a day and up to three times and Pepcid 20 mg twice a day, and two nasal sprays one is a mast cell stabilizer. It’s the only prescription for MCAS I’m taking at this point.
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I tried all the meds for MCAS even though my tests didn’t come back positive. It made me more sick so I quit everything. I’m hoping that getting my styloids out it will help me vagus nerve which controls histamine etc. 
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Hi, good to head from u. My son had tried those in the past. He tried many different ones for awhile but he could not tell any difference except some caused bad dry mouth. No more problems needed!
He can’t do nose sprays but that was also recommended to him. I am so glad they are helping you. They do help a lot of people. I’ve done a lot of reading on it. Do u feel like the surgery helped some symptoms though? I hope so. It helped my son’s head and neck pain but not the tongue and throat pain at all. I still think the GPN nerve is the culprit as well as MCAS. Have u thought of having a consult with Pam, the admin for the MCAS group on here? I’ve often thought of it but can’t get my son to do it. She seems really knowledgeable.
Please keep me posted how things go for you. I’ll be thinking of you
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Fyi, When I said Pam on here I meant on the Facebook group
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I just had my surgery yesterday with Dr Osborne in LA. When he opened me up to check for calcified styloid he actually found that I didn’t have Eagles but had adhesions wrapped tight around all my cranial nerves and jugular vein so he had to release them. I felt so much better when I woke up. You can’t see adhesions on mri or ct so they usually find them on accident. Dr Osborne and his team are wonderful. Hopefully some of my symptoms will get better!
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Praying that they do @nbjenn and thanks for the update, take care of yourself 
Hey there, so yes I received multiple benefits from the surgery. But these problems that I was having were definitely going on last year and complicated the picture significantly. Specifically the head pressure that I have was there and we chased compression longer than needed, but looking back there is no way I could have parsed these pieces apart. And as most of us have experienced, I have many issues, I knew this was an onion layer… and was hoping it was a bigger layer. I keep my chin up by knowing I could be worse off and try to move forward.
I do take amitriptyline and suspect that has helped me for years with multiple things… just found out it is a mast cell stabilizer as well…And have been intolerant of smells/foods all my life, so unfortunately it ‘seems’ that has been a bigger deal … and seems since it is hard to accurately diagnose. Hoping to start another stabilizer soon. The H1 and H2 help, but not enough…
All the best to you and yours )))
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Thanks Leah
A few years ago my son was diagnosed with MCS. We had never heard of MCAS, nor did the Environmental Health Center in Dallas bring that up at all. He spent 10 days there getting skin tested to various things. He did the shots for while after but they did not help. The only thing that helped with his smell sensitivity was avoidance and nortriptyline. After several years the nort started causing dry mouth, high blood pressure, and wasnt very effective. He still has to be careful with smells but is much better. It was only in the last year that I discovered MCAS with researching. The flare up of his tongue and throat when eating many things is really tough for him. So far, we can’t find anything that helps except trying to avoid a lot of food.
Please let me know what stabilizer you try and anything else u find is helpful or not helpful.
I will do the same as well. Thanks and all the best to you. Hope you get some relief soon.
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I’m so sorry he is going through so much trying to get help. I ended up going off everything because nothing worked and was making me worse. I just got surgery yesterday and they found adhesions wrapped around 3 cranial nerves and jugular vein in my neck. I know that the vagus nerve controls sooo many things including histamine, mast cells and allergies. Hoping it will help me.
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This is infact a very good topic, so thank you !
In my own expirence i did not have any digestive/food intolrences but however i had minor intolerence with certain smells and odors intolerences that has gotten better after surgery.
Before surgery i could not stand the smell of coffee, though i drink coffee alot !
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Good to hear!
So glad to hear your surgery went well and all that was discovered. Sure hope it makes you feel as good as new. Please keep us posted
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