You definitely have an interesting situation going on. I really appreciate the info you’re sharing as it will be helpful for other members who are having similar symptoms.
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Thank you 
@Kerri just in case you’re thinking about the low iodine diet @juliezuber had mentioned selenium. I wished I’d known about having my iodine level checked before the diet. When possible I’m going to ask for both iodine and selenium levels to be checked.
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Hello, glad your son is doing better. I had sever teeth, head and neck pain caused by my styliod. With certain movement it caused my styliod to press or rub against my trigeminal nerve. After surgery my symptoms started to disappear but my trigeminal nerve could easily be triggered, I did therapy to relax the muscles in my neck and shoulder……getting more flexible, anti inflammatory diet and not eating chewy foods helped. You son might be in the healing process for awhile. I would avoid trying the trigeminal medications over natural treatments if you can because they alter who you are. I am 12 years out of surgery on that side and that side the nerves is 95 percent healed. Wishing you well
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Thank you for sharing your very positive update, @ann! I really appreciate you taking the time to do that.
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Thank you so much. We know it can take awhile to see all the results of surgery and we sure hope they r as positive as yours. Dr. Hackman thinks my son’s symptoms of the tongue and throat pain and burning, and nose pain are related to the trigeminal nerve. It is nice to have feedback about your experience. He is working with a doc on diet now so hopefully that will help. Thank you and wishing u all the best
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Thank you for the information on the low iodine. I will check into this further. My son definitely cant put any salt of any kind on top of food. It has to be mixed in and cooked in the food. Hard to know how much it bothers him like that due to so many pain flare ups triggered by so many things. We did just find out he is very low in selenium. The functional med expert is helping to get this level up. He also told us that a lot of burning in the mouth is from bacteria. Swishing coconut oil for 10 minutes and then spitting it out is suppose to help get rid of the bad bacteria. Its helped people with bms You can look up oil pulling and see what u think. Ive just started doing it myself.
My son doesn’t have any visual issues on his tongue except the scalloped edges. I can see issues in your pictures and scans. I wish i could to figure out why you are having so many problems. I dont know how to read the scans unfortunately and dont know a lot about the thyroid. The one thing i can do is pray for you though which i will continually do. Pls continue to update as you find out more answers.
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@Kerri I know there are others suffering from BMS but your story stood out. Your son’s symptoms are almost identical to mine. The tongue/mouth burn and pain and nose pain. I had couple of sinus surgeries in hopes of them being the cure. I asked the ENT in our last conversation if he thought I had neuralgia of the sphenopalatine ganglion, which a dentist suggested I ask about receiving blocks for treatment, the ENT said yes I could have that. I just didn’t think so and now with symptoms decreasing by diet and thankfully I don’t suffer with migraines or chronic headaches though I will get a headache every now and then. The stories shared on this forum are extraordinary but the best parts are Moms and Dads helping their children with such dedication or even children helping their parents. You are the perfect staple for your son, the dedicated advocating Mom. Sounds like he has a good team of drs too. I’m praying that your battle will be won and over very soon!!
PS just a little reading regarding scalloped tongue and thyroid. There’s more that talk about the pain also. Oh and a FYI for anyone interested in the neuralgia mentioned above.
Best!!
Sphenopalatine Ganglion Block - StatPearls - NCBI Bookshelf.
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WOW! Another odd symptom to add to those we’re already learning about from you regarding thyroid dysfunction. Thank you so much for sharing this, @MandS. I continue to be in awe of the complexity of the human body!
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My son had 2 spheno blocks many years ago when his primary symptoms were the nose pain and throat irritation and they did nothing. He also had a GPN block 2 years ago when his tongue problems surfaced and it did nothing either. They were worth a try though. He had tried many many meds and even ketamine but nothing helped except for nortriptyline a long time ago.
Thank u for your kind comments. We all do what we can for our kids and loved ones. You are very admirable in your quest to help yourself as well as others. You have a lot going on at home too. Hang in there and hopefully we will all continue to help each other and shed light on solving these health problems.
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