My 28 year old son had a double styloidectomy on December 18th, 2023, with Dr. Hackman. It went well, no pain meds, able to eat and talk right away, and left hospital within 24 hrs. Its been about 3 months and I wanted to thank those that have been so supportive and helpful as well as give a surgery update. My son’s main symptoms were bad headaches, neck pain, tongue burning/muscular pain, and throat irritation. His tongue really flares up when eating certain foods, preservatives, Etc. (Negative allergy tests) but burning and pain is always there to some extent.
The surgery has helped the head and neck pain quite a bit. No help for the tongue and throat. The doc said that even though during surgery he couldn’t see the styloid impinging the jugular, that he can typically put his finger between the two and have a little extra room. However, he could not put his finger in this space at all. Therefore this rubbing or impingement was causing the head and neck pain.
As far as the tongue and throat, it could be trigeminal or glossopharyngeal neuralgia or something else. Nerves can still be healing as well. We are happy that some symptoms have greatly improved and hoping more time will help others.
Wishing you all well.
Thanks for the update ))). Glad he’s had some layers peeled off and hope for further improvement and or options for relief in the near term.
Hi @Kerri - I also really appreciate your update. @Jules has mentioned in the past that rinsing one’s mouth w/ baking soda dissolved in warm water can help calm the burning tongue/mouth sensation. That might be worth a try for your son. I’m sorry I don’t know the concentration of baking soda to water.
I just Googled burning mouth/tongue syndrome & this is one of the articles that came up. It recommends Low Dose Naltrexone or LDN as being helpful in relieving the symptoms. LDN has come up on our forum before as we have a few members who found it helped reduce their ES symptoms to some extent as they awaited surgery. It might be worth looking into to help your son be more comfortable as he heals & as these symptoms hopefully go away. There are other articles & suggestions which would also be worth reading. Obviously, starting a medication such as LDN would be under the auspices of your son’s doctor.
By Sarah Adams
Health Blogger at BuyLDN.com
(Yes she has a vested interest in promoting LDN but I posted this information because of previous LDN discussions on our forum)
Dr. Arpita Goswami Banerjee from University of Pennsylvania gave a case presentation on the use of Low Dose Naltrexone (LDN) in treating BMS for the American Academy of Psychosomatic Medicine annual conference in 2017.
As she describes in her case report:
“Burning mouth syndrome, which is a type of chronic pain syndrome, is caused by damage to the sensory pathways of the central nervous system…LDN exhibits paradoxical properties, including analgesia and anti-inflammatory actions. It promotes enhancement of endogenous opioid production and exerts a novel anti-inflammatory action by glial cell attenuation, decreasing production of proinflammatory cytokines and neurotoxic superoxides… LDN can be utilized in these patients to treat their recalcitrant pain…”
In a recent interview Cindy Camp Koshak describes her experience with BMS:
” I had skin hanging from the roof of my mouth, a very swollen tongue, dry mouth, and trouble swallowing. My mouth became severely dry and my tongue felt like it had been scalded with boiling water. The pain was unrelenting and I could find no relief.”
“I used to be consumed with mouth pain all day long prior to LDN, but I have days now that I don’t even remember I have BMS. I would say that my BMS is 60% better after starting LDN. My doctor and I are convinced that continued use of LDN will eventually eradicate the BMS…You have absolutely nothing to lose and everything to gain… LDN has taken me from a life of despair to feeling like I’m top of the world. Never in a million years would I have believed that I could feel normal again. I have been very fortunate to help others start their journey with LDN. I have seen them experience the same wonderful results as I have. We are so grateful for the positive changes LDN has made in our, and others’, lives.”
I would also check out the BMS facebook group, a lot of people there have discussed using LDN.
Thank you so much He has been on LDN for a month and is slowly titering up. No help yet but we know from others it can take a few months.
I’m glad to know that, Kerri. I hope it helps significantly w/o the dose having to be very high.
@Isaiah_40_31, it would be very helpful if instead the copy/pasted content one could simply see the original link to the page which the content was copied from.
Here’s why:
a) verifiability. Because without seeing the original page, how can we be sure it’s from there and not some random fake news page? Or that it’s not a cat ran across the computer keyboard? 
b) Quora is a big forum-style QnA portal, and just saying “it’s from Quora” is the same as saying “it’s from Facebook”. Some people posting on Quora have massive credibility and knowledge, some are magnetic healers, spammers, bots, and Quora is full of artificial intelligence generated content and other unreliable information
c) anyone who goes to the page where the content was taken from, will be able to get more context that led to someone posting the copy/pasted content
d) it’s a good tone to recognize and give credit to the original author who wrote a lot of useful information by providing a link to their work and letting others to learn their name and other content created by them, instead of just copy/pasting the knowledge 
I’ll keep you posted. He will hopefully try it for at least 6 months.Thanks again.
I’m sure @Isaiah_40_31 was probably just wanting to save @Kerri a bit of time reading & researching…
@Kerri I’m so pleased that your son has seen improvements with his ES symptoms and that his surgery was worthwhile…I hope that his mouth symptoms improve with time and that the LDN helps 
Thank you so much!
Thanks so much and I hope u r doing well
@vdm -
I tried to post the link for the page but it wouldn’t open once pasted. I tried many different approaches to get the link to that page’s content to be an active link but failed so I copied & pasted the information instead. I totally agree that posting a link is far superior to posting page content.
I’ve updated the original post to include the author of the original article.
I guess that’s this one?
Sorry, I just became very picky these days.
Yes, that’s the correct one. I’m not sure why it wouldn’t actively link when I pasted the URL into my post.
You’re correct that when information is posted here, especially if it is excerpted from a published article or website, the author needs to be credited. It was my mistake.
@kerri So good to hear from you! I’m so glad your son is doing better with neck pain! I sent a new message few minutes ago called continuation from 2022 with appt with Hackman and links to dicom. It hasn’t come through, maybe because I haven’t posted in couple years. When it does, I’m Hoping my experiences will benefit your son! In one of your post you mentioned his tongue is scalloped, I had read somewhere it could be thyroid related. Mine looks that way not around outside edge but across middle of tongue when viewing older scans. Please give me a little bit to check on where my new post is, but in meantime again so good to see your name pop up!!!
@Kerri. I had to get the moderator to assist me with posting in the right places. Please see the link to my most recent posts. For years I’ve been suffering from mouth tongue pain with that horrific burn. Recently I’ve learned something that helped, I’m hoping this may help your son. I’m going to add more to the post but for now the written part about iodine may be of interest. Regards.
Thank you so much for your concern and all the information. It means a lot. I am planning on thoroughly reading thru it later this week when i have some time. I just didnt want to keep delaying a reply so you know i got all the info. We so appreciate it. We also have a functional med appt tomorrow that may give some new info so i hope to have more to report. Quickly i can tell you that my son has a goiter as well but his thyroid blood tests are normal. He has numerous small nodules. I found it interesting you have some issues too. He also cant have any salt on top of his food without it making his tongue have major pain. He can have salt cooked in his food though. Ill be touch soon. Praying for you too
Hi @Kerri. Thank you for reaching out. Since you’re busy I will quickly tell you what I did today. I truly have been doing so much better since starting the low iodine diet, still on it, thing is I’m not sure what it’s doing to my thyroid or body in general SO today I put 1/2 of a 1/4 teaspoon of iodized salt on a few unsalted peanuts, I didn’t eat it all. Within few minutes my mouth started burning, the want to burn all over burn, it still is slightly, hoping it doesn’t go crazy. My mouth and gums used to be irritated to point I couldn’t eat hard foods but now I eat lots of hard foods like unsalted peanuts and unsalted plantain chips with no problem. Ever so amazed and grateful! I’m using non iodized salt with no problem but with low iodized food. I could go on and on but for now google iodine and burning mouth. Look forward to talking with you more. Best…
oh and iodine is in a lot products too like vitamins and red coated Advil (red color 40). Yep Ive learned a lot bout it…
Trying to find a good article without lots of reading so I copied this from webmd.com for now…
Iodine in larger amounts can cause metallic taste, soreness of teeth and gums, burning in mouth and throat
I’m pretty sure you have come across this one
It mentions that thyroid hormone issues and burning mouth syndrome may have a link or at least correlation.
Yes!! I have! Thank you. I apologize for not copying the link instead of copying info. It wasn’t as good as what you just sent. I may be wrong but I have a feeling there’s a piece of thyroid tissue in my mouth somewhere that burns when iodine touches it. I had read that iodine can cause thyroid pain. I had my thyroid levels checked today after being on the diet and off synthroid for little over 3 months. Curious to know what the outcome is.