Strange taste - change in taste

Posted by sapphire1158 @sapphire1158, Aug 22, 2023

I had a radical tonsillectomy in April to remove a HPV tumor on my right tonsil- had left removed as well - just to be safe - I had one affected lymph node in right side of neck- so had 41 lymph nodes removed - my mayo surgeon got clean margins and only one of the 41 lymph nodes was affected-I have had 2 negative blood tests for HPV— so at this time thankfully no radiation
My questions- has anyone that has gone thru this without radiation experienced an almost metallic taste in their mouth? As well as a general change in their overall taste??? Also I still have a soreness -tenderness unthreatening right side of tongue where I assume the “ big cut” was done during the surgery. Anyone else ever experience this issue
Appreciate anyone’s experience or thoughts

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My surgery for SCC (not HPV) involved ear and neck but just prior to surgery I developed a metallic taste in my mouth. It was because of the tumor invading the facial nerve. Once that section of nerve was removed and the nerve ends reattached, I had total facial paralysis of that side for many months/years. I was undergoing radiation at the time also so taste changes continued/worsened. Taste never went back to normal completely but metallic taste is long gone. I wonder if there was irritation or damage to part of your facial nerve during the lymph node dissection? Nerves are very slow to heal, so improvement could be quite delayed. I am still finding nerve changes over 11 years since that original surgery.

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I have appointment w surgeon in October- I am going to ask about change in taste- and I have no feeling on side of neck and lower jaw from surgery. Surgeon told me it could take up to a year for feeling to return and I think u r right— probably nerves affected by surgery impacted my taste buds. Thank you for your comment

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@sepdvm

My surgery for SCC (not HPV) involved ear and neck but just prior to surgery I developed a metallic taste in my mouth. It was because of the tumor invading the facial nerve. Once that section of nerve was removed and the nerve ends reattached, I had total facial paralysis of that side for many months/years. I was undergoing radiation at the time also so taste changes continued/worsened. Taste never went back to normal completely but metallic taste is long gone. I wonder if there was irritation or damage to part of your facial nerve during the lymph node dissection? Nerves are very slow to heal, so improvement could be quite delayed. I am still finding nerve changes over 11 years since that original surgery.

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How long did you have metallic taste? I have had initially metallic taste….now more bitter taste (and smell disorder) since Sept 2023. It came right after covid, so has been diagnosed as post covid syndrome, but I’m beginning to wonder about other causes. Months earlier, I also had several dental procedures, including wisdom tooth extraction and Moh’s surgery on temple. I’m desperate as the taste is constant.

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@sapphire1158

I have appointment w surgeon in October- I am going to ask about change in taste- and I have no feeling on side of neck and lower jaw from surgery. Surgeon told me it could take up to a year for feeling to return and I think u r right— probably nerves affected by surgery impacted my taste buds. Thank you for your comment

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How are you doing?

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@celia16

How are you doing?

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Thanks for asking - I had another appointment w oncologist in January- so far NAVars bloodwork negative 🙏🏻 - I go again in April- that will be one year from surgery- still no feeling in neck- so probably won’t come back— but otherwise I doing well!!
Still things don’t taste quite right —but— that’s ok!! I can live w numbness and funny taste as long as tests are negative!!
Agsin- thank you for asking

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@sapphire1158

Thanks for asking - I had another appointment w oncologist in January- so far NAVars bloodwork negative 🙏🏻 - I go again in April- that will be one year from surgery- still no feeling in neck- so probably won’t come back— but otherwise I doing well!!
Still things don’t taste quite right —but— that’s ok!! I can live w numbness and funny taste as long as tests are negative!!
Agsin- thank you for asking

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That is good news! Maybe with time things will improve….? Sending positive thoughts your way. Please post updates when you can. 🧸

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@celia16

That is good news! Maybe with time things will improve….? Sending positive thoughts your way. Please post updates when you can. 🧸

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Thank you sooo much ! Hope you are doing better and your taste issues have improved!

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@celia16

How long did you have metallic taste? I have had initially metallic taste….now more bitter taste (and smell disorder) since Sept 2023. It came right after covid, so has been diagnosed as post covid syndrome, but I’m beginning to wonder about other causes. Months earlier, I also had several dental procedures, including wisdom tooth extraction and Moh’s surgery on temple. I’m desperate as the taste is constant.

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@celia16 , The metallic taste I experienced was from tumor invading the Facial nerve and it was gone after surgery because a section of nerve was removed so I had complete facial paralysis on the right side. Honestly, after that big surgery with a section of skull removed as well as parts of middle ear, the dizziness and lack of hearing and facial paralysis and subsequent eye care all took priority over my taste. Then I started radiation and a targeted chemotherapy 5 weeks later and that blew my taste away. I didn't even like chocolate! That lasted for several months after the treatments ended. The return was gradual. I still have a hypersensitivity to salt 12 years later. I have a friend who had Covid early in the pandemic and lost her taste for over a year before it started to return. That syndrome can be very long lasting. I think that if your surgeries had affected your taste that it would have been immediately afterward. Have you researched scent retraining? I know that was one thing suggested for Covid damage. Perhaps there is taste retraining also?

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@sepdvm

@celia16 , The metallic taste I experienced was from tumor invading the Facial nerve and it was gone after surgery because a section of nerve was removed so I had complete facial paralysis on the right side. Honestly, after that big surgery with a section of skull removed as well as parts of middle ear, the dizziness and lack of hearing and facial paralysis and subsequent eye care all took priority over my taste. Then I started radiation and a targeted chemotherapy 5 weeks later and that blew my taste away. I didn't even like chocolate! That lasted for several months after the treatments ended. The return was gradual. I still have a hypersensitivity to salt 12 years later. I have a friend who had Covid early in the pandemic and lost her taste for over a year before it started to return. That syndrome can be very long lasting. I think that if your surgeries had affected your taste that it would have been immediately afterward. Have you researched scent retraining? I know that was one thing suggested for Covid damage. Perhaps there is taste retraining also?

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My goodness you really went through an ordeal. Glad you’re better. I appreciate you sharing. 🧸

How did you know you had facial cancer?

I have been doing scent retraining and think it’s helped a little. I guess they will reassess my smell at next ENT visit. I am wary of those scent cards. I don’t see how they could be very accurate, but we’ll see.

I like the idea of taste restraining. I’m open to anything. I haven’t heard of that. To me, my food doesn’t taste bitter or metallic, it’s that my mouth taste that way constantly. I know some foods have little taste to me, but others seem to taste it fine. So…idk. It’s frustrating.

I have lost 66 pounds, but on purpose for fitness reasons. I must say it’s been easier to turn food down.

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@celia16

My goodness you really went through an ordeal. Glad you’re better. I appreciate you sharing. 🧸

How did you know you had facial cancer?

I have been doing scent retraining and think it’s helped a little. I guess they will reassess my smell at next ENT visit. I am wary of those scent cards. I don’t see how they could be very accurate, but we’ll see.

I like the idea of taste restraining. I’m open to anything. I haven’t heard of that. To me, my food doesn’t taste bitter or metallic, it’s that my mouth taste that way constantly. I know some foods have little taste to me, but others seem to taste it fine. So…idk. It’s frustrating.

I have lost 66 pounds, but on purpose for fitness reasons. I must say it’s been easier to turn food down.

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Have you tried anything like Biotene for dry mouth? The lozenges and gel and stick-on disks have a mild mintiness that might help to cover some of the bitterness when not eating, as well as stimulating saliva production. I have to use these nightly for dry mouth. I had a pain in my ear that became unrelenting for 5 months and saw my PCP, 3 different ENTs, and finally a request for referral to U of Michigan ENT where I got a diagnosis of SCC in external ear canal deep by the eardrum. A very rare location, and when UM could not fit me into their surgery schedule for over 7 weeks, I inquired at Mayo Rochester and had surgery less than 2 weeks later. There is nothing comparable to the quality of Mayo Clinic in my experience.

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