After thyroid surgery, feeling of face drawing or tightening

Posted by lilyann @lilyann, Jul 29 5:56am

lilyann here,

well, how do i start, i had already posted that i had 2 thyroid surgeries, iodine radiation, high dose. did not do the regular radiation that they wanted me to do because i did have to have some teeth removed. so this all started the last of 2022. where you go to the dr. and they want you to have an ultra sound. said i have papillary cancer. then the biopsy, then the ENT, find out your right vocal chord is paralyzed. the first local surgeon sent me to another atlanta surgeon, who said he would get my voice back but it would take 2 surgeries. well, i am in "whisper" mode today and still struggling to take in between coughing. i do have trouble swallowing. surgeries jan and mar, 2023, iodine radiation may of 2023. lots of pet scans, mri's. one time felt like i was starting to get lock jaw after the iodine radiation, called the dr. and she ordered steroid medicine.

what brings me here today is a thought in my head to research what is going on with me which really is no surprise, but, somehow needed to confirm it even if it was with AI.

this drawing or tightening feeling in my face, where i would actually stretch my face in all different positions, i could feel the numbing all the way into my lips, throat and tongue felt strange. all of my facial was feeling strange. then the ear pain of course, which as you all know was an early sign of thyroid problems. so then my eyes started feeling weird and getting harder to focus, my hearing was starting to be a problem. but, you know life goes on and you do what you have to do and now my temples feel strange. so i know i am not making any sense right now, but my head is and has been so full and of course my vertigo has always been a problem. spinning so bad the other day and just holding on for dear life to the table as i was standing up outside checking my flowers. then back of my head feels strange. so again, i thought, let me see what i can find out and of course whenever they do surgeries alot of nerves will be sacrificed in the deal. so i see horner's syndrome, haven't checked that out as yet. all these symptoms listed are because the cancer has metastised, i figured that. i guess i needed to see it in writing but then again it was listed on the last pet scan that the tumors have doubled since the last pet scan in march 2026. its such a feeling like your filling up a glass of water to a certain level, however, this is my head. weirdest feeling too. nerve compression, neurological compromise. these have just raised their head in the last couple of weeks. the stiffness in my head. the choking feeling has been going on since the biopsy in nov. of 2022, after those 4 big needles put into my throat and the anesthesia wore off, the next morning i text my sister that i felt like someone had their hands on my next choking me. i am still coughing as i was before all of this and that is when the one dr. told me its a thyroid thing. so that was actually the start of it all along with the ear pain. first 2 symptoms if that helps anyone. God bless us all.

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lilyann,
You are making sense. The outline of your symptoms is clear. I feel like you aren't safe checking on your flowers with vertigo. Some of your symptoms could indicate a stroke.
lilyann, call an ambulance.
Blessing and prayers for your safety.

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lilyann, I'm hoping you'll post an update.
Some of your symptoms the facial tightening could be the effect of varying thyroid hormone levels.
The numbing into the lips throat and tongue are a little frightening both for the risk of choking and because it could be a sign warning of stroke.
Do you have a plan for those doubling tumors. Have you seen the oncologist since your last PET/CT.
The feeling in your head like filling a glass of water could be sinus, and might account for the ear pain. Does the feeling come on suddenly? Is it persistent. Does it change when you change positions?
None of it sounds like Horner's Syndrome to me.
Do you know where the cancer has metastasized to.
What kind of flowers are you growing?

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After thyroctomy 2 years whether depression and anxiety overthinking stress continued? What is remady to overcome the situation

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smritisouth, it doesn't help to know that depression after thyroidectomy is common.
It can be tricky to get thyroid hormone replacement prescribed appropriately . If you aren't seeing a rheumatologist or endocrinologist with interest and experience in hypothyroidism you might. If you are already seeing a specialist and they are impatient about examining and reexamining your dosage, you might find another. It really does take some fine tuning. There is talk about protocol needing to change regarding optimizing FT3 replacement. It isn't much fun for you during the tinkering, because it so affects mood.
I would suspect that depression, anxiety, overthinking and stress are a result of inadequate replacement. Two years is too many years. But there could be other causes.
I hope you can find a doctor who will thoroughly examine every possible cause, and bless your days.
Welcome to Connect.

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Profile picture for gently @gently

lilyann, I'm hoping you'll post an update.
Some of your symptoms the facial tightening could be the effect of varying thyroid hormone levels.
The numbing into the lips throat and tongue are a little frightening both for the risk of choking and because it could be a sign warning of stroke.
Do you have a plan for those doubling tumors. Have you seen the oncologist since your last PET/CT.
The feeling in your head like filling a glass of water could be sinus, and might account for the ear pain. Does the feeling come on suddenly? Is it persistent. Does it change when you change positions?
None of it sounds like Horner's Syndrome to me.
Do you know where the cancer has metastasized to.
What kind of flowers are you growing?

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@gently
good morning gently, thank you for all your kind words and concern. i see the endocrinologist on monday the 3rd of aug. i did notice that my t-4 and tsh was higher than it has been in the past blood draws. i did see the oncologist after the pet scan on july 16, and she said i have 2 options: radiation or tracheostomy. so my next appt. with her is aug 27. so far as i understand the nodules have doubled in size and are remaining all in the neck area and collar bone. this is steady full head feeling and not positional vertigo, where the crystals shift. i have to be careful how i turn my head and then i also have the macular degeneration. its just weird feeling and i just take baby steps. thank god i still have my mind as i like to think up different things to cook and somebody has to do it as my husband has the shaking parkinson's. i am hooked on cooking lentils here lately. i still haven't checked horner's disease yet, so i hear what you are saying. i have these flowers and lots of pots of them that i have had for years, they look like petunia's but hang like a horn. old ladies use to call them "monkey faces". the deer were eating them and i was moving them around when i had that spell with the vertigo. thank you so much for contacting me and asking questions. so good to have someone to talk to and use my fingers to type. so i will close for now. have a wonderful day, and thanks again.

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lilyann, oh, I'm glad to hear.
It seems like you'll choose radiation over tracheostomy. Be sure and consult with a Proton radiation oncologist before your final decision.
I had my first encounter with vertigo; now I completely understand the difference now between vertigo and dizziness. I couldn't turn my head to make the freeway exit to the hospital. We'd had our first series of 100 degree days; I was dehydrated and lost my crystals.
Oh, lentils. You might send me recipe for these things you think of to cook up.
I know those monkey faces. Dracula simia.
Your garden sounds nice with the flowers and the deer. No deer here only racoons and possums and foxes.
I started this wonderful day with a moon walk before the sun came up.
Now, I have the dentist--too late to cancel

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I have Metastatic papillary carcinoma that was discovered in 2023. My 1st surgery was December 6th of that year. They asked me if I wanted a lobectomy knowing they may have to go back in afterwards to get the rest. I said take it all. Surgery ended up including a central neck dissection. Nine months later my tumor markers went up to 2.7. I had surgery again, this time they removed 47 lymph nodes in a modified radical right neck dissection. July 29th of this year, they went back in to remove a lymph node tucked in between my jugular, coratid and my voice box. They found a second one while in there. My jugular was damaged during the right neck disection so I was very worried about about going under the knife again. My doctor was concerned about the voice box. I have my voice but is very weak and fatigued. The previous two surgeries were followed by radioactive iodine pills. I got very high doses that damaged my salivary glands. I am what is called radioactive iodine refractory which means the cancer cells do not take up the radioactive iodine. My doctors hope I can go 3 to 5 years before needing another surgery and now the plan will be external beam radiation to make sure this pocket stays clear. Everything went towards my right neck so it is likely to go to my left side next. If it goes on the right again, surgery would be very difficult and will probably just do the external beam alone to control it. I will be happy not to have surgery for a couple years. I have CCDC6-RET which is a more persistent PTC. We are saving suppression drugs as a last resort. They found histoplasmosis in my lung when this all started and I had 5 months of treatment for that before they would address my thyroid. This all sucks but could definitely be worse. I hope with voice therapy, you get your voice back. Know you are not alone in your journey.

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Profile picture for smritisouth @smritisouth

After thyroctomy 2 years whether depression and anxiety overthinking stress continued? What is remady to overcome the situation

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@smritisouth, anxiety and depression are not uncommon with a cancer diagnosis. You might find these related discussions helpful:
- Emotional health after cancer: How are you doing really?https://connect.mayoclinic.org/discussion/emotional-health-after-cancer/
- Emotions and anxiety with a cancer diagnosis: How do you cope?https://connect.mayoclinic.org/discussion/emotions-anxiety/

In fact, Mayo Clinic recognized the need that cancer patients have for managing stress and created this online, self-directed course. It's free and anyone can use it.

- Stress Management for Cancer https://mccmscontent.mayo.edu/LSC/CEC/stress-management-for-cancer/index.html

@smritisouth, what do you do when you feel the over-thinking starting and the stress mounting?

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