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393685 tn?1425812522

Shear panic last night -

Sorry Friends- I was just shot yesterday after my meeting this the ENT. Let me explain.

I got to the appointment and remember I visited this ENT 3 days ago- well (and this is the shotty care I got inthe past from my other doctors) I assumed he knew about my thyroid and RAI and he didn't - I swear I shared the info with him - I just can't remember. I guess I presumed my last doctor would of sent information over - well whatever he knows now.

We talked about the nodule and he went through the paper report the Radiology dept prepared. He wanted to view the films, I didn't know he would need that. He did do an examination and claims my throat is so sensitive because of acid reflux. He looked way down and while in there said I was very red and wanted me back on a reflux reducer I chose Zantac. Even swollowing pills - they feel like they sit in my throat until small enough to go down. even a tiny 1/2 tablet of xanax.

He will not pass up doing FNA. He won't do any thing until that is done. As we talked we discussed the surgery He also will not do a total removal only partial. Left side.  He did agree being a person that had RAI does increase my risks of this being cancer.  He claims thyroid cancer is common.

How can I rush this situation? If it wasn't for the soreness in my throat to swollow , my left jaw and neck ache (in the back of my neck mostly) on the left. I probably wouln't want to push.  Also I feel like I have an ear ache on the left too. All my ache seems to be on the left side - suprise nodule there too.

I will be picking up the films at the Rad dept today and going to a "feeder" office of the ENT to drop them off. I really want to spend more time with him b/c of my thoughts. I don't care if I need to pay for another appointment- but what should I talk about?

I heard the maybe I could suggest a FNA during surgery? The sounds a bit far fetched to me - but if I can start the ball rolling quicker I want to . What about a CT scan on my neck and head - would that tell anything?

I had an xray on my chest last week = assumed fear of cancer because of my pain is was having and my MD said is was fine.

I think my head is rolling in fear over dying over this - and my panic may be to much. I can't believe how much time has gone by not feeling well and how much everything has been misinformed. I just feel like I had been thrown to the wolves.

Did anyone experience pain in there neck jaw throat when they found a nodule. 2 solid months of agony (it's like a bad strep throat feeling) and whiplash. My coughing has slowed alot since the prednisone and the inhauler Qvar. I picked up Advil to see if there is swelling in my neck and throat to control that. I really didn't help much last night.

COuld this be some sort of cold too? and I am just freaking out? Nothing seems to go smooth with me when it comes to being ill. I fight all the time.

thanks
19 Responses
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209384 tn?1231168306
DLA
Am sorry things have been so bad for you in recent years.  

Before thyroid I had ADHD.  Now I just have ADD.  I miss being hyper.  Can't even manage to take care of my own house.  My thyroid issues have had trouble with not being taken care of right and major hypo for many years.  It really wore my body down and caused my to gain a ton of weight without even having an appetite.

Use to live on 3-4 hours of sleep a night and about once a month I would sleep for a day or two and be caught up and go again.  Now I'm back to can't sleep enough.  Body craves it 24-7.  My house if mess.  My yard is a mess.  My life feels like it is a mess.

But of course the thyroid was only the beginning for me.  Now have many more things wrong with me, so guess I can't blame it all on thyroid, but that is when my life went to pot.  Developed Graves' immediately after my one and only chiild was born, so he has never even known what it was like to have a mother who could go out and play with him for long periods of time or who had the energy to go all the places he wants to go.

But this year I made a resolution that I am just going to roll with the punches and do the best I can.  Keeping a clean house and beautiful yard are not the things that I want to be remembered for when I'm gone.  I want people to remember that I always had time for a talk or have a glass of tea on the porch or go sing my heart out.  My son loves me very much and thinks I'm the best mom b/c I will sit down and watch a movie with him, play a game, or just sit and cuddle and talk.  

The meds, just have to be.  Don't like all the meds I have to put in my body either, but there are some things I just refuse to not take them for.  My antidepressants are the second most important things after my levo.  I try not to take anything for the arthritis and sinus headaches as much as I can, but have to give in some times and just take them to make it through the day or night.  What is the use in being here if I'm hurting so bad or so depressed that I can't go on with my day?

I've tried to get a whole new attitude.  Have spent too many years dwelling on what I can't do and trying to fight it instead of enjoying what I have.  I'm not dying of something, I'm just not the way I'd like to be.  So everyday I thank God for all the many blessings he has bestowed upon me.  And I have certainly had a lot.  This forum is one of my biggest blessings!

Dac
Helpful - 0
393685 tn?1425812522
Thanks all.

I wish I had some of this closeness with my friend here in my life. I just don't have really anyone here to lean on when I need support. I'm sure for the ones you have read my comments back to posters on questions and some of the other things I wrote - I AM a person who is out there for others. ....but this time at certain times. I do need someone for me too. Not seeing it returned as much right now.

OK -- Here's a few things to toss out to you.  I find when I get exhausted by the end of the day (around 4:00) - that is when my throat constantly hurts. like strep throat or something. Headache now for a full week and feel like I have a cold over 2 months.

I get up at 3:00am every morning - looking back before this thyroid stuff - I could go from the time I got up until 8 or 9 pm and start over again tomorrow. Now I struggle to make it to 7. Am I asking too much of myself?

I 'used to balance EVERYTHING home/work/kids/friends/pets/bills/cleaning/cooking/family..... all day everyday. Now --- it's work - and home Mon-Fri and weekend catch up as much as possible.

I feel like it's phemonia that I have. Since the prednisone the pain as subsided - but I still feel like I have an infection of such. I am waiting until Feb 27. Constant headache.

.........and the moodiness. I went through a very hard 5 years. Alot of things that most never have happen to them. Very awful things that have effected my whole life. and have really hurt me down deep in my soul. I find it hard to pull out of these situations that happened and "forget" as I always did and move on. Really I think I am sick b/c my body just wants a break. - but everyone knows how life is - we gotta keep going to pay the bills. I soooooo want to pack up and go on a 4 day warm weekend and just vegg. This snow here really has torn down me as well as many here.

Nothing feels certain anymore as it had. I knew from the moment I woke - how my day would be - sure bumps happened - but I was always in course. For the last 4 years. It seems like it winging it by the seat of your pants is the new day to day life. I hate that,

I am suce a firm believer that everything you put in your belly like meds there are side effects. I try to take minimal drugs to honor that - but not finding relief.

Thanks for the help - waiting for replies.

N







Helpful - 0
209384 tn?1231168306
DLA
Sorry to hear things have been so bad for you.  Am praying for you to have good answers soon.

Of course, I agree with the change of life thing.  Also agree with the second opinion.

I'm with Utah.  Think the surgeon is scared to death to do the surgery.  And he doesn't sound like he's real trust worthy when he's quoting old mortality statistics.  I would run, not walk to the next surgeon.  Even IF it is cancer, like they said, it's slow growing and you have the time to find a new surgeon.

Oh, and just to add my 2cents, I'd want the whole thing removed at once, too.  Had too many people on this forum who had to undergo the second surgery right on the heels of the first one.  Also have read how hard it is to keep meds adjusted if you have 1/2 of a thyroid working inconsistently.

Hang tough and know you are being well prayed for.  =)
Dac
Helpful - 0
398849 tn?1210135972
Hope you had a better 24 hours .  going back over you postings on this page it all seems to point to change of life with the drop in hormones playing havoc with your thyriod( as with most people on this website) as well as your mood swings and periods. The bloating, facial hairs and the reflux is all part of going through the change of life. The good news is some people go through it quickly 1 year and others go on for 10 years (have friends in both catagories). If you can afford it go to a Homeopathic clinic and run a parallel test (they have their own tests they run) and quiet often as with friends of mine they do get it right with a safer outcome. bestest
Helpful - 0
168348 tn?1379357075
The hormone thing is just awful ........... everything seems to be in control but then wildly out of control BTDT and Prednisone on top of it ... OUCH!  BAD COMBO!!!

Keep posting .............................the irreg. period thing .. Prednisone probably!!!!!

C~
Helpful - 0
393685 tn?1425812522
Thanks for posting everyone- I don't know how I did this alone for so many years. No matter who you talk to the "second opimion " is mentioned - so it shall be done.

Remember a while back I posted "whiskers on my chin" since that post - I notice I am losing alot of that facial hair and not plucking those coarse hairs at all. Like they have vanished :{

I really think my hormones are completely out of whack. I do believe I am in the stage of menopause due to the thyroid.  What exact blood test will sort this out? During my flip out episode (and facing possible cancer would also put anyone in panic) My "girlie day" came very unexpected. Only went 15 days without it then it came again. and was there only for 3 days.

I felt the moods elevate totally out of control. Between the stress of the nodule- and my cycle  - the bloating from either the prednisone or ??? - I thought I was going to hit the moon emotionally. The uncontrollable crying and mood fluctuations lasted 3 long miserable days. Now yesterday, even though I was stressed out from the doctors not seeing me - I could pretty much handle the ordeal. I was calm somewhat again. This morning too.  So again - could prednisone be the culprit of the slowly of hair and bring on the cycle?

I really think I can't balance my hormones. Spoke with the OB at my last appointment - and she blamed thyroid - . Whatever the cause I need to stabiliZE this when it hits and not sure what to do. I really refuse to take a anti depressant. I just don't think that helps the condition - only masks it. I think there is a way to balance without mood stabilizers.

Helpful - 0
398849 tn?1210135972
As scarey as it sounds and as fast as you want a solution. The wrong solution is not the answer. Get a second opinion is your first start even a third if they are contridictory. it has been noted that 40% of operations are carried out unnecessary. Also my girlfriend had one side operated on and then had to have the other side done. The reason she was told was that if it is only one side with a problem the other side will still operate and was a trial and see situation.
I have had acid reflux for 10 years and I have found that I cannot eat bread so I haven't eaten bread for 2 years and I very seldom have a problem with reflux now because I follow a few simple rules. I never eat 2 hours before going to be maybe a cup of green tea if I get desperate as its the undigested food that is either being forced or trickling past from your stomach into your throat. I have also found that stress seems to make it worse how this does this I don't know but I do some deep breathing excerises when it flares up.
I had the pain in the back of my neck so bad I couldn't look left or right but that and the crampy fingers etc have gone since I have started taking my iron and kelp tablets so maybe mine was different from yours but for the last week I feel wonderful. I guess my tests in 4 weeks time will tell.
Stay focused walk through this with a pencil and notebook in your hand to make sure you have all the questions you want to ask and all the answers they want to know.
bestest.
Helpful - 0
158939 tn?1274915197
Hey my dear friend!  I'd never think you are a loon!  

My gut instinct on this "doctor" is that he is scared of doing the surgery.  If you are uncomfortable with him *don't* rush into surgery with him.  Get a consult with another surgeon ASAP.  Wouldn't hurt to do the FNA but don't hang everything on those results.  I'm betting the "sausage" on the back of your neck is lymph nodes.

Is Chicago too far to go for a surgical consult?

Thyroid cancer is a "slow" growing cancer so it's not going to be much worse a few months from now than it is now - *IF* it is cancer.  I know this is frightening stuff - I really do.  You will be okay though.

Many of us with thyroid problems also have acid reflux (and gallbladder problems, and diabetes, and arthritis . . . ) so get that treated.  I found out mine was a bleeding ulcer about the size of a quarter.  Nexium is my life-long friend now.

We do understand about idiot doctors and the hassle of all the tests, having to make sure you bring *all* of your own labs with you, offices losing them, offices forgetting who you are, etc.  Just realize that *they* are the problem - not you.

Vent to us all you want.  We understand.

HUGS!!!

Utah
Helpful - 0
212753 tn?1275073111
i just hope you can get this all resolved soon. and I am praying you dont have cancer. I think your doc is a butt and if it were me I would get another doc asap. Hang in there my friend.eep talking to us. you have my support.
love Venora
Helpful - 0
168348 tn?1379357075
Yeah that sausage thing doesn't sound like reflux to me in a million years ????

They only took out half of mine based on FNA and then on frozen pathology on the table .... they usually only want to take out half unless they see Ca while you are on the table or confirmed with FNA before surgery.

Mine showed up 48hrs later on final pathology.  So, I analyze everything too, and asked my surgeon (ENT) what would he have done if knew I had these two microcarinomas when he was in there .. he hesitated for about 30 secs and then said, he'd have left the other side intact.  (OK cover his butt .... we know the drill).

When I asked and asked 4 opinions if I should have the other side out I was told same as you .. the nerve damage thing, and close to artery thing along with my own issues of not healing so great and could have worse scar tissue issues than any small cancer on the other side.  That, of course, was my case as it relates to me.

So you must wonder .. "how does she feel about all this" .. finding out 48hrs later she has cancers (small) and the other side is still there?  Well, it did a # on me .. took mos of soul searching and finally realized I am 80% comfortable with it .... I can always change my mind.

Not sure how this all relates to you but wanted to share so you know what you are feeilng is perfectly normal and it is VERY frustrating indeed.  I had to wait 9 weeks not knowing if I had cancer or not .. 9 weeks to wait for surgical date.  Those weeks were the worst in my life.

C~
Helpful - 0
393685 tn?1425812522
Lots of questions here I hope I can answer them as well as you can try to answer more of mine. Ready for the novel........

I have a friend that has another surgeon in Kenosha - I may check into.

The ENT now - wanted to view the films before moving forward on anything i.e. FNA. I sure it is just protocal from how I took our appointment. The reason you may feel he is dragging his heals could be b/c he order edto see those films first. The office I had them done at  do not have a delivery service from Kenosha to Milwaukee where he is. Ironically I found that out (due to my unTRUSTING ways.) -- Applecore it could be fate from God to on this ---

I called the Radiologist office after I left yesterday asking for confirmation that the films would be sent ASAP. That's when that office told me - Ahhhhhhh we won't ship them to Milwaukee. The ENT office seemed to make an attempt to get them there but the Radiologist office didn't comply. So today I had Scott go to Kenosha to pick them up. In the meantime I called the ENT's office saying maybe it would be best if I scheduled an appointment today with the doc to go over them. I had an appointment at 2:20. Scott met me with the films and we were running 5 MINUTES LATE. We called letting them know ---and got the story "well........... doctor has an emergency at the hosiptol and can't stay for your appointment".  He says to drop off the films and he will call you." I probably shouldn't of called letting them now I was late. and I feel like my "crazy" note mark records may be catching up with me from my past.

I got to the office at 2:26 and i couldn't see him. They said he will look them over and call me but just can't see me. So help me God I wanted to say "TOUGH" but I just left.

That's it. I even had to call back to give them additional numbers to call b/c most likely the home number he would call no one will be home when he would try. Yeah leave a message on my phone about cancer right?.  Receptionist seems a bit "whatever" to me too when I called her with those additional numbers.

At yesterday's appointment with this ENT he did state cutting nerves could be an issue and he chooses to see FNA prior to surgery. Lot's of stuff in there that could get damaged. I am still not sure why he only wants to do half of the gland - except he used that cutting nerve thing in his thoughts. Seemed more like a scare tacktic and worked by GEEEEE.   Kinda gave me the willie's when he said 60% of all patients 10 years ago died on the table w/ thyroid surgery . Better now - but he says if something was to happen on the table he would have a hard time writing he reasoning on why no FNA was done - and why he took the whole gland when only one lobe had an issue. . What's that about???  Covering his AXX.

I saw this specialist 3 times when I was with the PA who almost drugged me to death. The PA recommended him. and no one let this ENT know my history as a thyroid patient until now.

AR - 's answers . No scheduled return appoitment - No scheduled FNA.  was told to wait for a call after films are reviewed.  and - maybe I'll look into ENT in Kenosha.


Cheryl - I like your thoughts and I do think like you on some of this. My only argument to the ENT is taking the whole thing out. Why be set up for disaster again down the road.

Acid reflux = Ok all of you should know I came on this board with that very first question. I was suffering that bad when I found you. Yes I still believe it is and can be an issue for me. but -------Who has acid reflux in the back of their neck???

If I put my hand across the back of my neck near the skull it feels like I have a breakfast sausage from the middle of it to the left. If that is acid I am an idiot. The "sausage " goes from mild (which it is now ) some days to as big around as two fingers on others. I can buy the sore throat thing - but NOT the swelling. Right?

Again I fight.. I just am ready to hang it up. I can't even get a straight answer out of anything anymore. I am an analizer - that is driving me nuts.  Most of you that I talk to since my "tumor" thing  came up seems to get in and out and "fixed" quick.

What the he//?? am I an idiot?? --- do I not talk English?? What the he// ??

I fight all the time. I tried to trust and look where that got me - Kicked right in the AXX with an RAI treatment 5 years ago that should OF NEVER HAPPENED now I may have cancer and no one is moving . Again what the he//.

Now - if Utah is going to read this - Thanks friend. She really got the brunt of me last night and probably thinks I am a loone. It seems like I am  at the mercy of a bunch of butchers and can't do a dam thing about it.

Helpful - 0
Avatar universal
Mine is on the right side and like you I have pain in my neck and ear.  I had originally gone for MRI for pinched nerve in upper spine.  That's when it showed the spot on my thyroid.  After a thyroid scan and ultra sound I was sent to the surgeon.  I am being operated on the 28th to remove the right side thyroid.
Helpful - 0
168348 tn?1379357075
The redness is probably from esophagitis ...... ASK FOR the med that coats your stomach and esophagus and helps to heal ulcers and works to help with the pain ... oh my gosh .. brain freeze here .. I cannot recall the name of it ... ?????  It is a white, chalky big pill or liquid form .. OH CARAFATE!!!!  CAll him back and demand Carafate if he thinks the root of alot of this is from Reflux.

Here is my website on reflux in children:  Too much experience here; also, as other poster said too much can be blamed on reflux .. look @ my dd who just had her gallbladder out .. ON PREVACID on/off for YEARS AND IT WAS BILE REFLUX .. NOT ACID causing her problems!!!!  Post op 1 mo now for GB and NOT ONCE NEEDING PREVACID!!!!!!   It never was acid backwash in her case .. not at all but presented as such.

LINK:  http://chitchat9-ivil.tripod.com/

Scroll way down to the links on the bottom . The top is about infants, food problems, etc.  My son is now 9yrs old .. this website has seen and helped people around the world.  I "used" to be a community leader on a reflux board for 8 yrs .. to much insight here ...

Cheryl
Helpful - 0
314892 tn?1264623903
ChitChatNine also makes really good points.

She also has experience with the reflux and how it makes her ear hurt. I never would have thought it could effect you that way.

I also think it is good that he wants to review the films. Every good doctor I have had has always asked to see the films for himself.
Helpful - 0
314892 tn?1264623903
I'm so sorry to hear that you didn't get a clean cut explanation and plan for this.

I really believe a lot of docs blame reflux for too many things. I was told I had reflux and I knew it was chronic sinusitis, which the CT I had asked for months earlier was finally ordered. It showed I had a chronic infection in every sinus!

I would get a second opinion from a surgeon. True, they do like to cut, but they have also seen many cases and know the outcomes.

Did the ENT say what the redness in your throat is from? I am guessing from the reflux. The Zantac should be working in a few days, I think. If you can swallow it. They do make a liquid for babies....

I would insist that the FNA be done NOW! Why are they making you wait for a procedure that may rule in /out cancer? If it was a member of the ENT's family, it would already be done. AARRGGHH!!

I hope some of this helped. I think I pretty much echoed the above 2 posts with a little extra on the side.

Find another doctor for second opinion- bottom line!
Helpful - 0
200220 tn?1361951554
I had pain and coughing in my throat and haven't had any problems since.  The coughing was terrible and the pain was not so bad but it was there.  Don' t panic remember God is always in control.  I am in the same mode and He is showing me that He is in control.  Panic and fear are not from Him.  Love power and a sound mind.  Take you time and let him look at all this stuff and then wait for the answer.  I know you want it now - so do I but we have to be patient and wait.  I will be praying for your answer to come soon .   love linda
Helpful - 0
168348 tn?1379357075
Acid reflux affects my ear!  It aches when I have it ... I cannot figure out the corellation at all and I generally don't have reflux but when I do the ear hurts!

All you describe can be from reflux ... anything stronger than Zantac I would suggest taking to speed the process up and heal the redness, etc.

An FNA isn't a bad idea as this way you will have better idea before surgery what you are looking at and if Cancer on the FNA then you can insist on a total.

It is normal to freak out .... totally 100% normal .. and, you have been thru alot.

I like that he wants to view the films ..... he seems thorough even though it seems to be taking so much time.  

He just wants to be certain what is reflux induced and what is nodule induced before he can make a full judgement call I think ???

Sorry, I sound like devil's advocate ...... maybe that is what I am doing .... thinking flip flop of others ?  Maybe I'm right .. maybe I'm wrong .. ?

C~
Helpful - 0
359987 tn?1207673804
WOW!  It truly is amazing how doctor can be so different.  Although I have had an FNA already I do experience the same ear, jaw neck pain and my endo sent me to the surgeon immediately agreed i needed surgery.  He wouldn't take only half.  He claims that only sets me up to have to have a 2nd surgery later in life.  

I would see another doc.  or maybe like some of the others here have just gone straight to the surgeon skipping the endo.

I'm sorry you can't find answers.  Time to get DEMANDING!!!
Helpful - 0
213044 tn?1236527460
Sounds like the appointment was a lot of confusion. Very disapointing when you were looking for answers. Sorry to hear it went that way.

Not sure why he would insist on a FNA unless he is thinking he will only do surgery if the nodule indicates cancer. Don't understand why he would only want to do one side either, but I'm not a surgeon. I suppose he is worried about cutting nerves.

Have you scheduled an appointment with another ENT as well? You really should talk to more than one, even if the first one seems like a good one.

Did the ENT you saw schedule a FNA? Does he want your regular doctor to deal with that? I would think he would have made a call and set something up, even if it was with your regular Endo.

If you don't have an Endo, surely he could have called and set you up with one that he works with and got you fast tracked for the FNA. What's he waiting for if he didn't?

Keep feeding him any info he wants, get the fNA done, and see another ENT as soon as you can.

If YOU called it a nodule, and HE called it cancer, he should be doing SOMETHING to speed things up. Sorry this has you upset. It is understandable you would be disapointed and worried.

Maybe you do have acid reflux. Maybe that is agravating your throat. Maybe you had some swelling from a cold or infection, and you have some infected lymph nodes from that. Maybe there are a couple of things making your throat hurt.

That said, it sounds like the ENT is not moving very fast.
Sorry it didn't go as well as you wanted it to.

Do you have a return appointment with him?
An appointment for the FNA?
Going to see another ENT?
Sorry. :(  
Helpful - 0
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