Difficult to Diagnose? Anyone have this issue?

AC1179

I am not sure I belong here or where I belong.  I seem to be getting nowhere with diagnosis of the problem and feel worse everyday. Recap- since February a Chronic everyday sore throat (back of mouth all the way down to my pharyngeal area (doesn't respond to antibiotics, allergy meds, etc), I've lost 27 lbs now with no effort and I don't come from a line of slim women.  My throat, especially in my thyroid/pharynx area feels very irritated when I breathe.  i run low grade fevers, have night sweats, and itch like crazy mainly at night. my dr was telemed only and it took me til June to get into ENT NP, then she said I needed to see dr, which took til the end of August.  Nasalpharyngeal scope showed a paralyzed right vocal cord. In August a lymph node the size of a pea appeared in my right side behind my ear (Lobe area) and quickly tripled in size. It is easily four times the size it was over the past 3 months. Head CT without contrast showed the paralyzed vocal cord and "mass abutting the parotid gland". Chest CT mentioned a lymph node in my chest subpleural cavity... I had a neck ultrasound which was actually just of the thyroid and she looked at the swollen lymph node when I mentioned I had it on my neck and thought it was a soft tissue ultrasound. The ultrasound showed a 0.8 cm (small) thyroid nodule a TR3? that is solid, hyperechoic, with Ill-defined margins. Ultrasound also showed the enlarged periauricular lymph node that is hypoechoic and well defined With normal flow. To the outside of that is a cutaneous periauricular complex solid appearing hypoechoic lesion with vascular flow, posterior wall enhancement and theough transmission. ENT said it's all outside his "wheel house" and is stumped. FINALLY got me into Oncology. I was automatically placed with the doctor I used to see for a bleeding disorder.  She barely glanced at my CT results... actually was basing off of one from 2 years ago til she mentioned kidney stones and I was like that isn't my current CT. She said she doesn't know anything anout thyroids and doesn't think there is a malignancy despite the daily pain in my throat and breathing, loss of 16% of my body weight in a short period of time without trying, night sweats, paralyzed vocal cord, etc.  She referred me to a surgeon to look into the thyroid nodule and the "cysts" on my neck But said most likely due to the size and location I'll have to go to plastics. I asked her if in the very short time she has looked at my info if she can guarantee I am not going to be back there in a year with full blown cancer because she is very quick to dismiss m symptoms Or because a radiologist overlooked something in the imaging or something was disregarded because to them its not big enough. The lymph node in my chest (right side also) she said that lymph nodes are normal.  If was a normal one why was it mentioned?  It's not like they mentioned I had two eyeballs!  So she saidnshe couldn't say I wouldn't be back there. So she said she wanted to run labs for rheumatoid conditions causing it. I see on my portal that came back negative. CBC looked ok too.  They were supposed to be doing a repeat neck ultrasound of the entire neck and a PET scan at my husband and I's urging more so... the ENT mentioned as this the next step just not in his wheelhouse of tests.  She said she had nothing to look at in one - despite the thyroid nodule, swollen lymph node and adjacent outer growth. The thyroid nodule wasn't at the recommended biopsy size but clearly with a paralyzed vocal cord, maybe it's location is just a bad place despite the size. Something caused one vocal cord to stop working. Finally she said she would. That was Friday. It's going on Thursday and no word from their office and never heard from the referral surgeon either. So I now have an ENT that said it's outside of his area and I need to see Oncology with my whole picture of symptoms, Oncology who is quickly dismissing me, and Covid cases are quickly rising here and must a matter of time before we are shut down to only essentials again or if everything remains open it will be very risky to go out as I have had sepsis twice. Once severely. I don't want to be going all over to figure this out in a second wave.  But I am here feeling horrible for 8 months... if it was only pain then I can see why they would dismiss me butnInhave a very visible mass growing out my neck that is now deforming me ear, I have lost a ton of weight, I have a paralyzed vocal cord. These are notnaubjective things. They point to a problem and I can't get a Doctor to actually give a care to figure the problem out. I have four kids 14, 12, 8, and 5 next week. They can see Mom isnt well, my husband who things normally doesn't phase can see I'm not well and even has gone so far as to call Places asking how to get me help and there just isn't a way til someone actually cares to help. My ENT had a Thyroid Study scheduled that I had to wait due to Contrast. I went to it today even though there is really no one interested in looking at the results.  I figure one more diagnostic tool to point in a direction.  I just don't know what direction to go when I can't get anyone to listen how horrible I feel. I have broken down crying to nurses so many times Begging for help. But the doctors come in and I get nowhere.  I know I am not crazy in how I feel and know something isn't right. Did anyone else have trouble with diagnosis?  I don't even know what forum if any my diagnosis would be. But it's in my throat and on my neck so I figure here is close. 

wbcgaruss

I Think You Are Probably

In the right area for your problem. This may be a far off idea seeing as how you have an obvious swelling at your ear but what meds do you take if any? Some of what you describe sounds a bit like a med reaction. Like I said I may be off base here but just an idea. I took a med one time for close to a year and a half before I had a reaction to it. OK, and if your vocal cord is paralyzed do you have any trouble breathing? During my last stay in the hospital I had several or more operations and either due to being intubated a lot or something else my vocal cords weren't working well and I was having trouble breathing due to it and they put a trach in which I had for a while till my vocal cords started working better again. This surprised me because I always thought vocal cords were just that affected your voice if something was wrong. Other than that I am stumped as I know you have been on here a bit talking about this. If I am right you had a CT Scan and a PET scan correct me if I am wrong but that being the case one of the scans would have shown cancer if you have any especially the PET scan. I don't know what to tell you as you've seen by many doctors but there is certainly a reason for the swelling at your ear and a 27-pound weight loss. Hopefully, someone who reads your post may have an idea wishing you the best-Take Care-God Bless-Russ

johnsonbl

Where are you located and being seen?

If your ENT and drs are "stumped" it's time to go somewhere where they won't be.  I work at an academic medical center and we are seeing patients as usual even with Covid....and Iowa is like the 5th worst state for new cases.  So getting into the right place isn't a problem if your local healthcare is doing a good job.

Have they actually tested your thyroid function?  An overactive thyroid can cause rapid weight loss, skittishness, etc...  It can be caused by nodules or growths on the thyroid...which it seems is an area where you are seeing a lot of issues.  As Russ mentions above, hyperthyroid can also be caused by a reaction to medications.

This is absolutely an ENT problem and I'd recommend finding a better one.

Brandon

AC1179

wbcgaruss said:

I Think You Are Probably

In the right area for your problem. This may be a far off idea seeing as how you have an obvious swelling at your ear but what meds do you take if any? Some of what you describe sounds a bit like a med reaction. Like I said I may be off base here but just an idea. I took a med one time for close to a year and a half before I had a reaction to it. OK, and if your vocal cord is paralyzed do you have any trouble breathing? During my last stay in the hospital I had several or more operations and either due to being intubated a lot or something else my vocal cords weren't working well and I was having trouble breathing due to it and they put a trach in which I had for a while till my vocal cords started working better again. This surprised me because I always thought vocal cords were just that affected your voice if something was wrong. Other than that I am stumped as I know you have been on here a bit talking about this. If I am right you had a CT Scan and a PET scan correct me if I am wrong but that being the case one of the scans would have shown cancer if you have any especially the PET scan. I don't know what to tell you as you've seen by many doctors but there is certainly a reason for the swelling at your ear and a 27-pound weight loss. Hopefully, someone who reads your post may have an idea wishing you the best-Take Care-God Bless-Russ

Hi. I haven't had a PET. My

Hi. I haven't had a PET. My insurance denied it. I had a Head and Neck CT without contrast And a chest CT with. I am on Pentasa for mild Crohns and Wellbutrin for Depression. It's definitely some type of Cyst on my neck by me ear. It started as a swollen lymph node and has rapidly grown encompassing my ear and my ear lobe is deforming from it and for some reason puffing up. I finally got into a head and neck specialist at the U of R who said he thinks the thyroid nodule and vocal cord Paralysis is related. The nodule is small, but to the back and near the nerve. He did a FNA biopsy in the office. 6 needles. He said if it comes back inconclusive I'll have to have radiology redo it because they should e better equipment. He doesn't think the nodule would cause the weight loss, fatigue, night sweats, low grade fevers, and feeling awful... he also thinks the swollen lymph node and adjacent growth On my neck/ear is unrelated to the Thyroid nodule and VCP. Seems off that everything is on the right side. I have had severe tmj on the right side for well over a year and a half. The he MRI report I recently found in my online portal says that there are cystic changes to the consular head. So ai can't help but wonder if it isn't all related.  The TMJ is on the right, swollen lymph node on right, growth on the right, thyroid nodule and paralyzed vocal cord all on the right. I mean it's all within a foot of eachother. now I wait for biopsy results. I have an appointment with another ENT tomorrow - l didn't cancel it despite having an appointment with head and neck.  I'm glad because this guy was a thyroid guy. So tomorrow this ENT is for the neck growth. I'm gonna beg him to numb it and just cut it out. 

AC1179

johnsonbl said:

Where are you located and being seen?

If your ENT and drs are "stumped" it's time to go somewhere where they won't be.  I work at an academic medical center and we are seeing patients as usual even with Covid....and Iowa is like the 5th worst state for new cases.  So getting into the right place isn't a problem if your local healthcare is doing a good job.

Have they actually tested your thyroid function?  An overactive thyroid can cause rapid weight loss, skittishness, etc...  It can be caused by nodules or growths on the thyroid...which it seems is an area where you are seeing a lot of issues.  As Russ mentions above, hyperthyroid can also be caused by a reaction to medications.

This is absolutely an ENT problem and I'd recommend finding a better one.

Brandon

I am in Central NY. Our

I am in Central NY. Our numbers are the worst they've been with Covid. We turned into an "orange" zone today. Not my individual town but everyplace I think he county surrounding us. I did go to Rochester about 1.5 hrs away and saw a head and neck guy today who specializes in thyroid. He biopsied My thyroid right in the office. Took 6 needles.  He said the thyroid nodule even though small could be causing the VCP because it is located toward the back and close to the nerve.  I think my thyroid functions have been normal range. He didn't think it would cause the sore throat, weight loss, night sweats, low grade fevers, chills, itching and generally feeling totally lousy.  

wbcgaruss

AC1179 said:

Hi. I haven't had a PET. My

Hi. I haven't had a PET. My insurance denied it. I had a Head and Neck CT without contrast And a chest CT with. I am on Pentasa for mild Crohns and Wellbutrin for Depression. It's definitely some type of Cyst on my neck by me ear. It started as a swollen lymph node and has rapidly grown encompassing my ear and my ear lobe is deforming from it and for some reason puffing up. I finally got into a head and neck specialist at the U of R who said he thinks the thyroid nodule and vocal cord Paralysis is related. The nodule is small, but to the back and near the nerve. He did a FNA biopsy in the office. 6 needles. He said if it comes back inconclusive I'll have to have radiology redo it because they should e better equipment. He doesn't think the nodule would cause the weight loss, fatigue, night sweats, low grade fevers, and feeling awful... he also thinks the swollen lymph node and adjacent growth On my neck/ear is unrelated to the Thyroid nodule and VCP. Seems off that everything is on the right side. I have had severe tmj on the right side for well over a year and a half. The he MRI report I recently found in my online portal says that there are cystic changes to the consular head. So ai can't help but wonder if it isn't all related.  The TMJ is on the right, swollen lymph node on right, growth on the right, thyroid nodule and paralyzed vocal cord all on the right. I mean it's all within a foot of eachother. now I wait for biopsy results. I have an appointment with another ENT tomorrow - l didn't cancel it despite having an appointment with head and neck.  I'm glad because this guy was a thyroid guy. So tomorrow this ENT is for the neck growth. I'm gonna beg him to numb it and just cut it out. 

AC1179 I Certainly Hope

The new ENT/Thyroid guy can narrow this down and help you out. If not I certainly hope he has enough interest to pursue your problem and seek other doctors and sources to solve this. All symptoms on the right side should lead to something found out but with all the testing I am wondering why something didn't show like in blood tests, thyroid, etc. Prayers your way and hope they find a solution for you soon your family needs you. By the way, try buying Boost VHC Very High Calorie online as every 8 ounces contains 530 calories. Hopefully, you may be able to get some of these down and maintain your weight for now-Take Care-God Bless-Russ

AC1179

wbcgaruss said:

AC1179 I Certainly Hope

The new ENT/Thyroid guy can narrow this down and help you out. If not I certainly hope he has enough interest to pursue your problem and seek other doctors and sources to solve this. All symptoms on the right side should lead to something found out but with all the testing I am wondering why something didn't show like in blood tests, thyroid, etc. Prayers your way and hope they find a solution for you soon your family needs you. By the way, try buying Boost VHC Very High Calorie online as every 8 ounces contains 530 calories. Hopefully, you may be able to get some of these down and maintain your weight for now-Take Care-God Bless-Russ

Thank You. I am Hoping even

Thank You. I am Hoping even though it's baby steps I'm heading in the right direction for a diagnosis.  Tgank you for all your help!! 

AC1179

Finally!

The past two days I have managed to get more done to figuring this out than I have in the past 9 months. After having the thyroid biopsy yesterday at U of R, today I saw a new ENT, the partner of the ENT I saw three weeks ago and he did a biopsy of the lesion in my neck!  Finally!!!  I have begging for it to be done since August and begging for help since first falling Ill at the end of February. Finally... he did the core biopsy, numbed it and worked at taking pieces out for over an hour. He looked at the CT before and said that he thought it was a cyst- the CT Radiographer referred to it as a possible epidermal cyst. So he went in to tell me it will probably go way down after the fluid comes out but they almost always come back. I mentioned the ultrasound showed it was solid and vascularmixed and would it mean a lot of bleeding during biopsy?  He said he really thought the CT was more accurate than ultrasound (wven though it was not ideal as it was without contrast).  Well he got in there and his demeanor completely changed Immediately. It was solid. No liquid, he said its remotely possible he didn't get beyond the wall but said he was as deep as he would go n clinic because of facial nerve And still no liquid.  Said he pushed and couldn't get any to well up so it is most likely solid. He asked his nurse for saline to send it in instead of however they normally do and told her when she calls them to come get it to tell them It is in saline and should be run through flow cytometry. She didn't understand what he said about flow cytometry and he said I'll tell you after and went in the hall to tell her about it.  I got the impression it wasn't a usual procedure.  He Went on to ask me a bunch of questions and seemed genuinely concerned and apologized for how much trouble I have had getting help. He went from rushed to spending two hours with me. I'm scared... but after almost Ten months now of not feeling well, I am hopeful to finally get answers. I don't know what will come about it the weeks to come but its momentum towards something. the Biopsy has left quite a mess. He used silver nitrate and stitched me up and tonight it started bleeding a little.  Is it normal?  I took Motrin because of the pain and probably shoudlnt have. 

 

I apologize for typos. My phone autocorrects and the font is so tiny when I type.  

wbcgaruss

AC1179 I Certainly Feel

Quite a relief that it looks like you finally have a doctor that is no pun intended digging into your problem. So I certainly hope that this doc keeps on it till it is solved. Sounds like he will. I am especially heartened that he was genuinely concerned and apologized for how much trouble you have had getting help. He certainly found a different situation once he got into the biopsy than he was expecting. I believe this may finally be your breakthrough moment. Certainly hoping it is-Have a Blessed Thanksgiving-Take Care-God Bless-Russ

AC1179

wbcgaruss said:

AC1179 I Certainly Feel

Quite a relief that it looks like you finally have a doctor that is no pun intended digging into your problem. So I certainly hope that this doc keeps on it till it is solved. Sounds like he will. I am especially heartened that he was genuinely concerned and apologized for how much trouble you have had getting help. He certainly found a different situation once he got into the biopsy than he was expecting. I believe this may finally be your breakthrough moment. Certainly hoping it is-Have a Blessed Thanksgiving-Take Care-God Bless-Russ

Thank you.

Thank you!  I am hopeful that the core biopsy done I. The lymph node/lesion may give some answers. The biopsy of my thyroid nodule the day prior popped up in my patient portal tonight that they did not identify any cells so it looks like I will have to go back and have the radiologist perform the procedure. I probably will wait to hear back the lymoh node biopsy befote undergoing that again. My PET scan was again denied until they have a biopsy reault indicating the need for one. So maybe soon and will provide more information.  Have a great Thanksgiving and thank you for all your advice and kind words. 

Amanda