Difficult to Diagnose? Anyone have this issue?

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 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. 

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 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!  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