ENT Issues: I don’t know what to do.

Posted by natalee_43 @natalee_43, Jun 19, 2019

I’ve been at Johns Hopkins, I had gotten a tonsillectomy there and my ent surgeon said she has never seen anything like I had. Previously I had gone through two miss diagnoses but all that time my tonsils were just really infected. The recovery was miserable but after that two weeks ALL my symptoms had gone away it was a breath of fresh air. But than after three weeks of feeling better I had gotten a really horrible sinus infection I was on antibiotics for three weeks and the only thing that changed was the swelling. I saw my ent again today and she said everything looked clear but my symptoms were still there and I’m beyond frustrated I’m upset that I have been on this journey for a year and a half does and I’m still feeling bad. I have gotten told that it’s in my head but I know it’s not. Does anyone know what could I have with the symptoms of headache over right eye and forehead, ear aches, fatigue, low grade fever, pain in jaw, burning sensation on my uvula in my throat, little white bumps on wrist, runny nose, bad breath, facial pressure, yellow and green mucus I cough up, nausea, loss of appetite?

@nursemaven

As a nurse of fifty years ae nd a patient with various ENT problems for many years the fact that you have several consistent and troublesome symptoms tells me that you need a comprehensive exam by a team of experts in various fields. I do not go on this forum to diagnose or to share other people's diagnosis since everyone's issues might be similar but are different in many ways.

I went to Mayo in Rochester almost eight years ago after being wrongly diagnosed and treated by ENTs for years. The comprehensive assessment and treatment I received there is the reason I am still here and finally found out what my diagnoses were. Our heads are very complex 🙂 there's simply too much there for one specialist to diagnose if there hasn't been a successful outcome from initial treatments. Mayo in Rochester is the #1 ENT/Head & Neck medical center in the country and well worth the trip to get a thorough assessment, not just a 2nd opinion. I live in Kentucky and didn't hesitate to get "out of town" to get a diagnosis that I could trust. I strongly suggest you make the trip – you deserve freedom from the horrific symptoms you've suffered all this time.

Again, I am a patient and a nurse but I have no financial or other connection to the Mayo except knowing the entire system is responsible for my current healthy life. I wish you all the best.

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Hi. Would you mind telling me what your diagnosis first was from the ENTs and then what Mayo Clinic found? I was wrongly diagnosed by an ENTs and have had horrible symptoms ongoing for 1.5 years after. I was going to make an appt out to Mayo Clinic but wasn’t sure.

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@nrd1

Hi. Would you mind telling me what your diagnosis first was from the ENTs and then what Mayo Clinic found? I was wrongly diagnosed by an ENTs and have had horrible symptoms ongoing for 1.5 years after. I was going to make an appt out to Mayo Clinic but wasn’t sure.

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Sorry to be long in getting back with you! My story is a bit unusual in my ENT here told me I had parotid cancer (which i did) but after surgery told me he "got it" and it was benign. So I continued to see him for about 16 more months till my symptoms got worse. It was then I realized that he had likely made an error but I didn't know what it was. So I went to a great NY hospital and had a biopsy then went to Mayo for another opinion. The NY hospital called me the morning I was to see my 1st doctor at mayo with my biopsy diagnosis of adenoid cystic cancer in my parotid -(very rare type of cancer, travels through my facial nerve rather than lymph nodes).
I was shocked to be told that I DID have cancer and my doctor didn't touch my parotid gland, let alone remove any of it – he lied.
I decided to have my surgery and radiation (my cancer doesn't respond to chemo) at the Mayo primarily due to the variety of physicians that did my surgery (needed 14 hours and 5 specialists). They expected less cancer spread than they found therefore the longer surgery – and the surgery and radiation stopped my cancer from progressing that was about to spread to my brain.
It really doesn't matter what my diagnosis is compared to anyone else's – if you have "horrible symptoms" for 1.5 years after what you think was an incorrect diagnosis, you should get at least one or two other opinions.
The Mayo is #1 in head and neck and for me – It's a BIG #1 – Without the initial care I received and the follow up care I've been given over the past EIGHT YEARS – (going to Minnesota from Kentucky tons of time) I would have left this earth a long time ago.
You asked my thought as a patient and I think you know it from reading all this…get an appointment at the Mayo ASAP
All the Best 🙂

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Have a CT scan of your ear

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@sepsis48

Have a CT scan of your ear

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Hi, @sepsis48 – welcome to Mayo Clinic Connect, and thanks for the suggestion. Have you also experienced ear, nose and throat (ENT) issues?

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Please see my posts re. swollen tongue, lips, mouth and into my chest cavity. My Mayo Immunologist was the answer.

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@jerryd

Please see my posts re. swollen tongue, lips, mouth and into my chest cavity. My Mayo Immunologist was the answer.

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Hi, @jerryd – yes, I see in your previous posts that you were diagnosed with angioedema and that as of some months back, it has been controlled with the medications prescribed. Are you still doing better? Have you had any side effects from the medication prescribed?

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Good morning, Lisa,
I continue to be thankful to have found the solution to my Angiodema. Having had the swollen tongue completely filling the mouth is concerning not to mention severely swollen lips and feeling the chest begin to swell as the Angiodema seemed to grow to an advanced stage.
The medications that were prescribed for me have kept the situation under control.
Lisa, you asked about side effects. I have experienced side effects. Thankfully, the immunologist I saw at Mayo Clinic in Rochester, MN foresaw that happening as, in her prescription for me, she stated that if I begin to have stomach problems (I did) make a change to this other medication.
I made the change to another medication she had prescribed and that got me through another 2-3 years which brings us to this year, 2019. Late it 2018 I began to experience more stomach pains and along with that frequent diarrhea. I have been seeing a gastroenterologist specialist. My visits and tests have concluded and show no problems.
During these later years I began to experiment with using less of the medications and less frequent and I have not had any flareups.
Presently (9/2019) I am taking 2 medications once a week with no episodes of Angiodema or stomach problems!!
I hope this person finds relief!

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