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?

@sepsis48

Have a CT scan of your ear

Jump to this post

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

REPLY

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

REPLY
@jerryd

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

Jump to this post

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?

REPLY

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!

Liked by Lisa Lucier

REPLY
Please login or register to post a reply.