ENT Issues: I don’t know what to do.

Posted by natalee_43 @natalee_43, Wed, Jun 19 9:54pm

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?

@natalee_43 Welcome to connect we are a group of caring ,helpful people so what helps us maybe something for you At first I was going to suggest using a neti pot and wash out your sinuses I use one at least once a week or more when my forehead hurts As you probably know green mucus suggest a infection Maybe someone will contribute to your other problems I'm sorry I can't help with this part Good luck are you seeing your primary Dr also?

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Hi @natalee_43 – Welcome to Connect! Your symptoms must be terribly frustrating and especially after not getting a diagnosis for a long period of time. You may get some good help here in the Just Want to Talk group, but you may have better luck in one of the more specific groups. If I were you, I would check out the Ear, Nose and Throat Group to help connect with people who may be having similar symptoms. Here are some links to help you get started:
https://connect.mayoclinic.org/group/ear-nose-throat-conditions/
https://connect.mayoclinic.org/discussion/mucus-and-bad-breathe-when-your-not-sick/
https://connect.mayoclinic.org/discussion/im-having-multiple-odd-episodes-that-are-keeping-me-undiagnosed-help/
Meantime, I'm wondering – have you gotten a 2nd opinion beyond the original ENT surgeon?

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@lioness

@natalee_43 Welcome to connect we are a group of caring ,helpful people so what helps us maybe something for you At first I was going to suggest using a neti pot and wash out your sinuses I use one at least once a week or more when my forehead hurts As you probably know green mucus suggest a infection Maybe someone will contribute to your other problems I'm sorry I can't help with this part Good luck are you seeing your primary Dr also?

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Thank you i have already used Neti pot and it hasn’t really hit my headache and I’m going to have a conversation to see about what my primary doctor thinks I should do. Thank you again for reaching out!!

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@debbraw

Hi @natalee_43 – Welcome to Connect! Your symptoms must be terribly frustrating and especially after not getting a diagnosis for a long period of time. You may get some good help here in the Just Want to Talk group, but you may have better luck in one of the more specific groups. If I were you, I would check out the Ear, Nose and Throat Group to help connect with people who may be having similar symptoms. Here are some links to help you get started:
https://connect.mayoclinic.org/group/ear-nose-throat-conditions/
https://connect.mayoclinic.org/discussion/mucus-and-bad-breathe-when-your-not-sick/
https://connect.mayoclinic.org/discussion/im-having-multiple-odd-episodes-that-are-keeping-me-undiagnosed-help/
Meantime, I'm wondering – have you gotten a 2nd opinion beyond the original ENT surgeon?

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Thank you for reaching out I’ve gone to about 5 ent before I went to Johns Hopkins ent ands she scoped me and even showed me and my sinuses looked clear. I even got a ct scan of my sinuses. I thought the same when I had green mucus coming that that’s an infection but the mucus doesn’t seem to be in my sinuses but laying in my throat. I will be sharing my discussion with the ear nose and throat conversation.

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@natalee_43

Thank you i have already used Neti pot and it hasn’t really hit my headache and I’m going to have a conversation to see about what my primary doctor thinks I should do. Thank you again for reaching out!!

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@natalee_43 I'm glad to hear this ,he may have some information and due testing the ent hasn't . Let us know how you are doing we care here at connect.

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Does anyone know what these symptoms could be connected to headache over right eye and forehead, facial pain, green mucus I cough up, white bumps on wrist, earache, fatigue, low grade fever, runny nose, nausea, loss of appetite, puffy eyes, and I have gotten dark circles. I have been on this journey for about a year and a haft symptoms have changed after about two misdiagnoses I finally found the problem that I needed my tonsils and adenoids to be removed. She said and a Johns ent surgeon with 12 years of doing this she said that she has never seen a case like I have. I even went to about 5 ent before and they said my tonsil were fun. For about two weeks after recovery all symptoms went away I then got SICK again and then I went back to my ent and she scoped me and I even saw there was so much mucus. After getting diagnosed with a major sinus infection, three weeks on antibiotics the swelling went down but everything else stayed the same. I went back to her yesterday and she said everything was clear and didn’t know what to do. I still have the same symptoms I have gotten ct scans of my sinus and neck, mri of brain, ekg of my heart, X-ray of my chest, Altria sounds of my stomach over this past year and I still am dealing with these symptoms. Does anyone know what I should do.

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@natalee_43

Does anyone know what these symptoms could be connected to headache over right eye and forehead, facial pain, green mucus I cough up, white bumps on wrist, earache, fatigue, low grade fever, runny nose, nausea, loss of appetite, puffy eyes, and I have gotten dark circles. I have been on this journey for about a year and a haft symptoms have changed after about two misdiagnoses I finally found the problem that I needed my tonsils and adenoids to be removed. She said and a Johns ent surgeon with 12 years of doing this she said that she has never seen a case like I have. I even went to about 5 ent before and they said my tonsil were fun. For about two weeks after recovery all symptoms went away I then got SICK again and then I went back to my ent and she scoped me and I even saw there was so much mucus. After getting diagnosed with a major sinus infection, three weeks on antibiotics the swelling went down but everything else stayed the same. I went back to her yesterday and she said everything was clear and didn’t know what to do. I still have the same symptoms I have gotten ct scans of my sinus and neck, mri of brain, ekg of my heart, X-ray of my chest, Altria sounds of my stomach over this past year and I still am dealing with these symptoms. Does anyone know what I should do.

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Hi @natalee_43, you’ll notice that I’ve combined your messages into one discussion that now appears in the Just Want To Talk and the ENT groups. I did this so that your story appears in one discussion and accessible to members in both groups, so you get the maximum support.

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@natalee_43

Does anyone know what these symptoms could be connected to headache over right eye and forehead, facial pain, green mucus I cough up, white bumps on wrist, earache, fatigue, low grade fever, runny nose, nausea, loss of appetite, puffy eyes, and I have gotten dark circles. I have been on this journey for about a year and a haft symptoms have changed after about two misdiagnoses I finally found the problem that I needed my tonsils and adenoids to be removed. She said and a Johns ent surgeon with 12 years of doing this she said that she has never seen a case like I have. I even went to about 5 ent before and they said my tonsil were fun. For about two weeks after recovery all symptoms went away I then got SICK again and then I went back to my ent and she scoped me and I even saw there was so much mucus. After getting diagnosed with a major sinus infection, three weeks on antibiotics the swelling went down but everything else stayed the same. I went back to her yesterday and she said everything was clear and didn’t know what to do. I still have the same symptoms I have gotten ct scans of my sinus and neck, mri of brain, ekg of my heart, X-ray of my chest, Altria sounds of my stomach over this past year and I still am dealing with these symptoms. Does anyone know what I should do.

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For me that is sinusitis. My daughter had that and after many years they had to operate her to clean her “senos nasales” ( I am sorry my mother tongue is Spanish) which are the holes under your eyes that keep acumulating flems. With that it was ended. Hope this helps

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@patriciagsr

For me that is sinusitis. My daughter had that and after many years they had to operate her to clean her “senos nasales” ( I am sorry my mother tongue is Spanish) which are the holes under your eyes that keep acumulating flems. With that it was ended. Hope this helps

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Thank you how did they find the mucus in her sinuses did she get a cat scan of that area because I did and nothing showed I even had a endoscopy through me nose to.

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Maybe you could see an otolaryngologist to check for nasal polyps? Also could try salt water rinse of nasal passages to clear up any problem there. Good luck but I’m sure all will be well soon.

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@huronshores

Maybe you could see an otolaryngologist to check for nasal polyps? Also could try salt water rinse of nasal passages to clear up any problem there. Good luck but I’m sure all will be well soon.

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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, I do not know if you are any better now, but I take an herbal supplement that is miraculous for sinus problems. I used to get sinus infections, sinus headaches, and was on antibiotics several times. I discovered this product at a mall, in one of the little kiosks there. The product is called ALJ. It is made by the Sunshine company. You will find that within about 10 days. your sinus problems clear up for good. ALJ is for the entire respiratory system. It normalizes things. I have recommended this product to a few other sinus sufferers, and now, they swear by it. You can get it on line, and a bottle is usually about 20 dollars, give or take a few dollars. Just type in ALJ, and various companies come up that sell it. I am no longer a sinus sufferer since I tried it. You won't be, either. Be well, Lori Renee

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@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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