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Sun, Sep 8 1:36pm · ENT Issues: I don’t know what to do. in Ear, Nose & Throat (ENT)

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 🙂

Fri, Jul 12 12:19pm · ENT Issues: I don’t know what to do. in Ear, Nose & Throat (ENT)

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.

Feb 26, 2018 · Reactive Hypoglycemia & Chronic Sinusitis in Just Want to Talk

Your symptoms are complex and could come from many medical reasons. I suggest you get a comprehensive examination by a good internist to begin with then go to any specialists he/she recommends. Your other choice is to go to a comprehensive medical center that has several specialists evaluate you together as a team to efficiently diagnose the problem by using best practices and develop a plan that is holistic. It's incredibly important that you get a complete assessment especially since you're so young. Wishing you all the best. 🙂

Feb 26, 2018 · Reactive Hypoglycemia & Chronic Sinusitis in Just Want to Talk

As a nurse and a cancer survivor I strongly advise you to see an endocrinologist first and if they refer you to other specialists do so. Your other choice is to go to a comprehensive medical center that can have several specialists evaluate you together and then act as a team to diagnose the problem by using best practices and develop a plan that is holistic. Your symptoms are varied and need a thorough assessment. Good luck!

Jan 24, 2018 · Voice - hoarse, subdued, sluggish / requires more effort to speak in Ear, Nose & Throat (ENT)

Sorry, but I am just now seeing your September posts and replies. You did a great job of sharing your symptoms and I think I can suggest some things that might be helpful. If you could post an update on how you’re doing now and anything you’ve done to get further evaluated it would be great. I hope that you’ve found a doctor who can not only properly diagnoses you but give you a treatment plan that addresses your issues.

Aug 12, 2017 · Looking for Answers in Ear, Nose & Throat (ENT)

Gail, I realize you just saw your ENT Thursday but I’m hoping that visit went well and your physicians can address your concerns. I’m not sure where or what type of hospital St. Jude’s is – other than the Children’s Hospital in Memphis but I’ll encourage you to seek out a second or third or forth opinion as needed. Head and Neck issues are often difficult to diagnose and you need an expert opinion you trust before moving on to decide on treatment. I’m a Mayo Head & Neck patient for almost 7 years and a practicing RN for almost 50 years so I have grown to understand both sides of diagnosis and treatment. All the best

Aug 12, 2017 · Looking for Answers in Ear, Nose & Throat (ENT)

Michele, I just saw your post and checking in to see how things are going since your last post on July 26th. Like Jeff my salivary gland cancer was found and expertly treated by the Mayo Head & Neck team of Dr. Kasperbauer, Dr. Moore and Dr. Neff. I am 7 years out from my original surgery and continue to travel to Rochester from Kentucky to receive the Mayo’s expert care and most of all their concern. I hear that you and your daughter feel no one is listening to you and that the symptoms are merely minor. I’ve learned that most doctors aren’t real experts in finding the answers to those of us who have issues like your daughters. I wish you all success and know that you can fully trust the physicians at the Mayo.

Jun 28, 2017 · What are your suggestions for a quiet place to relax between appts? in Visiting Mayo Clinic

The Center for the Spirit is a quiet, reflective place I’ve used several times on each visit for the past seven years. There’s a desk with lots of paper and pens to write your thoughts, prayers, express gratitude, anything you want to share. I’ve been told the notes are taken to the Sisters at St, Mary’s. There is also two labyrinths in the Center, in the carpet in the middle of the room to walk and a wooden one on the wall to follow with your finger. They represent a journey to your center and back again out into the world which I find is an excellent way to quietly center my thoughts and relax my mind. I value that these spiritual experiences are available for everyone, regardless of individual beliefs, in the center of the Mayo Clinic!