1. < Ear, Nose & Throat (ENT)

Your thoughts re: Minneapolis Mayo vs Arizona Mayo vs. Florida Mayo

Posted by claudia72 @claudia72, Feb 26 5:26pm

Hello, does anyone have any thoughts/feelings about which Mayo to go to for somewhat complex ENT issues? Back in October in 2004, I was seeing a neurologist because I have had neuropathy in the toes of both my feet, which is what led to the MRI of my upper spine when the Vallecular cyst was found. I went to MDA and was very disappointed as I had a trainee who did the laryngoscopy & could not see the actual cyst. She didn't think it was cancer. But I have a lot of discomfort and pain, The doctor came in for about 2-3 minutes after the trainee left. The cyst is there and very visible in the MRI and CT scan. Here's the list of findings so far: Vallecular cyst, midline thornwaldt cyst, lingual tonsil hpertrophym white cystic lesion right of midline, vallecula obstructed by lingual tonsil, mild vocal fold atrophy and supraglottic compression and nodules in my upper lung issues. Aside from being in pain in my throat much of the time, I have been feeling emotionally paralyzed since this all came up back in late November. And physically, I feel worse & I need help badly. Back in 2003/2004, I went to Mayo in Minnesota because of throat pain, and they removed one of my thyroid glands because I had Hurthle cells though I did not have cancer. They removed it because of the risk of developing cancer. They said they weren't sure what was causing the pain. They tried to do a test to see if I had reflux but I was unable to swallow the tube that has to sit in your stomach for 24 hrs. I think it was called 24hr. PH monitor. Dr. Eric J Moore was my surgeon and doctor at the Mayo in Minnesota. I was confident with his abilities & very satisfied with his surgery. But I was much younger, like 20+ years younger. I am going to be 73 in March.I lived with it for many years and it slowly got better. Then it started to come back again. Now I have pain, a feeling of intense fullness in my throat, like it is swelling up, burping, which I never had before, and voice changes. Sometimes when I am talking I just go hoarse and it is very uncomfortable to talk. I cannot sing anymore because I cannot hear myself out of one ear, so I don't know if I am on pitch or not. It's all very annoying & scary too. I don't know where to turn. Vallecular cysts are considered rare so I would like to go somewhere that can deal with this and hopefully get me some relief. We live in New Mexico so I was thinking it might be less stress for my husband & to go there IF I can get in. OKAY-sorry for all the details and length. I guess when you stop talking you start writing. Any thoughts about the other Mayo's? And anyone deal with anything like what I am dealing with? Oh, one more thing, the "trainee" at MDA told me that they don't take those vallecular cysts out. Yet my research shows that when they are causing someone discomfort they do but it is a very tricky high risk surgery because the vallecula is in the area of the airway.

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churchlady | @churchlady | Mar 4 2:59pm

Mayo Jacksonville is top drawer!

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Mentor
Sue, Volunteer Mentor | @sepdvm | Mar 5 7:41am

Hello @claudia72. I had my initial temporal bone resection in 2012 at Mayo Rochester by Drs Colin Driscoll and Eric Moore. I continue my cancer monitoring there currently and have nothing but great things to say about that team and the ENT department. I am alive today because to their prompt and accurate care. The team approach of bringing in other specialists when needed was always accomplished seamlessly. I don't know how any medical department can operate any better than ENT at Mayo MN. We have had long term experience with Oncology there and have found the same treatment. Our experiences with Urology started rather rough, but have been improving since my husband's bladder cancer diagnosis in 2019. If ENT in Rochester is an option for you, you can't go wrong there. Good luck addressing those symptoms, it sounds miserable.

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1 reply
claudia72 | @claudia72 | Apr 22 10:40am
In reply to @sepdvm "Hello @claudia72. I had my initial temporal bone resection in 2012 at Mayo Rochester by Drs..." + (show)
@sepdvm

Hello @claudia72. I had my initial temporal bone resection in 2012 at Mayo Rochester by Drs Colin Driscoll and Eric Moore. I continue my cancer monitoring there currently and have nothing but great things to say about that team and the ENT department. I am alive today because to their prompt and accurate care. The team approach of bringing in other specialists when needed was always accomplished seamlessly. I don't know how any medical department can operate any better than ENT at Mayo MN. We have had long term experience with Oncology there and have found the same treatment. Our experiences with Urology started rather rough, but have been improving since my husband's bladder cancer diagnosis in 2019. If ENT in Rochester is an option for you, you can't go wrong there. Good luck addressing those symptoms, it sounds miserable.

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Thank you Sue, for responding back to me. I know it has been quite a while since I have been on Mayo Connect. As it turns out MDA was not actually able to view the vallecular cyst with the laryngoscopy because of bulky tissue at the base of my tongue. And something with my tonsillar tissue, which is weird because my father took my tonsils out when I was a child. He was a Physician & surgeon back in Illinois where I grew up. I am still mulling over whether or not I want to go back to MDA. They want to do another CT scan to compare from the one I had back in Nov. to see if anything has changed. I do don't want to go back unless I actually see the doctor not a trainee... I cannot believe that I feel so emotionally paralyzed that I haven't been able to take appropriate action. I think I mentioned this in my very first post, but I too saw Dr. Eric Moore and he did the surgery to remove the one thyroid gland. And I recovered very well from that procedure. I think that's a reason right there to try and get in to see him at the Mayo again, even if it was 20 years ago. I hope they can get me in to see him. Thank you again for sharing!

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gangcarotid1 | @gangcarotid1 | Apr 23 7:49am

I'm a big fan of Mayo Rochester. I'm a patient of Dr's Eric Moore (head & neck) Michael Link (vascular), Irina Bancos (endocrine),& Vidit Sharma ,(urology). 2 tumors were removed from my left kidney last Oct, malignant, w good margins...most thought it would require removal of the entire kidney; Dr Sharma's office called me the Saturday b4 surgery to tell me the Dr believed he had a 95% chance of saving my kidney, and after a 7+ hr surgery, he did. I originally went to Mayo MN because I have a carotid body paraganglioma that no drs for 1,000 mi around me had any clue about how to handle. After much researching I learned Mayo Rochester is the top place for cancers of my type. They found the kidney cancer so carotid tumor went temporarily on back burner. Going back this next week for scans, tests, mtg w Dr's Moore, Link, Bancos again. My son had a LaForte osteotomy done by Dr Eugene Keller, then-head of their Head & Neck dept. We had gotten lots of opinions from various places, including the national Shriners maxillofacial Dr's who'd told us he'd be black and blue for maybe 2-3 yrs, and all we heard was 'would', 'could', 'should'. Seeing Dr Keller, we got all 'will', 'shall' answers. My son had 1 slight black eye after the surgery, and Dr Keller apologized! My daughter was so taken w Mayo, she applied for grad school there and was invited (she said you're not accepted to Mayo schools, you're invited), which is a very difficult thing to accomplish, & got her masters/doctoral there in physical therapy in 2011.
So, w our past experiences at Mayo MN, I was elated to discover they were #1 to go to for cancers. I've been nothing but pleased.
I've met a person on this website who has the same kind of carotid tumor as I do, but on the opposite side of her neck. She's having surgery TODAY at Mayo AZ, by Dr Moore's AZ counterpart, Dr Hinni.
I believe in going for the best possible outcome, so Mayo is where I know I'll get that. Very best wishes for your search for a solution!

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claudia72 | @claudia72 | Apr 23 9:43am

Thank you for your extensive response. So happy that you are getting such awesome care there. Great information & confidence you have shared. Sounds like you have been through a lot. But the care you are getting sounds awesome. Also, so wonderful about your daughter being "invited" to do her graduate PT studies there too! Good physical therapists are truly a Godsend.
I will probably try and get in to the Mayo in Rochester as I saw Dr. Moore over 20 years ago for pain in my throat that I had for many years. At that time they found some abnormal pathology in my thyroid gland so Dr. Moore, took out half my thyroid gland and all went smoothly. I was impressed with the professionalism and the care too. At the time, I was told that the thyroid issue may have been a "red herring". That things may begin to show themselves more clearly in time. So now, so many years later, this vallecular cyst(?) shows up on an MRI (incidentally) while a neurologist is trying to figure out why I have neuropathy in the toes of both my feet. It does seem reasonable that I would go back to the Mayo so I hope they will accept me as a patient again. So after my "not the best experience" at MDA, I don't want to blame them for anything. They are following protocol and they have their processes. I just wished I would have seen the actual Dr. they scheduled me to see, for the entire appointment, not just 2-3 minutes at the end. We drove a very long way to see a specific doctor. And then, to see a trainee, was not confidence building. She said one thing to me and then when I got home and read the notes from the visit, it was different from what she told me when I was there. I blame myself too as I was so scared and anxious. I was really struggling emotionally. MDA did save my husband's life and took very good care of him. But my experience just wasn't that great...
IF you don't mind me asking, when you made your first Mayo appt. did you need a referral, did you just call them, or do it all online?
I so appreciate the sharing you and others have done on this site. It really makes a difference! Now, I just need to stop being so scared and get on with it.
Sending blessings & gratitude, Claudia

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2 replies
gangcarotid1 | @gangcarotid1 | Apr 24 9:16am
In reply to @claudia72 "Thank you for your extensive response. So happy that you are getting such awesome care there...." + (show)
@claudia72

Thank you for your extensive response. So happy that you are getting such awesome care there. Great information & confidence you have shared. Sounds like you have been through a lot. But the care you are getting sounds awesome. Also, so wonderful about your daughter being "invited" to do her graduate PT studies there too! Good physical therapists are truly a Godsend.
I will probably try and get in to the Mayo in Rochester as I saw Dr. Moore over 20 years ago for pain in my throat that I had for many years. At that time they found some abnormal pathology in my thyroid gland so Dr. Moore, took out half my thyroid gland and all went smoothly. I was impressed with the professionalism and the care too. At the time, I was told that the thyroid issue may have been a "red herring". That things may begin to show themselves more clearly in time. So now, so many years later, this vallecular cyst(?) shows up on an MRI (incidentally) while a neurologist is trying to figure out why I have neuropathy in the toes of both my feet. It does seem reasonable that I would go back to the Mayo so I hope they will accept me as a patient again. So after my "not the best experience" at MDA, I don't want to blame them for anything. They are following protocol and they have their processes. I just wished I would have seen the actual Dr. they scheduled me to see, for the entire appointment, not just 2-3 minutes at the end. We drove a very long way to see a specific doctor. And then, to see a trainee, was not confidence building. She said one thing to me and then when I got home and read the notes from the visit, it was different from what she told me when I was there. I blame myself too as I was so scared and anxious. I was really struggling emotionally. MDA did save my husband's life and took very good care of him. But my experience just wasn't that great...
IF you don't mind me asking, when you made your first Mayo appt. did you need a referral, did you just call them, or do it all online?
I so appreciate the sharing you and others have done on this site. It really makes a difference! Now, I just need to stop being so scared and get on with it.
Sending blessings & gratitude, Claudia

Jump to this post

When my local doctors said the word 'biopsy', I quit listening because I knew they were outta their league; from anything I've read, it's a Never to do a biopsy on a carotid body paraga glioma in the neck. Then I started researching online who to go to. I called the main desk line, and got my appt w a triage team that way. Once you call, they turn over your description of your issue to a triage team, and they determine which dept to send you to. Wishing you the very best (if you still have your Mayo patient #, I'd give them that to see if it expedited things. I can't imagine u not getting in, w having seen Dr Moore previously for throat issues.

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Mentor
Laurie, Volunteer Mentor | @roch | Apr 24 10:35am
In reply to @claudia72 "Thank you for your extensive response. So happy that you are getting such awesome care there...." + (show)
@claudia72

Thank you for your extensive response. So happy that you are getting such awesome care there. Great information & confidence you have shared. Sounds like you have been through a lot. But the care you are getting sounds awesome. Also, so wonderful about your daughter being "invited" to do her graduate PT studies there too! Good physical therapists are truly a Godsend.
I will probably try and get in to the Mayo in Rochester as I saw Dr. Moore over 20 years ago for pain in my throat that I had for many years. At that time they found some abnormal pathology in my thyroid gland so Dr. Moore, took out half my thyroid gland and all went smoothly. I was impressed with the professionalism and the care too. At the time, I was told that the thyroid issue may have been a "red herring". That things may begin to show themselves more clearly in time. So now, so many years later, this vallecular cyst(?) shows up on an MRI (incidentally) while a neurologist is trying to figure out why I have neuropathy in the toes of both my feet. It does seem reasonable that I would go back to the Mayo so I hope they will accept me as a patient again. So after my "not the best experience" at MDA, I don't want to blame them for anything. They are following protocol and they have their processes. I just wished I would have seen the actual Dr. they scheduled me to see, for the entire appointment, not just 2-3 minutes at the end. We drove a very long way to see a specific doctor. And then, to see a trainee, was not confidence building. She said one thing to me and then when I got home and read the notes from the visit, it was different from what she told me when I was there. I blame myself too as I was so scared and anxious. I was really struggling emotionally. MDA did save my husband's life and took very good care of him. But my experience just wasn't that great...
IF you don't mind me asking, when you made your first Mayo appt. did you need a referral, did you just call them, or do it all online?
I so appreciate the sharing you and others have done on this site. It really makes a difference! Now, I just need to stop being so scared and get on with it.
Sending blessings & gratitude, Claudia

Jump to this post

@claudia72
gangcarotid1 mention having your clinic number, probably not necessary, they can look you up by name and date of birth. Just mention you were a prior patient. All patients are still in system, nothing gets deleted. When Mayo switch from paper to online medical records, they scanned most things into system.

If call, ask about getting authorized to Mayo Online portal.

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