Disappointed

Such a disheartening experience with the ENT you saw. Sounds like he may not be a very personable fellow but probably doing the best he can and the news he was giving was not what you were hoping for. I am sorry you didn’t get a better report. It’s pretty obvious you are not happy with the ENT and wise to cancel your next appointment with him. I think you would be wise to go to the U of Iowa as they probably have more experience with more difficult things. Or try another ENT you may like better. One more thing you might try is a gastroenologist. I had a Gastroenterologist put in my first feeding tube and give me dilations also. I also had a dilation done while I was asleep for something else and I guess he scoped me before the dilation and afterward he told me what he saw down my esophagus and even said he was the whole way down could see in my stomach. I think I am correct on this as I have had a bunch of procedures. So maybe a Gastroenterologist could help or at least help figure out your status. It wouldn’t hurt to have a visit with one and see what they say. Also, you have the second thing going on with your previous injury which probably adds some problems. Wishing you the best Dave and hoping you can find some answers-Take Care-God Bless

What is a gastroenterologist?

These specialists primarily diagnose and treat GI diseases in both men and women.

They perform endoscopic procedures, in which they use specialized instruments to view the GI tract and make a diagnosis. They don’t perform surgery. In some cases, they may work closely with a GI surgeon. They primarily work in clinic or hospital settings.

The GI system:

• digests and moves food

• absorbs nutrients

• removes waste from your body

Gastroenterologists can treat any part of this system.

Although the GI system includes the mouth, these specialists generally don’t provide care or services here. Instead, dentists and dental specialists focus on the health of the oral cavity.

Other parts of the GI system include the:

• pharynx

• esophagus

• stomach

• small intestine

• large intestine

• liver

• gallbladder

• pancreas

• salivary glands

• tongue

• epiglottis

• rectum

• anus

Logan51 said:

Russ

Thanks. I have thought of that, and even mentioned to my PCP's Nurse for a referral. Thing is- I got no response. Might try again.

Sorry you had such a lousy appointment, in that it sure sounds like you did NOT get accomplished what you wanted to as far as information goes. I want to second what Russ mentioned. Maybe a trip to a GOOD Gastroenterologist would be a helpful next step! I’m an RN, and worked in a fairly large GI/ Endoscopy lab for about 11 years. I will tell you that if it were a vocal cord or Laryngeal issue I was dealing with...by all means, ENT is a great choice. But for esophageal ( food pipe) issues, esophageal dilations due to dysphasia/ trouble swallowing, feeding tube issuse~ a Gastroenterologist would be my first choice. They routinely assess, dilate, etc. these types of issues. Especially at larger institutions. Endoscopy scopes are different from ENT in office scopes- much better look throughout the entire esophagus, and can see where areas of stricture are. And we have different instruments to safely dilate if needed. I know you are super informed, as you’ve dealt with this ongoing issue, but just wanted to second Russ ‘ suggestion...and also give information for someone searching on this forum. Being on the other end also, I see how frustrating health care can be sometimes. 

tommyodavey said:

Terrible

To know you're FT dependent for life is rough.  Not getting the proper treatment adds to the frustration.  Go ahead and vent all you like.  You've earned it.  On the plus side, you sure do keep a good attitude being in such a bad spot.  Thanks for always being here to support the others.

 Thank you again, Dave, for your support during my husband’s initial stage of diagnosis! Your words, along with others, helped calm my mind. 

Logan51 said:

Lily and tommy

Thank you for the encouragement and advice. Made a couple calls today trying to get something started, but this C-19 in our area is growing and most Dr.s are doing a Zoom session for new Patients. I don't have access to a face-to-face online thing. Tomorrow I'm going to call the City Library, which is big, to see if they have the equip I need.

Thanks again.

Tuesday: Got a call from Iowa City & U of Iowa Hospital to schedule with an ENT. Tried to explain to the gal about being FT dependent & wanting to see a Gastroenterologist, too, and how their ENT probably hasn't seen a windpipe like mine with a silicone stint grafted into it and the left side being paralyzed. She was just a Scheduler. Said an Otolaryngology Nurse would call me today or tomorrow. Did not call. First thing the gal asked? Insurance. Medicare & AARP/UH...It's like that put me at the back of the line, with October 29th as the earliest opening. Just more Baloney...

October as first available is horrible, but I will say I’m not surprised that it’s that long to get into a University based specialist. I think things are so backed up because of Covid.....all the non emergent appointments that were on hold are now jamming up the system. Do you live in a decent sized city that there would be a local GI practice to at least start at? I’m not an advocate of small institutions, especially for unusual clinical cases, but if you live in a decent sized city with a larger GI group, maybe you could get started there? Otherwise, just keep calling every day checking for openings/ cancellations. Sometimes the squeaky wheel......

Good luck, Dave......so disheartening to need help, and have to wait that long! =(

Things are not going as smoothly as you'd like. Well, sometimes it works out that way. just pursue a steady course of action as you are now by contacting those you need to and staying persistent on it. That's just the way life seems to go with ups and downs. When I have my downs I try to think about all the positives I have had dealing with this disease. I think if you stay strong and keep working on your situation by going to a good GI doc and seeing an ENT at the U of Iowa and even maybe them working together to resolve your problem would be magnificent. I am sorry you have to deal with the many things you do but it is such with all of us on here but we do our best to support any and all our folks in their time of need. Dave, I don't know what that new pain is in your facial area but hopefully, it is not lingering and is gone for good. Keep us posted and prayers your way and hopefully, you will soon be seeing an ENT of U of Iowa and a great GI Doc-Take Care-God Bless

I am glad you got a quick response from the U of Iowa so promptly. Hopefully, they want to set an appointment and evaluate you situation soon-Take Care-God Bless

Of your appointment complications. This COVID has affected a lot of medical situations and otherwise. I am going for an appointment THIS WEEK that was supposed to take place earlier this year when the COVID started getting bad and they canceled that appointment. Hang in there Dave and keep your eye on when it lessens in your area and try to get an appointment. Also, try to get hold of someone and tell them you want a call as soon as they take patients again-Take Care-God Bless

Logan51 said:

Russ

Thanks. I have thought of that, and even mentioned to my PCP's Nurse for a referral. Thing is- I got no response. Might try again.

Been the story of my treatment from day one.  my original ENT I did not realizedjoimed the good old boy referal group. He could have sent Me to Tampa at least Moffit but had Drs he had to refere too.  By 6 months after treatments totally destroyed already.   So over cooked and too many chemicals.  They try to blame me but onto their game.  Quit denying & Lear NEVER do this again.  I'm a total mess getting worse yrly.  .  At least you got 10 yrs, I got 6 months.  I'm so damaged it's sad.  I hurt daily, don't eat much, drink more plant base shakes, no fairly & everything tastes horrible.  How would you like living that quickly and fast with side effects.  No life at all.  I weight 104 & 5'6".  Skeletal.  I have to pay for private IVs or get over dosed in Hospital.  Not going there with Covid rapid BS in Florida.  I've always wanted the best for you May you get another 10 yrs pain free.  Mine is constant.  No sleep daily.  Thyroid so screwed I have super high Cortisol in morning and all night.  Best dr here does same tests as Interernist why pay extra. ****  Good luck, wish you the best .