Disappointed

Logan51
Logan51 Member Posts: 470 Member
edited July 2020 in Head and Neck Cancer #1

Got scoped by the ENT I got sent to, locally, today. Being FT dependent, I told him I wanted to know about the openings for my esophagus and windpipe. Told me they have a new machine w/video. 

1) He did a lousy job of freezing the area

2) He did a lousy job of not touching sides of windpipe with the video probe

3) Only scoped inside my windpipe

4) Afterwards, told me the machine/probe couldn't check-out my esophagus opening, which is BALONEY! Only reason I got sent to him was to confirm I needed a FT because of the esophagus, and it's like now I have to question whether he ever looked at my esophagus opening, AND needed to become FT dependent for the rest of my life.

5) And because of this BS visit with a Stooge ENT and $ scope- plan to cancel my next and obviously unnecessary appointment with him

Only good thing= said he would give me a referral to the U of Iowa ENT Center. But, will do so because of my half-paralyzed larynx- which has been that way since November of 1968 due to a car accident I was in when just 13. He scoped my larynx, and I did see the video of it. Opening at my larynx is very small for air to go thru because paralyzed half sticks out, but he has no reference point to compare it to. Said he didn't see much movement on the functioning side, and the almost snap shot/short video I saw of my windpipe @ larynx has got me upset. I haven't noticed a difference in breathing, but never realized the opening was so small. The ENT who saw me thru my C ordeal 11+ years ago is still active, but on the other side of the Mississippi River- insurance refused him for my case before I was on Medicare. Sure he saw my larynx opening, but so long ago...All those Ops. when I was a young teen for my crushed windpipe @ the larynx from 1968-70 @ Rush-Presbyterian-St. Luke's in Chicago by a renowned Otolaryngologist, which involves a silicon stint grafted into my windpipe, might be back in play- but only because it's over the heads of the local ENT Stooges?

Just venting, I guess. Thinking if I go to U of Iowa a laryngoscopy will be an automatic Outpatient Op. BUT, at least they might be willing to tell me about my esophagus opening. 

 

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    edited July 2020 #2
    Dave Sorry You Had

    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
    Logan51 Member Posts: 470 Member
    edited July 2020 #3
    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.

  • PipLily
    PipLily Member Posts: 130 Member
    edited July 2020 #4
    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.

    Hi Dave!

    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
    tommyodavey Member Posts: 728 Member
    #5
    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.

  • PipLily
    PipLily Member Posts: 130 Member
    #6
    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.

    Agreed!

     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
    Logan51 Member Posts: 470 Member
    #7
    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...

  • PipLily
    PipLily Member Posts: 130 Member
    edited July 2020 #8
    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...

    Crazy......

    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! =(

  • Logan51
    Logan51 Member Posts: 470 Member
    edited July 2020 #9
    Well...

    U of Iowa did not call today, so I called the Scheduler- the only one you get to talk to. Got their exact address, so will type up a letter to the ENT Center at the U of Iowa. 

    Will have to ask PCP about a GI referral. And I thank you, Lily.

    Today, right out of the blue when I was out and about around 7 PM= big time discomfort on the right side of my face running vertical from around sideburns down to my chin...what next? Oh well, come what may.

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    edited July 2020 #10
    Dave It Sounds Like

    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

     

  • Logan51
    Logan51 Member Posts: 470 Member
    #11
    Russ

    Thank you. Wrote the letter to the U of Iowa Otolaryngology Dept. with detailed address the Scheduler gave me last night and mailed today. One paragraph deals only in my early-Teen history of getting windpipe @ larynx rebuilt with 18 Ops. at Rush in Chicago- one of only 3 US Hospitals, back then, who could deal with my injury- and hoping that gets their attention/interest enough to get involved.

    Thinking now this face pain might be from an upper-right back tooth. Only thing I can eat are ice cubes, and have tended to break them carefully with back-right teeth. Still feel a little discomfort, but better than last night.

    You've been thru more on the C road than I have, Russ, so I do appreciate your responses. Hope all is good with you now in your recovery from this last ordeal.

     

    Update: they must have gotten my letter, because I got a call when away from the U of Iowa Hospital late this afternoon to give them a call, which I'll do Monday.

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    edited July 2020 #12
    That's great Dave

    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

  • Logan51
    Logan51 Member Posts: 470 Member
    #13
    Well, so much for the U of Iowa!

    Amazingly...? Did call the U of Iowa, and a Dr. Hoffman must have read my letter. Gal I talked to said he wants to see me within 4 weeks! So, I call toschedule...we'll get back to you. Waited by the phone Mon-Wed of last week= no calls from Andrea, the specific gal I need to talk to. Home most of the day on Thursday, and no calls. Friday I was away some, but no messages. 

    With my needing to see a GI Dr., apparently, to look at my esophagus opening, and wasting all that time for Andrea to call, plus the hassle for me being FT-dependent of the trip to and from, and if I have to stay overnight in a motel or wherever, and with the C-19 (2 Iowa basketball players tested positive this week)- reckon I'm just going to try and nicely tell Andrea that she didn't need to call me. 

    And, danged whomever, the C-19 is spiking in my area- over 3,100 positives to date, and both Hospital systems have been on TV with warnings they're at or near capacity. Nurses are retiring, too- those who can afford to. 

    Meanwhile, back at my Condo unit, flavored-water ice cubes are all I dare put in my mouth...

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #14
    Dave Sorry to Hear

    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

     

  • PipLily
    PipLily Member Posts: 130 Member
    edited August 2020 #15
    Logan51 said:

    Well, so much for the U of Iowa!

    Amazingly...? Did call the U of Iowa, and a Dr. Hoffman must have read my letter. Gal I talked to said he wants to see me within 4 weeks! So, I call toschedule...we'll get back to you. Waited by the phone Mon-Wed of last week= no calls from Andrea, the specific gal I need to talk to. Home most of the day on Thursday, and no calls. Friday I was away some, but no messages. 

    With my needing to see a GI Dr., apparently, to look at my esophagus opening, and wasting all that time for Andrea to call, plus the hassle for me being FT-dependent of the trip to and from, and if I have to stay overnight in a motel or wherever, and with the C-19 (2 Iowa basketball players tested positive this week)- reckon I'm just going to try and nicely tell Andrea that she didn't need to call me. 

    And, danged whomever, the C-19 is spiking in my area- over 3,100 positives to date, and both Hospital systems have been on TV with warnings they're at or near capacity. Nurses are retiring, too- those who can afford to. 

    Meanwhile, back at my Condo unit, flavored-water ice cubes are all I dare put in my mouth...

    Hello....

    Been thinking of you this week, and wondering if any updates? Covid is spiking again for sure, it seems, but things seem to be rolling along for now at least, where we’re at, as far as appointments, procedures, etc. ( I’m in Illinois).

    What a ridiculous time to need healthcare, much less specialized care. I feel for you Dave. Wishing for you to get some decent news from someone.....

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    #16
    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.

    Hey Russ

    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 .

     

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