Do Doctors Really Listen to the Patient?

Posted by chzuck @chzuck, Jul 4 8:17am

Last week I went to a new ENT doctor specializing in the nose and sinuses. I have had ongoing issues where my nose closes up at night and causes issues breathing with my cpap mask. I mentioned that I used Neo Synephrine a good bit. Well, that seemed to where his focus went. I mentioned an ear ache episode where the ear drum burst and the swelling on that side actually dislocated my jaw and that ever since then I have extreme post nasal drip for a couple of hours after I get up. No response on that. Why would he not recommend a X-ray or better yet an MRI to see what could be going on? He then prescribed a different Fluticasone Propionate, Xhance, after I told him I had been using that steroid since 2012 with no noticeable good. His prescription would have been $600 and it was from a "special pharmacy", no mention that I could get it through my current local pharmacy with my Rx plan, I refused it. Many of my questions went unanswered, why? This is the fourth ENT that I have been to for the problem of nasal congestion at night. All through the day I am fine. It is in the evening when it starts and it seems to go away in the morning an hour or so after I am up. Anyone on here have a similar issue?

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@chzuck

The rinse helps, does not do away with it. I got awake around 3 this morning for a bathroom call and was somewhat stuffed. I sat on a chair and used the Ayr Allergy, waited a few minutes and started to open up, then put my cpap mask on and went back to sleep. Trying not to use Neo Synephrine. I question whether I have rebound from that. All during the day my nose is open as it should be. Starts getting stuffy in the evening. If I had rebound, would I not be stuffy during the day when the effects of the NS wears off?

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Good point about the timing. I’m at my country house tonight. Normally, I don’t struggle with stuffiness here as much. I’m going to start journaling, so I can see any trends.

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@celia16

My symptoms are very similar to yours. So, why does the nasal rinse work? What would be causing the problem that a rinse fixes. Allergies?

I have a friend who stripped down her bedroom and cleared of most fibers in an attempt to rid it of allergens. Got new mattress with encased cover, new linens, air purifier, etc. I’m considering it.

I’ve always heard that OTC nasal sprays (except for saline) have a rebound effect, making things worse over time. I did witness this in college with a friend who used it for over 6 years all through the day. I wonder how he ever resolved it.

Last night I had no stuffiness and little congestion. Why? Hmmm.,,,trying to figure it out. This doesn’t happen often.

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@celia16, i use NeilMed sinus rinse with the pre measured packets and the 8 oz squeeze bottle. what you're doing is rinsing out old dry sinus mucus, pollen, maybe some old dry blood and such. please always use room temperature distilled water. no tap water. do not try making your own distilled water. you can not get it as clean as distilled. and if the saline spray works for you. use it in between. i use the rinse twice a day because of the chronic sinusitis. with the saline spray in between. danny

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@danny5

@celia16, i use NeilMed sinus rinse with the pre measured packets and the 8 oz squeeze bottle. what you're doing is rinsing out old dry sinus mucus, pollen, maybe some old dry blood and such. please always use room temperature distilled water. no tap water. do not try making your own distilled water. you can not get it as clean as distilled. and if the saline spray works for you. use it in between. i use the rinse twice a day because of the chronic sinusitis. with the saline spray in between. danny

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Maybe I will try the rinse twice a day, only do it at bedtime now. I always use distilled water and keep plenty on hand as I need it for my cpap machine. I do warm the water in the microwave.

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IME very few doctors listen to the patient at all.

1. They're too busy
2. They assign too much of their initial/early dealings with new patients to their (the doctors') PA's
3. I've had experience with many PA's that would be unbelievable if they weren't true. (And great experiences with a very small percentage of some older/more experienced PAs)

In the mid-80's a well known diagnostician from a well known midwest university hospital told me that more and more hospitals were becoming corporations, and doctors were leaning toward becoming 'stock holders' after a fashion.

Too often it seems one is sent from his GP to a long list of 'specialists' none of which a patient can visit for at least a month or longer, and the patient is then further sent to 'another' doctor in the same 'health system' which is tantamount to being on an endless merry-go-round.

Between traveling from one doc to the next the patient has a long while (often 2-3 months) in which to anticipate what his/her problem might truly be which by itself can be nerve wracking.

In short, the system IME, is hit and miss at best.

(I will also not take the advice of any PA unless I cross-check the prescription they seem too willing to write as I have found in more than one instance their prescription to be a medication I should definitely not take according to other health issues I currently may be experiencing when cross-referencing what they prescribe with my current issues.

Too many PA's are either too proud, too anxious to 'help,' or (and I say unapologetically) too stupid to know their own limitations not to mention the negative or dangerous effects their actions may have on a patient.

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@chzuck

Maybe I will try the rinse twice a day, only do it at bedtime now. I always use distilled water and keep plenty on hand as I need it for my cpap machine. I do warm the water in the microwave.

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don't do that. you might be burning sinus membranes without knowing it. just use room temperature water. that's what it calls for on the box.

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@vuk

IME very few doctors listen to the patient at all.

1. They're too busy
2. They assign too much of their initial/early dealings with new patients to their (the doctors') PA's
3. I've had experience with many PA's that would be unbelievable if they weren't true. (And great experiences with a very small percentage of some older/more experienced PAs)

In the mid-80's a well known diagnostician from a well known midwest university hospital told me that more and more hospitals were becoming corporations, and doctors were leaning toward becoming 'stock holders' after a fashion.

Too often it seems one is sent from his GP to a long list of 'specialists' none of which a patient can visit for at least a month or longer, and the patient is then further sent to 'another' doctor in the same 'health system' which is tantamount to being on an endless merry-go-round.

Between traveling from one doc to the next the patient has a long while (often 2-3 months) in which to anticipate what his/her problem might truly be which by itself can be nerve wracking.

In short, the system IME, is hit and miss at best.

(I will also not take the advice of any PA unless I cross-check the prescription they seem too willing to write as I have found in more than one instance their prescription to be a medication I should definitely not take according to other health issues I currently may be experiencing when cross-referencing what they prescribe with my current issues.

Too many PA's are either too proud, too anxious to 'help,' or (and I say unapologetically) too stupid to know their own limitations not to mention the negative or dangerous effects their actions may have on a patient.

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it appears that there are very few "doctors" left only those individuals with medical degrees!

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@chzuck

The rinse helps, does not do away with it. I got awake around 3 this morning for a bathroom call and was somewhat stuffed. I sat on a chair and used the Ayr Allergy, waited a few minutes and started to open up, then put my cpap mask on and went back to sleep. Trying not to use Neo Synephrine. I question whether I have rebound from that. All during the day my nose is open as it should be. Starts getting stuffy in the evening. If I had rebound, would I not be stuffy during the day when the effects of the NS wears off?

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Hello @chzuck. I believe, like your ENT, that if you use a spray like Neosynephrine for more than a few days then it does trigger a rebound. For me, that effect shows itself about 12-24 hours after last use, with increased congestion again. Since this is the symptom I am treating in the first place, it is hard to know the difference. I use it minimally only when severe congestion from a cold. He needs you off of it to help in your diagnosis. I would try to eliminate the possible allergen effect by doing the super clean of the bedroom with new pillow, clean bedding, mattress cover. Also consider the possibility of an allergen involving the cpap device. I don't know much about them but inadequate cleaning could result in a fungal growth inside.
There are other possible causes for your positional congestion, but you have to eliminate the common ones first. I found that a bedroom deep clean, new pillows, mattress cover all resulted in alleviation of much of my nighttime congestion. Saline nasal flushes and Breathe-right nasal strips help a lot, as well as just good hydration. My cousin was in your situation minus the cpap and after years of symptoms and nasal sprays, both decongestants and steroids, recently moved to a new home. Instantly symptoms are gone. With poor eyesight and limited mobility, her cleaning skills had been zilch.
The medical saying " When you hear hoofbeats, look for horses, not zebras." means attack the frequently seen conditions and if all that proves to be no help, then look for the rare underlying conditions. Good luck working on your horses.
Have you been able to breathe without the Neo-synephrine? Can you use nasal strips with your cpap mask?

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@danny5

don't do that. you might be burning sinus membranes without knowing it. just use room temperature water. that's what it calls for on the box.

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Per the SinuCleanse website FAQ: Warm water is typically recommended for nasal washing as it can be more comfortable and effective at dissolving the saline packet.

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@sepdvm

Hello @chzuck. I believe, like your ENT, that if you use a spray like Neosynephrine for more than a few days then it does trigger a rebound. For me, that effect shows itself about 12-24 hours after last use, with increased congestion again. Since this is the symptom I am treating in the first place, it is hard to know the difference. I use it minimally only when severe congestion from a cold. He needs you off of it to help in your diagnosis. I would try to eliminate the possible allergen effect by doing the super clean of the bedroom with new pillow, clean bedding, mattress cover. Also consider the possibility of an allergen involving the cpap device. I don't know much about them but inadequate cleaning could result in a fungal growth inside.
There are other possible causes for your positional congestion, but you have to eliminate the common ones first. I found that a bedroom deep clean, new pillows, mattress cover all resulted in alleviation of much of my nighttime congestion. Saline nasal flushes and Breathe-right nasal strips help a lot, as well as just good hydration. My cousin was in your situation minus the cpap and after years of symptoms and nasal sprays, both decongestants and steroids, recently moved to a new home. Instantly symptoms are gone. With poor eyesight and limited mobility, her cleaning skills had been zilch.
The medical saying " When you hear hoofbeats, look for horses, not zebras." means attack the frequently seen conditions and if all that proves to be no help, then look for the rare underlying conditions. Good luck working on your horses.
Have you been able to breathe without the Neo-synephrine? Can you use nasal strips with your cpap mask?

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I have tried the nasal strips with little success. The congestion is further up the nose. I am usually open all day. Around 8pm or so, I notice some stuffiness and I am not in the bedroom. I had a blood work allergy test that showed nothing. I do keep my cpap accessories clean. You tell me how a doctor can analyze his patient in 5 to 10 minutes. I know he was not listening to half of what I said. He heard Neosynephrine and jumped right on that. I told him I had taken the generic Flonase since 2012 and noticed no benefits and yet he perscribed Xhance, which is the same stuff in a high tech applicator at $600. I did not accept that Rx. I guess I look for #6 ENT doc.

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@chzuck

Per the SinuCleanse website FAQ: Warm water is typically recommended for nasal washing as it can be more comfortable and effective at dissolving the saline packet.

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ok. how long do you heat the water? also i see you are using SinuCleanse. i've never used that one. just NeilMed and a few store brands. with the room temp water. i put the med in first than add the water. which starts to dissolve the med. then i cover the hole and shake the bottle which finishes dissolving the med. than i use the mix. d 💙💙

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