When patients ask their doctors about smell loss

What is the reaction of doctors to patients who have lost their sense of smell?

Below,  patients tell their stories of what happened when they went to the doctor to investigate their smell loss. These comments have been collected through two Facebook groups: Facebook/smelltraining and Facebook/LivingWellwithAnosmia. I am grateful to everyone who took the time to send me their comments.   -Chris Kelly

“is there something wrong?”

My own ENT knows very little about anosmia and she also doesn't understand the devastating impact of the loss of smell. My eyes started to tear up when she told me that the loss may be permanent. She was surprised and said, "is something wrong?" and I answered "You've just told me that I may have lost my sense of smell forever, of course something's wrong!" and she answered "Oh, I thought maybe something else."   -KV

She has never said the word "anosmia" to me but it is written on my chart. Everything I have learned about it has been through research on my own. Mine shrugged, "well, that's gone". I said I think I've smelled a few things. He said real things, that were really there? Yes. "Maybe it will come back" another shrug. I've been to two other ENTs, both have said he's the best in the area.  -JT

It might come back, but since you had a TBI, it could have been way worse.  -EK

Me wanting to know the cause and at least do the last scan to rule stuff out, and my ENT not planning on doing anything else and not concerned saying "We will never know".  -MM

“Maybe you’ll lose some weight…”

My ENT did all the scans and told me everything looked good. So I asked what now? “Try some Zinc and magnesium!” Shrugging his shoulders said "well you might never get it back". Gave me steroid sprays, which I didn't use. I can't do steroids! Went to my internist for 6 month checkup and he said my mother lost hers but she got it back. Age is a factor?? Really? I'm not your 90 year old mother! At the last visit this past month he didn't even mention it..so I told him remember this loss of taste and smell issue? He looked at me and said well maybe you'll lose some weight from it! I was near tears as he is leading me out the door!! How insensitive!  -DL

I said I'd banged my head and couldn't smell or taste anything anymore. His reaction, "oh don't worry about it once the swelling goes down it should come back. If it's not back in four weeks make an appointment". P.s. He didn't even check the huge bump on my head. "What if it doesn't come back?” “Well sometimes it's permanent". Thanks for that!  -DJ

“I never realised shrugs are a kind of medical diagnosis”  

I never realised shrugs are a kind of medical diagnosis   -JT

I think the worst part was having to wait 6 weeks for an appointment. I called and was understandably freaking out since it was pretty sudden. The gal taking the call told me that if it was an emergency I should call 911 or I could wait for the next open appointment in 6 weeks.      -JV

Hay fever: this was still being said by December 8 months after having sinus problems with a heavy cold. I had more explanation and help in India on vacation. Had a scan and was advised to have a back tooth out. No help whatsoever really. Never even mentioned the word anosmia. I had all my information from the internet to begin with. Seems like it is an unspoken condition they want swept under the carpet. So glad I am 90% recovered.   -CM

“If you have to lose a sense, it’s the best one to lose” 

I told my consultant I hadn't been able to smell for years. She still went through the farce of getting me to do a smell test - in case I was wrong/lying. Then concluded it was probably due to a blow to the head and it wasn't really worth investigating further as it wasn't going to come back, "but if you have to lose a sense, that's the best one to lose." I mentioned a specialist whom I'd heard had trained in America - could I seem him? "No - absolutely no point." I settled on an MRI scan offered at the last minute. "If you don't hear from us, it means we found nothing". I never heard from them. That was that.   -SF

My ENT asked if there was anything unusual that happened when I lost my sense of smell. I said I sneezed continuously for about five minutes non-stop which is not normal for me and then did not sneeze again for a whole month. I told him I usually sneeze daily because of allergies so it was weird I did not sneeze for a whole month after having a sneezing fit. He sarcastically said well " I haven't sneezed in a month" shrugged his shoulder and looked at me like I crazy and ridiculous.   -JG

"It could get better, it could get worse, or it could stay the same. Time will tell."  -SM

I was a kid, <10 years old, and my pediatrician says, "haha! You'll get it back later. See you in 6 months!" I laugh about it now - oh doctor, how I wish you were right! But it does highlight a real problem in which kids aren't taken seriously with regards to olfactory loss.   -NP

"It's not that big an issue - not as if you've lost your sight is it?"  -DR

Recently I mentioned to a doctor: “I have anosmia”.  He said "what is that?"   When it first happened to me about 5 years ago I went to my GP for answers. When she said it won't come back I said I need it back!! And she responded with "why? Oh I guess it is one of your senses".I went to a Neurosurgeon (that I waited 6 weeks to see) for piece of mind and to investigate further. To which he opened up a big medical book and read up on it and told me "you know more about it than I do" 😫😫  -LC

My ENT told me "you should be thankful you don't have a brain tumour. I know nothing about smell loss. Anything else I can help you with?"   -KL

I had 2 TBIs 10 days apart. Doctor: "You are lucky. You could have lost your sight."   -LG

I have had several confused look responses with a quick subject change. Unless it happens to you or someone close to you, people, including Doctors, have no idea what it is like. On more than one occasion I had 'oh, it will come back'   -NC

After my accident one day in hospital I recognises that I couldn't smell the flowers family & friends brought me. I panicked and started smelling everything. When I asked the doctor he didn't even looked at me just saying "well you lost your sense of smell, and it won't come back. You will just have to live with it”.  😳🙈😡😔   -TL

"A counsellor even suggested my grief might be 'misdirected'"

I lost my sense of smell after having the flu (recovery was complicated by chemotherapy at the time). Both my oncologist and ENT were bemused by my distress over my smell loss. They both implied that I had my priorities wrong, ie, I should be grieving over the loss of my breast, not my 'nose'. A counsellor even suggested my grief might be 'misdirected'. I remember replying quite tartly that: unlike my olfactory nerves, my breast could easily be reconstructed. It still angers me that they thought they were in a better position than me to judge my quality of life... and that my attitude was somehow wrong.   -JR

 

Well so far I haven't had any insensitive comments from either my GP, the MRI Tech, or my ENT, who was surprisingly informed about Smell Training. However, I am going back to my GP in two days with a "What now?" Question at my Physical appointment....so I'll keep you all posted!   -DR

I'm coming up on 8 months post viral parosmia. The ENT told me I might recover. There's a 50/50 chance of it and it could take months. Pretty sure he was guessing.   -KA

I was very lucky. I plonked myself on the seat in my GP's surgery, feeling really nauseous from the smells in the waiting room (smells that others probably couldn't detect) and burst into tears. I never cry. I couldn't talk. I handed him an information sheet about parosmia and the name of a specialist who had an interest in it. Not a word of insensitivity, he was very sympathetic. He sorted out an urgent referral.   Equally, my ENT specialist, was straight on the case with smell training. If you want a short section on examples of positive experiences, I'm your woman!   -WC

When I had my follow-up visit to the neurosurgeon, I told him that I had lost my smell. "Most people care more about taste" he replied. ( I had researched it prior to my visit and knew the loss of taste was due to loss of smell.) When I asked him what to do about it, he merely shrugged.   -ST

Fortunately all the doctors I visited understood my grief about losing my sense of smell. When I told him I could smell car exhausts my GP said: you must be so happy. My neurologist admitted the sense of smell was something that doesn't get a lot of attention from the medical world, he never heard about smell training. I was surprised, because he just finished his PhD about the Alzeheimers Disease and the sense of smell. Luckily my GP already told me about smell training after he googled it.   -DD

It's sort of like going to the doctor because you have a terrible case of pneumonia and ...being told...you should be grateful you don't have cancer

After losing my smell due to TBI the neurologist said: it will either come back on its own or it won't. I wouldn't waste your money on alternative therapies Consider yourself lucky. Most of the patients that I see would be happy to trade places with you. It's sort of like going to the doctor because you have a terrible case of pneumonia and ...being told...you should be grateful you don't have cancer.   -DH

“Gee, I wonder what that (loss if sense of smell) is about? But we need to focus on your asthma (my asthma is incredibly mild and not what I had made the booking for). I had made it to discuss the problem with smell. She is usually a great GP and it was the only time I have ever got a complete disinterested, change the subject kind of response from her despite trying to raise it a few times.   -KD

“Sorry but the anaesthetic used to numb your nose and throat while I look around doesn't taste very nice”

I was told oh well you should consider yourself lucky it could be worse at least it's not life threatening! I was then told however we had better do some tests as it might be a brain tumour or early onset Alzheimers! I then went to an ENT who said I'm really sorry but the anaesthetic used to numb your nose and throat while I look around doesn't taste very nice.  Errrrr hello? I'm here because I cant smell or taste! The worst thing though was being told there is nothing further we can do for you.  Go home and live with it.  And twice being refused a referral to a specialist anosmia clinic.   -KW

First ENT consultant said "At least you're not a chef..."😭   -CP

One doctor pulled out his medical book while I was in his office and started flipping through the pages as he mumbled "hmmm never heard of this..."   -KKT

I'm one year into no smell, no taste from a head injury. My GP said "oh don't worry. You will get your senses back within 3-6 months. If not then its probably permanently lost." My doctor is very matter of fact anyway and so it was when this happened. Nothing has changed.  -BG

I only saw a neurologist post TBI. He said, "well, you could get it back in nine days, nine weeks, or nine years."  It is what it is but I wish he would have given me options or direction-- smell training? Chiropractic care? Acupuncture? I did the last two by advise of a friend but now that I know about smell training it is upsetting to think maybe I could have intervened and seen more/better results than now, almost seven years later.   -AA