Alison’s story: Able to smell again after successful treatment for rhinosinusitis
I lost my sense of smell very gradually around 2009. I thought it would come back by itself after a while – but of course, it didn’t. The worst thing was not being able to taste the flavours of food, or smell lovely things like freshly baked bread, or roses in the garden.
I eventually went to my GP and he prescribed some form of nasal spray, which didn’t seem to have any effect. I remember seeing a short film on The One Show about a woman of a similar age, who had the same problem and had nasal polyps removed by surgery. It was a complete success and I remember saying to my husband, “that’s what I want to do” and bursting into tears.
I hadn’t realised what an emotional impact it was having on me until that point.
I was referred to the ENT department at my local hospital and had the operation to removethe polyps. I thought this would be the solution, but it wasn’t. When I went back for my follow-up check six weeks later and told them I still couldn’t smell, I was told there was a possibility that the surgery itself may have caused damage to my smell receptors and that this sometimes happened. I was told if this was the case, I would have to get used to never being able to smell again, as nothing could be done. I was discharged at that point, feeling very sorry for myself!
I spent the next 6 years trying to accept that I would never smell again. Sometimes it bothered me, other times it didn’t. It was missing out on the flavour of foods that depressed me, andthe thought that nothing could be done. I did notice that when I was prescribed oral steroids for some other reason, like a bad chest infection, I could smell a tiny bit. But it always faded.
I’ve always said that, of all the long-term conditions I’ve had to live with (I’m type 1 diabetic and asthmatic), anosmia is the worst of all. My diabetes and asthma are well controlled and don’t stop me from doing anything at all. But every day I struggled with anosmia, because it gets in the way of enjoying so many things that other people take for granted.
One day my lovely friend Linda gave me a magazine article about Fifth Sense. I was amazed to find out there was a charity for people with my condition and that I was not alone! I had reached a point where I was desperate to learn if anything could be done for me. I decided to take the plunge and register for the Fifth Sense Conference in 2015, hoping I would hear about some new ground-breaking treatment. It was expensive to book the 2-day conference and pay for my overnight accommodation and train fares. I just had to hope it would be worthwhile….it was!
One of the conference speakers was ENT Consultant Lisha McClelland, who also took part in a workshop for people with my type of condition, caused by rhinosinusitis / allergy / polyps, etc. I was very impressed by her and a short time after the conference I asked my GP to refer me to her Smell & Taste Clinic at the Queen Elizabeth Hospital in Birmingham. I told her my story and was diagnosed as having stage 2 polyps. (They had grown back over the years, which is extremely common.) I was told that surgical removal was no longer recommended – whichwas good news, as I really didn’t want to go through that again! I was prescribed a course oforal steroids, a daily antihistamine tablet, twice daily nasal rinses and twice-daily steroid nasal drops, Flixonase. I was also encouraged to get started on daily smell training, as soon as the course of oral steroids was completed.
After about 4 weeks of this intensive treatment I could smell again. It really had been that simple all along. I was absolutely ecstatic. I can only compare the feeling to how it would feelif you were told that someone you thought was dead is actually alive, that you haven’t lost them. That’s how powerful the feeling was. It was only when I could smell again that the fullimpact of not being able to smell for years hit me – all the amazing smells and tastes that had been all around me all this time, that I could suddenly experience but that I had been completely denied before. I felt I had been existing in a half-dead state, like a zombie, until that point.
That should be the happy ending of the story, but of course, it isn’t. I’ve realised there is no permanent ‘cure’. Sometimes I can smell and taste for weeks. Other times it fades to nothing. Most of the time it is somewhere in-between. But the important thing is that if it disappears, I know now how to get it back.
It’s hard work keeping on top of the treatments, as I still have to do twice-daily nasal flushes and take a daily antihistamine tablet. Along with all the other medications I am on, I sometimes forget to do a nasal flush or I miss a dose of nasal drops – just because the rest of my life takes over at times. I see my anosmia as my third long-term health condition, which needs as much attention and monitoring as the other two in order to maintain it. I am fortunate that Lisha McClelland and my GP have allowed me to ask for the Flixonase drops or a course of oral steroids as part of my repeat prescription list, if or when my sense of smell starts to fade. I don’t ask for oral steroids, as I know these can be harmful if taken on a regular basis.
I am so grateful to Fifth Sense as I would never have got to where I am without their help. I hope my story will inspire people with my condition not to give up, to ask for help from the right people and to be prepared to put the effort in to maintain their sense of smell and taste when they get it back. It is well worth it!