4 points, 100% anosmic

I went back to see Mr Philpott at the Spire hospital yesterday to have another smell test. This was exactly the same as the one that I had at my initial appointment with him to gauge the full extent of my anosmia; a number of 'sniffin' sticks' done blindfolded and a few with a visual stimulus to see if that could prompt any olfactory reaction. I thought I did rather well at this bit and there were many that I answered confidently. It was interesting to note that half of the images I was told the smell could be I have no memory of smelling, so a lot of it was done by me assuming that the smell would be similar to the taste. These images included various fruits, honey, wood, leather, smoke, wine etc.

I then had another nasal endoscopy to have a look at the inside of my nose to see if everything had healed well from the surgery; which it has done! Mr Philpott then discussed the results of my smell test with me. I had improved by four points since before the surgery. Which is nothing, basically. Especially as three of those were fluke; I had simply managed to match the smell to the right image accidentally. The only one I got right was peppermint. This means that I am still what they would call 100% anosmic. I needed eight more points in order to move into the next category which is 'diminished sense of smell'. 

Mr Philpott said that there was nothing more that they could do for me. He would be interested to see me in another three months from a purely academic point of view, to see why the surgery hadn't worked, which I think I will do. Because quite honestly, I would quite like to know too.

I don't really want to go into how obviously disappointing this is for me. I will keep at my smell training with the essential oils and I keep an eye on any medical advances that are made in the anosmia field in the future, just in case another alternative presents itself. I know I said before that I thought I could smell sometimes and even though that turns out to now be purely just psychological and not real, it's better than nothing at all.

FIFTH SENSE / UNDER 25 AND ANOSMIC

This one's kind of a big deal, so I wanted to give it a post all to itself. As I'm sure I've mentioned before, there is a website called Fifth Sense (link here), which is a site dedicated to anosmia and anosmic support.

The one thing that I always felt was missing from it, was advice aimed specifically at young people. Even on the anosmia page on Facebook, the youngest person I have ever come across, apart from myself, was 34. This may not seem like much of a big deal, but the concerns that are shared are those to do with burning down their house, or what their spouse thinks of them, or their children. These are issues that are way above the head of someone under the age of 25 who is also suffering from anosmia. They are having to deal with the constant teasing from their friends, who cannot take it seriously or understand what a big deal it is. In a time where all you want to do is fit in, you are already feeling so completely isolated from the world around you that it just makes it really, really tough.

So I decided that I was going to change this, and I was going to create a support network for anosmics under the age of 25. I emailed Duncan Boak, the man that runs Fifth Sense for advise and after some discussion, he offered me a subsection of the Fifth Sense website itself to do this. This is better than I ever could have hoped for, especially as Fifth Sense itself is continuing to grow and aiming to become an internationally recognised charity, the groundwork has already been done for me. I am spearheading an international support group for young anosmics.

I have been posting on Facebook, on twitter, on tumblr... anywhere I can think of to ask young people with anosmia to come forward and tell me their stories and any advice they wish they had been given, or that they feel that they could give to other young anosmics. I have already had so many replies from all over the world, and it is incredible. We are not alone. There are people out there who are going through exactly the same thing as each other and I want them to know that, to know that they have the support of so many others just like themselves.

So please. If you, or anyone you know is under 25 and ansomic please get them to message me so I can include their stories on the Fifth Sense website where it can help so many others.

A very delayed post-surgery message

I am so sorry that it has taken me so long to post. I've been unbelievably busy, so I'll try and update you in everything that has happened and I will try and keep it short.

So... the plastic splints! They ended up looking something like this, and ended up reaching right to the back of my nose (as you can sort of see in the bottom left hand image) and were basically horrific.

There was no magic moment in regaining my smell, once they were out, more just relief that I could wiggle my nose again. I could then also stick a finger up it and prod around my septum so I could figure out exactly what the damage was. And basically, I had a massive chunk taken out of it. If you could see up my nose you would be able to see the most impressive scarring ever, but luckily you can't and so it's impossible to tell that I ever had surgery!

And now, 3 months later? Well, there has been some improvement! Which is pretty amazing actually. It will be a very gradual process, and I have an appointment next Thursday to go back and see Mr Philpott to have another smell test so we can gauge exactly what improvement there has been. Smell is weird, because I still have no idea how much of it is psychological. So I don't know if I am starting to smell things, or if I'm just thinking that I can because I know I should be. I'm doing smell training every day, which involves smelling different essential oils, and some days I can name them, and some days I can't. But most days I can actually detect when there is a smell under my nose, which I could never even dream of doing before.

I HAVE (had) GIANT PLASTIC THINGS SEWN INTO MY NOSE

Firstly, I would just like to say thank you to everyone for your kind messages of support and wishes of luck for my surgery last Friday. I was overwhelmed by the response from both friends and strangers and I am so grateful to you all. I would also like to extend my thanks to Spire Hospital and to Mr Carl Philpott for looking after me so well.

Although it is too early to tell if the surgery has been a success in terms if any anosmia improvement, there were no complications during theatre and I am making a great recovery. I am now able to take minimal painkillers and go without a lovely moustache-esque bandage under my nose. I am able to breathe through it, although I do have two large plastic splints inside each nostril holding my nose apart so I am not able to breathe quite as clearly as I would like to be able to. These are also proving quite annoying and I frequently wake up in the middle of the night wanting to tear them out, but I am seeing Mr Philpott on Friday where these will be removed.

NOTE: THIS POST WAS DATED IN JULY, BUT I AM POSTING IT NOW. SORRY.

Surgery!

So tomorrow, on July 26th, I will be having surgery that may hopefully cure my anosmia. The actual procedure is called 'endoscopic septoplasty and restoration of olfactory clefts'. I think it basically means that they make holes in the cartilage in my nose to allow air (and smells) to reach my olfactory nerve.

I'm being really very good at not getting my hopes up that this will be the end of my anosmia and I will wake up able to miraculously smell again. I think that's mostly because I'm too busy being nervous about the procedure to actually give any serious thought as to what happens afterwards. I've been reading a lot about having to 'retrain my brain' as I haven't used that part of it for so long. It's all a bit bizarre, to be honest, but I'm not going to worry about it until tomorrow.

I think it's definitely fair to say that I'm having mixed feelings about the procedure. I've never had surgery or general anesthetic before in my life and I don't know if it's because it's do do with my face but I'm mostly feeling incredibly anxious. I don't think it's the procedure that's worrying me (although I have been very careful to not find out too much about what that actually involves) but more not knowing exactly what it is I'll be waking up to. I've been warned that I will be in a lot of pain, as well as feeling incredibly nauseous as it's obviously going to effect my sinuses. I'm expecting to have a couple of brilliant black eyes and a sore throat as well, as they have to stick a tube into my windpipe to ensure I can still breathe during surgery. I have moments where I panic and try to convince myself that it's not worth the discomfort and the money and this whole thing is really quite un-necessary, especially as I've now been anosmic for so long. But then I read how other people without a sense of smell also had surgery and it was 'the best decision' of their lives. What's a few weeks discomfort and 48 hours of nerves beforehand compared to getting my life back?

I don't want to go into how incredible it would be to be able to smell, just in case the surgery doesn't work, but after all, that is the reason for doing this. I won't be sad to see my anosmia go, although it has somehow (weirdly) actually become quite a big part of who I am. I've had to do more research on it than a lot of the doctors I've seen and I've had to cope with the massive frustrations that come with it. I've comes to terms with the fact that since I was at least 10 years old, I was and am always going to be completely alienated from my surroundings. Which is a pretty horrible thing to learn so young. I'm nearly 21 now and it's still an awful thing to deal with.

If I do get my sense of smell back I want to smell freshly baked bread and my mum's perfume and my boyfriend's shirt. I want to smell freshly mowed grass and petrol and how you know when it's going to rain. I want to travel back to all of the places I've been to in the last decade just to see what they smell like and form brilliant, vivid, actual memories that I can clearly hold on to. I want to smell my own shampoo.

Wish me luck!

The smell of success (almost)

Wow. I don't even know where to begin with this one. Today I finally had my consultation with Carl Philpott at Spire Hospital. I purposefully made an effort not to get my hopes up for anything to happen, or have any expectations really. In my mind, I had decided that I would turn up, agree that I was anosmic and then plans would be made for me to come back in a few weeks time for some more in depth tests to establish a course of action.

Instead, within an hour of me being there, I was told the cause of my anosmia and also what could be done to treat it.

I'm still struggling to absorb this information. 

Carl Philpott is a beacon of hope for all of those without a sense of smell. So many doctors have no idea about anosmia or the effects that it has on those suffering from it. Within minutes of me turning up for my appointment I was given a questionnaire that didn't just ask the basic questions like how long I had been unable to smell, but also how I felt I was coping with it and did I ever feel ostracized for it. I immediately felt such a sense of relief that here was a medical professional who completely understood what my life was and how serious this disability is.

I had the most intense blind smell test I think is possible to create; over 60 different smells were placed under my nose. By the about the 40th time I had said 'nothing' I have to admit that I began to give up hope. My anosmia was so blindingly apparent surely there was nothing that could be done about it. Next followed another nasal endoscopy (basically a camera stuck up my nose) which revealed that my left nasal cavity was considerably smaller and narrower than it should be, although this alone was not enough to explain why I don't have a sense of smell. After these tests, Mr Philpott recommended that I should be put forward for an MRI, bloodwork and possibly a CT scan. At this point I explain that I've already had a CT scan from Salisbury District Hospital. 

Within 30 seconds of looking at this image, he finds the cause of my anosmia.

It's literally just the way my nose has grown. The inner cartilage has expanded to cut off the air from my nasal cavities reaching my brain; meaning that my olfactory nerve is getting no signals of smell to process. This also explains why I never really realised becoming anosmic, as it just sort of happened as I grew. And it can easily be solved by surgery to widen the gap, meaning that the air from my nose reaches my brain so it can recognise smells.

So now I'm just waiting to get a date for this surgery and that's hopefully it. Blimey.

Ben Cohen

I know I haven't posted anything here in a while, but I didn't want this to be a blog where I just moan about how rubbish being anosmic is, but a blog which actually has some useful information on not having a sense of smell, which was actually interesting to read. So here is a fun fact: Ben Cohen, the co-founder of Ben and Jerry's ice cream is also an anosmic. This is why their ice cream is known for being chunky, as in order to compensate for his lack of taste, he would add big pieces of fruit or chocolate to satisfy his need for texture in food.

I've already mentioned on here before how my sense of taste is heavily compromised from being ansomic and that texture is one thing I largely rely on in order to gather a sense of how food should taste. So this ice cream suddenly makes a lot of sense and I'm not just saying that to try and justify how much of it I eat. I've just gotten over a cold, which made me aware of the best description I could possibly try to give about how having anosmia effects your sense of taste; it's like eating with a blocked nose. Except you can actually breathe.

Still haven't heard anything regarding my referral, but I am going to chase them up about this week, if even to try and get some idea of where I am on the waiting list. I think the thing that still frustrates me the most is that I have no idea of the cause of my anosmia. I think knowing that would give me a lot of closure on the subject, rather than this endless frustration. Phantom smells are still playing a large part in my life, this time with the ghost of burning, which is the most common form phantosmia takes.