So, the operation day came, I was surprisingly calm about it. I think I had done all the worrying in the lead up to the day. The medical staff were absolutely fantastic, made it feel so routine, answered any questions I had. Mr Irving was very relaxed, which made me relaxed too. I had been nervous about a general anaesthetic, but there really is nothing to it, you go to sleep, and you wake up, having lost a few hours in the meantime.
As I came around from the anaesthetic I started to laugh, whether that was relief or just the fact that I thought it was all very funny, I'm not sure, but it seemed to amuse the recovery team! I discovered that those that were in the operating room were learning a lot about SCDS too, and were asking questions as I continued to come around. The overwhelming sensation though afterwards was the split in my head. Prior to surgery the internal noises had been all encompassing, now I had one side that relatively quiet, and the other side that was screaming! My right side (unoperated side) was incredibly noisy, but this did subside over the course of a week or so. My left side was wonderfully quiet (apart from some run of the mill tinnitus, which did seem quite intrusive at times)
After a night on the ward, I was discharged home. My balance had taken a real knock. Needing to walk with two people holding me on the evening of my op, one person and my stick on the day after, and then once I was home (and everything was that bit closer) I could manage with just my stick for a few days. So my balance slowly improved, I am now at a point where I feel pretty comfortable in the environment of my own home, going out can have some challenges, but as long as I am sensible, I can cope. My hearing in my left ear has started to come back. I had some fantastic nights sleep after the operation, as I had to sleep on my good ear, which meant no external noises could disturb me!
As my hearing came back, it sounded so very distorted for a while, varying from it sounding like a babbling brook in my head, to some robots trying to talk. But that has all passed now, I am beginning to hear discernible speech again. Although trying to judge wear sound is coming from is frustratingly slow at coming back.
I was surprised at how little pain I was in. There was a little discomfort at times, but nothing that paracetamol or nurofen couldn't sort out. I had to adapt my glasses, so that the arm didn't irritate the scar. So we took the arm off, and then weighted it with blue tac, so that the glasses would still sit relatively straight on my face.
So that is where I am at now. I have another few weeks before I go back to see the surgeon at the balance clinic. I am aware that my right ear is still very symptomatic, so hopefully we can get a plan together for sorting that one out in the near future.
Friday, 30 September 2016
Tuesday, 30 August 2016
The start of the rest of my life
So, I went through the tests, I got the go ahead for surgery, and then I had the wait.
The wait, to start with, was just a case of getting on with life as well as I could. Knowing that in a few months I would be getting my left side fixed. But as the date gets closer, it plays on your mind so much more. I am now two days away from surgery, my mind has been in overdrive, so I have been keeping as busy as I can to distract myself!!
One of the recurring worries is, how well I will be able to recover from this, in the knowledge that I will need the other side fixing too before I will be truly "fixed". One thing that has really helped me is watching the Olympics. I know, a weird connection, but all of those athletes have had to work so hard, push though so many set backs, or pain, yet they did it, and achieved their goal of competing in the prestigious games. So I am going to see this in the same context. It is going to be hard work, but without putting in that hard work, tackling the challenges, retraining my brain, I am not going to get to my goal.
So, surgery, what does it entail? The surgeon, Mr Irving, is one of the top SCDS surgeons in the country. He will be drilling through the mastoid bone behind my ear, and using some of the bone chippings to create a plug for the superior semi circular canal. The idea is that thiswill render the canal inactive, and therefore stop the symptoms. The posterior semicircular canal on the other side of my head is in the same plane as the superior semicircular canal on the operated side, so will take over the function of the inactive canal.
As I am bilateral, there is a chance that this will make me feel worse until the second side is done, but then there is a chance that it won't, and that I will feel more stable and less noisy. The not knowing how I will be is difficult to contend with. When you undergo any operation you expect there to be a period of recouperation, but not knowing how long that will be is playing on my mind a bit. But the wait is nearly over, soon I will know, soon I will start the journey to a more stable, less noisy head, and I will be able to start to reclaim my life.
The wait, to start with, was just a case of getting on with life as well as I could. Knowing that in a few months I would be getting my left side fixed. But as the date gets closer, it plays on your mind so much more. I am now two days away from surgery, my mind has been in overdrive, so I have been keeping as busy as I can to distract myself!!
One of the recurring worries is, how well I will be able to recover from this, in the knowledge that I will need the other side fixing too before I will be truly "fixed". One thing that has really helped me is watching the Olympics. I know, a weird connection, but all of those athletes have had to work so hard, push though so many set backs, or pain, yet they did it, and achieved their goal of competing in the prestigious games. So I am going to see this in the same context. It is going to be hard work, but without putting in that hard work, tackling the challenges, retraining my brain, I am not going to get to my goal.
So, surgery, what does it entail? The surgeon, Mr Irving, is one of the top SCDS surgeons in the country. He will be drilling through the mastoid bone behind my ear, and using some of the bone chippings to create a plug for the superior semi circular canal. The idea is that thiswill render the canal inactive, and therefore stop the symptoms. The posterior semicircular canal on the other side of my head is in the same plane as the superior semicircular canal on the operated side, so will take over the function of the inactive canal.
As I am bilateral, there is a chance that this will make me feel worse until the second side is done, but then there is a chance that it won't, and that I will feel more stable and less noisy. The not knowing how I will be is difficult to contend with. When you undergo any operation you expect there to be a period of recouperation, but not knowing how long that will be is playing on my mind a bit. But the wait is nearly over, soon I will know, soon I will start the journey to a more stable, less noisy head, and I will be able to start to reclaim my life.
Wednesday, 20 January 2016
Waiting and a balancing act.
If there is one thing that I have learned how to do over the last year of feeling dizzy, it is to learn how to wait. It is so very, very frustrating, knowing that there is something wrong, and firstly not knowing what it is, and having to wait to find out, then waiting for further tests, further appointments and further referrals. I suppose one blessing to be taken from all this waiting, is that it obviously isn't a life threatening condition, because then things move alarmingly quickly.
There are drawbacks to this waiting, and it is how to address those, that I want to touch on today.
First of all, there is the intense frustration that your life is being put on hold, whilst you wait for the process of tests, diagnosis, treatment to be gone through. Of course, to you, and those whose lives are also impacted by this condition you have, your life, and the ability to live it to the fullest has the utmost importance. Plans have to be cancelled, or at least postponed. Life has to adapt to the limited abilities of the patient, all whilst trying to keep a positive outlook on life, which on the bad days, is tough. But learning to live within the confines of the condition to the best of your abilities is key to this.
The adaptations I have had to make to my life are many. From stopping driving, to walking with a stick. Having to avoid noisy environments (and boy, is the world noisy when you are sensitive to it!), and when that isn't possible to wear my DUBS earplugs. Being careful not to raise my heartbeat for fear of making me dizzy, and that can happen through exercise but also through emotions. Getting upset can make my symptoms go through the roof.
When you are aware that going out, experiencing noise can make you dizzy, it is easy to become stressed about it, and that raises your heartbeat, and therefore makes it even more of a self fulfilling prophecy. It would be easy to just stay at home, in the quiet, and remain fairly ok. But that is most definitely a way of putting your life on hold, becoming resentful of the condition, and a path to isolation and depression. Yet on the flipside, going out is exhausting. You realise how bad you are when you go out into the normal world, and can't walk straight, or have to stop because everything is moving about so much you can't focus. So, I do still go out, I walk the dog, even when it is the last thing I feel like doing. I go out to restaurants, and take my earplugs with me. I go out to events that I feel I can cope with, even if I do have moments where people could quite easily mistake me for being drunk, as I struggle to stay on my feet. Because that is what life is about, it is not about hiding away (although I need to that from time to time), it is about doing as much as you can, within the constraints that are given to us.
Another balancing act I am contending with at the moment, is that of weight. Given that raising my heartbeat makes me dizzy, I have consequently become less active, and the weight has started to pile on. To the point of me being heavier than I was when I was 9months pregnant with my largest baby! To be fair, it is not all down to the SCDS that has caused the weight gain, but it is certainly making it very difficult to shift it. So I have enlisted the help of a fitbit. Which allows me to assess how many calories my pretty inactive body needs. I can see this being a great help. I feel in control of something at long last, and despite whatever other struggles my body is contending with, I can now start to make it the best version of itself right now.
It is this idea of being the best version of yourself that I find is a good motivator. Yes, I may have been fitter, thinner, more stable, more independent a few years ago, and yes, I may well be like that again in the future. But for now, I am going to make myself the healthiest I can be, within the constraints, healthy in body and mind.
There are drawbacks to this waiting, and it is how to address those, that I want to touch on today.
First of all, there is the intense frustration that your life is being put on hold, whilst you wait for the process of tests, diagnosis, treatment to be gone through. Of course, to you, and those whose lives are also impacted by this condition you have, your life, and the ability to live it to the fullest has the utmost importance. Plans have to be cancelled, or at least postponed. Life has to adapt to the limited abilities of the patient, all whilst trying to keep a positive outlook on life, which on the bad days, is tough. But learning to live within the confines of the condition to the best of your abilities is key to this.
The adaptations I have had to make to my life are many. From stopping driving, to walking with a stick. Having to avoid noisy environments (and boy, is the world noisy when you are sensitive to it!), and when that isn't possible to wear my DUBS earplugs. Being careful not to raise my heartbeat for fear of making me dizzy, and that can happen through exercise but also through emotions. Getting upset can make my symptoms go through the roof.
When you are aware that going out, experiencing noise can make you dizzy, it is easy to become stressed about it, and that raises your heartbeat, and therefore makes it even more of a self fulfilling prophecy. It would be easy to just stay at home, in the quiet, and remain fairly ok. But that is most definitely a way of putting your life on hold, becoming resentful of the condition, and a path to isolation and depression. Yet on the flipside, going out is exhausting. You realise how bad you are when you go out into the normal world, and can't walk straight, or have to stop because everything is moving about so much you can't focus. So, I do still go out, I walk the dog, even when it is the last thing I feel like doing. I go out to restaurants, and take my earplugs with me. I go out to events that I feel I can cope with, even if I do have moments where people could quite easily mistake me for being drunk, as I struggle to stay on my feet. Because that is what life is about, it is not about hiding away (although I need to that from time to time), it is about doing as much as you can, within the constraints that are given to us.
Another balancing act I am contending with at the moment, is that of weight. Given that raising my heartbeat makes me dizzy, I have consequently become less active, and the weight has started to pile on. To the point of me being heavier than I was when I was 9months pregnant with my largest baby! To be fair, it is not all down to the SCDS that has caused the weight gain, but it is certainly making it very difficult to shift it. So I have enlisted the help of a fitbit. Which allows me to assess how many calories my pretty inactive body needs. I can see this being a great help. I feel in control of something at long last, and despite whatever other struggles my body is contending with, I can now start to make it the best version of itself right now.
It is this idea of being the best version of yourself that I find is a good motivator. Yes, I may have been fitter, thinner, more stable, more independent a few years ago, and yes, I may well be like that again in the future. But for now, I am going to make myself the healthiest I can be, within the constraints, healthy in body and mind.
Sunday, 20 December 2015
And the results are in
The other day I had a follow up appointment with the ENT, following my VEMP testt last month. It would seem that the VEMP test backs up the findings of the CT scan, and confirms the diagnosis of Superior Semi circular canal dehiscence. It also suggests that I am bilateral, ie have a hole in the canal in both ears.
This all means that they consider me a candidate for surgery. In the UK that pretty much exclusively means that surgery will be done by the Trans-Mastoid approach, and the hole itself will either be patched or plugged. Let me explain this a little further.
There are two surgical techniques that are used to fix SCDS. One approach is Mid-fossa Craniotomy, which is a very invasive procedure, which involves making an incision through the skull and coming at the hole from the top down. The plus side of this is that they can see the hole, the downside is that due to the invasive nature there are extra risks involved.
The second approach is the Trans Mastoid approach, where they come into the inner ear through the mastoid bone behind your ear. This is less invasive, it does not require having to lift the brain, and therefore carries less risk. But the downside is that they cannot visualise the dehiscence. The Transmastoid approach is the technique that is used in the UK. The US uses both techniques.
Once they have gained access to the inner ear, there are two ways of fixing it. They can either put a patch over the hole, or plug the entire canal. Putting a patch over the hole would maintain the function of the canal, but it is not as durable as plugging, and if it is not in the right place, then the surgery will fail. Plugging the canal, is where they fill the canal with a sealing substance, and therefore seals the hole. But by plugging the canal you lose the function of the canal, which could affect balance. However, with Vestibular therapy, it is hoped that they brain learns to compensate for that loss.
As you can see, it is not straightforward, and there will be various decisions to be made. The first decision for me, was getting a surgeon who had done this procedure before. As nice my ENT consultant was, he admitted he hadn't done this surgery as a consultant before, and I really didn't fancy being the first. So I am being referred to a consultant who has a few of these surgeries under his belt. The problem with having a rare condition that has only been known about for the last 20 years, is that even the experts are still learning about the condition, and not that many surgeries (in the scale of things) have been undertaken. Techniques are being improved upon all the time, and the longevity of the surgeries is still being discovered.
That being said, I have a condition that has a chance of being fixed. I have a chance of getting my pre-SCDS life back. So I await surgery.
This all means that they consider me a candidate for surgery. In the UK that pretty much exclusively means that surgery will be done by the Trans-Mastoid approach, and the hole itself will either be patched or plugged. Let me explain this a little further.
There are two surgical techniques that are used to fix SCDS. One approach is Mid-fossa Craniotomy, which is a very invasive procedure, which involves making an incision through the skull and coming at the hole from the top down. The plus side of this is that they can see the hole, the downside is that due to the invasive nature there are extra risks involved.
The second approach is the Trans Mastoid approach, where they come into the inner ear through the mastoid bone behind your ear. This is less invasive, it does not require having to lift the brain, and therefore carries less risk. But the downside is that they cannot visualise the dehiscence. The Transmastoid approach is the technique that is used in the UK. The US uses both techniques.
Once they have gained access to the inner ear, there are two ways of fixing it. They can either put a patch over the hole, or plug the entire canal. Putting a patch over the hole would maintain the function of the canal, but it is not as durable as plugging, and if it is not in the right place, then the surgery will fail. Plugging the canal, is where they fill the canal with a sealing substance, and therefore seals the hole. But by plugging the canal you lose the function of the canal, which could affect balance. However, with Vestibular therapy, it is hoped that they brain learns to compensate for that loss.
As you can see, it is not straightforward, and there will be various decisions to be made. The first decision for me, was getting a surgeon who had done this procedure before. As nice my ENT consultant was, he admitted he hadn't done this surgery as a consultant before, and I really didn't fancy being the first. So I am being referred to a consultant who has a few of these surgeries under his belt. The problem with having a rare condition that has only been known about for the last 20 years, is that even the experts are still learning about the condition, and not that many surgeries (in the scale of things) have been undertaken. Techniques are being improved upon all the time, and the longevity of the surgeries is still being discovered.
That being said, I have a condition that has a chance of being fixed. I have a chance of getting my pre-SCDS life back. So I await surgery.
Friday, 27 November 2015
More tests
I realise that I need to bring you up to date.
I went to see the different ENT at the end of October, and this was the first time I felt that I was talking to a medical person who knew anything about this condition. I was in a room with the ENT, a physio, and various other nurses who between them all made up the balance clinic. Unfortunately the ENT didn't have access to the reformatted version of my CT scan, but he later wrote me a letter saying that once he had seen it, it became clear that I "had quite a good example of superior semi-circular canal dehiscence".
Another test he wanted to have done on me was a VEMP test. VEMP stands for "vestibular evoked myogenic potential". Which to the lay person means absolutely nothing! I tried researching it, so that I knew what to expect and to try to understand the purpose of the test. Unfortunately I was unable to make head nor tail of my findings. I gleaned that it involves electrodes and a pulsating noise in your ear, but the whys and wherefores of it all remain a mystery.
So the day came to go for my test. It was explained to me that the vestibular system is a complex system, and trying to find out where it is going wrong is like trying to find a needle in the haystack. VEMP testing combined with high resolution CT scan is used as a diagnostic tool in diagnosing SCDS. And even though I have had it done now, I still don't understand it, so all I can do is explain the process.
I was hooked up to some electrodes. Two each side of my neck, placed on specific muscles. I had further electrodes placed on the front of my neck, and my forehead. The electrodes were tested, and retested, and then moved around, until after what seemed like forever, they were happy that they were set up correctly. I then had to turn my head one way, to put my neck muscle under just the right amount of tension, which was determined by a traffic light type arrangement. Red meant that it was contracted too much, blue was not enough, and green was just right. They then, through and ear piece placed in my ear, sent a loud pulsating noise. This made my eyes bounce all over the place, but I had to concentrate on keeping my neck in the correct position. I had this repeated on the other side (which was much harder as couldn't maintain the correct tension in my neck). Then the test was repeated on each side again but at a lower sound level.
I was expecting to feel particularly disorientated after all that, but I think the overwhelming feeling was one of tiredness, and a slightly sore neck!!
The results of the test will be analysed over the next couple of weeks, and hopefully, when I get to see the consultant again in December, we will be able to formulate a plan of action to rid me of the symptoms of this condition.
I went to see the different ENT at the end of October, and this was the first time I felt that I was talking to a medical person who knew anything about this condition. I was in a room with the ENT, a physio, and various other nurses who between them all made up the balance clinic. Unfortunately the ENT didn't have access to the reformatted version of my CT scan, but he later wrote me a letter saying that once he had seen it, it became clear that I "had quite a good example of superior semi-circular canal dehiscence".
Another test he wanted to have done on me was a VEMP test. VEMP stands for "vestibular evoked myogenic potential". Which to the lay person means absolutely nothing! I tried researching it, so that I knew what to expect and to try to understand the purpose of the test. Unfortunately I was unable to make head nor tail of my findings. I gleaned that it involves electrodes and a pulsating noise in your ear, but the whys and wherefores of it all remain a mystery.
So the day came to go for my test. It was explained to me that the vestibular system is a complex system, and trying to find out where it is going wrong is like trying to find a needle in the haystack. VEMP testing combined with high resolution CT scan is used as a diagnostic tool in diagnosing SCDS. And even though I have had it done now, I still don't understand it, so all I can do is explain the process.
I was hooked up to some electrodes. Two each side of my neck, placed on specific muscles. I had further electrodes placed on the front of my neck, and my forehead. The electrodes were tested, and retested, and then moved around, until after what seemed like forever, they were happy that they were set up correctly. I then had to turn my head one way, to put my neck muscle under just the right amount of tension, which was determined by a traffic light type arrangement. Red meant that it was contracted too much, blue was not enough, and green was just right. They then, through and ear piece placed in my ear, sent a loud pulsating noise. This made my eyes bounce all over the place, but I had to concentrate on keeping my neck in the correct position. I had this repeated on the other side (which was much harder as couldn't maintain the correct tension in my neck). Then the test was repeated on each side again but at a lower sound level.
I was expecting to feel particularly disorientated after all that, but I think the overwhelming feeling was one of tiredness, and a slightly sore neck!!
The results of the test will be analysed over the next couple of weeks, and hopefully, when I get to see the consultant again in December, we will be able to formulate a plan of action to rid me of the symptoms of this condition.
Friday, 6 November 2015
A wake up call.
This illness has forced me to make decisions about daily life. I had to decide to stop driving, I've had to choose carefully where I go, and what I do. I've had to cut back on what work I take on. By doing these things I can generally have a days that are manageable. Sure, I might feel a bit off, and some days are definitely better, or worse than others, but in general I am ok.
So it is easy to forget that I do have a condition that affects me as much as it does. Sometimes you go and do something and it makes you realise that things are most definitely not right.
Yesterday, I went to a small demonstration, as our local hospital's maternity unit was being shut. A cause I felt very strongly about, so I figured I would at least show my face. I had taken my stick, but forgot, of all things, my ear plugs. I was stood for 2 hours, with cars tooting, and sirens going off at times. Before I was ill, perhaps the most I would feel from that would be sore feet, and a bit tired. But, apart from staggering a few times, and suffering for the loud noises, I then started to feel very off after two hours, and had to make my way home.
Getting home was hard, I was staggering, really struggling to walk in a straight line, and my vision was really distorted. All I could think was how this is not how I should be. I should be able to do these things without feeling so unwell. How I need to get better. An hour of peace and quiet when I got home was enough to rejuvenate me enough to go do the school run, and I am glad that I could bounce back so quickly.
So today I am back to a quiet life, and I am doing ok. But life cannot be reduced to this all the time. I have to remember that when life gets busy, and noisy, I will feel unwell. Another thing I have to remember is to take my ear plugs with me!
So it is easy to forget that I do have a condition that affects me as much as it does. Sometimes you go and do something and it makes you realise that things are most definitely not right.
Yesterday, I went to a small demonstration, as our local hospital's maternity unit was being shut. A cause I felt very strongly about, so I figured I would at least show my face. I had taken my stick, but forgot, of all things, my ear plugs. I was stood for 2 hours, with cars tooting, and sirens going off at times. Before I was ill, perhaps the most I would feel from that would be sore feet, and a bit tired. But, apart from staggering a few times, and suffering for the loud noises, I then started to feel very off after two hours, and had to make my way home.
Getting home was hard, I was staggering, really struggling to walk in a straight line, and my vision was really distorted. All I could think was how this is not how I should be. I should be able to do these things without feeling so unwell. How I need to get better. An hour of peace and quiet when I got home was enough to rejuvenate me enough to go do the school run, and I am glad that I could bounce back so quickly.
So today I am back to a quiet life, and I am doing ok. But life cannot be reduced to this all the time. I have to remember that when life gets busy, and noisy, I will feel unwell. Another thing I have to remember is to take my ear plugs with me!
Wednesday, 4 November 2015
An explanation by expert Dr Carey
I came across this video the other day that explains exactly what superior semi-circular canal dehiscence is, and how the symptoms come about. I found it very useful, and I hope you do too.
https://m.youtube.com/watch?v=i7zkb30-d50
https://m.youtube.com/watch?v=i7zkb30-d50
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