My Next Neurosurgery – Decompression

Sometimes when you’ve been waiting for something for quite a long time, it can come as a shock to the system when all of a sudden, D-day is hurtling towards you at speed. That’s certainly how I feel about my second brain surgery.

I received a call today from my Neurosurgeon’s registrar, offering me a date about 2 & a bit weeks from now (scheduled for 17th Nov 2017) to do my Decompression surgery. I had assumed that it wouldn’t be scheduled until after Christmas so was a little surprised to be offered a November date but honestly, I think this slightly unsettled, shocked feeling would have happened whenever the date was set.

This surgery has been on the cards for the last 18 months. Since assessing the results of my ICP Pressure Bolt monitoring in August 2016, the plan put in place by the Neurosurgery team has been to fit a VP Shunt to address the high pressure inside my skull, then move on to Decompression surgery about a year later. My shunt was fitted in January 2017 so we’re slightly ahead of schedule. 

This surgery is a bigger deal than my last one. It involves removing a part of the skull at the base and often some bone from the top of the spine, cutting through the dura and placing a patch that will act like a tent, provinding space for CSF (spinal fluid) to circulate properly, something that hasn’t been happening due the the blockage caused by my Chiari Malformation. I’ll link some reliable medical sources at the end of this post in case you want to learn more. 

I’m not going to lie about it – I’m anxious about this surgery and knowing me, I’ll remain so until I actually leave for the hospital bright & early on surgery day. In this regard, it might be a blessing that I’m not getting as much notice as people sometimes do for a long-planned surgery. I have already reached for my coping strategy – lists! The only way to take the edge off my anxiety is to be as organised and prepared as possible.

I know that this surgery has risks and these days, surgeons talk you through ALL of them in advance. I’ve been warned that the recovery can be long and gruelling. It is not a decision I’ve taken lightly but it’s a risk I have to take after decades of misdiagnoses, ineffective treatments and above all else, bloody awful, debilitating pain & symptoms. I have now become housebound and my quality of life is the worst it has ever been, so ‘wait and see’ is no longer an option. 

I’m so blessed to be facing this with my husband by my side; he shows me every single day what it is to be strong. My parents are there for us always and really put my mind at ease with regards to my daughter – while my husband is with me at the hospital, I’ll never have to worry about her feeling anxious or needing cuddles. Both my brother and my best friend will drop whatever they’re doing if I need them, despite the fact that I’ve largely shut them out whilst dealing with the worst of my illness in recent times. I know how lucky I am to have such support.

So, now it’s time to get going on my ‘getting ready for surgery’ lists and most importantly, getting my daughter used to the idea and making sure she knows how it will impact on her life in the short term. I’m doing this for her as much as for me; here’s hoping she’ll eventually end up with a more functional, less horizontal mum.

Kindra x

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Medical links:

Mayfield Chiari Centre – Decompression Surgery

Chiari & Syringomyelia Foundation – Chiari lecture
Mayfield Brain & Spine – Chiari Symptoms & Treatment Options

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Chronic Life: A Moment of Gratitude 

Gratitude is, in my opinion, something that can only be genuinely felt when it comes from within. No amount of ‘it could be worse’ or ‘you should be grateful that..’ comments from other people will make me feel it. In fact, such comments from people who do not live with chronic daily pain are more likely to generate rage rather than gratitude on my part. 

This Christmas hasn’t been easy. I’m scheduled to have brain surgery on 25th January and a blood pressure problem has arisen, so we’ve working with my GP to try and address it in time for the surgery. I made it through Christmas Day itself with the use of meds and a nap mid way. The two days since however have seen me stuck in bed with agonising and very determined head pain. But there is so much that I’m grateful for, so I’d like to take a moment to articulate the things I have going for me.



My husband and daughter: My husband looks after me and my daughter without ever making me feel like a burden. I remember what it was like to live with someone who made me feel guilty about things I couldn’t control, so I know just how much of a difference it makes that my husband is truly strong; he is always on my side and there to keep me from despairing and giving up. Our daughter makes me happy just by being her funny, cheeky, lovely self. Seeing her as happy and confident as other children her age, despite my situation, lets me know that we’re doing something right. 

My family: my parents are always there to provide advice and practical support when we need it. They play a big role in my daughter’s life and it is very reassuring for me to know that she has another source of love and attention outside of our home. Other members of the family help me just by understanding my situation – they don’t get upset or angry with me for missing special occasions and are delighted on the rare occasions that I make an appearance. 

My friends: my best friend has remained in my corner all these years, even though I’m not much use on the socialising front (or the ‘being remotely normal’ front). She is always there if I need her and is firmly on my side, even when I’m irrational or struggling emotionally. She belongs in the family section really; if past lives are really a thing, we’ve definitely been through at least one life together before.

I’m grateful for the handful of friends who are always pleased to hear from me despite the fact that it can be AGES between calls or texts. That they haven’t given up on me is an amazing thing.

The Essentials: our two bedroom council flat in East London is a blessing in my eyes (though doubtless some people would look down on it). Finding somewhere affordable to live in London is  a nightmare so I’m truly grateful for our secure tenancy. We are a few minutes walk from my parents’ place, my daughter’s school, the park, my GP surgery and my favourite nail place💅🏻😊. When I applied for this flat I didn’t know that a few years later I’d become so ill and largely housebound but if I had known, this is exactly the location I’d have picked. The fact that we have some lovely neighbours is a bonus too. When I’m getting stressed because I’m too poorly to tidy up/clean as often as I’d like or decorate as I desperately want to, I remind myself that we have everything we need here. 

The NHS: the NHS isn’t perfect; you need to advocate for yourself and stay on top of the admin side of things, as it can be slow. However, I’m grateful that I have access to some of the country’s best neurosurgeons, not to mention my GP who I see regularly and the prescribed meds that I am not charged for. I dread to think what all my treatments over the years would cost if I had to pay for it from my own pocket. I’m also grateful that I don’t have to do battle with an insurance company to get access to treatments; I know this can be very stressful for spoonies in the US.

Benefits system: this one isn’t always easy to feel grateful for, as our current government seems determined to paint the sick and disabled as work shy freeloaders. The systems in place for processing claims from sick/disabled people are in desperate need of reform. I paid tax throughout the decade I was in teaching; I wish people could understand that becoming too sick to work can happen to anyone, including people who worked hard and loved their careers. I’m grateful for the help we receive to keep a roof over our heads and food on the table, but I wish that sick and disabled people didn’t have to fight so hard to get what they are entitled to. The system at present is designed to hinder access to entitlements rather than facilitate it. The stigma around being sick or disabled is absolutely stifling. Still, I’m grateful that we’re not in a Victorian work house kind of situation; but we do have a Tory government, so I probably shouldn’t speak too soon…

Looking back:  I remember what it was like to live with someone who made me feel guilty for being sick. I remember what it was like to struggle through work and feel constantly stressed when my boss hounded me about my sickness levels. I remember what it was like to struggle with rent that was ludicrously high and panicking that I’d lose my job and not be able to pay it at all. I remember when being stuck at home in terrible pain meant being alone for huge swathes of time. I remember the desperate struggle to appear ‘normal’ so that I could cling onto the career I’d worked so hard for.

It is because I can remember the times when I felt desperate and alone that I truly value the blessings in my life now. I did lose my career in the end but because of the other good things in my life, I was eventually able to cope with it. The pain can and does crush me underfoot but I know how much harder my life would be if I didn’t have the above mentioned blessings to cushion and support me.

What are you grateful for?

Wishing you good luck and happy days,

Kindra x

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A New Nail Shape and Bargain Polish 

I’m something of a perfectionist when it comes to my nails. If they look shabby or the layer of acrylic has grown too far out, it bothers me. Way back before I became largely housebound, fitting in regular nail appointments around teaching and socialising wasn’t a big deal. Now of course, things are different. Weeks can go by when I’m not well enough to leave home and when I am, it’s only with the support of my husband and/or parents.

Nonetheless, getting my nails done remains a tiny and all too infrequent window into the person I used to be. No matter how sick I am, my nails looking nice gives me a little joy.

So, here’s how my nails look after my latest (and too long delayed) visit to my nail place. I’ve gone for an Almond shape rather than the square with slightly rounded edges shape I’ve been in the habit of getting for a long time.

I really like this shape. It elongates the fingers and strikes me as elegant. I find the sharp spike look that’s popular now to be too extreme for my taste but the Almond shape is somewhat softer. 

The polish I went for is the shade 04 Our Sweetest Day from Essence’s The Gel range. I love these little polishes; they apply and perform well and are a bargain at £1.60 each (available in the UK from Wilko online or in store). I chose to have 3 coats of this particular shade but generally 2 coats is sufficient with these polishes. They’re a great way to update your collection of colours each season without causing significant damage  your bank balance 😊.

What nail shape do you favour? Do you have a favourite brand for polishes? 

Wishing you good luck and happy days,

Kindra x

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Note: this is not a sponsored post. All products discussed were purchased with my own money.

Chronic Life: Online Support Groups

If you’re living with an invisible illness or disability, particularly one that limits your ability to get out of the house, then the chances are that you’ve found one or more online support groups to join. I myself am a member of a few and have set up my own small, closed group for people that live with Chronic Migraine, although all spoonies are welcome.

Finding and connecting with people who have first hand experience of your condition online can be very beneficial (check out my Online Friendships post). It helps to lessen the terrible isolation that can be the result of chronic illness shrinking your physical world. But today I’d like to share my experiences & thoughts of online support groups, the kind that are set up by spoonies for spoonies and are often medical condition specific. In no particular order, here are some things I’ve noticed:

Culture matters – when I was a teacher, I spent a period of time between permanent roles doing supply teaching. I found it to be an excellent way of getting to know local schools before committing to one, as I did after a few months (I walked into one school for 3 days supply and stayed 6 years😊). My first concern when sizing up a school was the culture at work there; how do the staff speak to pupils around the building? How do the children respond to a new face at school? What was the atmosphere like in the playground and dining room? The answers to these questions told me how I would fit in to this school and I’ve found the same to be true of support groups. How do people ‘speak’ to each other? If new people post, does anyone respond? Which leads me on to…

Competitive spoonies – if you’ve been a member of a number of support groups, chances are you’ve come across at least one person like this. They are the ones who jump in at any and every opportunity to point out the ways in which they have it tougher than you. Sometimes they actively ignore the point of a post or request for advice to carve out such an opportunity. It can be VERY irritating. Even when we all have the same diagnosis, an illness can impact on people differently and to varying extents. Just because I am no longer able to work and am largely housebound, I don’t feel the need to belittle the hardships faced by someone who is still able to work. Competing with each other to earn the dubious titles of Most Disabled or Most Miserable is a total waste of our already limited energy and when I see it in support groups, it completely switches off my interest in being a member.

How are treatment options discussed? It can be really useful to hear first hand accounts of specific treatments, especially if we’re worried because they are invasive or in some way out of our comfort zone. We want to know about side effects and the practicalities and logistics involved as well as the impact the treatment had. But you know what we never need to hear? “That surgeon you’re seeing is a total butcher, don’t see him!” or “I had that treatment and it was the worst decision I’ve ever made in my life!! Didn’t help at all and everything is a million times worse now!” (These are real examples I’ve seen in support groups in response to a member asking if anyone else had had a specific surgery at a certain hospital). 
I’ve had treatments/investigative procedures done that didn’t work or that went wrong, but there’s a way to communicate useful information without freaking out other spoonies, who are more likely than the general population to be struggling with depression and/or anxiety as it is. For example, there was one stage of my ICP/Pressure Bolt Monitoring when things went badly, causing me to scream with pain. Rather than terrifying someone who is looking for info and advice on the procedure (which is the most reliable way of getting important info on how the pressure inside head is behaving), I prefer to advise them to ask for sedatives and pain meds to be on hand before this stage of the process is attempted. Surely that’s more useful than “Oh my God, getting the monitor out of my skull was a nightmare!! I screamed the place down! Don’t let them do the monitoring on you!” 

We’re all different – it’s not unusual for spoonies to have more than one diagnosis and we have all arrived at our current situation via our own unique journey. I think a good support group should be a space where we can share our experiences without judging each other. We (and indeed our individual specialists) may have different views on treatments, diagnostic criteria and pain management.  Judging each other and bossing each other about isn’t really helpful to anyone. 

Overall I think online support groups are a good thing and can be great sources of information and comfort. The key though is finding one that suits you and makes you feel better for having taken part, not worse. Remember that a lot of support groups tend to be frequented by those spoonies who are struggling the most; spoonies who are doing well as a result of treatments tend not to post so often, so don’t be overwhelmed and lose hope. Check out groups of different sizes and consider starting your own support group if you want to. I set up my own small closed group (Chronic Pain Cockney – Living with Daily Migraine) some time ago and while I’m not able to post as often as I’d like, it’s a supportive space for sharing articles and ideas on Chronic Life.

If you are not enjoying a particular group, leave it and don’t give it another thought. I have found that support groups set up by reputable charities are a good place to start if you’re  looking for your first support group to join. 

What do you think about online support groups? Do you find them helpful?

Wishing you good luck and happy days ,

Kindra x

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What My Migraine Was Hiding

{As ever with the Chronic Life series, I must point out that I’m not a doctor or medical expert, just a patient like any other. My thoughts and feelings are just that; medical advice should be sought from your specialist.}

Getting new additional diagnoses when you’ve lived with Migraine for most of your life is a strange and disorienting thing. Finding myself dealing with Neurosurgeons and having a hole drilled in my head to assess the pressure in there (see my ICP Monitoring post here) has been a dizzying experience both literally and figuratively.

Since the MRI I had back in January 2016, I’ve had to get to grips with two diagnoses that were completely new to me. The MRI itself showed that I have a Chiari Malformation Type 1 (click here for a brief explanation of what this type of Chiari is). I had no clue what that meant so had to spend some time finding reliable sources of information to educate myself before meeting with my Neurosurgeon…it’s now September and I feel like I’ve been to the surgeon’s clinic, the surgical ward and MRI department so often that the particular part of West London has become a familiar stamping ground for me & my husband. Fortunately it’s quite a pretty square so we’ve managed to do a little outdoors coffee drinking, in a busy part of London yet surrounded by trees, before/after appointments; you’ve got to take your little relaxing moments wherever you can find them when living  this Chronic Life! 

The next step was meeting with my Neurosurgeon. He recommended that I have ICP Monitoring rather than going straight for the decompression surgery that is the treatment (but sadly not a  cure) for Chiari. He wanted to know what the pressure inside my head was like.

As it turns out this was a good call on his part, as the pressure is high. Having analysed the readings from the monitoring procedure, the Neurosurgical team believe that what they’re seeing on my results is high pressure that isn’t being caused by the Chiari but is a problem in it’s own right. This raised pressure (the term they’re using for it is Benign Intracranial Hypertension or IIH) needs to be addressed, as the team have advised me that leaving it as it is would pose a risk to my sight, memory and cognitive function. They expect that addressing the pressure will be of benefit in terms of the daily pain, but how much remains to be seen. It will also cut down some of the risk involved in the decompression surgery in the future, should I decide to have it.

Here’s the part that’s a little scary for me – they have strongly recommended that I have a shunt placed in my brain to drain the excess CSF fluid down to my tummy. The hospital I’m seen at it is well known for excellent standards of Neurosurgical care and I know that my surgeon does far more complicated surgeries than this but still, I’m a little anxious at the prospect of brain surgery (I was proud of myself for getting through the ICP monitoring!). The shunt procedure has risks attached and is something I’ll live with for the rest of my life, so I’m learning as much about it as I can while I’m on the waiting list.


(Me with the pressure bolt monitoring thing attached)

But lurking behind all this in my mind are other questions – how long have the Chiari and IIH been there? If I didn’t have a history of Chronic Migraine in my own life and in the family, would these disorders have been picked up sooner? SHOULD they have been picked up sooner, despite my Migraine? 

I realise that it would probably be wise to put these questions aside, as definitive answers to them are very unlikely to be forthcoming! But still, I think they are entitled to exist and talking them out with my family and blogging about them may help me to process them. I can’t prove anything in relation to these questions, but here’s what I think/feel: I think that my long standing Migraine diagnosis caused the people treating me to attribute ALL neurological symptoms to Migraine. The specialist I had for over a decade was well-respected with good cause and often went beyond the call of duty to support me and my family, so I don’t feel angry that these conditions weren’t picked up – indeed, I believe that the Chiari may have been less of a problem at that time as my condition has deteriorated since the birth of my daughter (her delivery was hard and I suspect worsened the Chiari, though I can’t prove it). As for the pressure – was my pressure high 5 years ago, 10 years ago, 15 years ago? Does the steady and devastating increase in debilitating daily pain & symptoms over recent years mean that my pressure has been climbing during  time period? 

These questions have the potential to be the kind that circle around in your head at night but never really get answered. One thing I do firmly believe is this – it is well worth discussing with your specialist such tests as an MRI and if need be an LP to check for neurological abnormalities or pressure problems, if you’re living with Migraine that fails to respond to treatment or worsens compared to what you’re used to. Of course most of the time the outcome will be results that are all clear, but I feel that my newer diagnoses were masked by the Migraine. My specialists and I have no doubt that I personally do in fact have Migraine that I’ve inherited genetically but it is not unheard of for people with Chiari, for example, to be misdiagnosed as having Migraine and/or Fibromyalgia (check out the Mayfield Clinic Website for more details on Chiari symptoms). Of course, there may well be many others out there who, like me, have Migraine AND another neurological condition. I’m left feeling that I should have asked for tests back when my condition first deteriorated to the point where I had to stop teaching and became largely housebound (as I still am). 

Having gotten all that off my chest, it’s time to go back to my research on what to expect from life with a VP shunt.

Wishing you good luck and happy days,

Kindra x

Follow me on Instagram.

Tweet me @chroniccockney

Posts you might enjoy:

Everybody’s An Expert On Migraine.

Migraine and Coping With Hospital Stays.

Making Medical Appointments Work For You.

Migraine and Coping with Hospital Stays

A stay in hospital can be a uniquely stressful and unsettling experience. As is the case with most experiences, how we feel about it and how we cope with it varies widely from person to person; indeed, some people may not find it stressful or unsettling at all! For those of us who are living with Chronic Migraine, there are certain aspects of the hospital environment that cause anxiety, physical pain and worsening of our ludicrously wide range of symptoms. 


I recently had to spend some time in hospital for ICP pressure monitoring (also known as a pressure bolt monitor). This involved having a little hole drilled in skull and a monitoring thing (device? chip?) inserted. It was then connected via a wire to a laptop that recorded pressure readings over a period of time. Yes, it was exactly as much fun as it sounds and probably deserves a post of it’s own.

There were a few things I was able to do to make the whole experience more manageable in terms of my Migraine and the general ickiness of being in hospital, so I thought I’d share them in case they’re helpful to others in the future:

Hospitals are loud, bright and they smell weird, all of which can be problematic for a person living with Chronic Migraine. Don’t neglect the obvious – make sure that you pack earplugs and an eye mask (or some dark light material to fold and cover your eyes with) to help you block out light and sound when needed. I also bring a 4head stick as it cools the forehead in a comforting way, much like a wet cloth but without the need for water. I haven’t really found an effective way to deal with weird hospital smells but a favourite hand/body lotion or essential oil can be distracting.

Fasting before surgery can trigger a Migraine attack – I once fasted before a minor surgery and was in the midst of such a severe Migraine attack by the time I was wheeled into theatre that the medical staff refused put me under general anaesthetic (presumably because they were concerned about vomiting). So this time around I voiced my concern in advance and had a IV drip attached to avoid dehydration while I fasted. I also made sure that the medical staff were OK with me taking my rescue meds whilst fasting if I needed to…of course, I did need to.

Don’t expect hospital staff to fully grasp the severity of Migraine pain – sadly, some won’t grasp how much pain you’re feeling or the extent of other debilitating symptoms unless you spell it out for them. Even in a Neurology hospital, I found that certain members of staff saw me crying and assumed that I was scared of surgery (I wonder if the ’emotional woman’ stereotype flitted through their minds..?) when in fact the tears are just what happens when pain reaches a certain high level for me. I don’t mind saying that if I’m crying, that means the pain is causing me to panic and is VERY high indeed. Next time I go into hospital, I’ll make a point of telling my day/night named nurse how my Migraine tends to operate and what my painscale is like, so when the next full blown Migraine attack hits, we’ll already have a plan in place.

Even the most efficient wards might not have a ready supply of your meds so I recommend taking with you a supply of every medication you use, enough to cover your entire hospital stay if you already know how long it will be. Of course wards can generally get hold of what you need but it can take time and if it’s an abortive or rescue medication, you might need it urgently with little warning. 

Migraine friendly snacks – if you need to eat something to help keep your meds down during an attack, it’s really useful to have your own little supply in your bedside locker. For me that tends to be cereal bars and cheesy cracker type snacks as they don’t require a fridge and help with the evil nausea that can be caused both by medication and the Migraine attack itself. 

Migraine can make processing a chunk of information in one go difficult. The ‘brain fog’ that goes with Migraine and other conditions such as Fibromyalgia means that we’re not always able to absorb information as quickly or well as we’d like. I recommend having a pen and little note book handy to jot down the names of medical staff and what they say. It’s also completely ok to ask for information to be repeated, either just for you or in front of your next of kin.

A couple of points that apply to all patients whether they live with Migraine or not…

Being in hospital can be stressful so consider in advance what might be soothing for you. Your favourite books or games on your tablet, colouring books or some meditation podcasts to listen to on headphones might help. Have a chat with your friends and family about who should visit and when, to help you stay upbeat and provide you with emotional support or in the case of my husband and best friend, a healthy dose of mockery.

You are a patient, not a prisoner. The feeling of being stranded and out of control while in hospital can cause real anxiety and upset. Sometimes when you arrive on the ward, the person greeting you may launch into a big list of rules including serious emphasis on visiting hours…don’t let this freak you out. The last ward I stayed on had limited visiting hours (2pm-7pm). I was going to be having surgery in the morning and while I appreciated that the rules were there to keep things quiet for patients who were all having some kind of Neuro or spinal surgery, I wanted to see my husband before going to have my skull drilled! This was arranged by my telling the nursing staff that I wanted this and by my husband turning up and asking politely. I also made it clear that I’d happily leave the ward and go to the hospital coffee shop with my husband if he wasn’t allowed in to see me before surgery. I had no problem sticking to visiting hours at all other times during my stay and I genuinely wouldn’t have objected to the rules being stretched for another patient if they were feeling anxious or upset pre or post surgery.

Keeping in touch with the outside world can be really comforting for anybody in hospital. Personally I found texts and Facebook messages/updates to be a real lifeline – hospitals seem to have their own time stream and a day can feel like a long time. So make sure your phone and charger are fully functioning and within arm’s reach!

Do you have any tips for surviving a hospital stay when you live with Migraine or any other chronic illness?

Wishing you good luck and happy days,

Kindra x

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Chronic Life: Making Medical Appointments Work for You

Like many other spoonies around the world, I have attended a vast number of medical appointments in my life so far. But it was only before my first meeting with a particular Neurosurgeon recently (to make a plan re. my Chiari Malformation) that I consciously paused to consider what I needed to do to make sure that this appointment was beneficial to me.

  

Obviously these are just my own thoughts and recommendations, based on my personal experience; other spoonies may have different views. These tips are as much reminders for myself as for others!

So, here are a few tips based on what has worked for me:

  • Create a medical file – Depending on how much paperwork your condition(s) generate & how long you’ve been living with these conditions, you may need to decide if you want each file to cover a year or some other suitable period of time. Your file can be separated in which ever way makes most sense to you. Sections I created in mine include: Contacts Details (for every specialist, GP, nurse practitioner I see), Appointment Log, Letters (each specialist has their own section), Test Results, Pain Diary. I also keep a small notebook in the back of my file. I keep my current file a manageable size so that I can take it to appointments with me when I wish, especially if I’m seeing someone new.
  • Take an extra pair of ears – Some people prefer to attend appointments alone; indeed, I preferred to do so for many years. But these days I like to have my husband attend with me. Daily pain can cause what many spoonies refer to as ‘brain fog’ so I like to be able to talk the appointment through later with my husband. This leads onto my next point…
  • Write down the major points and decisions made during appointment as soon as you leave. Some people may not feel the need to do this but I find it reassuring as a way to make sure I haven’t missed any important details.
  • Before attending appointment, consider what key questions you want answered – I find going into appointments with the things I want explained or clarified written in front of me is helpful as appointments can fly by & it’s all to easy to find yourself outside remembering that you had questions that you never got around to asking.
  • Before you leave the room, ensure that you know exactly what the plan is – this one can be as simple as saying “So before I go, can I just confirm that our plan moving forward is…” If tests/procedures have been recommended, check who will arrange these and which office you should contact if letters/appointment details aren’t forthcoming.
  • Don’t be shy about asking for a time frame – my Neuro always provides a time frame and tells me to contact his office if x,y or z hasn’t been done by a certain date. Not all specialists do this though so feel free to ask – it’s a reasonable question.
  • Get used to politely advocating for yourself – for example, I was initially given an appointment 5 months away to discuss my Chiari. One phone call to my Neurosurgeon’s secretary was all it took for that waiting time to be cut to a couple of weeks. It doesn’t always happen as smoothly as that but if you’re unhappy with some element of your care or the related admin, calling or having somebody call on your behalf is completely reasonable. 
  • Remember that you are not stuck with anyone – if you’re finding that an individual makes you anxious or unhappy in their dealings with you, remind yourself that you’re not stuck with them! I’ve known a wonderful Neurologist who I saw for many years; I’ve also met with one very well-known Neuro who was arrogant, abrasive and an all around arsehole. On doing a little research afterwards I found that many patients agreed with my assessment of him, so it wasn’t just me! In my opinion, a specialist’s knowledge and experience is of no use to me if they can’t communicate it without being so offensive that I want to hit them with a chair. I’m in a lot of pain and have been for many years – I won’t tolerate anyone adding to my stress with their poor people skills. If you are unhappy seeing someone then don’t feel you need to stick with them; arrange a referral to someone else. 
  • Remember who is in charge – you! Of course we’re mostly guided by the advice of our specialists but we are the ones in charge of our bodies and all decisions related to them. Sometimes appointments can be nerve-wracking but remember that you decide what treatments you’re happy to undertake. If you’re being offered something like an op, it’s totally ok to not decide right there in the room. If you’d like some time to discuss things with family before letting specialist know of your decision then that’s totally ok. Of course some situations require urgent action but if you’re attending an outpatient appointment then unless you’re being strongly adviced to become an inpatient right now, most decisions can at least wait 24 hours if you need a little time to process what you’ve been told. 

Do you have any particular strategies for ensuring that you get the most out of your appointments?

Wishing you good luck & happy days,

Kindra x

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Chronic Life: Getting a New Diagnosis

I was 9 years old when I had my first Migraine. By my late teens I had Chronic Migraine (15 days of head pain per month with at least 8 of those being full blown Migraine is the current definition for Chronic Migraine; sadly my migraines have always been significantly more frequent than this). I’ve had periods of Daily Migraine in the years since but now, at the age of 34, I’ve been living with Daily Migraine for the last 3 years or so. Towards the end of 2015 I was also diagnosed with Fibromyalgia, which was the least surprising diagnosis I’ve ever received; it’s not unusual for patients with another flavour of chronic pain to develop Fibro as our Central Nervous Systems no longer know which was is up! 

In the last few months I’ve received a diagnosis that DID come as a bit of a surprise and it’s that one I’d like to focus on in this post.

  

On reviewing an MRI scan I had done in January, my Neurologist and the Neurosurgeon he consulted diagnosed me as having a Chiari Malformation (Type 1). In this post I’ll just give a very basic outline of what that means; I’ll focus on Chiari in more detail in future posts but today my focus is more on the questions and emotions that a new diagnosis can raise.

  
{Diagram from the website of the Mayfield Clinic}

The above picture shows a Chiari Malformation. In a typically developed brain, the entire brain including  the tonsils of the Cerebellum, sits inside the skull. A Chiari Malformation is deemed to be present when the tonsils herniate downwards past the Foramen Magnum into the spinal column by more that 5mm (there is much debate on this amongst specialists as patients can in fact be symptomatic when the number is less than 5 mm). This can have a negative impact on the flow of Cervical Spinal Fluid around the brain. The symptoms can be mild or they can be severe and debilitating – it varies from patient to patient. Keep an eye out for upcoming posts where I’ll talk about Chiari in more depth.

So, after all these years I have a diagnosis of a condition that could be contributing to the really painful & debilitating symptoms that I live with that have thus far been attributed entirely to Chronic Daily Migraine and Fibromyalgia. When I first heard about Chiari, I didn’t even know that the Cerebellum had tonsils, never mind that they can herniate into places they shouldn’t! I thought that the only tonsils I possessed were the ones I had removed after many bouts of tonsillitis.

The thing that has helped me to get to grips with the Chiari diagnosis most is educating myself on it. It has taken quite some time for the MRI scan to get to Neurologist, Neurologist to consult Neurosurgeon,  referral to Neurosurgeon to be processed and for information on these things to be passed on to me. Thankfully I managed to get appointment with Neurosurgeon for later this month. But in a way it’s been a good thing that I’ve had this waiting time over last few months. It gave me the space to find information and video lectures online to help me grasp the basics of what Chiari is, possible symptoms and treatment options. Now when I go to see the Neurosurgeon I should have some idea of what he’s talking about, which I wouldn’t have if I’d seen him immediately after the MRI. What people find reassuring of course varies from person to person but for me, doing some research and learning as much as I can about a new diagnosis stops me feeling helpless.

Getting a new/additional diagnosis when you’re already living with chronic conditions is a mixed bag. On the plus side, it’s better to have a diagnosis because an additional diagnosis may mean new treatment options that could help to improve symptoms. On the other hand it’s strange to suddenly be faced with a condition that you’ve never heard of; my GP hadn’t heard of it either! I think it’s normal to feel shocked and maybe anxious. As I’ve said, chasing down info really helps me personally but some people may also find that social media can be helpful in this scenario. The Spoonie community on Twitter is so welcoming and even if the new diagnosis is a relatively rare condition, you’re bound to find others who also live with it and may have valuable insights to share.

As with many situations in life, I’ve found talking through my concerns re. the Chiari with people close to me to be invaluable. If I fall silent and internalise all these thoughts then my already erratic sleep pattern really suffers. I’ve also begun work on a list of symptoms that I want to discuss with Neurosurgeon and questions I want to ask. I find that writing them down not only helps me to worry less but also makes me feel that I’ll get the most I can from the upcoming appointment. 

If you would like to know more about Chiari, I recommend the videos made by the Chiari and Syringomyelia Foundation  (they also have a YouTube channel)  and Mayfield Chiari Clinic. The Conquer Chiari website is also a great resource.

How do you handle a new diagnosis?

Wishing you good luck and happy days,

Kindra x

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