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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Brain Surgery: My VP Shunt

{This post includes a photo of a stapled surgical incision}

When I was preparing myself for my VP (Ventricular Peritoneal) shunt surgery, I had a look via Google for any articles or blog posts that would give me some idea of what to expect. I was able to locate basic information on the surgery itself without difficulty. But personal experiences were harder to come by. So, two weeks after having my VP shunt fitted, I’m at home recovering and feel that it’s only right to create a post about my experience.

As you probably already know, the purpose of a VP shunt is to drain some of the excess fluid from the brain, thereby lowering the pressure inside the skull (I’m no medical expert so apologies in advance if my explanation isn’t spot on – I’ll recommend sources of medical info at the end of this post). In my case the pressure needed to be lowered both in the hope that it may help with some of my debilitating symptoms but primarily to facilitate future decompression surgery for my Chiari Malformation; my neurosurgeon felt that the high pressure increased the risks too much and therefore decided that a VP shunt had to be fitted before we move on to decompression. So, a VP shunt is placed in this way:

Including time in the anaesthetic room, recovery room and being moved around the hospital as needed, the whole thing took no more than 3 hours. I believe the surgery itself took somewhere between an hour and 90 minutes. There was some head pain when I awoke but it was  manageable with morphine (which I had to ask for dose by dose…what’s wrong with a good old fashioned morphine drip after surgery? Sigh.) I was of course tired but thankfully there was no post-anaesthetic throwing up on this occasion; always a bonus. 


(Me and my Shady pillow post surgery)

In addition to the incision at the back of my head, there was one on the right side of the abdomen. This made moving around a little tricky but I was able to shuffle to the bathroom etc within a few hours of waking up from the surgery. Overall I was surprised at how soon I was able to be discharged; I was only in hospital for 3 nights. Of course, had there been any signs of infection or misplacement of the shunt, I’d have been kept in for longer. Scans were taken on the morning after surgery to ensure that everything was where it should be; since my surgeon was happy with what he saw and I was managing the surgical pain with my usual painkillers, I was able to come home rather quickly.

If you’re facing the surgery yourself, you’ll probably want to know how the incision looks. Here’s mine:

The exact placement and size of the incision will depend on the clinical decisions and preferences of the surgeon; mine is at the back of my head, on the right. This was the first time I’d had staples as opposed to thread stitches after a surgery. It looks pretty grim but I didn’t find that they hurt any more that the thread type. Removal of the staples took place 10 days after surgery at my GP practice. The abdominal ones were easily removed. The head ones were more painful to get out, but I was able to breath through it. I found that the surgical pain, which had been waning, was exacerbated by the removal of the staples but I still found it manageable with my usual painkillers (which are, I admit, pretty strong).

It’s still early days in my VP shunt journey. I long to wash my hair! My recovery has been complicated by repeated kidney infections/kidney stone stuff (I’ve been admitted to hospital twice in last few weeks due to this – my kidneys have shockingly bad timing or perhaps they’re just mocking me) but I’m grateful that the recovery from my surgery is going smoothly so far. 

My advice to anyone who needs this surgery is to take it one step at a time and know that you WILL get through it. As is the case with all surgeries, managing the pain from the incisions is really important. When the pain is tolerable, it’s easier to be patient and calm during recovery. It’s important to make sure that when you are discharged to recover at home, you have all the medications you’ll need as well as a discharge letter that explains exactly what you’ve had done. Should you be unlucky and develop an infection once you’re home (signs to look out for include fever, vomiting, becoming disoriented, extreme head pain), this letter is very useful for handing to the person who deals with you at A&E. I’ve found that being prepared for all eventualities and having plenty of pain meds available, even if I turned out to need less than I expected, allowed me to relax and focus on my recovery. As I’m sure is the case with most people living with chronic pain, I’m usually as conservative as possible with pain meds. I’m not Superwoman though; I’m of the opinion that I’m as entitled to proper post surgery pain relief as someone who doesn’t live with pain on a daily basis. If you’re worried about surgical pain being added to the chronic pain you already deal with, speak to your surgeon and nurse before you go to theatre and put a plan in place re. what combination of meds will be available to you when you wake up. As it turned out, I found that I didn’t need morphine beyond 12 hours after surgery 👍🏼. 

If you or someone you love needs a VP shunt and you’re anxious about the surgery, feel free to get in touch. You can email me at chronicpaincockney@gmail.com or follow me on Twitter.

Wishing you good luck & happy days,

Kindra x 

Useful links: 

IIH UK Surgical Leaflet

Hydrocephalus Association: Shunts Overview

NHS Choices: Treating Hydrocephalus 

Johns Hopkins Medicine: Shunt Procedure

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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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

Tweet/follow me –@chroniccockney

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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

Tweet/follow me @chroniccockney

Check out my YouTube channel.

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Chronic Life: The Trouble with ‘Thinking Positive’

Living with debilitating daily pain is one of those things that’s difficult to fully grasp if you or a person you love hasn’t experienced it. That’s not to say that ‘no one understands’; I know people who are sufficiently empathetic that they’re able to put themselves in my position and gain some insight into what Chronic Daily Migraine & Fibromyalgia have done to my life. However, for me personally I have to draw the line at being told how I should feel about my current situation; I resent it, especially I must admit, when coming from people who have never experienced anything like what I’m going through.

  

 

Being told to ‘think positive’ is irritating for me; what does it even mean?? I have a genetic neurological disease that won’t go away just because I think happy thoughts. I appreciate that how we think about our world has a big impact on how we feel about it. But such phrases as ‘you need to think positive!’ or ‘don’t be so negative!’ are unhelpful and sometimes offensive. For one thing, unless you’re my husband, one of my parents or my best friend, you really don’t know the current version of me well enough to comment on my thought processes. Furthermore, the abovementioned phrases imply that I am somehow responsible for my disability and that I’ve brought the massive challenges and difficulties it involves upon myself by not being cheerful enough. That’s an irritation I could well do without. It also makes me wonder – if my disability were visible from the outside, would I still be on the receiving end of ‘think positive’ lectures? Perhaps I would. Aggravating banality and ill-thought-through words probably find their way to all chronically ill or disabled people at some point.

Both hope and gratitude are vital elements in my way of coping with the Chronic Life I’m forced to lead at the moment. I try each new treatment hoping that it will have an impact. I try to make sure that there are dates on the calendar for me to look forward to and hope that I get lucky and the date/event in question coincides with a few of my rare functional hours. I make a conscious effort to find the little moments of joy that make this life bearable. I remind myself to feel gratitude, despite the pain, for all the love and support around me. 

I’m also entitled to feel low, exhausted or hopeless sometimes. This is a reasonable response to debilitating pain, not me being ‘negative’. I could of course pretend to feel positive 24/7 and fall silent when I’m struggling emotionally but really, why should I? My silence spares other people the awkward experience of listening to me without really being able to help much, but does me no good at all. Saying something sucks when it does, does not a ‘negative person’ make!  I feel strongly that Spoonies should be able to discuss the realities of their lives without being labelled as negative. I don’t dump my emotional baggage onto anyone who’ll listen; I am considerate of other people’s needs and situations. I just wish that people IRL and especially on social media would show the same consideration and stop to think before hurling ‘be positive!’ at people who are doing the best they can with a really difficult situation.

Are you a Spoonie who has been told to ‘think positive’? How did you feel about it?

Wishing you good luck and happy days,

Kindra x

Tweet/follow me @chroniccockney

Check out my YouTube channel.

Chronic Pain and the Erosion of Self 5: Missing Special Moments 

As anybody living with a debilitating chronic illness can tell you, missing the really special or important moments is a terrible aspect of Chronic Life. It’s not just our moments that pass us by either, but the moments of people we care about.

  

Today my daughter went to her little cousin’s 2nd birthday party. They spent the afternoon building and making things in the woods at a nature reserve and judging by the photos and the worn out child who came home to me, a great & muddy time was had by all. My husband & my mum took my daughter to this event; I wasn’t able to lift my head from pillow or stand up for longer that 30 seconds until I took some of my emergency pain meds at 6 in the evening. Even then, I was only able to sit up long enough to have something to eat and a little catch up with my daughter.

Missing events like that one is an all too common occurrence when you living with chronic pain / chronic illness and it always feels awful. It’s so easy to feel guilty and useless in this situation, despite the fact that I know on a rational level that it’s not a choice I made, but rather one that was thrust upon me. 

The guilt and sadness is even more pointed when the moment I’m missing is a huge and one-time event. If you’ve watched my YouTube videos, you’ll know that missing my brother’s wedding in September was devastating. There’s nothing that anyone can say and no positive thinking strategy that will make me ok with that; I simply will never be ok with that. While my brother understood that I was busy rocking with pain and throwing up every half an hour in the dark, he’ll never be ok with it either. That nugget of sadness will always be attached to his wedding day for both of us.

Just to add to the cheery tone of this post, I’d like to talk about funerals for a moment. I made it to the church for my beloved Nan’s funeral recently but only just made it through the mass and burial by taking rescue meds; turns out it’s difficult to do that discretely when you’re sat in the front pew of a silent church 🙈. That was actually my most successful recent attempt at attending a close relative’s funeral (although I completely missed the wake, which my Nan wouldn’t have been happy about – she would have much preferred me to have been well enough for a drink with the family & those who came over from Ireland!). Of course my abortive and rescue meds don’t always work at all. There have been other family funerals recently when I desperately wanted to be there to comfort people I love in their grief but just couldn’t move. To be stranded and unable to stand with them during those devastating moments just made my heart ache. 

I wish I could end this post with some upbeat advice on how to deal with missing the important and special events in life. I’m afraid I can’t; it is awful and I don’t know how to make it less so. The one thing that helps me survive each disappointment is the understating and empathy shown by the people close to me. They remember the love and premium I placed on family before my condition worsened and they know that it’s my body that’s not cooperating; my values and love for them haven’t changed. I suppose if there’s a lesson to be learnt from this, it’s that the people who are truly understanding and don’t take their disappointment out on you when you can’t attend an important event are the ones that deserve to be prioritised when you have a spoon or two to spare. 

How do you deal with missing special moments/events?

Wishing you good luck and happy days,

Kindra x

Check out my YouTube channel.

Tweet/follow me here.

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