Why I’m done with online support groups for chronic illness! #chronicillness #chronicblogs

If you follow my blog you’ll know that I’ve been very active in a variety of support groups since becoming chronically ill in 2014.

So why the change of heart?

In nearly every group I’ve joined, there’s been a culture of drama and/or negativity. I love to support others, but my health was suffering by getting too involved and I realised that I was done with being an active group member. I have left most groups, so I want to explore online support groups and share my experiences.

What is a support group? 

  • A face to face or online community open to anyone, but often focused on specific topics i.e. mental health or pain conditions
  • Led by a professional facilitator, such as a nurse or counsellor, or by group members/founders
  • A comfortable space where individuals come together to share their stories, experiences, feelings, coping strategies and information.
  • A way to help reduce isolation and loneliness by realising that there are others dealing with similar situations.
  • A bridge between medical support and self-help

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Why I joined online support groups

Rewind to when I first fell ill. I was isolated and lonely as friends began disappearing from my life. I was struggling to understand my illness and my mental health was suffering. When I joined an online support group, I realised I wasn’t the only one with my diagnosis, which helped my mental state. However, the negativity in the group exacerbated worries about my future. I decided this wasn’t the group for me.

So, I joined an open group called Mission Migraine. It was full of amazing women and had a positive vibe, yet we all supported each other. What I loved most, was the we shared our own stories to raise awareness and challenge misconceptions.  I was proud of what we were doing, so I started the Twitter account @migrainemission to continue raising awareness. Sadly, the Facebook group is no longer running.

Finding the right fit

I knew that Migraine wasn’t the full picture, so I explored a variety of groups to help me understand what was happening. I connected with other people with similar symptoms to my own, in well led groups. I was able to access information to help me research possible causes of my symptoms. In one group, I read about a consultant in Cambridge, specialising in Pulsatille Tinnitus. This was a pivotal moment in my journey! If you don’t know my story, then you can read it here.

DesignWhen I was initially diagnosed with a rare brain disease, Idiopathic Intracranial Hypertension (IIH), I joined IIH support groups, which helped me find information and reassurance. Soon I became overwhelmed by the number of Facebook groups I was in, so had to decide which of these were right for me. I left those that weren’t. I’d found more friends who totally understood my pain!

When it no longer does what it says on the tin

In most groups I joined, I’d encourage positivity and try to raise confidence levels. I’d post inspirational quotes, share knowledge and helped other’s learn to celebrate the smallest achievements. Helping others gave me a sense of purpose and achievement.

But I couldn’t get away from the drama.

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Members of support groups are vulnerable, with many suffering with unrelenting pain, crippling anxiety, financial or family worries. This creates a breeding ground for negativity and arguments. If this disruptive behaviour isn’t dealt with effectively, then the group is no longer able to support it’s members and is not fit for purpose.

As an empath, I’m susceptible to getting  too involved. I gave so much, but my physical and mental health were suffering. What I was getting out of these groups now? I’d had enough of group politics and feeling responsible for near strangers. I worried I’d lose friendships, but when I did leave I was flooded with relief. And of course, my true friends have stuck by me.

Would you benefit from an online support group? 

I may find a group that’s right for me again one day, but next time I’ll do my research first. Here’s a list created from personal experience and research. (See below)

Pros

  1. Gaining self-worth or a sense of purpose
  2. Feeling less lonely or isolated, especially for those who may not have access to face-to-face support groups
  3. Getting support in times of stress, depression or anxiety
  4. Being anonymous allows you to vent or discuss feelings openly and honestly
  5. Staying motivated to manage your physical illness or mental health
  6. Gaining control of or feeling hopeful for the future
  7. Raising awareness of invisible illnesses, disabilities or a specific disease
  8. Getting practical feedback about treatment options, benefits or worker’s rights
  9. Feeling empowered by supporting others or working successfully in a team
  10. Accessible when it suits you, even in your PJs, leading to more participation

Cons

  1. Peer to peer groups are probably be run by unqualified members, who are also unwell – vulnerable people supporting other vulnerable people
  2. Increased negativity due to constantly discussing aspects of your illness or disability
  3. Interference on posts with unhelpful comments or incorrect information
  4. Written communication means that inference or tone can be easily misjudged
  5. Participation online may compound isolation from other friends or family
  6. A lack of control over medical advice, quality of information or criticism of health care services/professionals
  7. Reinforcement of negative emotions and negative remarks to other participants
  8. Disruptive group members may dominate the conversation, cause tension or create interpersonal conflicts
  9. Comparisons of whose condition or experience is worse
  10. Possible use the environment to prey on vulnerable members

Design

What is needed to create a good social support network? 

  • Those running the group must be very clear about what support is available and when.
  • Clear rules covering: disruptive behaviour, sharing medical advice and discussing medical professionals.
  • Conflict needs to be handled professionally.
  • A positive environment, that’s nurtured and monitored so that people feel listened to and that other members will show empathy and be supportive.

Do online support groups work? 

The disadvantages of online support groups are discussed by authors and healthcare professionals. Concerns about the quality of information, criticism of health care services/professionals and reinforcement of negative behaviours are certainly valid. However, this study. of online groups for those with physical illnesses, found that concerns about the risks of online support groups are not always justified.

In my opinion, there is increased risk in online peer-to-peer support groups, as those facilitating the group may be vulnerable due to their own physical or mental illness. This may make it more challenging to nurture a positive and safe space.

When looking for online support, it’s recommended that you ask questions before joining a group to find the right fit for you. If you don’t feel comfortable or safe in a group, put your own health first and take action. Online support groups aren’t for everyone, but remember that they aren’t the only option.

Finding my own way

I have my own network of friends online. We give mutual support through physical and mental illness. I also work 1:1 with a trained professional, via online video conferencing, to support my mental health. I wouldn’t have all of this support, without having been in the groups. I also have an amazing network of friends and family, who have shown that they’ll stick by me through thick and thin. I know how lucky I am to have that and I’m the happiest I’ve been in 4 years of chronic illness. I don’t know about the future, but for now; I’m done with online support groups.

Chronic Illness BloggersReferences

Pain Doctor-Finding help online

Mayo Clinic guide to support groups 

Mental Health America-Finding online support groups

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The Maybridge Estate

The first people “mr and mrs Stilwell’ were my grandparents and my Dad was the baby at 3 months old! Love this blog!

Worthing, through the 1920s-1930s, had been rebuilt from a small, rather sleepy seaside town into an edgy, modern town. Today, in the early years of the 21st century, the town’s most iconic buildings are still from that period; the Art Deco frontage of the Connaught, the massive streamlined building on Stoke Abbot Road and the stylish civic Assembly Hall opposite, the interior flourishes of the monumental Town Hall, the Moderne pier cutting it’s way to sea and the landmark buildings along the seafront, from the Rowing Club at Splash Point to the stylish captain’s house at Marine Gardens.

In 1946, everything changed. The Maybridge Estate, built to the west of the town, provided nearly 500 homes for returning servicemen and for the workers at the Inland revenue, being moved out of London into an ex-service hospital nearby. Planned by Charles Cowles-Voysey (something of a social visionary, he also designed Kingsley…

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A poem for all chronic illness warriors ‘It’s okay to rest!’ #chronicillness #chronicblogs

Are you a chronic illness warrior?

Do you fight the pain everyday? Do you even get cross with your body for not doing what you want to! I do, but I’m working hard to remember that it’s okay to rest!

I hope this helps you if you feel guilty for doing nothing. Just listen to your body!

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It’s okay to rest!

My body fights the constant pain
And drains all my energy spares.
My body ransoms my attempts to move
Yet soothes the grief for what was.
My body tricks my brain into a spin
Though wins with time to calm my mind.
My body taunts with glimmers of light
When nights are long and sleep is gone.
My body is learning it’s okay to rest
But tests the deal that I’ve made to heal.
My body and mind still fight the pain,
But gains most when I concede to rest.
Now I believe that it’s okay to rest!

Copyright Laura McKee 2018

Chronic Illness Bloggers 

Life as a bed-bound workaholic. #chronicillness

Stopping work due to ill health usually leads to a feeling of loss and purpose. For workaholics, giving up a career just adds to the grief of a previous life. If you’re also mostly bed bound; it’s almost impossible to give in.

On being a workaholic 

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I’d wanted to teach from age 5 and I loved it from the moment I stepped in the classroom. I was a workaholic, working nights and weekends, to try to make a difference.

Teaching is so much more than a job, you never stop thinking about some aspect and with you take on many roles.

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When I had my boys I worked part time, but was still working a 40-50 hour week. A workaholic is compelled to keep working and creates a life that’s out of balance. Read more here. Being a mum always came first, but I always felt the need to be doing something. Just a workaholic in another role; feeling like I couldn’t do either role justice. In hindsight; I know I gave both roles everything I could.

Becoming Bed-Bound

If you’ve read my story, you’ll know I had to stop teaching when I became ill. When we came to the mutual decision that I should be medically dismissed, I knew it was best for everyone. However, I struggled with the reality of having to bow out, from my bed, with no farewell, after the 14+ years I’d dedicated to my profession. I still wish I’d done more, but I’m proud of all that I achieved and that I had some influence on so many little lives.

We realised that becoming bedbound had a silver lining. I could now just enjoy the most important job I had and put everything I could into motherhood, without throwing life out of balance! We love that I’m more present and less stressed. Now I love hearing the key in the lock, anticipating my boys coming to see me.

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However, as a workaholic, even a bed-bound one with brain disease, I still needed to be DOING something. So I began making jewellery and soon discovered Conscious Crafties Marketplace The site was set up to give those with chronic illness, disabilites or their carers a sense of purpose again. You’ll find this statement on the site’s homepage.

‘A community of talented artists and crafters who are living a purposeful life by changing the way humanity perceives those living with Chronic Illness, Disabilities or Carers of those affected’

This amazing community has helped me connect with others who understand what we’re going through. I’ve made many true friends and am living a purposeful life. But, I’m a busy minded person and so volunteered to help Karen (the founder) run the site. Everyone tells me I do too much, but I thrive on helping others and love organising things. But I was juggling all of this and more, from bed, and it was beginning to impact on our family time, so something had to change!

Breaking Free

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Making the best of family time

I needed to break some of the bad habits I’ve developed over years of being a workaholic. But I have the best motivation; to bring balance in to my life. I’ve looked at my behaviour patterns and found I was spending far too much time on social media. I’m now slowly re-training my brain to know that it’s okay to rest!

Josie from Worry Free told me that ‘My JOB is to heal. By giving me a role/job of healing and rest, I have that all important role we crave and am now a resting workaholic! Such a simple idea, but so effective; I’m already breaking bad habits,  doing less and achieving more. Ultimately I’ll have more quality time to spend with my family.

 

Chronic Illness Bloggers

#IIH life in the slow lane!

I’m finally posting an update after my 2nd surgery, nearly a year on, so thanks for your patience while I’ve been in the slow lane! I’ve been on a rollercoaster journey with my IIH (Idiopathic Intracranial Hypertension) over the last year.

WHAT’S BEEN HAPPENING?

In June 2017 I had my second skull surgery and 4 weeks ago I had the same operation on the left. They have removed the C1 vertebrae mass on both sides to make space for the jugular vein that was squashed; preventing blood draining from my brain. I use a plumbing analogy to explain this. If you think of the veins as the pipes, you’d remove the blockage at the top first, because if you remove the top blockage beforehand, you’ll just create a bigger blockage below. This is how my surgeons work, slowly and methodically to ensure that all surgeries are exacting.

The surgeries have been difficult for us all. I’m not scared of surgery, but I worry about how my boys and Joel will handle the added pressure. This time, I’ve asked for help from the wonderful Josie Brocksom of Worry Free who gave me strategies to help me deal with my concerns and trust that Joel would be able to cope with the additional pressure, which of course he has. She has also taught me that it’s ok to rest, so this time I have let myself stay in the slow lane so that I can heal!

I’m lucky enough to be covered by private healthcare. One of the biggest perks is having a private room of course, but I love the food too! Yes, really! I’ve been waiting to show you this photo of the yummy lunch I had the day after my surgery last year. Just look how good that was! I just had to order the same this year too!

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Before I continue, I wanted to address a question Joel and I get asked so often:

HOW DO WE KEEP SO POSITIVE?

As with everything in life, we have some choice. Of course, I have no control over how the IIH affects me, apart from my pain relief. However, I do have control over how I manage to stop my high pain levels, from affecting my mood. Myself, Joel and my boys also choose how much we let IIH affect our own lives and time together.

I’ve been able to share over 20 years with my best friend. Joel is affected by IIH just as much as I am. However, amongst experiencing all my of pain, constant worry and looking after us; he works incredibly hard in a tough job. He is also an advocate for carers through the Family Matters team across the whole of Lloyds Banking Group! He keeps me going and picks me up when I fall. He makes me laugh til it hurts and ensures that the children have emotional, physical and comical needs met. I couldn’t ask for anything more and I know I’m lucky to have him by my side at every step.

I can’t say all is peachy, as of course it’s not: I still cry, get frustrated and have meltdowns-I’m only human! Joel and the boys keep me fighting this disease and get on every day. We’re open with each other and share our experiences with others who just get it.. We also have the opportunity to raise awareness of how to stay positive when chronic illness affects a family, and we are both very proud to do this!

THE SURGERY

When the wizard has (my ENT specialist surgeon) removed part of the C1 vertebrae, he gets as close to the nerve as possible; without it being dangerous. This is only done for the few like me, by the team in Cambridge. They’ve developed procedures to reduce unwanted side effects and they explain everything so well. They are now developing other studies and sharing their findings with the medical world.

I was only in overnight both times and have a drain in which helps to limit the chance of having unwanted side effects. These are shoulder weakness, trouble swallowing and a hoarse voice. It’s too gross to show, but here are my post op selfies!

2016-feeling warm and puffy!

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2017-Looking amazing on oxygen all night due to low SATs

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The operations have both been successful. The scans show that the jugular vein is no longer under pressure and the blood can flow freely through the veins there now.

NEXT STEPS:

During my pre-op testing (ct venoplasty/venogram), my neuro radiologist found arachnoid granulations pushing on my stent and narrowing the flow of blood. These are normal lesions found in the venous channels that allow the CSF to flow into the venous channels. These are rarely found in the transverse sinus, however, and unfortunately they are growing around and through the stent in the left side. This explains why I started to go down hill again a few months after last year’s surgery, so I will need a procedure to stretch the stent and push the granulation back.

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Unfortunately, I also need a stent in the right transverse sinus, so I have been referred back to the neuro radiologist following our check up in Cambridge yesterday. It’s good to know that we are moving forward surgically and it means that I can focus on my goal of reducing the morphine even more. The transverse sinus is part of the venous system in the brain and allows the blood to drain from the back of the head. If you’d like to know more, I have a reference to this medical article here.

Last year’s surgery was such a success that I was able to travel abroad, have a 40th birthday party and generally spend more time with my family. This is my priority and as I was able to reduce the dose of morphine I take in the morning a few months ago, I now need to get back on track with that as I come out of the other side.

I’ve big plans with my family this year and although I always suffer, it’s so important that I try and enjoy my life as much as I can. I don’t know how much I will recover from this disease. This means making the most of life NOW! This is why we decided to visit the Imperial war museum yesterday on our trip to Cambridge. This was only my second trip out of my bedroom since surgery. Although I only managed half the visit in the museum and the other half lying down in the car, I’m amazed that I was able to do tbis and even though I’m exhausted today, I’m still finishing this blog!

As it’s only a month post op, I can’t say much has changed; although I haven’t passed out since, which was happening weekly beforehand. But, I feel like I’m turning the corner now and have every faith that symptoms will continue inproving quickly, as soon. I had such a positive response from last year’s surgery,  I feel positive that I will continue making baby steps towards achieve my goal to reduce my meds and increase time with my loved ones. So, I’m still in the slow lane, but I’m happy here for now whilst I carry out my job of healing, and continuing to rest!

Please check out my social media accounts and stores if you’re inspired:

http://www.facebook.com/Tearsofstrength

http://www.twitter.com/happyiihgirl

http://www.instagram.com/paprikajewellery2

http://www.pinterest.co.uk/PaprikaJeweller

SHOPS:

http://www.etsy.com/uk/shop/ThePaprikaJewellery

http://www.consciouscrafties.com/Crafties/paprika-jewellery-accessories

 

Chronic Illness Bloggers

Self care: Are chronic illness warriors good at looking after themselves?

Are you a chronic illness warrior?

By that, I mean, are you the kind of person who:

  • Is an advocate for or is a fundraiser for a charity supporting your illness
  • Works or runs a business, even if it makes your symptoms worse
  • Has lists of things to do or achieve because you want everything done now
  • Is there for your friends who need support even on your worst days
  • Struggles to accept help-even not taking a medicine that helps your symptoms
  • Says ‘I’m fine’ when friends/family ask how you are, even when you feel awful
  • Has to be busy doing things that aren’t important; rather than prioritising
  • Doesn’t plan in any time to rest or even just sit still; let alone meditate

If you answered yes to some of these then read on:

We certainly need advocates for all chronic illnesses and doing most of these things likely makes you an inspiration to others. However, where do you come in your list of priorities? Your choice to raise awareness for others with chronic illnesses is awesome, but if you don’t make yourself a priority; you’re no good to anyone else.

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The bullet points above are the opposite behaviours to those in this diagram. I could have added many more examples, but I based it mostly on my own behaviours. In this blog post I’ll discuss my experiences, my understanding of ‘self care’ and the steps I’ve taken to try and put myself first.

Until last year I don’t think I’d really heard the term ‘self care’, now it’s fairly prevalent. I didn’t practice self care and I admit that I still revert to old behaviours occasionally. When I fell ill, my self worth plummeted and when I had to leave my teaching career; I fully lost any sense of purpose. I love helping others and raising awareness. Once I even raised money for 2 charities in the same month!

After 3 years of everyone saying that I was putting too much pressure on myself; I began to realise my self care was pretty nonexistent. Considering the severity of my symptoms; I knew this wasnt good. I was making my symptoms worse and my mental health was suffering too. You can read about a day in my life here.

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About a year ago, I joined a closed Facebook group at the recommendation of a friend. This was for women who ran their own businesses; started by an amazing lady who is a coach and hypnotherapist. This is Josie’s website. She sets a theme most weeks and then does a live session discussing aspects of that theme, such as; what we do to have fun or about asking for support.

She ran a course for us to choose one thing we wanted to achieve in 2017. I started, thinking this would be about my jewellery business. However, I soon realised that everything seemed to be pointing towards choosing ‘being kind to myself’. This was the first time I truly contemplated the cost of my actions. I suddenly saw that by being kind to others, pushing myself with my business and trying to prove I was still independent; was not only bad for my health, but was affecting my self worth.

So, I set my 2017 goal as ‘being kind to myself’, which you can read about here. I underpinned this with the steps I needed to take to reach this goal and even thought about who I needed to help me achieve this. I set up a Pinterest board with related quotes and some feedback from customers. I don’t set New Year’s resolutions, but having this structured goal, was much easier for me to follow. I wrote my goals out and kept the image in my favourites on my iPhone, so I could refer to it often.

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  • I started a diary and only wrote 2 activities a day, so that if a friend was visiting, I only wrote one activity for my business/blog/supporting others.
  • It took a while to add rest times as standard, as I already meditated. I lost my way a few months ago though, so now I write in time for meditation every day.
  • I let my friends support me and a rota of lovelies now put up the positives post in our Conscious Crafties (CC) support group. It’s one thing less on my to do list, but I still write my positives on it, so keep the positive interaction with others,
  • I’ve continued to build on my Pinterest board throughout the year although I needed a bit of a boost about a month ago, but am now back on track.
  • The step I’ve found most difficult is resting on bad days, let alone making this the time to focus on my achievements and ways to continue my self care,

About a month ago, I realised I needed a boost to get me back on track for my goal. I still benefit massively from Josie’s group but I joined in with a group I’d been added to; run by the Anne-Louise. You can find out more about her here. She’d just started a 26 day challenge about improving self worth. This was exactly what I needed, at exactly the right time. I even received a free support call a few weeks ago. This call and the 26 day challenge has kickstarted me back into thinking about self care.

I have now added these elements to my self care regime:

  • setting aside regular time to engage in positive interactions with my husband Joel, my boys and my friends.
  • starting a journal to record the gems of knowledge from the amazing ladies who run these groups, who are generous enough to share their message.
  • writing a ‘self care’ to do list as I process what has been said.
  • writing at least 3 positives each day in my journal, so that I can reflect on my day and revisit my achievements and good feelings on those bad health days.
  • using affirmations to increase my self worth. These are short, positive, statements that you repeat out loud to yourself or write down repeatedly. For example: ‘I’ve got this’ or ‘I am beautiful’. This is still quite new to me and at first I could only say them in my head. The aim is to say them in the mirror.
  • doing my physio exercises every day that I can. I’m adding in gentle yoga and Pilates techniques I already know, to improve my core and help me lose weight.

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I haven’t updated you since my last operation, but it has given me some relief from most of my symptoms. I’ve managed to do more and have reduced my oramorph. Sadly, It’s been harder than I hoped to get over the school holidays  (I knew I was doing a lot, but accepted there would be consequences). Frustratingly, I’m now a week in to a chest infection, but instead of waiting it out, I spoke to my GP when I first experienced symptoms; so this work I’ve been doing is sinking in, finally!

The results from my operation give me hope and I’m starting to plan for a future of less pain. I’m considering carefully how to merge Paprika Jewellery & Accessories  and my passion for helping others. I have lots of ideas depending on how my health improves. I still have lots to learn about self care, but I know my priority must be looking after myself, so that I can give the best of myself to those I want to help.

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Are you a chronic illness warrior? If so I’d love to hear your thoughts about this.

Are you able to ask for support?  Can you prioritise self care above all the amazing things you do?  Do you engage in positive interactions with others?

What could you do to address the balance between being a chronic illness warrior and practicing self care?

 
Chronic Illness Bloggers

Dear Fatty

Love this inspirational woman!

The Hippy Geek

(Yes, I know I shamelessly stole the title)

New (academic) year, new challenges. But this year marks a big one and a massive personal challenge for me. If you’re reading my blog, then you’re probably already know about the fun & games I have with Ehlers Danlos Syndrome – TLDR; it’s shit & cramping my style, but this month marks the 1 year anniversary of fracturing my spine and just over a year since my hearing dropped to unworkable levels. Life went on. But without my beloved racing that was an outlet for lots of rage – but now I’m back! Wonkier, in more pain, and with an extensive arse (the image below is my “thinspiration” – a combo of being stationary & evil painkillers has wrecked my weight).

So, with new work challenges I knew that I needed to build in some head space and get back to racing…

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This is a disabled parking bay…

Whilst I’m mending from my op, I thought I’d share this incredibly well written and very important message about parking in disabled badge holder spaces! I will be writing about this myself soon!

The long chain

This is a disabled parking bay. There are four of them at my son’s school. They are close to the school entrance and they are wider than normal bays. Doesn’t it look inviting?

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This is my son Benjamin’s blue badge. I had to apply for it, and pay for it. Many disabled people have to fight for it. It entitles me to park in the disabled bays at my son’s school (and anywhere else) when I have him with me and he will be getting out of the vehicle, or when I will be picking him up and putting him into the vehicle.

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These are four of the cars that were parked in the disabled spaces at my son’s school today. None of them is displaying a blue badge.

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Maybe their drivers aren’t aware that although this isn’t a public road the school still enforces the blue badge scheme? Maybe…

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IIH and skull surgery: part 2 #IIH #brainandspine

Skull Surgery

It sounds much worse than it will be. This is the next step in of my treatment plan. I have Idiopathic Intracranial Hypertension (IIH) and this is my journey,

To prepare for surgery; I’m resting; well, resting as well as anyone with needtodoitis can! I am on strict instruction to allow my body to be in the best condition possible, for my surgery on Thursday (15th June 2017). I’m also owning up now, to not fully understanding the recommended medical document, at the end of this blog. 👀

Firstly, if you are new to my blog or need a recap please read this post,, written after my first skull operation; a Styloidectomy. (I just re-read it; I’d forgotten some of this-yikes)!! Please be aware that there’s a surgery scar in case you’re squeamish.

Background

In January 2016; I had a Styloidectomy; the removal of the bone behind your ear; called the Styloid Process (red area on the diagram). My right Styloid process was removed by The Wizard; my ear and skull surgeon and one of the magical team I’m under in Cambridge. I have constricted veins in my head, mainly the jugular vein; affecting blood flow from my brain; leading to a build up of pressure in my skull. Following that op, I was able to have a two way conversation again; after two years of complete brain fog. Everyone noticed a difference, but I was still in 24/7 pain and unable to walk unaided. My memory was still poor and I still struggle with words,

img_7354At the time, we thought that the next step was to have a stent placed here. Due to being one of the patients to have these procedures; immediately after the trial group; I have to be prepared for rules changes. I had stent surgery of the left transverse sinus in September 2016, whilst they waited for their paper to be published. This is now available and they are  the first team in the world to use these methods, for this rare brain condition. You can find out more about all of this, in the ABOUT/BIO drop down menu: what is IIH?  

I’m lucky enough to benefit from what they have learnt in the trial. They found that placing a stent in the jugular vein, after removing the Styloid processs; was less effective than expected. But, once a stent is in place it can’t be moved; so patients often had the mastoid process removed, to relieve some of the pressure on the vein.

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Mastoidectomy

This led the team to the conclusion that it would be more effective to perform a mastoidectomy before stenting here. This would make room for the jugular vein to take the stent more precisely and possibly mean that stenting wouldn’t be necessary. I’ve highlighted both the Styloid and Mastoid process, in the diagram above.

I have only found articles about mastoidectomys for other conditions; as both of the surgeries used; aren’t new procedures. What the Cambridge team have done, is to think outside the box and are use tested surgeries in new ways; helping IIH patients with restricted venous outflow. I am referencing one of the clearest (and least scary) articles, to try and explain the procedure; although this is for other conditions.

This procedure is usually performed when a patient has: had infections that have caused hearing loss, tumours or for patients being fitted with a cochlear implant. The mastoid cells and process form part of the temporal bone. A mastoidectomy traditionally removes an area of mastoid cells; which which has a honeycomb structure, due to bone being formed around air pockets. However, the mastoid process is below this area; highlighted in the first diagram. This bone is denser and  connected to the C1 vertebrae, therefore attached to the top of the spine. This video explains the anatomy of the C1 vertebrae. Cervical Spine anatomy

There are many veins, nerves and muscles attached to the C1 vertebrae, which is essentially a pivot; allowing us to extend our neck and nod. The mastoid process is the outer part of the skull; attached to the occipital area and provides attachment for many muscles. Thankfully, I have complete faith in The Wizard and he’s assured me, that if anything; he’s conservative with how much bone he removes. He will drill the bone just enough; to make room for my jugular vein to work more efficiently.

Risks and Further surgery

It’s a similar surgery to the styloiectomy and has the same risks: which aren’t life threatening. There’s a possibility of having a weak shoulder/arm or a hoarse voice  following surgery. Despite the serious nature of the operation; I will be only be kept in overnight; unless there are complications. I will have a drain in overnight; used to   try and prevent side effects. In the future, I may need a stent here; it’s been the plan since the start, after all; but we have to focus on one step at a time. If you wish to know more about the anatomy and a typical mastoidectomy; please read this article

I’m sure I will be back very soon with some amusing anecdotes from our little adventure. Thanks again for stopping by; please don’t hesitate to ask questions. Remember though, that this team are the only team in the world treating patients like myself in this way; so I may not know, or be able to find the answer.

 

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