Click the link below to read a post by our fellow warrior, Laura, about the issues that arise with online support groups.
I am new to this team, but wanted to share this post and say that I won’t be with you for a while whilst I recover. If you haven’t already read my introduction, I would recommend doing so, before reading this post as my story is a complex one. This is the next step in of my treatment plan. I have Idiopathic Intracranial Hypertension (IIH) and I am being treated for it, using new techniques. I am documenting my treatment journey as well as my thoughts and feelings. I hope that you find this of interest; it is quite technical again; I’m afraid. I promise to write a more light hearted post when I’m back!
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).
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.
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,
At 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 Conditions section: Idiopathic Intracranial Hypertension.
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.
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. Link at the bottom of the post.
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.
Hi, I’m a Mum of 2 boys and have been happily married to my best friend, Joel, since 2003, whom I met at university whilst training to be a primary school teacher in 1997. I loved my job and had worked my way up to senior leadership before falling ill in January 2014. I loved books, traveling, Pilates, yoga, swimming and occasionally writing poetry. I also took silversmithing classes and unlocked my creative side. I can no longer do most of these things, but I do love making simpler jewellery (without machines) and I now write poetry often, even selling some of my work. This is the story of how my life changed from a full, happy and exciting one, into a one of fighting to be heard and to do a little, but learning how loved I am by the people that matter and learning how to be resilient, strong and determined. I’m afraid it’s a long story, so grab a cuppa and get to know me. Find reassurance, hope or even pick up some practical advice. This is a journey of hope, despite having to wait patiently as each new challenge becomes a new chapter. My aim is to help just one person with my story, if I achieve that, then I have done what is set out to do.
My story starts In 2009, the day after I had my first filling at the age of 32; I was struck with severe, constant facial pain. I was told it was a tooth infection, despite no evidence on X-ray. Then told it was sinusitis. I was still in intense pain, though, despite weeks of antibiotics. I continued to teach until I woke one morning and couldn’t lift my head off of the pillow. This time I was diagnosed with trigeminal neuralgia. A few weeks later I was back teaching. I continued to suffer daily facial pain and headaches. Months went until I finally saw a consultant and was told that this was actually all a migraine! Confused yet? I was! I saw a neurologist nearly a year after that day at the dentist; migraine was the final diagnosis for all the pain, despite having no tests. I have been always been well supported by my family doctor (GP) and with preventative medication and complementary therapies, I got used to living with low-level daily pain and managed to enjoy life again.
I started teaching in a lovely little school in September 2012. The school had a wonderful community and with small class sizes; it the least stressful and happiest job I’d had. However, my migraines increased in frequency and I had a week long attack in January 2013. Once the increased dose of medication kicked in and everything was under control again; I realised I wanted more job responsibility. I got a promotion in another lovely school in September 2013. However, I had walked, unknowingly, into a stressful situation which nobody had tackled. Sadly, my migraines increased and nearly every weekend was ruined. It was so bad by Christmas that I was referred back to the neurology team for new advice.
On Sunday 19th January 2014, my life changed. I had a severe migrainous attack, but after a few days, I pushed myself back to work. But, when I arrived at school, everything was spinning. I knew I wasn’t well enough to teach and was sent home.
I saw a new neurologist as an urgent case and he was so helpful; he was the first specialist who took me seriously. After 5 years of pain and suffering, he was the only doctor to order an MRI, but he diagnosed me with chronic migraines. I tried different diets, every preventative used for a migraine, relief medications and many alternative therapies. Each time I tried a new preventative, I had to titrate (adjust the balance of drug dosage) down from one, before starting another; so everything took ages! The neurology nurse was unhelpful and unpleasant and the neurologist always succeeded in making me feel like it was ALL IN MY HEAD! I was frustrated and exhausted from the lack of support. So, I became a migraine warrior and started raising awareness, however, I still felt there was more to this; so persevered with trying to find answers.
In late February 2014, I was diagnosed with subjective pulsatile tinnitus. I knew instantly that this was the key to finding the answers. I found out all I could, to try and fit the pieces together. I found a specialist in Cambridge who was great. He took a focused medical history and palpated my neck. He thought I had IIH or Idiopathic Intracranial Hypertension. My neurologist accused me of being deceitful by getting this opinion and he refused to continue to treat me!
When I saw the headache specialist, she took a detailed history going back to childhood. She felt I’d been having migraines since puberty, which was a revelation. It explained why I’d had so much time off school with, what was then diagnosed as, post viral syndrome and regular sinusitis. When I was late teens, the late nights, alcohol and poor eating habits, affected my blood sugar levels and I could become aggressive. It also accounted for the horrific symptoms I had after eating anything containing Monosodium Glutamate/MSG. She also wouldn’t treat me if I saw the Cambridge team.
So, I had chosen my team and was happy to now be under the care of a team, who worked across departments, to help those who were like me; left in Nowhere land. After studying the thorough scan, they found that I had stenosis (abnormal narrowing) of the blood vessels inside my skull. The bones in my skull were constricting the veins so I had restricted venous outflow. In simple terms, it means that the blood could get in, but not drain out: watch this video. This increases the cerebrospinal-spinal fluid (CSF) in my brain, causing it to feel like a pressure cooker inside and a vice grip outside the skull. I felt reassured that, despite a long, scary treatment journey, I was on the right path. I have a local neurologist to treat me now, however, she doesn’t agree with the Cambridge team’s methods; which even they admit, are controversial.
One day in late September 2014, I passed out for no apparent reason. My boys were with me and remained calm and sensible. The next morning, however, I still felt awful. I was shaking, nauseous and was in a dizzy, marshmallow like world. I could barely move. The next day, I couldn’t stand on my own and sobbed in agony all day; the pain was like nothing I’d experienced. A paramedic came out and found that my blood pressure dropped on standing, but she couldn’t help me. I was writhing in pain that was much worse than labour (and I’ve had a 10lb 9oz baby naturally)! We went to A&E in desperation, but It’s almost impossible to get oramorph for invisible pain. After 2 hours, the Dr did eventually give in. The pain remained horrendous, even with oramorph and the cocktail of painkillers prescribed by my GP. Joel managed to get me admitted to Cambridge on the Friday, I had a lumbar puncture and more tests. I was relieved from all my symptoms after a few days, despite having a borderline CSF reading. I was officially diagnosed with IIH in October 2014.
Life with chronic illness
My mobility is very poor; I cannot walk unaided, as I stumble, fall and even pass out. I have walkers and a stairlift to get around the house. On the rare occasions I get out of the house, I use a wheelchairI and stick. I am often dizzy, feeling like I live in a marshmallow world. I use ear plugs and sunglasses for sound and light sensitivities. I live in my bedroom, with the black-out blinds down 90% of the time. In regards to the teaching career I’d worked so hard for; we all hoped that surgery would allow me to recover enough to return. Sadly, but inevitably, I was amicably dismissed in April 2017. I was told that I would always have a job, if I do recover enough to return. I couldn’t have asked for better support from an employer.
My husband is my main carer with my 2 boys, now 11 and 13, being young carers. I also have 2 hours care each weekday to help with my care during the day, as Joel has a busy full time job. The Carers come every lunchtime to do basic care; such as ensuring I eat, and jobs I would normally have done, such as the laundry and preparing meals. Having Carers has helped me not to feel so guilty about what I can’t do and I’m now much better at saving my energy for my family and close friends. It takes me days to get over a trip out or from having visitors, but I’m determined to live life to the fullest that I possibly can. We’re still trying to process our new normal and it can still be upsetting, especially when I’ve been stuck in bed for weeks. I can no longer do most of my hobbies, but I do find relaxation and distraction in making jewellery and accessories. I have turned this into a small business, which gives me a sense of purpose, called Paprika Jewellery & Accessories.
Above is a link to my Conscious Crafties shop, which was set up, to help those with disabilities, chronic illness and their Carers, find a purpose. As many of us with chronic illness do, I have found out who my real friends are and mourned the loss of others, who decided they were done with me. It is sad to think that people who have been part of your major life events, can just drop you because you cancel on them. However, I have met many, new and wonderful friends through support groups and within the Conscious Crafties community. Conscious Crafties website
Medication and co-morbid conditions
As well as IIH and chronic migraine, I have also been diagnosed with eczema, anaemia, depression and anxiety, Vitamin D deficiency and hypothyroidism; which are currently controlled. I have recently been diagnosed with neutropenia, which is a low white cell count, where you are prone to infections, particularly of the skin.
My pill box is over-spilling with my medication, which is organised by my Carers each week. I currently take: Naproxen, Morphine tablets, amitriptyline, diazepam, pregabilin (Lyrica), Levothyroxine, Lansaprazole, vitamin D supplement, vitamin supplement with iron and quite regular doses of antibiotics. I also have a rescue kit by my bed and in my handbag. I use oramorph, stronger doses of diazepam when the pain is out of control. I also need to take an anti-emetic, metaclopramide, for nausea and prochlorperazine (stemetil) for vertigo and dizziness.
I also make use of alternative therapies such as; aromatherapy oils, meditation and visualisation and pro-biotics. I also try and have reiki, kinesiology and cranial osteopathy when I can afford to. When I do my (mostly) daily physio, I add a little gentle Pilates techniques when I can. I also use many techniques for mental health.
I had a right sided styloidectomy (where they removed a small part of the skull behind my ear) and a stent in the left transverse sinus. This is explained in the IIH articles in the conditions section. A simple explanation is that I have a stent (small mesh tube to expand the vein) carefully fitted, as it cannot be moved once in, into the left transverse sinus vein. This vein is in my brain and feeds my jugular vein. There is still a blockage below this, so I’m likely to need further skull surgery in the future. In June 2017, I am having a mastoidectomy (drilling out some of the bone in the C1 vertebrae) behind the styloid process (red area on image below) which was removed in 2016. We hope this will be enough to open the vein more fully, but I may need another stent here. I have had small improvements with each surgery, so we live with hope.
Put in the words of my neuroradiologist ‘this is a marathon’. We continue to adjust to the journey we are on; we know that there are no quick fixes and there is no known cure for IIH. We do know that each procedure and operation, moves us a step further to a better quality of life for us all. My amazing surgeons have now had their groundbreaking study published. Please find links in The bio section-What is IIH?