Help Anna get her brain surgery!

My Story:


**Please note: I was interviewed by a press agency who then sold my story to national newspapers and magazines. Even though we agreed on the content, inaccurate headlines have been created. I have never said that doctors reduced my daily migraines to anxiety. This is simply not true. After several medications and investigative tests, the nausea, vertigo and blurred vision I was suffering was CONSIDERED to be a possible result of anxiety. There are also inaccuracies in the timeline of my symptoms. It's upsetting that reporters feel they can change facts to suit their agenda and I very much regret speaking to them. I had only agreed to do it to raise awareness of the condition but have stopped any future press coverage as a result of their need to sensationalise my personal story to put down the good work of medical professionals who have only tried their best to help me**

 

To my dear family, friends, colleagues, fellow disco dancers, red-head comrades, acquaintances and anyone that has taken the time to read this:

 

As many of you will know, my health has been deteriorating quite considerably for a number of years. My problems started almost 9 years ago in my early 20s when I began experiencing chronic daily nausea and dizziness. After trialling several medications and having every test available, no-one could tell me what was making me feel so sick. Years passed with me doing my best to manage this horrible condition and then 2 years ago my symptoms started to get a lot worse.

 

I’d always suffered from migraine since my teenage years, but the attacks were only a handful of times a year and manageable with acute migraine medication. Around 18 months ago my headaches started to increase in regularity and severity and by the end of the summer last year I was struggling with agonising headaches every single day.  On top of this, I was experiencing nausea that wouldn’t respond to any kind of medication.

 

Then the vertigo kicked in. I’d suffered a previous episode in 2015 that had lasted for 4 months, but this time the swaying and blurred vision was so much worse and has never left me. By Christmas I was bed bound with debilitating daily migraines, nausea and vomiting, vertigo, regular loss of sight in my left eye, severe light and sound sensitivity, raging tinnitus in my ears, brain fog, forgetfulness and extreme fatigue.

 

I saw a neurologist early this year who diagnosed chronic migraine, migrainous vertigo and constant tinnitus. I was referred for an MRI scan of my brain as a precaution as we have a family history of brain tumours.  The results showed that I have a very large, 18mm pineal cystic tumour sat on my pineal gland deep in the middle of my brain. Thankfully these types of tumour are benign, but unfortunately large, symptomatic pineal cystic tumours are very rare and are not well understood, with many medical professionals dismissing all possibility that they can cause symptoms. Many would describe them as asymptomatic and an ‘incidental finding’ despite the debilitating symptoms being exactly the same and as severe as those caused by cancerous tumours.

 

Hearing the word tumour, benign or otherwise, made me want to find out more and after researching these types of tumours, I stumbled across an online support group for people who had them and discovered that almost everyone had exactly the same symptoms as I was experiencing. There were literally hundreds of people in the UK alone that were battling daily debilitating headaches, visual disturbances, vertigo, memory issues, tinnitus, nausea, dizziness, seizures, sleep problems and fatigue. It was from the information in this group that I found out that there are only 6 neurosurgeons in the world who currently remove them, and sadly none of them are based in the U.K.

 

Undeterred I set about sending my scans to any medical professional in the UK that I found mentioned tumours of the pineal region. I must have sent emails to at least 20 consultants. A number of them came back to me wanting to help but either they weren’t the right person and would refer me to someone else or they didn’t respond.

 

By this point I had tried 9 different medications for migraine, as well as a 12 week trial of a new kind of treatment, the Vagal Nerve Stimulator device. I’d also paid for private Vestibular Rehabilitation Therapy to address the vertigo but this made my excruciating head pain worse. I’ve seen a nutritionist, tried acupuncture, cranial osteopathy, kinesiology and every vitamin or remedy that I found or was suggested to me that could possibly help alleviate my symptoms but nothing has worked. I am now having between 13-25 consecutive days per month of the most excruciating head pain describable. They are so bad that my partner has wanted to call an ambulance on numerous occasions as he simply hasn’t known what to do. For the rest of the days of the month my head pain is still at a 7-8/10 in severity and nothing I do does anything to take the edge off the pain or any of my other symptoms.

 

I cannot tell you what it feels like to experience that level of pain for an hour, let alone weeks on end with no relief. The last six months of my life have been spent pretty much confined to the four walls of my darkened bedroom. I miss working, I miss socialising and having a purpose. I don’t remember what it feels like to be well. I haven’t worked since December and am worried I will lose my job. Over the past six months I’ve missed so many important life events of loved ones such as my sister’s wedding and countless other opportunities to spend time with my nearest and dearest. Missing out on these has been heart-breaking.

 

I have absolutely no quality of life. At times I have completely lost my mind and have felt like giving up.

 

Feeling pretty desperate, I decided to send my scans to three of the six surgeons in the world that do operate on pineal cystic tumours, between them they have successfully removed over 120. All three have said that the tumour is causing compression inside my head and could very much be the cause of my problems.

 

I got to speak directly to one of the surgeons for over an hour when he called me to discuss my scans and was able to ask lots of questions. He reassured me that I wasn’t crazy and that he believed the cyst was most likely the cause of my problems given its size and the fact that I had tried so many medications and treatments without success. He said that that there will be no relief from medication or any treatment as essentially there is something big in my brain that shouldn’t be there, pressing on things it shouldn’t. He also said my symptoms will only get worse, and I have definitely felt this over the last few months. I have spoken to six people at length who have had their tumours removed and their symptoms have 100% improved. There are several others in the support group who have spent over $100,000 travelling abroad for the surgery, often selling property, cars, jewellery and family heirlooms to do so.

 

Given that I have now tried everything and the NHS are unable to help me, I am hoping to raise £35,000 to cover the cost of surgery in Germany with neurosurgeon Dr Schroeder. The money raised will cover the cost of the surgery, hospital fees, accommodation, flights and anything I may need in the 3-6 month recovery. In the unlikely event there is any left over, I will make sure it gets to a fellow ‘Cyster’ as we call ourselves, or use the money to raise awareness of this rare condition. I am also writing to my local MP to raise the profile. The support group has been a real lifeline for me and I will always be there for anyone who finds themselves with this awful rare condition in the way they have for me.

 

Thank you so, so much from the bottom of my heart to those who donate, many of whom I will have never met and probably never will. You will be giving me my life back and I will never be able to thank you enough for that. I understand money is tight and I often see campaigns such as these wishing I could help so if you’re reading this, please do share this page as for me it’s just as much about raising awareness as it is raising funds. I truly believe that in time, this surgery will be provided by our wonderful NHS in the UK as there are surgeons here who are qualified to do it and a couple are interested, it’s just going to take time to raise awareness and I’m committed to do all I can to make that happen.

 

Lastly, I would like to say a HUGE thank you to everyone who has helped me so far, I would have given up a long time ago if it wasn’t for my incredible partner Peter, my amazing family, my superstar friends, compassionate colleagues and volunteers, fellow ‘Cysters’ (particularly super-cysters Charlotte and Gareth), Jay for the images, Dr Bulpitt, my neurologist as well as the other Drs and Consultants who have done their best to help me get better. Thank you so much for the cards, flowers, gifts, calls and messages, this could have been a very isolating journey but I am extremely lucky to have such unfailing, solid support behind me keeping me afloat. You’re the best, thank you :)

Anna xx