This week I have the lovely Rachel from Rachel in Real Life sharing her story of her First Brain Surgery. I can’t imagine many of us have ever experienced such a thing, but Rachel is one of the strongest and inspirational people I know. I can’t wait to meet her at Britmums 2015! You can follow Rachel on Twitter or give her page a ‘Like’ on Facebook. Over to Rachel…
When I first put my name down to write a post for Steph, it was a good few months ago, then I promptly forgot about it. I was reminded, jotted it in my diary but I couldn’t think of anything to write about. It is now the night before my allotted slot and after a crazy, mental day, I have the inspiration. I just hope it comes across well!
This morning I received a phone call to say that I am to have major brain surgery, in less than a week’s time. I have known for 18 months that I should have this surgery but in all honesty, I had given up hope of ever actually having it. The thing is, this will not be my first brain surgery, it will be my second and perhaps not my last either.
I have a few neurological conditions, all of which it is thought have laid dormant since birth but my pregnancy is thought to have set a trigger off, bringing symptoms which I’d always had on a relatively minor yet regular scale to the forefront. I have Chiari Malformation, Syringomellia and Hydrocephalus.
Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation. Symptoms include dizziness, insomnia, depression, hearing loss, migraines, headaches made worse by coughing, sneezing or straining and balance issues. I have each of these and have done ever since my early teens.
The spinal cord is usually solid and syringomyelia is a disorder in which a cyst or cavity forms in the spinal cord. The fluid from which these cysts or cavities are formed is similar to CSF. Over time, syringomyelia can lead to paralysis. Otherwise it can cause pain, weakness and stiffness in the neck, back and shoulders. A a person with syringomyelia can also lose the ability to feel extremities of hot and cold, particularly in the hands and feet.
Hydrocephalus used to be called ‘water on the brain’ so I will leave it up to your imagine to work out what it is. The surgery I am due to have next week is to hopefully prevent further neurological damage caused by the Chiari Malformation and Syringomyelia although it is unlikely to be a cure.
I have already had surgery for hydrocephalus. When most people think of hydrocephalus surgery, they think of a shunt system. I had something called endoscopic third ventriculostomy (ETV). For this, a small a small perforation was made in the thinned floor of the third ventricle, allowing movement of cerebrospinal fluid (CSF) out of the blocked ventricular system and into the interpenducular cistern (a normal CSF space). A device was also placed in my skull in order to allow follow up checks to check on the pressure, that the surgery ‘did it’s job’ so to speak. With a shunt system there is a lot of trial and error involved and an ETV is now the preferred option where possible.
I had the ETV less than a week before Christmas 2013. I remember getting the letter with the date around six weeks before, worrying that there was a chance that I would be in hospital over Christmas and I really couldn’t imagine anything worse. As it turned out I needn’t have worried. My surgery was a huge success and one of the nurses told me she had never seen someone up and about so soon after that particular operation. While I was told I would be in hospital for 3-5 nights (the fifth night would have been Christmas Eve), I only ended up being in for two nights.
I honestly couldn’t believe how much ‘lighter’ I felt after my surgery. I was so used to feeling pressure headaches, I had literally always had a headache from the minute I woke up to the minute I was asleep for as long as I could remember. At times these headaches were just a minor nuisance, almost like a background noise I had got used to but always present. Other times I had horrific migraines that could leave me in bed for several days at a time. Since the operation I have only had one bad migraine and my headaches are definitely less frequent and certainly not a daily occurrence.
People find it strange that I didn’t feel nervous or apprehensive before my first surgery and I don’t feel nervous this time around either. Perhaps I just have the utmost faith in my neurosurgeon, I know that I am in the best possible hands as the hospital is considered a leading one in the field of neurosurgery.
There is no cure for any of the conditions I have, it is just a matter of trying to manage the symptoms and prevent further irreparable neurological damage from occurring. I will most likely be on pain killers for the rest of my life and I may well need even more brain surgery as I am still fairly young. There is one good thing though. I get to tell people that my brain is too big for my head, which is always amusing.
Wow. Sending lots of love to Rachel!! What a great post. If you would like to share a My First… story, please get in touch using the form here.