Tracey's Story

I was diagnosed with IIH on 3 November 1998 whilst living in Cyprus. I had had a hormonal implant put in my tummy just 3 weeks prior to my diagnosis and, within days, my headaches began and progressively got worse. I was the first person to be diagnosed with IIH on the island in 25 years. Sadly, there was very little information about IIH at the time which only made things harder for me to understand.

I was immediately started on Furosemide and had a lumbar puncture which gave both the doctors and me a warm shower due to the pressure being so high! That said, the relief was amazing but little did I know that it would not last long. I then started Diamox which helped for a number of years. I needed 6 monthly lumbar punctures and regular wee checks. Unfortunately, however, I started getting kidney stones - I had 4 in just 6 months. I was then taken off Diamox and prescribed Topamax but, within 2 months, this produced another large kidney stone which had to be surgically removed. Understandably, I was told to stop taking Topamax. I then lasted 6 months with no medication but, at a routine eye check, I was told I had papilledema in both eyes, resulting in a visit to a Neuro Ophthalmologist and a subsequent referral to a Neurosurgeon who advised me to have a VP shunt.

On 24 October 1999, I had my first of many VP shunts. Things were good for a while but I started to get severe abdominal pain. On the advice of my Neurosurgeon, I had the tubing shortened in my tummy but this made no difference and, one week after surgery, I had CSF leaking out of the wound. I was admitted to hospital as an emergency and had surgery 6 hours later, having a completely new shunt put in due to infection. In turn, the abdominal pain started again. My Neurosurgeon confirmed that, although relatively rare, my body was rejecting the CSF that was being drained into my peritoneal and he therefore tied the shunt off, only to untie it a week later due to my crazily high pressure. I had a lumbar drain put in and the ridiculously large amount of CSF produced was incredible. My Neurosurgeon then decided to convert my VP shunt to a VA shunt and, two days later, I was back in theatre having my shunt tubing put into the atrium of my heart. I woke up to find not only the surgical wound on my neck but also a large burn on the left side of my scalp. Something had gone terribly wrong in theatre and I was in agony due to the negligence of a theatre technician.

I was allowed home 2 weeks later and it soon became clear that my heart was also rejecting the CSF that was being drained. I found my resting heart rate was over 180 bpm. My Neurosurgeon immediately admitted me and I remained in hospital for 6 weeks while they tried to establish what was going on. Again, my body was rejecting the CSF. They tied off the tubing and inserted a lumbar drain which itself became infected. Having noticed that the CSF which was draining into the bag was getting cloudy, I told my nurse who immediately took some bloods; this resulted in me receiving the devastating news that I had meningitis.

I was taken to theatre immediately and had the shunts and drain removed and an EVD put in, I spent the following 3 weeks in ICU until the meningitis had gone, at which point I had another VP shunt put in. Still suffering badly with my vision and abdominal pain, my Neurosurgeon decided that I needed to have sub-temporal decompression to give my brain more room. This was done on 30 December 1999 – not exactly the best way to see the New Year in, laying in ICU!

Despite having a VP shunt and left side decompression, my pressure still remained extremely high and my abdominal pain continued. Due to my failing vision, the Neuro ophthalmologist decided that I should have sub-temporal decompression on the right side as well. Having had up to 30 operations to this point, I really hoped this would be my last. The surgery went well but my recovery was a different story. Whilst in recovery after the surgery, I stopped breathing and was kept in critical care for 10 days to allow my brain to rest. This was the worst I had ever been. My Neurosurgeon told my husband and daughter that he had no idea why I had reacted in such a bad way and he did not know when/if I would wake up. Fortunately, I did wake up, with the smell of my daughter's perfume bringing me round. It was a very scary time for all of us. I now had bilateral sub-temporal decompression and a VP shunt and still my pressure was high.

I have since had to have the shunt removed due to my body’s dislike of CSF. There really is nothing left to try. I am not healthy enough to go through any more brain operations due to the brain damage that has been caused by the large number of operations that I have had. I have also very recently been diagnosed with Central Sleep Apnoea which is when your brain does not send signals to make you breathe at night. It makes you hold your breath until the oxygen level is so low it wakes you up. My sleep study showed this happened 33 times in just one hour of sleep. I have no idea how this is going to be treated but is certainly a serious problem as the intracranial pressure is forced even higher when the apnoea occurs.

So, after 17 years of suffering with IIH and 31 brain surgeries, I am no better off symptom wise. Was it all worth it?

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