Heidi's ( Founder) IIH Introduction
Hello my name is Heidi and I live in the UK. I was first diagnosed with IIH in 1989 when I was 20, although it actually started when I was 19, and pregnant with my daughter. When I first started with headaches my doctor told me it was due to my hormones, as my body adjusted to my pregnancy. They continued all the way through and after my daughter was born they increased tenfold. I went back to my doctor, who then said it was due to being a new mum, and that they would settle down as I got used to having my baby. Not once did he examine me or look into my eyes. When I began to have trouble standing upright, as the pain in my head was too intense, I noticed that I couldnt see properly, so I went back to my doctor. This time he told me it was migraine and prescribed me migraine medication.
This made no difference, my headaches and vision got worse. Fed up with being fobbed off I went to the optician, who within 5 minutes of looking in the back of my eyes, rushed off and fetched another optician who did the same. I was given a letter and told to go straight to my doctor, which I did. I was then rushed to hospital with my baby to be examined in the eye department. After having a group of doctors looking into my eyes, they then told me I had a brain tumour possible 2. I had all the usual tests and was immediately admitted to hospital. After the scans I was given my first lumbar puncture, the first in a long line and many years. I was put on Co Amiloride and Furosemide, and told it was a rare illness not seen before in the UK, and that it had no name as yet. I was in hospital for several weeks and had regular lumbar punctures, and was told I had been very lucky not to lose my sight.
This then became the cloud and time bomb I lived under for many many years.Scared I would never see my daughter grow or marry because I might not have my sight. I was told my hormones had triggered the illness, and was taken off the pill. At that time my weight was a perfectly healthy 10 stone. For years I lived, just me and my daughter, going from lumbar puncture to lumbar puncture,eye tests and MRI scans etc and medication that turned my hands in to claws and made my feet painful and stiff.
Two years in they told me it was called BIH and put me on Diamox, and said that maybe it would go by the time I hit 25.
At 26, I started to have floaters in my eyes, and the headaches had come back with a vengeance. On having my regular eye tests the optholmologist told me my sight was failing and mentioned fenestration. After telling me what this entailed, he admitted me into hospital and the tests and LPs started again. Later, he told me there was an increased risk of me losing my sight if he did the fenestration. He told me I would have to live with the floaters and that I would never be able to drive.
I was also at this time working in a dental hospital, and eventually met my second husband. I told him all about the BIH, and the worse case scenerio, little knowing that within 2 years of marrying we would encounter it. When I hit 29, The headaches were back and as virulent as ever, and my eyes started to fail. In fear of losing my job, and wanting to not accept that my worst nightmare was happenning, I hid the headaches and frequent time intervals of lost sight, from everyone, and learned to adapt so no one would find out.
Walking to work one day I was walking up some steps when all of a sudden I realised I was putting my foot into oblivion. This caused me to fall and seriously hurt myself. At my regular neurology appointment my doctor asked me why my arm was in a sling so I explained. On testing my eyes he quickly left the room and came back with 4 more doctors. I was rushed for a fields test and then an MRI, and then sent to the ward for a lumbar puncture. My medication was increased, and I had to have a lumbar puncture a day for 3 weeks, and eye tests.
Eventually I was called in to see the Surgeon and I was told I was going blind, and that they had to hurry to stop it.Thats when I had my first LP shunt. I was in hospital a month and looked like a stroke victim. As time went on my mobility was severely impaired by the LP shunt, and I had been left with tunnel vision.
It was hard to adjust and accept that I had gone from and active woman, to one who could barely walk, and in pain 24/7, and had tunnel vision. What made it harder was the reaction to me by my family, friends and colleagues. My husband and daughter were fantastic but even with their strength and support, I sank into my own bubble, and refused to speak to anyone, answer the phone or leave the house.
In order to return to work I was told I needed special equipment and that I was now classed as disabled. A bitter pill to swallow for a woman of only 31. After having a complete breakdown and prescribed Fluoxetine in order to cope, I eventually rose out of the depths of depression I was in. I went back to work and although they tried to make me part time, I battled on and worked full time. However, unable to tolerate being treated like an invalid and leper, I transferred to another hospital, to the one I was actually treated at.
I struggled on with the pains in my back and legs from the LP shunt, and it took a further 2 years before they admitted it was the shunt causing me mobility problems and pain, but only after being admitted to hospital twice after my legs giving way. I was put on medication and steroids, to cope with the pain and to stop my legs from shaking, and given a walking stick. That same year I was registered partially sighted and received my white sticks, another hard pill to swallow. I have no depth perception or peripheral vision, which means I basically have tunnel vision.
In 2004, I was admitted to hospital again as the headaches were back and the pain in my back and legs was worse. I saw a different Surgeon, who for the first time in the 5 years of having the LP shunt, said it was to come out, and that it was probably over draining, he wanted to replace it with a VP shunt. In February 2005, was the start of a further 16 operations that would take me into december 2006. At one point I had 2 shunts, but nothing helped. My back was damaged to the extent my mobility will never be what it was!.
The first VP shunt blocked after 6 weeks, so I was admitted again, and the pressure was so high they couldnt measure it. Three days after having the shunt replaced, there was no change,so he put the LP shunt back into my back, so now I had 2, but on returning home a few weeks later I was back, the end had come out in my stomach and was leaking into my tissue, causing swelling. So in theatre again to sort it, but then a day later it happened again so down to theatre I went again.
Then my stomach began to bloat so I had to have it measure everyday, by now I had had 6 operations, so they thought it was probably because of that. When I next saw my Surgeon, he didnt like how pasty I was and he was aware I couldnt sit or stand for long, or even walk very well. So in I went again to have it removed. However the next day CSF was leaking into my back tissues causing swelling, so they had to aspirate it. Then after sneezing it leaked constantly. So down to theatre I went again, this time to put a pocket in my back near the shunt area and run a shunt into it, rather than my spine so I wouldnt have any pain.
After being so ill, I was being sick and couldnt stand the light, or even move without pain, I was kept on morphine until on a visit my daughter noticed I had a rash and mentioned it to the nurse, which then led to me being diagnosed with meningitis. I recovered from that and was sent home grateful to be alive, as apparently I was at deaths door.
Very quickly my sight started to go, as if someone was covering my eyes with their hands, and the periods of darkness became longer. On informing my Surgeon he told me that I would be back in over xmas, and that this time he would be doing a subtemporal decompression on my right side.
Although scared and unsure I just wanted free of the pain and to keep my sight, so back in I went. It all went very well and the swollen face and black eye were a small discomfort compared to the headaches. So now I had a hole in my head and a VP shunt.
For four months everything was fine, I was finally on the mend .......or was I?
The shunt got infected! It started in my stomach and worked its way up to my head until I couldnt even move my head an neck. I went in to have the shunt taken out. I remember them taking the tube out of my throat after surgery and saying sorry, and the next thing I knew a week had passed and I was attached to lots of machines with a tube up my nose and everywhere there was an orifice.
It turned out that I had 2 infections in my brain and Ventriculitis, and had not come round from the surgery and was rushed into Intensive care. The tube up my nose was a feeding tube. I had been in a coma on a ventilator close to death, my husband had been told I was unlikely to survive.
I woke up naked having a bed bath! Everything seemed so surreal. I was covered in bruises and I had a drain in my head.
I had known nothing of what had happened, or of the fear my family had had all week.
I did survive though, and I was able to recall hearing their voices talking to me while I was in my coma. After intensive care and antibiotics given to me through a pic line I managed to recover in a month.
I managed 4 months of reasonable health and then xmas 2006, I was back in to have a subtemporal decompression on my left side and another VP shunt. This had to be then removed the following March as it got infected again with the same infections. I then had another vp shunt fitted and that has worked incredibly well now for the past four years without problem, and my IIH and vision is stable. In total I had 18 surgeries more or less one after the other for 3 years.
Although this might sound frightening and worrying to you, it doesn't happen to everyone, I just happened to be unfortunate, but I will tell you this, I don't regret any of those surgeries and complications, my surgeon and his team did the very best for me, and made sure that they would do everything they could to make my life a lot better, my vision stable, and to be more mobile again. I will forever be thankful to them and count myself very lucky that they were taking care of me. My optic nerves are now finally pink and healthy and I am monitored once a year.
After many years of wanting to be able to provide the support and advice that I wish I'd had at the beginning of my IIH journey, I was finally able to begin the I Have IIH Foundation in 2007, (although was then known as IIH Kindred Spirits), once my health was stable and due to early retirement from working, I was able to dedicate my time and energy to it.
Since then I've had Kidney Cancer which was in 2010, where I had part of my left kidney removed, and I am still having scans to check it hasn't returned. I think if any one word was to describe me it would be stubborn, because I think that's what has kept me going. I'm not a look back person I'm a look forward. What's behind me has gone and I can't change it, I can only keep moving forward and hope that things get better.
Up to now I think I've faced most of all my worst fears, I was always scared of surgery, I ended up having a total of 24, 20 being neurological for IIH, and going blind, which has nearly happened on three occasions. Cancer, another one I was scared of having and then I had it. I now realise that I am more of a get on with it type of person, yet I was a very shy child and teenager, who liked nothing more to disappear into art, music, literature and old films. I wonder if what shaped me to be the way I am is the IIH, who knows.
This is my experience and I hope it helps.