bih - my story (My Experience of Benign Intercranial Hypertension/Pseudotumor Cerebri)

Member Name: caddi

Product:	My Experience of Benign Intercranial Hypertension/Pseudotumor Cerebri
Date:	25/10/05 (1346 review reads)
Rating:

Advantages: appreciation of normal life.

Disadvantages: having such great disruption to life.

It all started with the headaches for me. Until about 4 months ago I maybe had 2 very mild headaches a year. I'm only 20 and never had anything wrong with my health.

4 months ago I started getting mild headaches when I was tired or stressed. This was weird because I never had that before and I was a bit worried but just thought maybe I was stressed (even though I look back now and I was not anymore stressed at all). After two months of these headaches I had a stomach bug for a few days and with it came a worse headache and extremely mild vision disturbance which I just ignored.

Over the next month the headaches were on and off and varied in severity. They got better for a few days and I thought it was all over... until a horrible, quite severe headache started in the base of my neck. (sound familiar???).

THis got worse and worse over 2 weeks. I saw my GP who prescribed painkillers. We both thought it was something to do with my neck. Some sort of chiropractic or muscle problem and my GP referred me to a physiotherapist. But i never got that far.

THe day before my appointment I awoke with no headache (first time in 2 weeks) but with double vision. I was so relieved to not have a headache and I don't know how but I just thought - double vision?? oh well... it's probably nothing. I went to work for the day.

I was meant to be going on holiday the next day and throughout the day at work I became more worried about the vision and thought I would pop into the optometrist after work because I didn't think I should go on holiday with this problem.

THe optomotrist looked at me straight away and had me there doing tests for an hour and a half! THis is when i realised something was really wrong. She picked up that the optic nerves were swollen and sent me with a letter to the emergency department at my local hospital. There was a 4 hour waiting time but the eye registrar saw me within half an hour. I had a cat scan and a few doctors look at my eyes. I was made an appointment with a neurologist for 8.45am the next morning. The headaches started again that later that night.

At the appointment the neurologist told me I would be admitted to hospital that day and have my first lumbar puncture. It all seemed so fast to me. 24 hours beforehand I had hardly thought anything was wrong. I had my lumbar puncture. The pressure was 59 and taken down to 11. The LP was not fun, but better than I thought it would be. The registrar did it. He had only done 20 but obviously was quite skilled at it. For an hour afterwards my headache and double vision were 'cured', but the double vision returned after that hour. I had an MRI straight afterwards and had no side effects from the LP.

After a couple of days the scans came back normal. So no brain tumour (good news). I was diagnosed at this point with Benign Intercranial Hypertension and put on a diuretic. The doctors could not tell me why I got this. Especially so aggressively. I am not obese, though I am slightly overweight but had gained 10 kilos over the past year. There were a few meningitis cells which they think might have kickstarted the problem.

What followed was 2 weeks of being in and out of hospital and five lumbar punctures. THe pressure got as high as 82. Each LP was different. One began hurting because it took so long to drain the excess fluid that the local wore off. Another hurt briefly because the doctor hit a nerve. Generally the procedure was ok. THe after effects were also varied. Sometimes I would have a low-pressure headache, other times I would vomit and feel nauseos. All in all, not a fun experience but I liked and trusted the doctor doing them.

After the lumbar punctures were seen to be ineffective for me and my eyesight deteriorated the possibility of a shunt was discussed. A neurosurgeon would put a plastic tubing from the bottom of my spine into my stomach to drain the excess fluid. Pressures of 82 are considered very high.

Around this time more results came from the MRI. They thought there was a narrowing of some of the veins around my brain and were not sure if this could be causing all the problems or if it was just another symptom. So I had to have a venogram (like angiogram but in the brain). This was pretty awful. I was fully awake. They did one venogram and then I had to have my sixth lumbar puncture, followed by another venogram.

THe results were inconclusive. My neurologist tells me there is still debate about it. At this point my neurologist told me she thought shunting was really the only option when the lumbar punctures had obviously not help lower the pressure.

So, I was transferred to another hospital and had the operation. There was a lot of risks of infection and the shunt is likely to get blocked (but no-one can say when). BUt it has been two weeks since the operation. At first I had some low pressure headaches which have settled down, and my vision has returned to a passable level.

Everything seems to be going well. I went to the opthamologist today again and he says my eyes should continue to improve but it could take months for the swelling to go down completely.

Although I now have to live with the problems I might experience due to a permanant shunt, I no longer have to live with painful headaches and double vision. It has been a terrrible couple of months but each day I continue to improve and have the hope that life will be normal for me again one day.

I hope my story has been useful.

Summary: After extremely high intercranial pressures an LP shunt seems to be the answer for me.