Sub temporal decompressionLiving with sub temporal decompressions I am having a sub temporal decompressionWhat are they?
Sub temporal decompressions involve removing circular pieces of skull from over your temporal lobe. It's usually done in hard to manage cases, as it is a permanent procedure. This kind of procedure is done when all the others aren't effective either alone or at all. It might be necessary to do one side or both, and by using this method it creates space for excess CSF, and prevents the pressure from damaging your optic nerves. decreasing the chances of sight loss significantly. What is it like to have it done?
After the procedure, you are taken to the HDU or High Dependency Unit to recover and be observed for the first few days. There is a chance you will have bruising and a black eye. There may also be a low pressure headache, and some pain for a day or so. The area will be tender, and to touch it will feel soft and spongy. When the swelling goes down it will feel indented, and you will be able to feel the outline of skull.What happens when you have raised CSF
When your pressure is raised, it will feel like a small balloon, sometimes it is soft and spongy, some times it will feel very firm. The headaches feel different too, and can feel deeper in your head, and with an aching feeling. They aren't as intense, and your prescribed pain medication can deal with it accordingly. You might notice them more when it's your menstruation(if you're female), or when the weather is overcast.
They do go down on their own, but if they don't and the headache increases, then you must see your Neurologist or Doctor.
They do take a bit of getting used to, but in the long run, they also bring you comfort in knowing that the danger to your sight is now minimal.How do you know this?
I have had sub temporal decompressions done to both sides, and have lived with them now for 6 years. the difference they have made is incredible. My sight is stable, and so is my IIH. Even though I had a VP shunt, unfortunately in my case it wasn't enough, and like many of you, who hear about this procedure, and find it frightening, so did I. I didn't have them done together, but one at a time. It was several months later I was told I needed the other side doing.
I have to admit though, it sounds a lot more frightening then it actually is. I have never regretted that I had to have them done. I was already partially sighted when I needed to have them done,and I was prepared to do anything to keep my sight.
So, if you are reading this because you have been told you need to have one done, or just because you've heard of it and wasn't sure what it was, I hope this has answered some of your questions, and helped you.