Hello everyone!

It said on me members email to try to introduce myself so hear it goes..

My name is Jess I am 19 years old. My life pretty much turned upside down with I was diagnosed with IH in September 2011. I had gone to the opticians for a regular eye exam as I had been having pretty bad migraines , he immediatly noticed optic disc swelling and hemmoraging behind the eye. He sent me straight to Qa (our local hospital with a an accident and emegency department). They admitted me straight away and the came the blood tests/Mri scan and lumbar puncture which all revealed I had Ih. I was immediatly put on Diamox 500g twice daily. My symptons eased up until December then boy was I poorly. Within two weeks I had 2 emergency lps done one of which caused a low pressure headache and I had no fluid left to cushion my brain. I was admitted to hospital and spent a week fighting an infection and low pressure headache. I was put on morphine and laid flat in a dark room. My bp was pretty low due to the sickness so I was on Iv pain relief , Iv fluids and Iv antibitotics. My neuro then admitted me to Southampton hospital (the big neurological hospital) There they discussed giving me a VP shunt but my neuro wouldn't allow me to have it! However , I saw him this Wednesday just gone Wednesday the 1st/2/12. He says that the fluid has spread and is now putting pressure on my left eye (usually it stays behind my right eye and I have lost 90% vision in my right eye due to this!) Both optic discs are very swollen and I have a abnormally large blind spot in my right eye. My left eye is slowly deteriorating so he said the vp shunt is no longer unavoidable. I am waiting to hear in the next week when/where my surgery will take place. I had to give up work (am a nursery nurse with specia needs experience and knowledge) I live at home in the UK with my mum and brother (both with disabilities)

I can only sleep sitting up as the pain is to great to lay down. I also take a load of pain killers to help me through the day and night and am adjusting to vision loss so often fall over.

I try not to be angry at losing a lot of indepedance and stability at just 19 years but I know others are worse off. I am hoping to find support from you lovely people.

If any one can give me a rough idea of

A) How long does VP shunt surgery take
B) will I have to shave my head?
C) how long did you spend in hospital after a vp shunt.
D) Was recovery painful.

I have read the links but would prefer to know from peoples personal experience

Thanks for reading! x

Hi Jess, and welcome to the forum.
Your story is very typical of IIH. It is not a pleasant illness to have to deal with. It sounds as though you have a responsive medical team, and that is very helpful.

I have a lp shunt, not a vp. Mine was very quick and easy, all has gone well. It seems they do things a bit differently in the UK, For one thing, if they had you lay flat on your back for one hour after having a lp, your chances of getting a low pressure headache is much smaller!

Perhaps one of the others who have had a vp shunt will be along to give you some assistance.

Hi Jess to the group! Sounds like you have had a rough time lately

I don't have a shunt but the procedure if there's no complication should take around a hour/ hour and a half,
they will shave your head but not all of it just the area where their going to place the shunt,
as long as everything goes ok and you recover well you should be out of hospital within 3-4 days,
in respect to it being painful I can't really answer but they should give you enough painkillers to cover any pain your in.

I hope your operation goes ok and I'm sure someone will be along soon that has a VP shunt that will be able to give you a more personal story xxx Keep us up to date with how things are going with you xxx

so much for the replies! Nice not to feel so alone!

In the UK we have to lay flat for minimum one hour preferably three hours after a LP. We are also advised to drink a lot of caffiene afterwards. My neurology team at the moment is made up by two neurlogists a registrar and a consultant. I see both of them but the Specialist makes the "big decisions" I am blessed to have the nation health system so I don't have to worry about paying out for insurance or procedures.

Thanks again! xx