Hello my name is Janine I was diagnosed with IIh in December 2003. I had never had any bad health growing up just the normal child stuff I have had 3 lovely children my eldest son is 25 my daughter is 22 & I was very fortunate to have my youngest son who is 10.in the Oct 2003. I started to notice that as I looked at things everything looked yellow I was sent to my local optician they checked my eyes & sent me to my local hospital from there I had lots of test & waited for a appointment to see a neurologist unfortunately just a few weeks later I ended up in a & e with a really chronic headache & my eyes were getting worse they sent me to Birmingham Queen Elizabeth hospital had a lumber puncture & I was diagnosed with B I H they put me on medication I managed till June 2004 then had to have more lp's & ended up with a VP shunt.Since then I have had a series of up's & down's in April 2008 I had a operation for a Hind Brain Hernia as the headaches returned ears whooshing eyes became a lot worse had to stop driving,working in general my health had become really bad.My husband had to be my carer then in nov 2009 headaches returned again so had to have a csf infusion study to find my VP shunt is not working correctly so I am off tomorrow for my VP shunt revision.
Well that's just a introduction to myself and my IIH.

Hi Janine, and welcome to the group!!! I'm sorry to hear you're struggling again. I hope you're having a simple revision and will be feeling better soon..keep us posted!!

Take care,
Julie

Hello Janine, and welcome.

Wishing you a successful revision and quick healing. Keeping my fingers crossed for you.

Hi Janine! Welcome to our group!

I'm sending lots of good thoughts and prayers your way today that the shunt revision will be as easy on you as possible and will end up providing you lots of relief of your symptoms. Check in with us when you can and let us know how you are feeling! *hugs*

Hope it goes well hun x

Hi Janine the group! Sorry to hear your having a rough time recently and I really hope its a simple shunt revision. Please keep us up dated xxx

Janine I'm so sorry you're having a rubbish time with this, and I do hope your shunt revision goes smoothly for you and I will keep my fingers crossed for you. Keep us updated and I look forward to your participation among the forums.

Heidi

thanks to everyone for all your kind posts. unfortunately when the day arrived i phoned for my bed in the morning & was told my operation had to be cancelled due to a shortage of beds,after that i have steadily got worse my head feels like it wants to explode my husband phoned my consultants secretary to ask when it may be possible for a new date they said the end of march :frustrated so for now i am having to just go with it but as you might know i am having more bad days than good today has been good thanks again for all the welcome posts it's nice to have people to talk to that understand what iih is like to live with

Janine I am so sorry that things haven't got any better for you and that you are having to wait for your shunt revision. You must be so frustrated and angry at the moment and who could blame you nuhuh but I would try your hospitals PALS and tell them what is going on and how long you're having to wait for this revision, and they should be able to help things along for you by liasing with the Neurosurgeon who you are under and your Neurologist.

I know there are bed shortages and waiting lists but the fact that you're struggling to function on a daily basis and in so much pain can't go unchecked or untreated. Here's the link PALS where you can find your nearest office and you can then give them a ring. I've used them myself for similar problems and they are very helpful and quick. This is why I always advise our UK members to use them when they come across a problem with seeing their Neurologist and/or Neurosurgeon.

Let us know how you get on and hopefully PALS will get things moving for you.

Heidi

Janine, I'm so sorry to hear they had to postpone your surgery (and agony) another 4-6wks..nothing like having the rug pulled out from under you the day of surgery! Not to mention the angst of preparing for surgery..again. Ugh, that sucks! I've been there a couple of times myself and it's no fun..especially as your pain increases. I wonder if they could prescribe meds to reduce fluid or something until surgery. I know I had gotten an LP once when surgery postponed, but it doesn't sound like that's a great option for you. Hang in there..I'll keep my finger's crossed that PALS can help or surgeon will have an earlier opening!!!!