[wifey101]

Hi everyone,

Wondering if anyone on here has Idiopathic Intracranial Hypertension alos known as, Pseudotumor Cerebri, or Benign Intracranial Hypertension.

I have recently been diagnosed and I am pregnant with number 2.

What is your treatment?
Have you had any vision loss?
Have you had a shunt inserted into your brain?
Have you had an Opthamic surgery?

Lots of questions I know, but my mind is spinning, and the thought of going blind is not a pleasant one.

Thanks,

Erin x

[wifey101]

Hi,
I posted the above ages ago....
Just thought I would bump it up as I am having some surgery on Thursday.

[Guest_toobusy_*]

Sorry - can't help with this, but just wanted to wish you luck for the surgery - which was today! So, I hope it all went well and the docs explained everything to you.

Kind regards, Regi

[wifey101]

Thanks Regi, all is well.
Have a trendy new haircut, and 25 staples!! LOL

[Guest_toobusy_*]

Glad to hear it... Hope the haircut suits !

Cheers, Regi

[hopeful81]

Hi,

Just saw your post and wanted to say glad it went well.

I have idiopathic intracranial hypotension (ie the opposite to you). I assume you had the shunt inserted?

All the best and a speedy recovery to you.

[bevan78]

My Wife has just been diagnosed with benign intracranial hypertension, I would be interested in chatting / emailing you.

Bevan
Cairns Australia

[miss1]

hi

I have just been diagnosed with this two days ago.

Did you try the medication before you had you shunt inserted?

I would also be interested in talking to you about this because there doesnt seem to be much info out there.

Ta

[wifey101]

Hi Miss1,
Yes I tried Diamox before the shunt. It didn't work!
I was having therapudic LP's every 6 weeks when pregnant with DS2. I was diagnosed at 9 weeks of pregnancy.

My discs became really bad, the shunt was a last resort to save my sight.

The shunt has been fantastic. I feel like a new person, and that I have my life back!!
I'm sorry you have been diagnosed with this. It really is a horrible horrible way to live.
There is not alot of info out there, and I would suggest you do some of your own research and carry it with you. Unfortunately when presenting to CAS the Nurses and Docs have no idea generally about BIH. They just want to give you lots of drugs... which although helps with the pain what you really need is a LP..... they generally put off doing them for as long as possible. (I got to the point where I would direct them where the needle needed to go in!!)
Get a good Neurologist, Neurosurgeon and Opthamologist is my best advice. I don't know where you are but my Neurosurgen is one of the nicest people I have ever met. He changed my world and for that I will be forgever greatful.

Goodluck- Hope Diamox works for you, and you don't have to have a shunt, but if you do it will be fine!!
x

[yasmensmum]

Hi, i was diagnosed with BIH back in 2000 and have had many things done to try to combat this condition. I am more then happy to help with questions if i can. I along with my doctor have also put together a survey that we are trying to get as many people with BIH to fill out as we can. If you are interested in helping out that would be great. And as soon as i put your info into the survey i will send you a copy of the results. I found that seeing the results of the survey really helped me to understand what this condition does to us and what to expect.
If you can help, i along with many other people would be forever grateful. If you are interested in filling in a survey and receiving the results, please send me an email at yasmensmum@yahoo.com.au and out survey in the subject please.
Thank you in advance.