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 Hi I'm new and was diagnosed in November 2015

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MichelleT238
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PostSubject: Hi I'm new and was diagnosed in November 2015   Fri Jan 29, 2016 8:18 pm

Hi
I have been diagnosed with iih in November 2015. The past two months have been very difficult for me. IIH is something that I had never heard of before. Since November I have been hospitalised 4 times. I have had 10 lumbar punctures and I'm on two different types of tablets to try reduce the pressure. I'm also on different pain killers for the head aches that I have been getting. I am so pleased that I have found this site and be able to chat to people who have this also.
The DRS have been monitoring my eye sight very closely as I have had episodes which cause my sight to completely disappear. This happens for up to 5 minutes at a time. A very scary 5 minutes. My last LP the pressure was 43, my lowest has been 32. Today they spoke about a surgery for a shunt. I am not to sure about this.
Any information that anyone could give me would be very appreciated. Thank you for the time to read over this. Xxx
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Heidi
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PostSubject: Re: Hi I'm new and was diagnosed in November 2015   Fri Jan 29, 2016 9:04 pm

Welcome to the support forums I am so glad you joined us. I'm so sorry that you are going through all this, but you're not alone and we're always here for you. I understand totally how hard this is for you, and how scary, especially with the 5 minutes of vision loss at a time. I was the same way, and I'm sure other members will also tell you they can relate to you too. 

Your doctors sound very clued up to IIH, and it is good that they're monitoring you closely. Usually when multiple lumbar punctures of having to be performed, and medication isn't able to do it's job and your eyesight is at risk, then that's when they mention surgery. I'm sure you're feeling terrified by hearing that when you are just getting your head around what the condition is and what is happening to you.


Surgery is a last resort, and there are many of us myself included who have a shunt. It is a big thing I wont lie, and they can be problematic, but when they work they allow you to get your life back on track and the risk to your eyes is gone. there are pros and cons with shunts. 


You may or may not know, but we are a UK charity and have a main website I Have IIH Foundation Charity You can download our pdf information booklets from the publications page, and if you let me know your details by emailing me via our contact page on the charity website, I can send you hard copies of those booklets. 


There is a lot of information on this site regarding shunts and other things relating to IIH, there are also discussions from members who have shunts. There will be some posts that relate to many surgeries, and shunt revisions, and that can be par for the course when you go down the shunt path. I want you to bear in mine it is not the same for everyone, some have a successful first shunt, whereas for some it could be their second of even sixth. 


Ask as many questions as you want and need from us, that's what we're here for. We're here to support you and to help you, so that you are not going through this without anyone understanding what you are going through.
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MichelleT238
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PostSubject: Re: Hi I'm new and was diagnosed in November 2015   Fri Feb 05, 2016 8:44 pm

Thank you very much for responding.
Today I found out that I am getting a shunt. I'm really nervous about this and really do not want to get this. I have heard so many stories that I'm just not sure. I would really appreciate the booklets. As much as the doctors have been good with me, they haven't given me anything away to read over. I'm not sure how I send a message for my address. Xx
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Heidi
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PostSubject: Re: Hi I'm new and was diagnosed in November 2015   Sat Feb 06, 2016 3:32 pm

Michelle you can email your details to my email address heidiwilson@ihaveiih.com and I'll get them in to the post to you.
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