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 Krystyn Diagnosed March 2010

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Krystyn<3
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PostSubject: Krystyn Diagnosed March 2010   Thu May 10, 2012 8:55 am

Hi everybody,
My name is Krystyn. I am American, I live in an arid desert and love spicy Mexican food. I had a baby August 2009, he was born 3 months early and I was in labor on and off for two months, one of which I spent in Antepartem in the hospital. I am a licesed hair stylist but I am not working in a salon. I am working on my bachelors in IT I will graduate next year and I was diagnosed with IIH in March of 2010. Very Happy

I knew something was wrong long before my diagnosis but the symptoms (as you know) are so obscure my family physician was dissmissive. In 2010, I had just started working for myself in a studio salon and working part time at a convience store in a small town. One night I had driven into the city to get some supplies and meet up with some friends I didn't get to see regularly. I'd had a headache that day and my head was throbbing. It was 10pm by the time I started driving home which was an hour and a half away. Before getting on the freeway I got to a traffic light that just turned red. I remember thinking to myself that I would just close my eyes for a minute and ease the pounding behind my eyes. I closed my eyes and it was somewhat of a relief but I didn't want to wake that long because I was worried the light would turn green. I opened my eyes and the world was black. I thought that for some reason my eyes were still closed and started to panic. I reached up to touch my eyelids and poked myself in the eye and really panicked .

Luckily for me the blindness was temporary, after what seemed like an eternity but was really probably only a few minutes, my vision returned along with my throbbing headache. I could see and still can, for that I am indescribably grateful, but my vision is deteriorating. From there I went home to my mother with my son and started the IIH adventure. In the begining, I did a bunch of vision testing, and met with a neurologist, I have some secondary hormonal issues due to IIH, such as, hypopituitarism (empty sella syndrome) and PCOS so I also see an Endocrinologist.

At first I did the usual things, low sodium and lumbar punctures. Then, I took diamox but developed Steven-Johnson syndrome (an adverse reaction to sulfa medication that causes necrosis of the skin), after we tried lasix but while they only have a little bit of sulfa I still reacted, then topamax which has a buffered sulfa and still no luck. Sometime in the next week I am meeting with a neurosurgeon to talk about a shunt. I have done some research and of course read forums. I have decided on a VP shunt with an adjustable valve because from what I understand they have the best success. If I think about it too hard I am totally creeped out by the idea that a foreign object is going to become somewhat of a permanent fixture in my body... Otherwise I look forward to having a lot of the symptoms of this disease relieved and especially getting rid of tinitus and all the spots in front of my eyes. I really appreciate groups like this one I have learned a lot from the expiriences of others and challenges and it has given my the strength to take control of my care and condition (something I should have done with all my dissmissive physicians, a long time ago).
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sinister416




PostSubject: Re: Krystyn Diagnosed March 2010   Thu May 10, 2012 2:09 pm

:hello: Krystyn Welcome3 to the group!

Sorry you had such a rough time with your IIH and the early birth of your son hug

Hormones can be a trigger in people with IIH and PCOS is a condition linked to IIH. Conditions related to IIH http://www.ihaveiih.com/f2-other-conditions-common-with-iih

Shunts can be a scary thing to consider hug but there are those who have success with them http://www.ihaveiih.com/t269-ventricular-peritoneal-shunt-vp-shunt

Please let us know how things go with the Neurosurgeon xx :flower:
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sinister416




PostSubject: Re: Krystyn Diagnosed March 2010   Thu May 10, 2012 4:50 pm

*From Facebook page*

Melissa Miller-Armstrong
My1st shunt was successful - I went back to work after the allotted 3 months (I was a kindergarten teacher). Unfortunately it got clogged (protein released into the tube from a hard sneeze). My 2nd shunt was a different type. It has been unsuccessful since the beginning. HOWEVER I am not telling you this sad story to discourage you because shunts CAN work and give your life back - I would do it again in a heart beat. Good luck! Smile
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PostSubject: Re: Krystyn Diagnosed March 2010   Thu May 10, 2012 6:14 pm

Hi Krystyn and a very warm welcome to the group. You certainly have been on quite a scary ride with this, so I totally understand your decision to have a shunt. It does take a while to come to terms with having one because it is a life time thing, and none of us like the idea like you, of having something alien in our bodies.

I have to say I felt exactly the same whenever a shunt was suggested to me, so I put it off for as long as I could. Looking back now I realise I completely misunderstood the difference it would make, and that it wasn't going to be something everyone could see. They can be problematic, and often hit and miss, but there are a lot of success stories of sufferers with shunts, and we have a little boy of 8 who has a vp shunt and a subtemporal decompression, he's partially sighted, and he plays tennis and does allsorts of things.

I myself have a vp shunt, and although I have had quite a few revisions, I am finally at a point with my current one, where my life is more or less back to normal, so please don't give up hope that yours could too.

We are all here for you and any questions or misgivings you have, we will all support and help you through.

Heidi
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BananasMom
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PostSubject: Re: Krystyn Diagnosed March 2010   Thu May 10, 2012 6:34 pm

Hi Krystyn! Very Happy Welcome to the group! We're glad you have found us.

Sounds like you have had quite a journey already in dealing with your IIH. Stevens-Johnson Syndrome is quite a serious reaction ... I'm so glad you came through that okay! I hope that all will go well with your neurosurgeon consultation next week, and that a VP shunt will soon give you the relief you need. I don't have a shunt myself, but as others have said, for many IIH sufferers it is the best option and helps get them back to a more normal way of life. *big hugs*

There are several folks here who have lots of experience to share regarding shunts, and we're all here to support you every step of the way! I look forward to getting to know you! Smile
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Wylee
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PostSubject: Re: Krystyn Diagnosed March 2010   Thu May 10, 2012 6:47 pm

Hello Krystyn and a big welcome2

I have a lp shunt, because I was too scared to do the vp shunt. It has been working out well for me. I think it tends to be a crap shoot as to whether there will be any issues or not. My Docs had excellent prep, pre and post surgery care and I got lucky. I hope you will be too!! You deserve a GOOD break!!
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Krystyn<3
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PostSubject: Re: Krystyn Diagnosed March 2010   Thu May 10, 2012 8:31 pm

Thank you for the warm welcome!

Now that I have made the decision to get the shunt, I just want to hurry up and do it before I chicken out, lol.
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Wylee
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PostSubject: Re: Krystyn Diagnosed March 2010   Mon Jun 25, 2012 9:57 pm

happy bday
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