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 Emily diagnosed Oct. 2011

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Gracenok
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PostSubject: Emily diagnosed Oct. 2011   Mon Oct 08, 2012 5:25 pm

Hi my name is Emily, I'm a seventeen year old and has been struggling with this disease since Oct. of 2011. I've had sixteen LPs since October, and every time I had one my pressure was 55+. In March of this year I had a VP shunt put in. For 4 months I was good, I thought I was in remission. Until the last week of July, I felt the pressure was high again. When I was rushed to the hospital I had a LP done and my pressure was high once again! I was SO frustrated that I was NOT done with this! Since July I have been in every month for an LP.

I'm SO confused with this disease, and so are my doctors (Well, except my neurosurgeon who has wiped his hands of me!). My doctors have started talking of a second shunt, the one put in the back. I was wondering if anyone on here has one and is willing to help me with some questions!
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PostSubject: Re: Emily diagnosed Oct. 2011   Mon Oct 08, 2012 6:58 pm

Emily Welcome to the group.
I'm sorry that you have been through so much in this last year and that the VP Shunt wasn't as successful as you was hoping. I am also sorry that your Neurosurgeon washed his hands of you as that must have been so hard and really unfair on you.
I've heard of a few women who have needed to have two shunts, any information you need about a LP Shunt (the one in the back) you can find in our IH and Surgery section.
Ask as many questions as you need and I'm sure someone with two Shunts will come along soon and will be able to give you their personal experience.
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PostSubject: Re: Emily diagnosed Oct. 2011   Tue Oct 09, 2012 5:50 pm

Hi Emily, and welcome to the group! I've had a lumbar shunt since 2002, but I haven't had to try the VP yet. I've had a few revisions in the past 10yrs, but it's been wonderful! Check out the surgery section that Nikki suggested and let us know if you have any questions. I hope they're able to find a better solution for you..you're too young to have to struggle like this!

Take care,
Julie
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PostSubject: Re: Emily diagnosed Oct. 2011   Wed Oct 10, 2012 5:39 am

Hello Emily and welcome to the forum.
I assume your docs checked to make sure your shunt is still working correctly??
I have only a lp shunt, but have spoken with quite a few who have needed two shunts.
Just know that you are not alone. We will try to help you through this.
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PostSubject: Re: Emily diagnosed Oct. 2011   Mon Oct 15, 2012 6:40 pm

Yes, my doctors have checked my shunt at least three times since July to make sure it's working. But, my neurosurgeon doesn't want to check on how fast the shunt is working. And my doctor asked a different neurosurgeon what he thinks about the LP shunt, and he said nope she's too fat!!! ':Angry:' Okay, yes I'm not stick thin but I'm not a ball either! I'm only like forty pounds over weight! But no, I'm too fat and I should think about getting that bariatric surgery!! 'nuhuh' I'm ONLY seventeen!! That made me SO mad! That's like the third time someone has suggested that for me! What kind of people are they?!?

Sorry I'm a little frustrated with all of my doctors right now. None of them seem to know what to do so their opinion? Lose weight! Even though I've TRIED to tell them this is NOT a weight disease!
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PostSubject: Re: Emily diagnosed Oct. 2011   Tue Oct 16, 2012 9:50 pm

Yeah, weight loss can go either way. Personally, I gained over 100lbs AFTER being diagnosed w/ IIH ..btw, my lumbar shunt still works fine. Weight loss can help and maybe they're hoping it's a viable option because you're so young, but suggesting bariatric surgery seems absolutely ridiculous..no wonder you're frustrated!!! I know you've mentioned your opening pressures, but are you having any vision loss? That's really the main concern w/ IIH, so they may be focused on weight loss because you're vision seems stable?? I honestly can't imagine why they would recommend bariatric surgery in someone so young, but that's the only reason I can think they'd be so focused on the weight loss..it's better than intrusive surgery and you still have time. Try keeping a journal to log your food, activity, meds, and symptoms..it can be completely annoying, but may give you all a better idea of what's happening (progress and problems).

All you can do is take it one day at a time..hang in there!!!
hug
Julie
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Gracenok
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PostSubject: Re: Emily diagnosed Oct. 2011   Wed Oct 17, 2012 4:53 pm

I haven't had any vision loss since my VP shunt surgery. My vision has gone blurry and double, but so far no one has said anything about papilledema since.

I haven't necessarily gained any weight since IIH but I've been in this same range for like four months! I'll gain a couple pounds then lose maybe one. But I've finally met one of my personal goals to get out of my typical range and I did it! And I've managed to stay out of that range for a couple of weeks now!! Very Happy I've also been very diligent with my exercise. For a while I was walking five miles a day. But then some personal stuff happened and I got out of routine of doing it. But yet I still managed to stay the same weight. But I also have PCOS and a Vitamin D deficiency which both make it really hard to lose weight. It's hard watching my family lose like two, three pounds a week and I haven't even lost anything. Most times I've gained but we're all doing the same things! We watch what we eat and exercise like CRAZY!
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PostSubject: Re: Emily diagnosed Oct. 2011   Wed Oct 17, 2012 5:32 pm

PCOS will make it difficult for you to lose weight and PCOS seems to be a condition related to IH. Have you spoke to your doctors about it possibly being hormones?

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PostSubject: Re: Emily diagnosed Oct. 2011   Wed Oct 17, 2012 7:54 pm

No I haven't but, they do have me on something for the PCOS. They have me on Seasonique to hopefully have me only have 4 periods a year. They're also hoping that with me only having 4 periods a year, that will help, because my flair ups of pressure was always around the time of my period.
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PostSubject: Re: Emily diagnosed Oct. 2011   Thu Nov 15, 2012 10:51 pm

Hugs! You are so brave and that is so much to deal with at your age. Have you considered a second opinion?
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PostSubject: Re: Emily diagnosed Oct. 2011   Fri Nov 16, 2012 4:46 am

Many of my specialists have talked about it, but they don't think I'll get any better results in my state. And my family can't make a trip outside of our state.

But, on Oct. 22nd, my pressure went up again. They couldn't do anything the day I went in, because it was on a weekend. So, they waited till Monday the next day to schedule an LP. But, I never had that LP, because my neurosurgeon walked in, and surprised us all with saying "I have an opening today, and I can go in and check the shunt. Because obviously there's something wrong with the shunt if you've had to come in more and more frequently."
So, instead of having a normal LP that I've had 16 of, I had another brain surgery. They found the tubing of the shunt completely clogged, so they unclogged it and added some new equipment. So, hopefully that was the problem and I won't have to go back in! I'm praying that's true anyway!
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PostSubject: Re: Emily diagnosed Oct. 2011   Fri Nov 16, 2012 5:30 pm

Emily I am keeping my fingers crossed for you. I hope that this time you will be on the road to a good recovery and some normality. hug

my fingers are cross
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