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 Rachel Diagnosed Dec. 2011

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PostSubject: Rachel Diagnosed Dec. 2011   Sun Apr 01, 2012 2:59 am

Hey Everyone! My name is Rachel. I live in NC, but soon to be back in ohio! :-) I'm not sure how long I've really had IIH(I've had headaches since I was in a car accident at 5) in august of 2011 I started having vertigo and dizzy spells and about the week before thanksgiving this year I got this head ache I couldn't shake no matter what I did, one day it got so severe I was in kicking and screaming pain, I kept telling my mom who was there that it felt like my head was going to explode, and it was pressure (boy how right I was). We went to a urgent care, not really sure what was going on. I had a hard time seeing at that point, everything was blurry and I could barely hold my body up. They treated me for a migraine even though I was crying and screaming.. I'd had migraines since I was 5 and I knew this was no migraine! The next day I started having double vision, and I wasn't really sure what to think of it, I figured it would go away. I was supposed to go to my bf at the time's house for thanksgiving which was a few hours from my house. Long story short thanksgiving day I ended up in a small ER where I saw a ER doc who was also a Opthamologist. He saw the papiledema in my eyes, and the CT they THOUGHT showed a clot so they sent me to UVA, a much bigger hospital. Many docs saw me that day and saw the paps, so they said they were doing a MRI to rule out a clot, and if not doing a lumbar to see if it was psuedotumor. When my MRI came back negative, there was a different doc then I had ever seen and He acted as if I was making up my symptoms, told me I didnt need a LP and sent me home with a anti-depressant that was a supposed migraine medicine. So I was back to square one, still couldn't see. I decided to make an appointment with a neurologist which took me almost a month to get into. As soon as she looked into my eyes she ordered a STAT LP, put me on 1000 mg diamox and my pressure at that time was 35, they drained me to 5 which of course made me feel horrible because it was so low, but I finally had a diagnoses. I switched neuro's not long after because she 1. didn't believe in treating pain at all (she was a migraine specialist) 2. Had never seen someone with IIH 3. Didn't believe in shunting, even if necessary. I happened upon a great neurologist who has been my life-saver even when it seems like every other doctor gives me hassles..sadly when I move I'll have to say bye :-( He quickly added lasix to my mix, and upped my diamox to 2000mg..I was on it for a couple months with zero relief..constant pain and my eyes weren't improving very much. I did a lot of research.. I knew shunts had a high failure rate, but I also knew I could not function on diamox.. I felt like i was 150 (I'm 24 yrs old) and it was not actually helping my pressure. My doctor referred me to a neurosurgeon in my area in NC, but from my research I was set on a VP shunt because I already have a mild chiari malformation and I knew that a LP alone could make that worse. This doctor refused to do a VP shunt on me saying that most people with IIH have small ventricles and it would be harder, without actually even seeing a MRI of my brain. I scheduled surgery for a LP but ended up canceling it because I just couldn't shake the feeling that it wasn't for me. I asked my neuro to refer me to OSU and he said he would refer me anywhere I wanted :-) 2 weeks later I had an appointment with Dr.Prevadello who is a awesome surgeon! I went to see him and he agreed he wanted to do a right frontal VP shunt on me and I was scheduled for surgery a week later. I had my VP shunt placed march 1st 2012. After two days my shunt failed.. They really didn't know what to make of it. They did a LP and my pressure was above 46 (they had trouble measuring it, it was going up so fast). I was only on 500mg of diamox and 20 mg of lasix and was in horrible horrible pain., my eyes wouldn't follow each other.. I was worse then with diamox! My doc ended up going back into my brain and flushing my shunt. Thankfully I came out of that surgery a new women. I'm doing a lot better now except for the occasional pressure head ache, which is mild in comparison. I do have a lot of abdominal pain still (I got a staph infection UTI from the cath during surgery) from tubing and also kidney stones from the diamox, but I am soooo much better then I was. I pray this shunt will hold on because I feel HOPE right now :-) My neuro just put me back on 40 mg of lasix to try to help some of the residual pressure which I just started today, I do think it is helping some. Sorry for the long story and I'm sure you guys got bored halfway through ;-) but I'm really happy to be here. IHope for a cure!
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PostSubject: Re: Rachel Diagnosed Dec. 2011   Sun Apr 01, 2012 3:15 pm

Hi Rachel hug and a very warm welcome to the group, I'm glad you find us and it's great to have you here. You certainly have had quite a journey with your IIH, and sadly yours is like many of our members stories.

I know how hard IIH is and especially when you are young and want to be living the kind of life your friends are, and feel like you are missing out on so much because of the pain and other symptoms. I applaud that you have explored your options and were able to make decisions based on what you felt was right, and would work for you.

It's so disappointing when you are shunted and you are optimistic that things will go back to normal pretty quickly, and when that doesn't happen how frustrating and disappointing it is. The key thing, which I think you have, is determination and an undeniable hope. These are very necessary to being able to have a better, productive and positive life with this disease. So never lose those because you're half way there already.

I'm so glad you managed to find a Neuro who found the right solution for you, and who you have been able to trust and have faith in, which means when you have to look for a new one when you move, you know exactly what you want from them and the experience and qualities of the one you have now.

You don't have to apologise for the length of your story because it is your story, and we all have one, and want to share them so that we can all connect and relate. It's also very cathartic to be able to tell someone about the journey you've been on, the problems, failures and successes.

Here at I Have IIH we give you your IIH voice, because we know that for many of us we have been denied this voice or have been simply ignored and disregarded. We want to hear your voice, whether it be to rant and vent, or to merely chat or ask questions. These are your forums to do all those things.

I look forward to your partipation in the forums, and if you have any questions about anything don't hesistate to do so. You can also contact any of the team and moderators by PM.

We also encourage you to keep a symptom log, which you can find in our Useful Guides and Printouts section, and you can even post your blog or create a journal in our Members Journal section. We also have lots of helpful booklets that you may find helpful.

Always remember you are not alone and we are always here when you need us.

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PostSubject: Re: Rachel Diagnosed Dec. 2011   Sun Apr 01, 2012 4:33 pm

Hi Rachel,
to the group!

Sorry you've been through so much with your IIH Like Heidi said its great that you took the decision yourself and went with your heart. I really hope the shunt works out for you xxx

I hope you find our site useful and I look forward to seeing you round the forum!
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PostSubject: Re: Rachel Diagnosed Dec. 2011   Sun Apr 01, 2012 8:52 pm

-waves- Hi Rachel!

I live in Scio, Ohio.

I'm sorry to hear of the path that IIH has taken you on. I too, have had a rough one. You're definitely not alone, and you have come to the right place for answers and support!

I have found several people both through here and Facebook to lean on, when it seems that nobody else understands us, and would be glad to help make introductions!

<3 Crissy
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Rachel Diagnosed Dec. 2011

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