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 Elizabeth - diagnosed 2010

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sissybeth
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PostSubject: Elizabeth - diagnosed 2010   Tue Feb 08, 2011 3:21 am

Hi my name is Elizabeth. I have had IH for a year now. I am married to a wonderful man and we have one son he is 7. My IH story starts last January. I got a new job as a CNA and everything was going so well. Then I noticed that I had this headache that was not going away and was getting worse. I thought it was a migraine but after 4 weeks of no relief and my eyes feeling like they were going to fall out of my head I went to the ER. I spent most of February 2010 in and out of the hospital with no relief. They tried everything to get the pain to go away and it would not. I was seeing the local Neurologist and he was not doing any good either. They did a LP during one of my ER visits but they did it while I was sitting up so they didn't get a opening pressure. I was getting no where. 57,000 dollars later with no answers and no relief I started doing some research of my own and found this disease called Intercranial hypertension and I was like wait I have all of those signs. I told my Neurologist about what I had found and he wanted nothing to do with it he said that I could not have it because I didn't have double vision. I fired him. I started seeing a new Neurologist about a hour away and I told him what I thought was going on and he had me go have a LP done and see an opthamologist and sure enough my opening pressure was 370 and I had papilledema that was starting to get really bad. The doc put me on Diamox and that seemed to help. I was taking 2000mg a day. I still was getting the headaches and the papilledema was going away. But then in August of 2010 it got really bad. I was in the hospital for 3 days had a lp done and then had to have a blood patch done and the papilledema had taking over my sight really bad. My neuro dr had me see his partner the neurosurgeon to talk about putting in a shunt. This all happening right around my birthday really sucked. So on October 6th 2010 I had a VP shunt placed on the right side. It is a programmable shunt so that is nice. With in 2 weeks of the surgery my papilledema was gone and I was feeling much better. The week of Christmas I noticed that I had a knot the size of a soft ball in my abdomen and my eyes were hurting again and my head and back were killing me. I went to the doc and he did some xrays and cts to see if there was anything wrong and sure enough there was the catheter in my abdomen had came out so I had to have it put back in. So 3 months and 4 days after my vp placement I had to have my 1st revision. From what the docs all say it may not be the last either. I am lucky to have my husbands insurance but they will only pay up to 1 million in a life time and I am already half way there. Then what am I going to do? My family is there for me but they don't understand. I have printed out and had them read everything I can find on IH. I am really glade there is groups like this out there not only for me but for my family too. There are days like today where I feel really bad and wish I had a brain tumor at least they can take that out and there would be a reason for me being sick all the time. I hate the fact the people are blind if there isn't anything to see. Thank you for your time.


thank you Elizabeth
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Sammie
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PostSubject: Re: Elizabeth - diagnosed 2010   Tue Feb 08, 2011 6:02 am

Hi Elizabeth.I'm new here too. I'm sorry you had a rough day. I know how you feel. I don't really have any answers myself but I know this is a good place to start.The people here are super nice and know what you're going through. I'm glad you're here and feel free to talk with me anytime you want. Smile Don't take on the world just focus on feeling better.
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Heidi
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PostSubject: Re: Elizabeth - diagnosed 2010   Tue Feb 08, 2011 2:34 pm

Hi Elizabeth and a warm to the group. Your story has the familiar pattern so many of us have faced in our struggle with this condition. I totally get your frustration at people only seeing what they want to see, but they do say ignorance is bliss, and I think it gives people a safe card to not get involved. My family chose to stay on the outside rather than understand what was happening, and it took them having health issues of their own to look at my health again, and see finally what I was going through. Then they were asking for my advice.

I've had quite a lot of revisions myself, and yet, funny as it sounds they were worth it, because I'm now at a point where I can get on with my life again because of those revisions. I must admit at the time of each of them, I didn't think like that, I found it all so wearing, but I kept focusing on the days when I could enjoy my family and function.

Never give up hope Elizabeth, because you will again get your life back to functioning the way you want it to, you just have to tweak it here and there to do it. In our recommendations section there are links to help with the cost of medication resources, and these are recommended by the IH Research Foundation on their website, and might be of some help to you.

Please remember we are always here for you, and even if it is just to have a rant, you can do that too. hug
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