Wanted to introduce myself 'officially' :).. sorry, got super long

General
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Hi! I'm hoping this won't be TOO long, but I do like to ramble... ;) I hope this is the right place to post this. I just found this site yesterday, so while I'm not new to 'message boards' (been on parenting boards since 2005) I AM new to this one.

A bit about myself in general.... I'm a 35 (almost 36) year old single mother of 3. My identical twin girls will be 11 in December and my son is 4.5. I've been single since the day my son was born and solo parenting is quite an adventure. I live on Kauai and have been here since August 1985, so... a LONG time.

I have 'mental' issues in addition to my physical ones. My biggest mental issue being social phobia, so computer socialization is where I get 99% of my real life support.

I'm pretty positive that I've had issues caused by the CM since birth, but my mom would have to be the one to tell of most of that since I was a baby at the start and I really don't remember most of my childhood. From what I DO know that she has told me... I had feeding and growth issues from birth (was 13 pounds at 13 months... the same weight my son was at TWO months). The doctors thought I had hydrocephalus around 8-9 months and I was about a day away from having a shunt put in before they decided that they could find no swelling, so the problem must've corrected itself. I had balance and developmental issues... didn't sit up til 13 months even though I could speak in sentences at that same time. Head and stomach issues were constant complaints throughout my childhood.

When I was 15 I started getting migraine status pained headaches, so my mom took me to get an MRI. That is when the CM was first diagnosed, but all I (and she) knew was that something was different about my brain.... and we had no clue WHAT any of it meant. I was supposed to get a repeat MRI at 19, but my insurance under my dad (parents split when I was 15) ran out right before the MRI was scheduled. He couldn't afford to keep me on his insurance even though he wanted to... so that was the end of that.

I've always lived w/ balance issues, headaches, stomach issues, and fatigue, but it was just 'normal' to me. I believed (and still somewhat believe) my ex when he thought I was just being lazy and pathetic cuz even though I KNEW 'something' was off... I had no clue what. My symptoms have worsened considerably this year. Fatigue is extreme, headaches are more frequent... I get dizzy, nauseous, etc.... My mom found the old MRI report among a few other medical reports of mine, sent it to me, and that's where my research started.

My MD (love that guy... he doesn't know much about CM, but takes my word for things and is trying to point me in the right directions to the best of his ability) got me a new MRI done in August. Apparently there has been no change in the MRI, but I don't know what that means cuz there is definitely a change in ME. I saw the only neurologist on island shortly after the MRI and he says that the CM is not significant to be causing any of my issues. I was SO discouraged after that visit, but a friend of mine sent me a link to a discovery health video about a girl who's CM wasn't even detected by MRI.... yet her symptoms were so severe that she was confined to a wheelchair. That made me think again that maybe I'm NOT crazy after all. I don't know for a fact what of my symptoms are or are not caused by CM, but at least I know it is POSSIBLE.

We have no neurosurgeons here, but there are a couple on Oahu and one of them comes to Kauai on Fridays. My first appointment w/ him is scheduled for October 19, so we'll see what happens. My best friend is thankfully coming to the appointment w/ me cuz I am very overwhelmed.

I was working very part time until the end of July, but my fatigue and pain are such that I could not continue. We've been on welfare since my ex left and I've now filed for disability. The welfare disability department is giving me a ton of hassle and if the NS doesn't say I can't work.... we're going to be quite messed up.

I have a very strong faith in God though, so I'm TRYING to trust that He knows exactly how this will all work out. I am 'naturally' a worrier though, so it's very difficult.

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Teresa,

Your list of symptoms from your life story sounds like mine. First of all you are not lazy. Fatigue is one of the most difficult symptoms of Chiari to deal with. The size of the herniation doesn't matter it's the symptoms and the amount of obstruction. Most neurologists don't see enough people with Chiari to understand it. The experts are neurosurgeons that treat a lot of Chiari patients. Do you know if the one you are seeing in October treats many people with Chiari? You may need to travel to see a specialist. Your symptoms are real you aren't crazy or lazy. I am so sorry you are going through such a dificult time but I am glad you are here. I will send you prayers and good energy.

Wendy

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Thank you. I have no idea how much, if any, experience this neurosurgeon has w/ Chiari yet. The only way I can travel is if insurance will cover everything (including a companion due to the dizziness and confusion I get in new places), so I don't know how likely that is to happen. My insurance covers 100% of what it covers, but since it's state insurance... they, of course, want to get away w/ the cheapest options possible. I just have to wait and see what happens on the 19th. :)

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Hi Teresa,

It's really nice you have become a Member. I look forward to getting to know you. You have definitely been through a lot. Please keep us posted on how you are doing.

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Hi Teresa,

I am glad you are seeing a surgeon. Even if they are not seeing a lot of Chiari patients, they will still know what is happening better than a neurologist. I would be certain to impress upon the surgeon the level of pain you are in and explain that you are unable to work. You may want to keep a list of symptoms and questions for the surgeon, too. When I was applying for disability, my attorney told me to keep a daily log of how I was feeling, symptoms and pain level. Do you have a disability attorney? Most of them will not collect anything unless you win the case. Then (at least in Indiana) they can only take a very small percentage of what you are awarded. I would not even worry about traveling right now. You will know better what you need to do after you see the surgeon on the 19th. Hang in there! Is the neurologist at least helping you with pain medication?

Carla

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I do not have a disability attorney. My counselor told me that it is standard for then to deny 3 times here before you are approved... if you are approved, but that legal aid will handle my appeals. I'm very new to this and just trying to muddle through and figure out what I need (and dealing w/ the anxiety and social phobia trying to GET it done). I did call the SS department today just to check on the status of my long term claim. The lady was very nice and gave me the address to mail doctor reports to directly. I applied on August 9 and it typically takes 4-6 months before they reach their 'first' decision.

I don't take pain medication. My MD gave me a prescription for (I believe?) Imitrex, but the first and only time I took it I ended up w/ the worst pain in my entire life. I don't handle meds well at all.. my body doesn't even handle caffeine. I do take 600mg of Ibuprofen when the pain gets unbearable, but it's hit or miss whether or not it does anything... usually miss.

The only suggestion the neurologist had for me was to be injected w/ nerve blockers, but I read up a bit on that and it freaked me out...