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Chiari Malformation Community
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Avatar universal

chiari insurance

Hi everyone,

I got diagnosed with Chiari malformation in december of 2009.  I saw two neurologists.  They both said that all of my symptoms are migraine related.  One of them suggested I was suffering from analgesic rebound and the other said I have "chronic headache syndrome."  Both of them recommended a daily blood pressure medication for the migraines, but I decided against it because I have low blood pressure.  In February I went to the ER because I couldn't move half my face.  I thought I was having a stroke.  They diagnosed me with Bell's palsey and acted like I was wasting their time.  I have had 2 almost painfree days in the last 13 months.  I blogged about them because they were so unusual.  I've been ignoring my symptoms because I learned that it's all in my head and I am wasting the Dr.'s time.  Now it's affecting my life to the point where I'm getting really scared.  I am a newly single mother of 3, the oldest is 5 yo.  I used to read to them every day.  I can manage maybe once a week now.  I drop the book easily, stumble over words, and can't focus on the print.  I can't pick my kids up and carry them without hurting for days.  I am almost always suffering from diminished sensation.  The daily pain is getting worse and making it hard to have as much patience with my kids as I should.  I became a stay=at=home mom when my health started getting worse.  To make matters worse I lost my health insurance two months ago and have no prospects available for new.  The diagnoses I have are now considered pre-existing conditions anyway.

So I guess all of this has led to two questions:

1)  Can symptoms of Chiari be mistaken for migraines and can Chiari symptoms ebb and flow with increasing frequency, but not be consistent?

2)  Does anyone know any resources for medical advice/treatment options specific to Chiari malformation that don't require health insurance and will work with a limited income?

Thank you all for your time,
Lori
6 Responses
Avatar universal
I can relate to your symptoms, and this condition is commonly misdiagnosed. After my diagnosis, I have seen my GP and she still makes comments that just confirm that she has no clue. My neurosurgeon agrees that really only neurosurgeons know anything about it! Yes the symptoms can ebb and flow. Absolutely the symptoms make it hard to care for my children...probably similar in age to yours.

Accupuncture is one treatment that I almost tried, but didn't because i'm opting for surgery instead. It is a relatively low-cost option ($50-75 per visit, I think). I can't really speak to the efficacy, because I didn't try it, but my doc didn't have any other options for me besides surgery and pain meds. I try to focus on my breathing through the pain -- I used to hyperventilate breathing through my mouth and have asthma attacks, so focused breathing really helps me. Just like it is SUPPOSED to help with labor :) This pain is like being in labor ALL the time.

I use one of those airplane pillows and wear it around my neck with heating gel packs stuffed between my neck and the pillow. It makes me feel comfortable and takes the edge off a little bit. Do you have anyone who can help you out and watch the kiddos so you can lay down when it gets really bad? Wish I could help more. Maybe the others have some more suggestions for you. Welcome to our little community! You will find that this is one of the only treatments that works sometimes -- having others around who understand what you are going through :)

Take care and best of luck! Here if you need anything!

Rosemarie
999891 tn?1407279676
Yes Symptoms are often thought to be migraine, this is a common mistake made by doctors until a DX of Chiari is made....


Ray
982458 tn?1390911508
my heart goes out to you, being a single mom has to be the hardest task to deal with when you have chiari symptoms!  I pray you can find answers and relief.  I hope you have family/friends support?!
1041839 tn?1278685446
Hi and welcome to our little group. I have been told some of the same things you have by drs even the bells palsey. When your face falls like that we call them "drop attacks" and they can happen to your legs and arms too. I'm sorry your having to endure this with 3 kids at home. I have 3 kids but only 1 at home during the day. When she wants me to pick her up i go sit down and let her get in my lap. Where do you live? There maybe some places for you to go but dont know where you are. I hope some of this helps. -- Shannon
Avatar universal
I reread and realized I had a typo.  My diagnoses was in dec of 2008.   Thank you all.  I'm just not sure what to do with no insurance and low income.  I live in Aurora, Colorado.
620923 tn?1452919248
COMMUNITY LEADER
Hi...the added stress of ur beig a single parent I am sure is not helping and if u tell a dr that, they will stop listening and assume it is anxiety and stress.....migraines ect....and many r not educated on chiari and it's affects.

Have u tried for state medical assistance?....and u have one of the best chiari drs right there...Dr Oro......Send ur info to him...he does charge a fee to give u his opinions, but maybe he can refer u to a clinic where he also helps out or knows a good dr that is well informed on chiari to help u.

"selma"
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