Possible C1M for two of my girls 11& 8

[Tarajo4]

A couple weeks ago I learned that my youngest(8) may have C1M. I was alarmed because she had seem a pediatric neurosurgeon almost a year ago. He said her CT looked fine and that she was having hormonal painless migraines brought on by internal hormones. Last may 2012 she experienced tingling in her legs, moved up to her arms, numbness and loss of speech. No headache. No pressure. Nothing like a headache or migraine. Yet they still diagnosed Painless Migraines. Then 4 weeks ago she had the same symptoms only 10x worse. She went into a full on anxiety attack. Couldn't breathe and her tongue even went numb. Still saying PM. I took her to her ENT last week. He gave me the CT report. It said probable C1M. :( I was so angry the Neuro doc hadn't mentioned that. We just had her MRI done Friday. Waiting for results. Hopefully mid this week. I'm praying that it isn't C1M. She's 8. So scared and afraid of her symptoms. It's hard to calm her.  Dr. Gave us oxygen to have on hand. For some reason she said it helped her feel better when they put it on her in the ambulance.  Also, she is experiencing sleep apnea over the past year. She calls it nightmares. At least 3 times a week.

Her older sister started having PM (?) in May 2011. She has had 4 now. Similar symptoms as her younger sis but not as severe. Still all there but normally only on one side of her body. She also does have pressure on one side of her head after other symptoms subside. We had her MRI done Friday also as we have read that C1M can run in families.  My older daughter was starting to physically change at the time of her first PM and that is why they decided it was hormonal. She started her cycle two months ago so they said it must have been internal hormones. Doctor wanted to put her on Beta Blockers but we refused as she only has these symptoms 2 x a year. So her gave her pain meds and nausea meds. which is another symptom. :(

We are very concerned and I can't sleep much. Worrying about results and what could happen.  With C1M would they be experiencing symptoms more often than two times a year? What are your thoughts on my girls stories? Have you heard of it being that bad in young children?

Glad I found this thread. We really need some thoughts from others who have this too.  Thank you. Prayers for my girls would be much appreciated. Whether they have C1M or not, these symptoms are so scary for them.

[Tarajo4]

Thank you Selma! You have been so much help!! xoxo

[selmaS]

  Ask for copies of the MRI if u do not already have them....for both ur girls...so many Drs ignore this condition...and more testing will be needed.

My herniation was not large, but I also have issues with my odontoid it was not completely retroflexed, but enuff to block CSF along with the tonsils and mine were 4mm and 6mm so not much larger then ur DD's...I had surgery almost 4 yrs ago now...and it has helped me.

U need a Chiari specialist to review the MRI's and other testing.

That unfortunately is what we have dubbed the "Royal Chiari Runaround" so many Drs have this same attitude, it is easier for them to ignore what they do not understand...very frustrating...but u r right to go for that 2nd opinion...Good Luck <3

[Tarajo4]

Got results yesterday. My older daughters MRI was normal. Then they told me that my younger daughters was normal too. Except she had a borderline cerabellar tonsular ectopic. And that it is common and we shouldn't pursue anymore testing. I'm frustrated. Because from what I read, that is CM1. She measures 4-5 mm low. I went yesterday to get all results in my hands. We are going to get a second opinion from a specialist who looks at these everyday. At that measurement and those symptoms, how could they not want to test more. I'm so mad.

[selmaS]

  No worries. Do keep in mind anxiety is a symptom of Chiari....and when looking at the MRI's it is not the length but the width if there is an obstruction and sooooooooo many Drs only look to length to determine what is going on....some can have a 13mm herniation and no obstruction while others can have a 3mm herniation and be corked up...so ask about a CINE MRI to check CSF flow .

I am so happy to hear she is feeling better <3

[Tarajo4]

Thank you Selma! I didn't think of keeping the oxygen near when she was in bed. I will keep it in my room now. I am anxious to see results from the MRI's. They said Wednesday. So I am going to call that afternoon.

We will definitely do some sleep apnea testing too. We have appointments to see a cardiologist in a couple weeks. Then an endocrinologist too. Trying to find answers.

Their MRI's look normal to me. Nothing like some of the more CM1 pics I've seen online. But I'm not a professional either. Just a momma hoping.

Our youngest also has issues with stress, anxiety and gets upset a lot. We know it had to be a home habit because she is just fine at school. We are working with her on a new plan that is working right now. Two days in so far and she is really trying hard. Yay! We want her to be able to calm herself better because of the anxiety when it comes to these attacks. We told her at the end of every day, with no huge outbursts, she will get a tiny prize. Whether it be a mini candy, gum, time alone with us or a sticker for her sticker book. At the end of a week she will earn a small prize and a month a large prize. She loves this idea. And we love watching her be her best! She even said this morning was easier now, when getting ready for school. Big thumbs up. Yay!

Thanks again for your comment. I hope to learn more here and get more feedback too.

[selmaS]

  Hi and welcome to the Chiari forum.

The fact the Dr did not tell u about the CM I is most likely the least of ur worries....it is sooooo common for Drs to feel Chiari is an incidential finding they do not tell patients.

What u need to do is educate urself on what Chiari is and how to select a true Chiari specialist....and make sure ur children r tested for all related conditions.


We r all different as to how and when we r affected....as u said ur younger one is affected more so then the older DD.

  Sleep apnea is a huge issue for Chiarians and more so for children  so do have that testing done...having oxygen  is good , but make sure she is sleeping with it if she has this issue.

Look to ur family history as many of us can trace a family member with similar symptoms and issues but do not have a DX as MRI's were not always available to use to dx.

Let us know how we can be of help <3

[Tarajo4]

Having trouble sleeping. Worrying about my girls. :(