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Not another one!!!

Postby hayla2 » Tue Jul 17, 2007 6:54 pm

Got bad news today. I don't need it. I am still recovering from my surgery. I have a 9 year old who was diagnosed with cm/sm at age 5. I got a call from the Pediatrician today. My 12 year old daughter has just been diagnosed with CM. This is so not fair. I HATE THIS DISEASE!!!!!!!!!!!!! When will this nightmare be over?

My oldest boy has migraines, neck pain, drop attacks, joints fall out of socket, memory fog: yet the MRI doesn't show a herniation. He has all the symptoms yet we can't figure out what it is.

Now I will get my youngest tested and pray and beg God that he doesn't have it too.

I feel so over my limit of being able to handle life right now. I just want to quit sometimes.
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Postby angie7 » Tue Jul 17, 2007 9:03 pm

Oh sweetie, I am so sorry...That has to be the hardest thing in the world!! Know that all of you are in my thoughts...

I do want to say something about your oldest son that has all the symptoms and no herniation. He very well could have ACM 0. This is what I have. ACM 0 is mostly seen in children but sometimes in adults. My ACM was herniated to 0mm. Not enough for a regular doctor to mention it b/c unless it is classic 5mm+ herniation. So in other words, unless it is 5mm or more, they wont say anything. I was told that I didnt have ACM from a local doctor and was told that my sx were caused from something else and that I can come back when I couldnt walk, and then maybe they could do something. I went on to find Dr Oro (ACM/SM specialist) The first time I saw him he said "you do have Chiari and I want you to have a cine mri" Which I did and it showed minimal to no flow of csf to my brain. He planned an immediate decompression surgery the following month. Thank goodness I found him or I might not be typing this right now b/c your brain cant live on no csf flow.

I guess my long point is, even though your son isnt showing any herniation, he still could be herniated enough that a regular doctor isnt comfortable dx but herniated enough that it is causing major problems. I would send the films to a specialist and get their opinion. Most do it for free (or a small amount) and give you their opinion over the phone...
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
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Postby Ryzing » Tue Jul 17, 2007 9:09 pm

I'm very sorry to have read this news about your daughter's recent diagnosis. Who better to set an example of strength and perseverence than her mother? Even though you want to quit, God knows you won't. And so do we.

Go in faith,


p.s. I will be praying for your family....
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
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Postby specialmomx2 » Tue Jul 17, 2007 10:42 pm

(((Hugs)))) Sweetie,

You are living my worst nightmare. I will be thinking about you guys and sending positive vibes your way.

"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

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Postby Sandy » Tue Jul 17, 2007 10:45 pm

Healing and blessings to you through the airwaves, Melissa.

I'm so very sorry. I'm here for anything I can do. You are very loved and again I'm so sorry. Hang in there. Be strong.

gentle hugs,
sandy :D
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Postby Debster » Tue Jul 17, 2007 11:18 pm

This is so very stressful for your family. I have increased anxiety because my 13 has complained of chronic neck pain since he was 7.....which was way before I was dx'd with ACM-1. For the past 2 months my 7.5 year old keeps hyper extending his neck and saying his neck is bothering him all the time and he feels like he has to keep cracking it.

I have an appointment at TCI in September, and I am thinking I should probably get MRI's for both of them to lay my mind to rest. I have been procrastinating calling their pediatrician because I am so uncertain of what the future could hold for them. Trying to deal with all of this is very terrible and any parents worst fear. I am so sorry to hear you have been dealt so much. ACM is not fair.

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Postby Gracie Rose » Tue Jul 17, 2007 11:30 pm

I am so sorry for your news. I know how you feel we have 8 with EDS and 5 so far with ACM. You feel like it just never stops.

Sometimes it's like triage....who gets what first !! We will keep you in our prayers. We're all in this together.

Lisa in WA
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Postby lovemyblessings » Tue Jul 17, 2007 11:39 pm

(((Hugs))) We have had 2 tested. Keegan obviously has it, Marah-Lynn doesn't. Quintin is being tested Thursday. I wish I cold just get them all tested at once, but they won't test unless there are symptoms.
Blessed Mommy to six amazing blessings here with us
John 10, Marah 8½, Keegan 7½, Luke 5½, Quintin 4½, and Ruth 3
Caleb Logan expected in August and
And three blessings waiting in Glory, including Selah Marie born @ 17 weeks 4/15/2009
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Postby Fraggle Nan » Wed Jul 18, 2007 7:05 am

I am so sorry. Just take it day by day, minute by minute if you have to. I am worried about my guys, too. My oldest is having his 1st MRI next Thurs., while I am in New York having TC surgery.

I'm praying for strength and healing for you and wisdom for the doctors.

Take Care,
Fraggle Nan
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Postby loren67 » Wed Jul 18, 2007 8:43 am

i'm praying for you and your family.
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Postby Janice » Wed Jul 18, 2007 8:56 am

You are your family are in my prayers.

Take care,
GOD Bless!

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
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Postby the 4ks » Wed Jul 18, 2007 9:18 am

I will be thinking of you and your family. We have to wonder WHY? These poor children.
keep us posted.
the 4ks
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Postby hayla2 » Wed Jul 18, 2007 9:06 pm

Thanks for the prayers all. My son has a follow up with the neuro on friday so I am going to try to get my daughter in that time too. She is having facial twitching too. I am concerned that it could be seizures. My youngest daughter has seizures and she has cm/sm. This is all crazy. But God is still on the throne and still the boss! Melissa
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Postby Ryzing » Fri Jul 20, 2007 3:08 pm

Yes, He is still on the throne...and if He led you to this point, you know He will not leave you here to deal with this alone. He has a plan - and somehow, He will make it work out for your good. (If only we could see it like He does! :roll: )

Keep us posted,

Diane :D
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Postby petsmom » Fri Jul 20, 2007 9:53 pm

Oh Bless your heart...and your children

When I read about situations like yours I know I am truly blessed to be as well as I am. I am uplifted to realize how many of us here are Believers. That we do not have to face all of this alone, relying just on our own strengths. I will put your family on my ever growing prayer list.

Dawn, TNgal
I am not my disorder. It does not define me as a Person.
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