child 10 years old with CM1.5

[littlebit43]

New to the seen and need support group. Numb and confused. Can someone help?

[selmaS]

  My Deepest Sympathies on the loss of ur Mother -In -Law, may she rest in peace.

Oh, ok...so this was not an office dx for Chiari and surgery,,,,got u there....

Good luck on the 15th for the swallow study.

[Cure4chiari]

I forgot to mention; My son went through the swallow, sleep apnea, and Seizures study. All came out to be normal. That is normal to Oregon Drs who did not understand what to look for. Yes once again to be called a mother who had Munchausen syndrome. If I did not listen to my heat and the words of my son would be paralyzed. Follow. First your child's heart! Then yours.

[Cure4chiari]

As I read your post; I am reliving everything I went through with my son. Hell and back, only to return to hell. In our condition Chiari is a inheritance condition.  Never realized until my middle child was diagnosed,that is years of being called a crazy mom; oh yea all made up in my head!. I live in Oregon. Travel to Chicago to meet DR. Frim who not only recognized my son had Chiari yet so did I. Long story short if it was not for Dr.Frim I would be dead. Yes; details , details. Myself and sons are one of the studies from Duke University. I do not want to be negative. Listen to your child! "Pray no surgery."
My son because of the lack of knowledge here in Oregon; now has permanent disability. Disability that could of been avoided, if only he had surgery years before.Long story short! listen to your child not the DR.

[littlebit43]

thank you for your help/support Linnielou

[littlebit43]

When u say surgery do u mean for the apnea or the chiari...sorry, my chiari brain is confused at this point,...lol...sorry.

  I hope all goes well with the swallow study. .

I was saying that the sleep study doctor did not recommend surgery for the sleep apena. However, he is not THE NeroSurgon about the Chiari.
We missed our appointment with the swallow test, because of a family emerg. with my mother-in law who passed away Oct.4th. We will try again the 15th to conclude all the testing and then meet again with the NS for all the results and pray no surgery.

[linnielou232]

To me gettng all the test done and then making a decision that would be best for you and your family is the best way to go.  It sounds like you are in good hands and your getting the testing done that is needed.  Glad to hear you are on the jorney for answers.  Wishing you and your family the best, and let you know we are here for you if there is anything we can do for you.
Linda :)

[littlebit43]

There may be a minute amount of apnea but not enough to have surgery to fix. Thanks for your replys.

[selmaS]

  Does that mean there is sleep apnea?.....good luck with the next test....

[littlebit43]

Had the sleep study done and according to that Dr.  he says he would not recommed surgery. We go next week for a CT scan and Swallow test.

[selmaS]

  I am happy to hear u have a good Chiari Dr for ur DD.....I have heard of this Dr b4 and have heard good things....u will have to keep us posted as to how u like him and how ur DD is treated.

No one wants to have to deal with this it is not a journey neone would choose...and I understand ur DD not wanting surgery....but ne one  that is sick long enuff welcomes nething that may help....and u have to wait to see how urgent surgery is....I pray all goes well.

Know u r not alone, we r here : )

[littlebit43]

Thanks for your answers.

I know that the Chiari Malformation 1 is a combo of 1 and almost a 2 with the level going to  up to a 5. So, my daughter is a 1.5. We have only met Dr. JW Oaks of children's hospital of Alabama last wednesday who then told us this devistating news. We wanted a second opinion OF COURSE but when I went on-line to find more info subject and doctors, THIS WAS THE DOCTOR that others went to for the second opinion. We do a sleep study tonight.

Our daughter has not had a headache in 3 days now and seems to be her self no pain, no dizzyness, keeping food down etc...
She of course does not want to do any surgery. I don't blame her but I don"t know her pain and only want to do the best for her. This whole thing just can't be happening to her/us. Anyway, it is and we are trying to deal and pray,pray.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur little one and yourself are having to deal with this condition....if u have read ne of the threads here u will see many of us also have other issues and or conditions related to chiari as well. So , do be sure u find a Dr that will do testing to rule all of them out....

By 1.5 are u implying the length of the herniation?....please do not let that get to u find out if the child has a CSF obstruction, sleep apnea, syrinx, tethered cord disk issues, ehlers-danlos....ICP, POTS and a few others.

What symptoms does the child present with that u did the MRI to find the Chiari?

Please use the list of Drs to research Drs....unfortunately our list does not indicate which Drs will treat children so u will have to ask...as some of them do and some do not.

The list is also available in the Health Pages and is not a referral and not all on the list may be true chiari specialists but this is a list of Drs members here have been to and liked...so please check each Dr b4 u see them, then see a few and compare to find the right Dr for u and ur child.