My 1 year old has AM 4mm

[MACHO2013]

My son was diagnosed with ACM and his is 4 mm. ....He has a few symptoms but nothing like what I'm reading. ... How ever he can't talk so maybe he does. .I am scared because this Monday July 7th 2014 he week be having surgery ....I don't understand why no matter how the doctor explains it all I know is he is sleep apnea and throughout all the MRIs and consistence visits to the hospital they said it has to be done. .... He doesn't look or act like he is in pain but he is. ..... I'm so scared that he who suffer and I can't help heal his pain. .... Had any one had surgery on a 1 year old? If so how did it go and what was the out come. .... I'm in pain and hurting because I can't fix his problem. ..... Please pray for my son. ..... and any advice will be taken. ..we live in Tampa Florida and if any doctors that you know of Is worth going to please let me know in less then a week on Monday morning he had his surgery

[selmaS]

  Hi and welcome to the Chiari forum.

If u would like a prayer thread posted for ur son please post on the surgery date thread and I will gladly post one for him.

Chiari can cause onset of some growing delays.....so it is possible that is why he is not talking yet, the sleep apnea is the bigger concern and I am sure that is why they want to go forward with surgery...as a parent u will want to make sure he is on oxygen post op until he is breathing normally....

As for not knowing if he is in pain, for those of us with congenital Chiari, we tend to not complain as we compensate to avoid pain and we consider how we feel to be normal.....so I went many yrs and no one knew  what pain I had....for a child he may appear tired or grumpy....withdrawn...crying for those with Chiari creates more pain, so that is not always a way to determine pain is present.

I am sending prayers ur way and will bump up the prayer thread so u can add ur son's name and surgery date.

[MACHO2013]

Thank you all for the posts this is the first time I have ever joined a group with the same situation. .....I really enjoy the Feed back and thank you so much. ... His surgery is at 6.30 am , or that's when St. Joseph hospital wants us there. ... but I will be praying for everybody on this forum to not only have success in there times of suffering bit to also bring light to Any darkness and for God to send a special Angel down to every one of us to bless us and hold are hands and carry us into the joy and laughter we each desire. ...... I will keep updating

[kwalker0004]

http://www.kaylieschiari.com/p/masons-story.html
Here's a link to a mothers page about her two children that had decompression surgeries. One for Chiari and the other for basilar invagination. Both stories that I have followed and used to help me educate myself on both of these conditions since I have both. She's willing to answer any questions you may have. Though she traveled out of state to a true PEDs NS that deals with Chiari. She also gives you a list of questions to ask the doctor. Which I find very useful for dealing with PEDs doctors. As mothers always tend to forget to ask something. But be patient and please educate yourself on this condition before your infant goes into surgery, so you know what the Dr is talking about when he comes out. Do some research for yourself. Education is your key. If you had time you would be able to search and seek out many drs before you settled for one. But you don't. So my prayers are with you and your family for a successful surgery. May the good lord be with you all.

[wonderchiari]

Hi and welcome here though feeling sorry for the reason.
I could not understand the part where in you have mentioned regarding  sleep apnea.
i  assume  that you mean to say that you think the reason for your little sons  symptoms is sleep apnea but the dr says surgery has to be done for chiari and you are worried fearing if the  surgery is needed. ..
Your son is really too young to express anything verbally .,so as of now you might perhaps never know his sufferings fully.
  I think that you have the only option to go by drs words because he is the one who views the MRI and decides on the surgery etc .
I sincerely hope that you are consulting a peadriatic neuro surgeon who is well versed in treating chiari   .If you are not sure  do a thorough check in this regard
As you  must be already aware the drs play the most vital  role and that your trust on the drs is very important .
Please do ask all your doubts with patience to the dr however silly the doubts  might sound .
If you wish to confirm if the sleep apnea symptoms are present and might also be a reason for symptoms definitely have a referral for a apnea check  before surgery..
Also Please  ensure that the dr is aware of other  co existing conditions like EDS/POTS /syringomyelia  etc.
I know that syringomyelia can be congenital and be found along with chiari  but sorry I dont know if the other conditions  can exist in an  one  year old infant having chiari )because these conditions  might play a role in  the treatment and also outcome after surgery.
Please do wait for other people here who know in this regard to help .
Regarding seeking advices
This site is very good .,People like selmaS do help a lot by answering your dobuts as much as they know and whenever  they are free .
However If you wish to know how more cases have been treated  I think you can also look for additonal information  by googling on the net  .
A word of caution
if you happen to read negative feed backs Please dont get upset or scared . Remain positive that there are true  positive stories which are not reported.,  because people just move on with their lives after that ,where as the people who still suffer need support hence write their grievances.
Prayers for your son  and best wishes for a successful surgery..

[Twhit123]

Dr Trumble he's in Orlando.