Chiari Online Support Group

Help Please... New diagnosis, 8 year old son

My 8 year old son was recently diagnosised with a 9mm Chiari w/ small sphinx in spinal cord. We do not see nuerosurgeon until 9/8/17. I am a wreck. He has mild intermittent symptoms, headaches, ear pain, tingling hands. He had issues with swallowing and reflux during infancy and still prefers to eat, “easy to eat food.” He had stitches, staples, and glue all before age 5 due to clumsiness. His teacher told us that he was having a hard time concentrating, a complete 180 from earlier in the year and suggested something was wrong. That’s how our journey began. Two months later, this is what they found. When we meet with the neurosurgeon, what can we expect? What restrictions should we put on our child? I’m afraid to that activity could trigger onset of other symptoms? Do we want surgery? I know these are case by case, but it sounds like once damage is done, it cannot be reversed. Why then do people wait? Any information would be helpful! Thanks so much. Worried Mom of 3 boys, Dylan is my middle.

Hello dylansmom. I am so sorry that you both are going through this and prayers are with yall. I was diagnosed 10/2014 after many years of going through the same symptoms. First, take a deep breath even as hard as it may be, goodness knows it’s hard. I am 43 and going through my second surgery tomorrow. I have Chiari Malformation Type I with Cervical Spina Bifida and hydrocephalus. Also, Syringomyelia, Cervical Radiculopathy Bilaterally upper extremities. I had and still have all of the same symptoms he has. While you prepare for the appointment, remember that his symptoms are debilitating to him and your compassion for his pain will cause you to be nervous all day every day. Stay strong and research his diagnosis with a fine tooth comb. Be prepared to know all about it. Some information online is ridiculous but some is very credible. There are websites that will help you prepare for his appointment and will show you what to ask his doctors. My first surgery was just to decompress the cerebellum herniation but 2 years later just made it worst. Understand that surgery may not fix everything. Also, expect that after meeting the neurosurgeon, it may take a few months for the proper steps to be taken and this is okay. The restrictions are what he knows he can or can’t do. He will know what makes him hurt worst and what brings him comfort. The research will help you to know what to look for. Since our condition is not curable then treating it is the only way to get relief. Some people wait because they are either too scared of surgery, afraid it will not help, or can not find a doctor that actually know what they are doing. In other words, they don’t know enough about Chiari to treat it. I know how terrified you are because I was there myself but you will become stronger. I don’t know if this will help but I sure hope it does. I also don’t know if I can list any sites for your research but if you want and it’s easier you may email me anytime. Just reply and I will be more than happy to help further.

1 Like

Here are some research options:

http://csfinfo.org
https://www.ninds.nih.gov/

Sorry to hear of Dylan’s issues. Glad to hear it sounds like he is doing well otherwise.

I do routinely recommend finding a neurosurgeon who is comfortable with Chiari(go to their web site and see if Chiari is even mentioned on it).

In pediatrics, you would also, ideally, see a pediatric neurosurgery board certified neurosurgeon. You can review pediatric boarded neurosurgeons at www.abpns.org .

Neurosurgeons are trained in adult neurosurgery, and then, if interested in pediatrics, complete additional training(a fellowship) in pediatric neurosurgery. By confirming pediatric neurosurgery board certification, you can ensure that the neurosurgeon to whom Dylan has been sent has a least a minimal of training and interest in pediatric neurosurgery.

It may be comforting to know that >80% of patients with a Chiari I malformation never need surgery. In most patients’ cases, the decision to proceed with surgery is based on symptoms, confirmed by images. You certainly want to be sure that Dylan has achieved maximal medical management before considering surgery, particularly when the symptoms are general(difficulty concentrating could be from so many sources).

In terms of restrictions, address that with your treating MD(and each MD has their own biases).

I hope these thoughts have been of some comfort.

Dear Dylan’sMom,

      I hope you are finding what you need for Dylan.   If this will encourage you - the handful of under-12 kiddos I've met with CM have all recovered 100% from their surgeries.  (they went to Duke U. pediatric Chiari's specialitsts)  Not so with adults.  But, kids I've met have recovered quite well!  Againt - these are only the ones I've met.    The most notable one was a 6-year old Kinder girl.  She was diagnosed with epilepsy.   Every day,  she had to gobble a cocktail of meds to keep her seizures under control.   Then, she was diagnosed with CM - had the decompression surgery - and is a normal little girl now.   No symptoms whatsoever.   Yay!    Hoping the same for Dylan....

I am just so glad to hear that they can diagnose these so much earlier now. I was 48 when mine was diagnosed and I truly had the same symptoms as Dylan. Very clumsy as a child, with concentration issues my whole life. I had the surgery two years ago. The only damage, which I would think would be minimal at 8 years of age, would be any nerve damage he may have, and I think that would be, say, if he has numbness in his hands or feet, but he is only 8 and I would bet that nothing will be permanent at his age. It was with me, but please remember I walked around with mine for 48 years. 40 years longer than Dylan. I struggled my whole life, but Dylan does not need to. I think this sounds promising. So just keep your spirits up mom, I felt compelled to write you, I am a mom too, and I have a son with Cystic Fibrosis that I raised and another son, and I worked in the medical profession for almost 30 years and I had this surgery, so hang in there. I think catching this early is a really, really good thing.