Chiari Online Support Group

Concerned parent seeking information and similar stories


#1

Seeking information. My 2.5 yr old son was recently diagnosed with Chairi Malformation. we meet with the neurologist This Wednesday. I am looking to find out what questions we should be asking as I have read Not all Dr's are created equal and we have had are battles over the past 2.5 yrs with certain ones.

so this is gonna be a bit lengthy but i feel i need to start at the begining.....

A little about our situation. . It has been a long battle to get to this point. Fortunately and unfortunately our son is a extremely happy child but has had major health issues since birth. He had major troubles breathing, eating, sleep apnea, always sick with cold like symptoms. He was brought into the E.R more times than i can count., seen more doctors then i care to even think of. For 13 months we could find no doctors to take his issues seriously and they kept putting it off as he has a cold/asthma/allergies. After many more visits and doctors our son was diagnosed with trachea malasia/ they then determined he had severe silent reflux then determined that he aspirated on everything he swallowed. after the aspiration was diagnosed he had surgery putting in a g-tube and he also recieved a fundo. the g-tube for feeding him and the fundo to stop his reflux. we wanted to wait for awhile to allow his body to heal and see if any changes happened. happy to say that the surgeries helped him tremendously but he is still far from normal. his lungs are badly damaged from the abuse they have taking from us feeding him while trying to figure out what was wrong with him. recently we had an mri and ct scan and while at the ER for another incident we over heard them stating his cerebellar tonsillor decent is 5 mm. we asked the nurse what that ment and she said it was chairi malfunction. we meet with the neurolgist on wed but are looking for advise similiar stories if any and info on how we should proceed. problems we are still dealing with.. he is sensitive to light and loud noises, headaches/neckaches, low energy levels/tires easily, hard time breathing, restless in his sleep, weak immune system and dark veins/pockets around his eyes. He has excellent motorskills however and does not have any dizzyspells that we are aware of.

On a side note his cousin has scoliosis.

Our oldest son is super sentive to light (can not go out in he sun with out sunglasses), sensitive to loud noises infrequent breathing issues(kinda gasps and quick breathes) ventalin does not help, headaches, always tired, had sever sleep apnea until they removed tonsils and adnoids he is now 5

our daughter is completely normal health wise.


#2

Wow! Not sure where you live and you are correct they are not all created equal. I feel very blessed I had a great surgeon. The surgery doesn’t fix all symptoms it is an improvement and the recovery is rough just to be honest. I was at a point I had no choice! It sounds as though your child really needs surgery too. My advice is pray God leads you to the right doctor for your child. Hang in there this is a lifetime fight that most don’t understand! :slight_smile:


#3

We still have to speak to the neurologist and see what he recommends. Just wondering what questions we should be asking him. He has a surgery scheduled for October for his esophagus but we are not sure if we should now proceed. We live in edmonton alberta.


#4

I was your sons age when I experienced Chiari drop attacks which were misdiagnosed as epilepsy. The drop attacks happened only when i got hurt or too excited or upset. I would pass out and quit breathing. I was treated for epilepsy until I got so sick I couldn’t undergo treatment anymore. My parents thankfully found Dr. Reisner at The Children’s Hospital of Atlanta, Ga. He immediately ordered an MRI and I was properly diagnosed with Chiari Malformation type 2. I had decompression surgery on July 2, 1999. My parents tell me stories of my recovery. That year, two days after major brain surgery, I was running as fast as my 2.5 year old legs would let me around the yard watching fireworks dragging a heart monitor behind me. Happier than ever. Because of having the surgery so young my doctor told my parents there was a 50/50 chance that I would have to undergo another decompression surgery. I didn’t start having difficulties until I was about 13. I started passing out again but I never quit breathing. I went to my annual check up and my cerebellum was fine and my spinal fluid was flowing correctly. Since then, I haven’t gone back to my neurosurgeon. Since then, I’ve been diagnosed with extreme hypertension for someone my age (18), diagnosed with glaucoma, osteoarthritis, scoliosis, and chronic migraines. Obviously its time for me to visit my neurosurgeon again to make sure its not the CM causing these symptoms. If so its not rare to have to undergo a second decompression surgery. Its a very intimidating experience and its nothing to take lightly but I believe if your son gets the decompression surgery he will find relief. I hope my experience helps in some way and I’m free to answer any questions you have. I pray for your sons recovery and for you and your family.