My daughter has been diagnosed with chiari for the last 3 years. This summer things started to take a turn for the worse. Since that time her symptoms have progressed rapidly. In the last six weeks we went to a new neurosurgeon. This has led us from one specialist to the next. She has seen a rhematologist, neurologist, orthopedic, opthamologist, neuromuscular dr, and cardiologist.
They all seem to keep saying the same thing…it doesn’t look that bad and they don’t seem too concerned. Meanwhile, my child’s health is declining rapidly. If either of my other 2 children blacked out daily, had excruciating headaches, body parts going numb and extreme fatigue, I would be at the ER immediatly. Yet they make me feel like its not really something to worry about.
My daughter is 15 and is Fed up. I don’t know what to do. She obviously has chiari (10 mm) she has ehlers and now some form of dysautonomia. I’m just confused…my motherly instincts say its time to stop messing around and a the doctors want to wait.
What are we waiting for and Can permanent damage be done by not acting soon?
Hi, Angela. I don't know much about syringomyelia( fluid filled cyst in the spinal cord - seen on mri) but since it is related to chiari, I'm just mentioning it. It can cause permanet nerve damage. Don't want to get you upset without any good reason!!!
About surgery- it is preformed when symptoms are worse than the risks of the surgery or when the chiari is progressing. Decompression also works for syringomyelia for unknown reasons.
Just make sure you don't give up, because doctor's aren't responding to your concerns! You and your daughter both know something is wrong- you just need to find someone who knows how to interpret those symptoms. Check out Physicians Reccomendations in discussions and/or Chiari Info for Members -> Doctors List, if you don't trust your doctors diagnosis!
I went by the fact that i was desperate enough that when the dr said there was a 33% chance it would help i went for it.if you feel your child cant handle the pain anymore then i would do the surgery. Chiari is strange in the fact that a small herniation can cause extreme pain, numbness vision and swallowing probs ect and a huge herniation may cause no symptoms. It all depends on each individual. The surgery helped my chiari pain 75%. Unfortunately my nerve surgery didnt go as well and now im having neck pain with headaches..... but my chiari only acts up now when i strain or cough and sneeze. As a mother i understand how hard it is to see your child in pain. Am sorry you have to deal with this.
ok, i am 16 and had the surgery over the summer (was 15 then) it sounds that she has a similar case to mine, my symptoms had progressed rapidly, and i and been to just about every type of doctor there is. my parents and i had been debating the surgery for a while, i do not believe that there is a time when u just "know" when to have the surgery, but i got it when i just couldn't handle the symptoms any more. they were ruling my life. now i got the surgery and it did abslutly nothing for me. but i have heard of cases where it completely made things better. and i still have hope as it can take up tp a year for the symptoms to go away. now if you dicide to get the surgery i would recommend my surgeon, dr. erik tumble in orlando florida. he specializes in children with chiari. i you have any questions or your daughter wants to talk to someone who has been in her situation just message me and i would be glad to help in any way that i can.