Chiari Online Support Group

What consistent symptoms even after surgery warranted MRI and subsequently another surgery?


#1

Hello! My daughter had decompression surgery in 2/2017 after finding she had 19 mm herniation of cerebral tonsils. She has been having headaches everyday at school and is taking ibuprofen like it’s going out of style. If we don’t give it to her she will have a really terrible headache until she can sleep. Of course we are concerned that is tearing up her tummy and liver. We have been trouble shooting prevention. This week it is no swinging or running at recess.
What consistent symptoms even after surgery warranted MRI, for you or your chiari warrior, and subsequently another surgery? She is terrified to have an MRI but it may be in order. Waiting on neurosurgeons recommendation. Also what other kinds of ohysicians specialize in chiari? Thank you all!!!:purple_heart:


#2

If it’s getting in the way of her everyday life after a decompression often times there are other underlying things that caused the decompression surgery to fail. I would highly recommend getting her in to see a true specialist. I don’t know where you live but there are several in this country that are amazing. Typical neurosurgeons that don’t really know chiari just do the old fashion decompression on everyone and treat us all the same. They are discovering more and more that none of us are the same. She needs to be looked at as unique and looked at from all angles to truly give her the best outcome. All true chiari specialists are neurosurgeons. But not all neurosurgeons are chiari specialists


#3

Thanks so much!!


#4

Be aware that over use of ibuprofen with CAUSE a headache. You can’ use that item every day or multiple times a day on a regular basis.

Considering she’s having headaches every day at school you may need to look at what’s happening at school. Stress can certainly cause headaches.

azurelle


#5

Hello @AKKent ! I am sorry your daughter is still having headaches every day at school. When she had surgery, did the surgeon go into the dura and put a patch to prevent brain sag? I had surgery 11-28-16 when I was 32 years old and it was compressed about 14-15 mm. Still have headaches, but its based on the weather and barometric pressure. Plus I was diagnosed with Postural Orthostatic Tachycardia Syndrome during recovery. The patch can help prevent from anything moving after surgery. Has your daughter tried 100% pure essential oils for headaches, like peppermint or Eucalyptus or Lavender. Essential oils are amazing :slight_smile: ! How many surgeons have you looked into? I had mine done at the Wisconsin Chiari Center and I live in Texas. Hope everything works out for your daughter and you! Good luck :slight_smile: !


#6

Hi- have you checked your daughters eyes?
I have Chiari and when going to college I suffered daily with headaches and migraines, turns out I had light sensitivity, the white lights at school killed me! I bought light sensitive glasses and improved it. Also I have issues with gluten, once I stopped eating it I stopped needing ibuprofen. I hope this helps your daughter. Good luck.