My daughter has had many MRIs done since her second decompression (june2013) and we have had two neurosurgeons and a neurologist say that her Chiari is completely gone, yet she still at times has symptoms to the point where she can not walk without help and her right side will feel numb. Our surgeon even told us the last time we took her in while she was having symptoms that it was all BS because her chiari was not there anymore. At that time she did not have balance, was having trouble seeing, and no gag reflex. Since then she has had a nerve conduction test done and neurologist said that was normal.
Has anyone else experienced this? Just want to help my daughter and I’m not sure who to turn to anymore.
T, I’m so sorry your daughter is still having these symptoms, it is truly devastating. You guys are not alone, though, many of us are still searching for answers after decompression surgery. Has she been screened for hypermobility? Hypermobility syndrome/ Ehlers Danlos Syndrome (a congenital collagen elastin problem)can cause cranio cervical instability - especially in Chiari patients. It has been estimated that up to 20% of Chiari patients have Ehlers Danlos. This can cause weak ligaments that would otherwise keep the head from moving an abnormal amount in relation to the top of the spine, which is considered cranio cervical instability. There are also types of cranio cervical instability that are congenital, such as basilar invagination. The symptoms of CCI mimic the symptoms of Chiari, and left untreated the symptoms persist and worsen. Unfortunately for us, not very many surgeons screen for this and many patients suffer after an otherwise great decompression surgery. Please look into Ehlers Danlos/hypermobility and the Brighton test. If you are interested I am aware of a few surgeons who look into EDS and CCI with Chiari.
What type of decompression did she have done? Did she get a duraplasty? A plate to the back of her skull?
Are any of these surgeons in Texas? Duraplasty with first decompression (Oct. 2012) all we know is that she has a patch. I just think there has to be something wrong, she is not the type that would fake any of this. She graduated Valedictorian of her class last May, and loves college. She wants to be a nurse to be able to help others. I was heartbroken when our surgeon said it was all BS, I know my daughter and I know that the last thing she wants to do is miss any of her classes. Just wish we could find someone who could help us help her.
Thank you so much for the information this gives us something to look into. I truly believe her, now it’s just finding a doctor who will help. She is not one who wants to live a life like this, she tries to be as normal as possible.