My son was recently diagnosed with chiari I with syringohydromedlia with diminished csf flow. We have seen two neuro surgeons one is telling us just to have the decompression and the other is saying the dura needs to be done too. He has diminished feeling in one leg ,back and shoulders. They both agree that it needs to be done before the end of the year. Looking for answers. Also any parents that can help me know what I should be expecting.
Mint, I agree with Em. Opening the dura will increase risk for infection, including Aseptic meningitis (treatable)and chance CSF leak (also treatable either with a repair surgery or waiting for natural healing.) each surgeon has his own rates of infection and CSF leaks, ask him for his incidence rates. If a surgeon opts not to perform the duraplasty because it causes frequent comPlications then find a different surgeon. Leaving the dura be and only removing bone is often not enough to relieve the blockage of CSF and symptoms and leads to continued suffering or another surgery.
If you decide on a only-bony decompression you will also need to know if they put a plate to the back of the skull. Some surgeons don’t use a plate. Some patients without the plate get an intense buildup of scar tissue at the same area that what meant to be cleared, causing the same problem and symptoms.
These are tough choices and I don’t envy the position you are in. You are being great mother, researching and gathering information is the best thing you can do for your son. You will make the right choice, just feel you are informed 
Has he been screened for Ehlers Danlos Syndrome/ hypermobility? If he is hypermobile he needs to be screened for cranial cervical instability too. Cranio cervical instability requires a fusion which can be done under the same anesthetization as the decompression. You can google the Brighton Criteria and the Beighton Criteria to see if he might fit any if the criteria. If the NS you are looking at doesn’t know about the prevalence of EDS and Chiari I would walk. Please keep us up to date and feel free to ask as many questions as you need. How old is your boy? If it’s age appropriate tell him we are here for him too.
Jenn
Thanks so much for the information and support.
jcdemar said:
Mint, I agree with Em. Opening the dura will increase risk for infection, including Aseptic meningitis (treatable)and chance CSF leak (also treatable either with a repair surgery or waiting for natural healing.) each surgeon has his own rates of infection and CSF leaks, ask him for his incidence rates. If a surgeon opts not to perform the duraplasty because it causes frequent comPlications then find a different surgeon. Leaving the dura be and only removing bone is often not enough to relieve the blockage of CSF and symptoms and leads to continued suffering or another surgery.
If you decide on a only-bony decompression you will also need to know if they put a plate to the back of the skull. Some surgeons don’t use a plate. Some patients without the plate get an intense buildup of scar tissue at the same area that what meant to be cleared, causing the same problem and symptoms.
These are tough choices and I don’t envy the position you are in. You are being great mother, researching and gathering information is the best thing you can do for your son. You will make the right choice, just feel you are informed
Has he been screened for Ehlers Danlos Syndrome/ hypermobility? If he is hypermobile he needs to be screened for cranial cervical instability too. Cranio cervical instability requires a fusion which can be done under the same anesthetization as the decompression. You can google the Brighton Criteria and the Beighton Criteria to see if he might fit any if the criteria. If the NS you are looking at doesn’t know about the prevalence of EDS and Chiari I would walk. Please keep us up to date and feel free to ask as many questions as you need. How old is your boy? If it’s age appropriate tell him we are here for him too.
Jenn
Hi, My daughter was diagnosed over 2 years, we have tried to avoid the surgery. We had a CFS study done summer of 2013. They corrected the atlas and it helped the CFS, but the past six months she has started to get numbness and weakness in her extremities. I am scared surgery is inevitable.
I am interested in the responses you will receive. As a parent it is really hard to know what is the right thing to do..
Thank you,
Robin