Doing our research and listening to our gut

I know the three previous posts don't really scratch the surface of what we've been through with our little Dani J, but I hope they give you some background on her condition. It's hard to believe we have been on this journey for a year now.

Since Wednesday of last week we have been trying to get our bearings emotionally and also beginning the hard work of researching next steps. Dr. Cohen's doubt about doing another decompression so quickly, particularly with the C2 and C3 now involved, just stuck in my head and my heart. I instantly had a gut feeling we had to look for an option other than just removing more bone.

Some of you may remember there was a little boy, Josh, who was Danica's age and had his first decompression two weeks before Danica at Rainbow Babies by Dr. Cohen. I posted on a Parents of Chiari Children message board last week about Danica's need for another surgery and Josh's mom instantly posted back to me. We had been out of touch for several months because the kids were doing better, but now Josh had regressed and had a RE-decompression last Friday at Rainbow! I finally spoke to Jamie on Friday for two hours. This conversation gave me even more incentive to get several other opinions and explore other procedures before we move forward with Danica's next surgery. She shared how much harder this was on she and Josh the second time around. The surgery is even more invasive, requires a much longer surgery time and involves much greater risk because of opening the dura and then having to put a patch on her brain over the opening. The child then needs steroids to help them not reject the patch. This opening introduces very dangerous risks of leaking CSF fluid as well as meningitis. I just can not imagine putting us all through this again with only a small chance of it being truly successful and then finding ourselves back in the same place in six more months. I just can't believe that continuing to cut away Danica's spinal structure and making more room for her brain to fall and put pressure on her spinal cord is the only option.

In all our research we found several pediatric neurosurgeons who believe cauterizing or removing the cerebellar "tonsil" (the part of the brain that is exposed) is optimal over continuing to decompress. Their research shows the tissue is already damaged and not functioning properly anyways. This is very controversial because the fundamental tenant of most neurosurgeons is to preserve brain tissue at all cost. In Danica's case it makes complete sense that we address the cerebellar slumping of the brain rather than continuing to take bone and make more room for the brain to be "swallowed" up by the spinal column. One of the surgeons who performes these tonsillectomies is Dr. Herbert Fuchs, Chief pediatric neurosurgeon at Duke. I was able to talk to his attending yesterday at great length about Danica's case and their approach to cases similar. They do many "re-do" surgeries for children who have had a failed first decompression. (By "failed" I do not mean that the choices made by the neurosurgeon in the first surgery were not appropriate. All of these surgeries have a chance of working or not working and only time will tell. Particularly in a child as young as Danica the chances were she would need further intervention at some point.) She said opening the dura is ALWAYS necessary in a second surgery but most likely intead of removing any bone they would cauterize the cerebral tonsil. Sometimes they will even reconstruct the C1 (and C2 if applicable) if too much bone was taken in the first decompression.

It gave me hope that we may be able to find someone who is able to help us beyond just another decompression and do something that will give Danica more lasting relief from her symptoms as she grows. We are not completely clear on the long term affects of removing this part of her brain. We know there will be extensive therapy following surgery to help her with the motor development issues. We feel like this is still superior to not knowing what kind of damage is otherwise occuring with the brain being pinched and growing pressure on her spinal cord.

The next step is getting Danica's scans and operative report from Rainbow and Fedexing them to Duke. Dr. Fuchs will then call us to discuss. We also have sent an email to Dr. Cohen asking him about this procedure and some other things regarding moving forward. Based on Dr. Cohen's response we may seek a third opinion.

So, that's where we are today. It's the strangest feeling to have all the real life stuff going on around you when you are facing something this huge. Our biggest need right now is for prayer. We need direction to the right doctors and wisdom to know what we should do next. As we look into Danica's little face everything else fades away.

I will post updates here as we have them. Thank you to everyone who has continued to love and support our family through this.