Hi and welcome to the Chiari forum,
I think we met in the EDS forum.....
May I ask what all was done during your DS's decompression...did they do a laminectomy, and dura plasty? If so, what type of patch was used...it is more common for those of us with EDS to have issues with foreign matter ( IE patches made from material other then our own tissue)
It is possible that this is a rejection of something used during surgery...
I am also surprised he is scheduled to go back to school already....It is not uncommon for those of us with this surgery to be out of work for 3 months....granted he is a child and they bounce back quicker then adults, but those with EDS tend to heal slower and he may need more time....
How is he feeling outside of the fevers?
HI we may have met in the EDS forum. He had C1 taken away so as to not take too much and his patch is gore tex.
So yes they did both.
He had his surgery on Aug 13 so was booked out of school until his follow up which was Friday 19 Sep. Now his eos count is high again not crazy high btu higher than normal limits so he is now on his third round of steroids. His WBC is low too which for Broc means a viral infection so with an ANC of 900 something its too dangerous for him to go back to school.
He does take a longer time to heal. He also reacted to his nylon pacth from his leg bypass surgery in 2012. It took a good 2-3 months for his body to accept it. Then we didnt use any steroids at all cause no one seemed concerned.
Broc has a weird immune system that no one can explain at all. He gets viruses all the time sometimes extremely high fevers too.
He still fatigues easily. He was only supposed to go for a few hours in the am for 2 weeks then we will try a little longer.
We are supposed to see immunology in 2 months but if he rebounds from this round then we will see them sooner.
NS said that the only option is to use a patch from his own facia but he said that will calcify over time and cause more issues.
We Chiarians are prone to both autoimmune issues and connective tissue disorders so it is not uncommon for any of us to have the issues he is having......
I do not understand why the Dr feels his own tissue will calcify....there are many Drs that do that in order to prevent rejection issues and infections....mine is my own tissue and I have not have any issues with mine.
We all run a risk of scar tissue forming, but I would rather that in the future then deal with rejection issues of foreign matter...JMHO....
Each Dr is different in how they handle the surgery....
I would hate for him to have to go through surgery again for them to take out the patch and then put in another one. This will be our last course of steroids. Really hoping this cures it.If not then we will have to revisit the issue of taking it out. Unfortunately his hear is not ready for another surgery until its been cleared so we will have to wait and see.
Maybe immunology can offer us some help too.
I will def have them use his own skin in the future. For his OHS they used his own pericardium and we had no rejection issues at all.
I will keep you posted.Thank you
<3 ((hugs)) and Prayers to you both.