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999780 tn?1263671971

Post Chiari decompression surgery - patch rejection

My son 7 yrs had decompression with C1 in August. Since surgery he has had a tough time healing and fevers. His eos count was tested and it was high so he was put on a week of steroids. This was confirmed with a spinal tap where his had high eos in his csf too.

After 2 days of stopping the steroids his fevers started again. We checked his eos and they were even higher so he was then put on steroids for 11 days with a taper. He finished his steroids and has started fevers again. We are due to check his eos count again on Monday. If its high again he will go back on steroids for a month.

He has been out of school for 5 weeks while recovering. He is due to start school this week for half day for 2 weeks then we will re -evaluate how he is doing.

He had a similar reaction after his femoral bypass surgery in 2012. His eos was extremely high and we just monitored it. He never did steroids at all. Eventually his body accepted the patch (nylon) after 2 months.

This time round we are in week 6 so very nearing the 2 months and there is no sign of his body accepting the patch and he has been on 2 rounds of steroids.

I spoke to NS about taking it out and he said that if he used his own facia then it could calcify and that would cause problems. My son does have EDS,CHD and many other health issues.

Please can you give me your thoughts. Thanks in advance.
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620923 tn?1452915648

  <3 ((hugs)) and Prayers to you both.
Helpful - 0
999780 tn?1263671971
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
Helpful - 0
620923 tn?1452915648

  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....
Helpful - 0
999780 tn?1263671971
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.
Helpful - 0
620923 tn?1452915648

  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?
Helpful - 0

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620923 tn?1452915648
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