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Chiari and EDS
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Chiari and EDS

Those who have had their decompression surgery and also have EDS, did your neurosurgeon take any different precautions with your surgery?  Did he discuss your EDS with you in relation to your surgery?  I heard that it is very important for your neurosurgeon to know up front about EDS and that determines his approach to the Chari surgery.  Were you in the hospital longer?  Any input would be greatly appreciated.
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620923_tn?1439824912
Hi....yes my NS did...I was told that I would not have staples or stitches, but rather I would have sterri strips and glue.....plus, I had skin harvested from my scalp in order to help reduce the risk of rejection as those with EDS run a higher risk.

My surgery lasted longer bcuz of the skin harvesting, but I was in the hospital for 5 days...ICU for half the time.....I had no set backs during recovery...only that it took much longer for my incision to stop oozing....

I hope this is helpful

"selma"
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HI, I am also have EDS and Chiari. It depends greatly on what type of EDS you have, do you have the vascular type, or the hypermobility type? My NS was aware of my EDS and definitely took it into account, we met with an EDS expert and that Dr explained to the NS everything that was very important to watch for. My dura was not opened due to the EDS, I did not have enough skin for a patch and they did not want to use anything synthetic because of the high rejection and leak rates. I also did not have any staples, they used the medical glue to glue all of my incisions and then stitched them closed, they kept a very close eye on the stitches to make sure it did not tear my skin. I was in the hospital for pretty close to three weeks, five days of that was ICU, but this was not because of the EDS. I had not set backs related to the EDS, but it did take longer for my incision to close i had stitches for 17 days, normal is seven to ten days. Hope this helps!
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Thanks to both of you.  I have hypermobility type.  Would that require the same precautions as each of you described?  I have been to several neurosurgeons and none of them have approached the EDS, BUT, it is a new diagnosis.  I am headed to a Chiari specialist soon to get his treatment plan.  It has been recommended that I have the surgery by two other neurosurgeons, but it scares me about the EDS.  Thanks for your input.  I do appreciate it and will take this information with me!
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620923_tn?1439824912
I also have the hypermobility type as well so yes....

There is a EDS group here on MedHelp if u want more info.....many  of the chiarians with EDS r on there as well.

http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?camp=msc

"selma"
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Avatar_f_tn
The hypermobility type does require some precautions like the higher risk of rejection of the dura patch (which according to the EDS specialist my NS and I met with said is controversial in all but the vascular types but better be safe than sorry) and such but also eliminates the "life threatening" ones such as tears in the heart muscle, having to use multiple grafts to prevent holes that easily form in the dura in the vascular type, if a skin graft is used. As for the staples I was told if I never had a problem with tearing skin or laxity in my skin that it would not be a problem, but again it might better be safe than sorry. My NS was awesome with going out of his way to arrange a meeting with an EDS specialist and to be fully aware of every precaution and possibility especially since I have the vascular/ life threatening form of it. Good luck!
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