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Hope

My 10 year old daughter is going to be having decompression surgery soon her syrnix is from her C2-T11 and the doc says its the biggest chiari he has seen.  Can any one help with what we can expect post op while still in the hospital??
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620923 tn?1452915648
COMMUNITY LEADER
U r welcome...sounds very odd too!!...geeze, I am adding her to my prayers so teh drs can come up with a plan that will work.

"selma"
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Avatar universal
I asked the dr about EDS and he said no.  But he found more on the MRI he said when she has the decompression sugery that after the brain settles that it will rest on a cluster of nerves that have control of her speech, swallowing and her tounge.  In order to support the brain and keep it where it needs to be he is going to fuze her first 4 vertebrae to gether. which on one side he has room for the screw but on the other her artery is in the way so he is going to have to plan a new option he has consulted with other Chiari drs and none of them have run across this.  Wonderful isn't it like she doesn't have enough going on. I will keep you in the loop.  Thanks Again
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620923 tn?1452915648
COMMUNITY LEADER
http://en.wikipedia.org/wiki/Ehlers-Danlos_syndrome

Here is a link to info on EDS.....I never knew I had it until my NS for chiari checked me for it...and in reading the description...outside of the slow to heal and easy bruising, I would not have thought this to be me...but it is .....and, from what the drs told me those with EDS are prone to have rejection issues and it is best to know b4 surgery and an foreign patch is implanted.

I also have TC and I know the weak legs is a TC issue....mine get weak if I am on them too much, and my lower back also hurts.

Please keep us posted

"selma"
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Avatar universal
I thank you all for your input. The dr office called today we are going to St. Louis tomorrow for more xrays of her neck and a consult with the dr we are hoping to have her surgery Monday already.  I am not sure what Ehler-Danlos is but I will def look it up.  Her symptoms are headaches, hands and arms going numb and I guess the either her Chiari or the tetherd cord is causing leg weakness to the point she can no longer run and only walk a little ways before she has to sit.  We also were wondering if she was hypoglycemic but now I wonder if she wasn't having seizures.  We have been to so many dr's I can't believe all because of a scoliosis MRI they found her syrnix but at the same time I am so glad they did. I will let you all know tomorrow evening what happens.  And always thanks for the prayers since her diagnosis I have been praying for everyone that has Chiari in one form or another it is a dreadful thing for me to watch so I can not imagine having it myself but I would in a heartbeat to have her be healthy.
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620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome!!

We can all tell u what we went thru and u will have a s=diff story from each that has had surgery.

What u should expect is that she is in ICU and monitored the first 24 hours...the rest all depends on her and the course of procedure her NS uses.

Such as type of patch if one is being used...type of surgery...is it a full PFD or a partial....is it  endoscopic or not?Outside having a large syrinx does she have other chiari related conditions?....like Ehlers-Danlos that could cause rejection issues?

Theses r issues u need to discuss with her NS to better know what to expect.

Each NS has their own way of approaching this surgery and should be contoured for the individual patient...as we r all diff and will need diff care.


I pray all goes well for ur DD....please keep us posted : )

"selma"
Helpful - 0
1041839 tn?1278681846
Hi and welcome to the forum! I cant give any advice for after surgery because mine isn't until may 24th. But i just wanted to say we will keep you and your daughter in my thoughts and prayers. Are they just doing decompression? Or are they puttin a shunt in as well? Also, please list her surgery date on our surgery thread. Blessings ~ Shannon
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1179332 tn?1297478990
Hello and Welcome to the forum,

I am truly sorry to hear that you are going through this with your DD..my heart goes out to you.

Wow that is a big syrinx too, I am happy to hear that she got a dx and that they are going to move quickly on it.

Post op...I'm from Canada so it may be a little different. I left my family at about 11am and they didn't see me at my room until after 5pm. That is factoring in the surgery time (about 3-4 hrs) and then the recovery time (aprox. 2hrs). My NS got my husbands cell phone # and kept phoning him with updates. I was put on bed rest for 24hrs and then they tried to get me up the next night but I was too dizzy to stand. I did successfully get up the 2nd morning and was able to walk around and move a little more. I was in 4 days in total and most of it was just dispensing pain meds and monitoring my vital signs. Oh, they put these interesting leg massagers on you too to keep the blood flowing which makes it hard to sleep, and I had a catheder in until I could move around and get to the bathroom. For the incision, a good pillow would be handy to have and when my incision got really hot an ice pack helped a little. I wasn't allowed to shower until 10 days after my surgery which was a little gross..but I got around it!
I can't think of anything else off the top of my head..please feel free to ask any questions :)
Carolyn
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