Chiari Online Support Group

Second Surgery April 22nd - need advice

#1

Hi everybody! I’m 23 years old, getting my second decompression surgery on April 22nd. The first surgery was when I was 19 and they didn’t do a duraplasty, so at the time they warned us that I may need another eventually and here we are. I know everyone is different, but I was wondering if people could share their stories from surgery WITH the duraplasty? My doctor said it would be about the same time in the hospital/recovering as the first one, but I wasn’t sure if that was really the case…Also, any suggestions on things to have/do to prepare and such are much appreciated. And positive vibes and prayers! Please send them my way! Thanks everybody.

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#2

Hello. You have past experience that will serve you well. My decompression was just before I turned 52. The base of the skull and C-1 were removed and then the membrane was open and a Duraplast patch was put in to give the brain more room.

I loved cool packing the base of the back of my head, it was my best source of comfort. Be careful of too many pain medicines. Take it slow and easy so the patch can establish itself. The main complication I have heard of is that on rare occasions they may leak.

Best wishes and give us an update.

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#3

I had two decompression surgeries too. The first in New York, 2007, with Dr. Milhorat and Dr. Bolognese, followed by Tethered Cord release, 6 weeks after the decompression. The dura patch was made using my own tissue taken from underneath the top of my scalp. Surgery went very well and healing was great until a PA at the hospital turned my head too far and the neck muscles that were put over the dura patch for protection were pulled apart. I remember her hurting me terribly, but it wasn’t until 2012 that I realized how bad it was. I started having many of the same pre surgery symptoms and had the second decompression surgery in Aurora Colorado with Dr. Oro. He found that when that PA had turned my head sharply, the muscles pulled apart and I was left with nothing but skin over the lower part of my brain. UGH! During surgery, he placed a titanium plate at the base of the skull, replacing the bone that had been removed in the first surgery. Dr. Oro makes the titanium plate to fit perfectly with each patient. Surgery and recovery went very well.
I still have some brain fog when the weather changes and a few other symptoms, but overall… I am doing VERY well. I work way too many hours and that does not settle well with Dr. Oro. I have opened two new businesses, (an autism center and a hyperbaric center) and created a non-profit company for special needs children. What I am saying is be positive, this second surgery may put you on your feet to do amazing things. I don’t let Chiari stop me. It does slow me down, but it does not stop me. ADVICE: start taking over the counter Colace twice a day now. The constipation from all of the medicines is horrific. I was told this prior to my first surgery by another patient who had gone through the surgery. I listened to him on both surgeries, but still had major issues with it. Any other way I can help, just ask. Now go get em’! Life is waiting on you!!!

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