DizzyGirls Posted August 5, 2017 Report Share Posted August 5, 2017 (edited) Hi all! Just an update on my daughter's surgery. It was this past Monday. The surgery was about 8 hours long. It went well! We had two very happy neurosurgeons! They fused C3 to T4, anterior and posterior. The problem is the recovery. She's having a lot of pain. That's to be expected. They've also started PT which has proven to be a challenge more like a disaster! They were working with her yesterday and she passed out. About 15 people in her room trying to revive her! Scary stuff!!!! Today she was in a warm and cold sweet. After about 6 hours of this, she passed out. Anybody have anything like that after surgery???? Edited August 5, 2017 by DizzyGirls Mistakes, clarifications Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted August 5, 2017 Report Share Posted August 5, 2017 Oh my, Dizzy! I'm sorry this is such a difficult road for her and for you. Makes me worry about what is on the horizon for me. I hear how easy the young ones bounce back, but it sounds like your daughter had a bigger surgery than most. Does she have to wear the halo? Do they know why she passed out? Was it just a pain response because they pushed her too far too fast? Has she said she regrets the surgery or does she still have hope that this is going to make her life so much better? I will keep you guys in my prayers. Tell her we are thinking about her. Kim Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted August 5, 2017 Author Report Share Posted August 5, 2017 Hi Kim! Well, right now she's regretting it, but I don't think that's a fair assessment. No halo and her pain is better 5 days post op than she was before. It's just her dysautonomia that is all whacked out. Tachy then brady, can't eat, sweating, nausea. You name it. Quote Link to comment Share on other sites More sharing options...
Debbie Rose Posted August 5, 2017 Report Share Posted August 5, 2017 I imagine the therapists just aren't figuring in her Dystsie and are pushing her as they would a "normal" (no such thing) person. Have you had the time to talk to her specialist (for dys) about what is going on?? Maybe she needs to build up to it more slowly at first considering her response. Glad to hear her pain is less now Debbie Quote Link to comment Share on other sites More sharing options...
dancer65 Posted August 6, 2017 Report Share Posted August 6, 2017 Hi sorry to hear your daughter is having a hard time after op. Just wanted to share I had similar reaction after my hysterectomy, at that time I didn't know I had POTS but had been complaining of all the symptoms ! My BP was dangerously low so all pain Meds were stopped except for paracetamol that defiantly didn't hack it !! When they bed bathed me I went into shock, shaking, cold sweats, fainted etc. I also couldn't speak but in my head screaming for them to leave me alone , I seemed to have lost the ability to move my body , it all felt like my body and brain were not one ! On a positive note things did calm down after a few days and once I got home I was able to sleep more and potter around at my own pace when I felt well enough. i think these days they want to get you going really quick, some bodies are just not ready so soon after surgery hugs for her feeling better soon ! Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted August 7, 2017 Author Report Share Posted August 7, 2017 They are pushing really hard for her to go to acute rehab. It's intense therapy, 3 hours a day. I'm really unsure as I think the commotion alone would kill her. If we get one more cheerleader therapist I'm going to take her pom poms and well.... think I need some sleep! Our othet dilemma is how to get her home without passing out. There is no such thing as "normal"! You are right! One of the neurosurgeons said there is not one thing normal about her. I call her my zebra unicorn. Ever seen one??? Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted August 7, 2017 Report Share Posted August 7, 2017 You have my permission to take those pom poms and do whatever you want with them. They are probably pushing her so hard because of her age. It may take your daughter breaking down in hysterical tears for them to understand what they are doing to her. Does the physical therapist even know what EDS is? Do they treat other people with it? I would bet that they assume you are just an overprotective helicopter mom and don't realize the severity of her case. I don't know how you combat that because the more you protest, the more they are going to think they are right. She isn't a regular person recovering from a neck injury. You guys are in my prayers. Kim Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted August 7, 2017 Author Report Share Posted August 7, 2017 Hi Kim! Thanks for the laugh and I'm so glad that receptionist now knows what a physiatrist is!!!! Still laughing! We have one set of neurosurgeons on our side. Hopefully we'll see them in the morning. I told her that I wondered what they were writing about me. She assured me not to worry about that. That was nice. Just want my daughter to be able to stand again, balance her back, and go home. Quote Link to comment Share on other sites More sharing options...
Debbie Rose Posted August 10, 2017 Report Share Posted August 10, 2017 LOL ! Zebra Unicorn !!! I am a visual person and I can see her quite clearly. Does your daughter get any pre-syncopal symptoms so she can tell them to stop before she passes out? Or does it happen that suddenly? How can she hope to heal with all their pushing her symptoms of all her conditions to max! They need to learn more about her and "listen". Hope things improve soon Debbie Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted August 10, 2017 Author Report Share Posted August 10, 2017 I DMd you! We are here at acute therapy. My daughter is sleeping, so exhausted from the trip. It's small and quiet, so far. We'll see what they try to do with her tomorrow. There's talk of kicking the parents out after a couple of days. Don't like that. I'm all for her being independent, but her condition is one where there isn't always the ability to become totally independent. Besides, she's never been away from home before and she's just had major surgery. Always makes me nervous when they don't want the parents around. Quote Link to comment Share on other sites More sharing options...
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