I have been doing pretty well since decompression surgery on 11/13, not to say I didn’t have speed bumps along the way. But those are for another time. Lately though I have been waking with excruciating headaches in the morning, it’s getting more difficult to look up, and I’m having swelling in my neck that I haven’t had later in the day. I am also having more headaches again during the day than before surgery. This is all new over the last few weeks but more severe the last week or two. Should I be concerned, maybe am I probably over during things. Today two of my kids and I went to a retirement farm for horses for bonding time and spent three hours walking acres and giving some TLC to horses and each other then went Christmas shopping. But they were home from school for the w/e and these symptoms have been progressively building up pretty quickly mainly as I sleep at night.
I guess the biggest advice is whether I could wait til Wednesday to see my surgeon, I only live 15min away from Shands at the University of Florida(UFHealth). In case of emergency or if this is something that could already lead itself to an emergent situation. This is all new to me, I did not have much time from diagnosis to surgery so not many years of dealing with knowing about all the many, many, struggles there are and support needed along the way.
Lisa
I hope at this time you are through the struggle of the headaches you wrote about. Did they subside, or did you need to seek emergency treatment? I pray you got some relief. It is five days until my daughter’s decompression surgery. We are all so scared and not sure what to expect. Please update us on your progress since your surgery - I hope you are healing well!
Hi Trish,
Yes, my headaches are pretty much all gone. I did end up on antibiotics for an infection along my incision line. That is what was causing all the pain I was having and lol the swelling, also when I could not sleep on the back of my head. All is good now. I am taking Topamax though 100mg 2 in the am and 2 at bedtime and that helps with breakthrough headaches most of the time.
I’m glad it was a relatively simple fix with antibiotics! And I’ve heard many Chiarians start or continue to use Topamax. Any last minute advice for my daughter and me? Surgery is Wednesday.
Just go into it like an open book. Think positive and hope for the best. Take it one day at a time and remember kids are way more resilient than adults and bounce back quickly. I was driving in 4 weeks. She will do great. Call me if you want or need to 352-■■■■■■■■ (I am a nurse). I know what’s it’s like when it’s your kid my 13 yr daughter has to have like 7 teeth removed Friday. Her baby teeth just won’t come out. Best wishes. Let me know how she does.