I am two months past my decompression surgery and almost one month past my shunt placement. In the last few weeks all of the symptoms I had before my decompression surgery have returned plus new ones. I have severe abdominal and neck pain. I have also started having headaches that start at the base of my skull and go all the way to the front of my head. I have issues standing up for long periods of time and walking long distances is very hard. Is this normal? Has anyone else experienced this? My doctor says that I can go back it work on the 28th of this month but I don’t see how that is possible considering holding my head up for long periods of time is rough. What should my next step be? Does anyone have any advice?
Amy, I’m so sorry you are going through this. All of what Abby said, plus you describing difficulty holding up your head rings the Ehlers Danlos Syndrome/cranio cervical instability bell. Have you been evaluated for hypermobility? Amy I know you are probably getting very discouraged, but keep hanging in there. This is a journey with unexpected bumps and detours, but we are in a time that so much is being discovered about our condition that there is plenty of hope to be had. I so so hope you are just in a rough spot right now that will improve with a little time. Your are only 3? Months out plus a new trauma with the shunt… Many of us have experienced temporary setbacks in the healing process. Don’t underestimate your strength.
Hugs, Jenn
Well I just hit a hug bump in the road. My insurance ended this week so all of my appointments have been cancelled. The company I was working for sent me cobra information but with not being able to work I can’t afford it. I applied for Medicaid through the state and I hope I get approved for that but I won’t know until I have my interview next Friday. It’s so hard to not get discouraged when everything seems to be falling apart around me.
Amy, I can see why you are feeling discouraged. You are taking the right steps, though. I am saying prayers for you and sending positive thoughts for your interview tomorrow.
Hugs Jenn
Ps your new picture is beautifull! You are a very strong lady just keep hanging in there.