I am 10 weeks post decompression and I keep having symptoms come and go. I was feeling really good but I still took it easy and didn’t bend or lift. Then when I went to bed I suddenly had pressure in my head that woke me up every hour. My joints were hurting and my ears, jaw and eyes felt achy and weird. It is kind of a jittery sensation and I wake up feeling hot. This keeps happening off and on where I feel pretty good and then all of the sudden I don’t. Is this normal at this stage of recovering?
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I have had a lot of surgeries, and another one coming up soon. None for chiari, but I have found that surgical recovery is long and bumpy.
That said, I would encourage you to reach out to your doctor to make certain that this is normal in this stage of recovery, and of course, asking here is great to hear what other people’s experiences have been.
Sharon from ModSupport
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Dear Dragonfly,
Absolutely! What you are going through is perfectly normal. At least for Chiari recovery. What my neurosurgeon told me about decompression surgery recovery was that it would be like “a roller-coaster.” Dramatic ups and downs. You will feel really good for a segment of time - then all the sudden feel awful again. Hopefully the good segments will eventually lengthen, and the awful segments become shorter - or more infrequent. My neurosurgeon explained that central nervous system healing is not like bone or muscle healing - which is more a gradual uphill progress. Nerve healing is come & go - like you are experiencing. My neurosurgeon also warned me that no two people heal alike with decompression surgery. Some heal 100%, and others not at all. I was one who healed 70%. I am 8 years post surgery, and I still lose every 4th day to total paralysis and returning Chiari symptoms. However, I get 3 wonderfully normal days in between - which I did not have before decompression surgery. So, I am 100% happy about that! It did take about 3 years for my bad segments to shorten to just one day instead of all day-every day. My good segments/ bad segments came in 2-hour increments for about 6 months. Then, the good segments increased to 4 hours (with 2 bad hours in between). Then, 6-hours… The alternation was dramatic from good to bad. I could almost set my clock by it. Hopefully, your good hours will increase as well.
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