My son was diagnosed when he was 4 years old. We had 3 surgeries & stayed in the hospital close to 4 months because of so many complications. Rough year after that…then about 2 good years. (His syrnx is smaller but still there 4 years out) About 3.5 years after surgeries he started having high level chronic headaches all day everyday & nothing can touch the pain. He has tried all the emergency medicines (6) that the hospital can give him…they didn’t touch the pain. Did physical therapy for 16 weeks & his pain dropped about 1 point in the 1-10 pain scale. But once he stopped it went right back up to where he started. His pain level is between a 5.5-7 all day everyday. Let me tell you about his pain levels, he has only given himself an 8 once & that was right after brain surgery while he was in the PICU…& they were trying to make him have just Tylenol after brain surgery!! He reserves 10 for death! So he doesn’t ever give himself high numbers so it has been brutal watching him in this much pain. He is going on 10 months now with no relief.
Has anyone else experienced this after surgery & did anything help with you pain? I am so desperate for help!