Chiari Online Support Group

3 weeks post surgery lots of questions

Hello, I have not posted on here in a long time but read posts often. I finally decided to do the decompression surgery after meeting a surgeon who I actually liked and felt comfortable with. He did the decompression and dura patch and removed part of the c-1. I consider myself to be pretty tough at handling pain. Those first few days in the hospital especially the next day after surgery and even the second day after when I was released were the worst pain I have ever felt. I truly thought I had brain swelling and I was going to die. But the surgeon said it was exactly what he expected. My questions to everyone on here are first did all of you experience this much pain? And how long did the head pain last? And when exactly did you feel the chiari symptoms go away. Its hard to tell what is surgery related or still Chiari. All the dizziness and head rush pressure pain feels worse at this point. Also the ringing in my left ear still there. Although the surgeon and my neurologist did not promise that would go away. I would just welcome everyones experiences with decompression surgery so I know where I stand. Tomorrow is 3 weeks out.
Thanks

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back in 2016 had my surgery, very similar to what you had done. the night of surgery I got a major head ache and was rushed for ct scan to verify no fluid leaks since they had to open my dura and release fluid flow back to my head. after the third day in ICU I was feeling much better. day six or seven at home I might have had a small stroke (not medically verified). most of my Chiari issues did go away around day three when I figured out how to manage my pain meds. after week 2 I was good to go. back to work week 6 part time. I suggest asking for a scan (Ct orMRI) to see what is going on. trust your self. if you feel something is wrong be your own voice and scream if need be, until they hear you and listen. make them prove what they did is fine. hope all works out for you, prayers.

Thank you brainless for your reply. I am slowly feeling better. But every evening I start to feel more head pain and slightly feverish but not enough to worry and rush into the ER. Bending, lifting my legs even just walking causes the pressure pain. I go back to work full time Monday, a day shy of 4 weeks I hope I can do it. Scalp is still tender and numb on left side.

Hey, Sherry! You are just barely starting the Road to Recovery! I had my decompression surgery in 2012, and I didn’t even feel the first hint of relief until 6 weeks after surgery! But, I had been 10 years in excruciating pain and gradual-total-paralysis from my Chiaris. My neuro surgeon told me that the younger your are and the sooner you have the surgery following the first onset of symptoms, the greater your chance of full recovery. I was well over 50, and got misdiagnosed for 10years before decompression. But even so, I thoroughly enjoy 70% recovery of Chiari symptoms since surgery. Everyone’s Central Nervous System recovers differently. But, there may be nerve-spinal-cord damage that could be permanent. I do have to take a small dose of Amitriptyline to keep some nerves quiet; nerves that, although they are no longer damaged and are actually healed, they still want to scream “Ouch, ouch, ouch!” because they were pinched for so long. It’s phantom pains. The nervous system has a way of making ‘fake pain.’ Can be very confusing. I ended up in the ER so many times because of fake pains - thinking I was dying of heart attacks, head explosions, etc… Since surgery, things are a LOT better. If I do feel myself swinging into to a “I feel like I’m dying” mood over a scary pain, the first thing I am able to do now is slip myself a small portion of Lorazapam (a tranquilizer). IF the pain is fake, the Loraz will smother the symptoms within the hour. So far, that’s 100% what my scary pains have been - total concoctions of the damaged CNS. Anxiety is a big part of a damaged CNS. I no longer belittle myself for having regular anxiety attacks, no that I know that anxiety can be a chemical imbalance in the brain that Chiari’s created.

Bethr, I am so glad to hear you have 70% relief. It sounds like you were really suffering. I just had my 4 week check with my surgeon yesterday and he is pleased with how everything looks. Looking forward to feeling better every week!