Post-Op Thoughts, Day 4

I had the Chiari Decompression on Friday and was discharged from the hospital today.

No place like home.

At the hospital, pre-op, talking to everyone involved, doing the bloodwork, etc. up until the actual moment of no return, I was in my head “I can still opt out”, “I can still opt out”. One of the anesthesiologist said, “let m give you something to make you comfortable” or maybe it was, “let me give you something to help you relax.” And I said aloud, “Yes, please do so.” I think I took a deep breath, and then I opened my eyes, sort of, because thet were actually quite swollen and  could barely see out of my right eye. It was very difficult to move obviously, as I was still coming out of anesthesia. I believe my first words were, “I need to see my husband.” And I think they allowed it before sending me up to ICU. At least this is what I recall, and it could be inaccurate because I am under the influence of Norcon. I am not even going to read about the side effects because they are an effective painkiller. I’ve gone without for a bit and the pain was incredible. Birthing children was easier than this, at least for me.

Here at home, we are about 45 minutes away from the hospital where the neurosurgeon was performing the Chiari Decompression.

Mostly highway, we still have quite a mess of crappy roads.  I was nauseous and experiencing motion sickness, as well as feeling my body tighten for the impacts of potholes and old roads, as well as the swervy curvy motions on windy roads. I was very much in tears from pain by 4 pm, 15-30 minutes from my dosage. My caretakers (mother and husband) obliged and now we are on schedule: 4, 8, 12, 4, 8, 12.

I realize I am forgetful today, and at this point won’t worry about it. I’m on serious pain killers and recovering from a surgery where they not only took a piece of my skull out but they cut into my leg to use the tissue for a graft.

I remain positive, knowing the importance as part of my short-term healing and long-term wellness goals.  I will do my best to manage what I can and to take good care of this body to the best of my ability.

July 6 is our follow-up appointment but I’d like to get in sooner to have the staples removed, at least.

And finally … I want to say, I think it’s going to be alright, Peace.

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When Hope Begins to Crumble

I am usually a positive person or have tried to be in so many instances. It’s hard to remain positive after reading the seemingly hopeless posts of the support groups for those with Chiari Malformation. So many people are in much pain and suffering, and there are few stories with good reports, post-op. Are the truly successful surgeries just not reporting their well-being? What are the real possibilities?

Maybe the Facebook version of support groups is really where people just come to share the pain and suffering of current and ongoing symptoms?

I’m growing quite concerned because if a Chiari Decompression just brings on a different set of problems equally or worse than the current daily pain and problems, I actually wonder if it’s worth it. The real questions on my mind are, will the quality of life improve? What can I expect after surgery, based on my current level of degeneration? What happens if I opt out of surgery?

I am going to get a second opinion. The neurosurgeon I have lined up for this surgery is actually well-qualified, but I need to hear it from another source to be sure I am doing what’s best for me.

Until I know more, I am going to consider foregoing surgery as an option, perhaps with alternative pain management.


Toni