Chiari Online Support Group

1 Year Post Op Recovery Experience

Hello everyone! My name is Sublime, and I am 16 years old. On April 1st, 2019, I had a Chiari Malformation Decompression. Which means, I am now officially 1 year post op, and RECOVERED. It feels amazing, and I am ecstatic to share this update, and journey with you all.

The last time I posted an update, I was 3 months post op, and to be honest, I felt terrible around that time. Nausea, migraines, and other symptoms were still raging. I was upset with this, as some people take as little as 3 months to recover… But I went with the flow. July and August went along, and I was still sad, depressed, and in pain constantly.

It was not easy to bring myself back up, but I managed. In addition to my recovery process, I started to have vision issues, such as flashing in the eyes, and night blindness. Also, memory loss, which I find is somewhat common with some patients with chiari. Regardless, I was still having issues, and was distressed. At that point, I genuinely thought things wouldn’t get better.

Now, here is where things get weird. This may seem very strange, and out of the park, but I do think it correlates with chiari, as I have read one article from a person who had the same exact issue as me. Somewhere in September, my personality made a complete flip. I didn’t know who I was, prior, and to be honest, I still really don’t. This might be because of memory loss, or just general stress, but I won’t question it too much. I am really glad it happened, because I am much happier now, than my past self was.

I still had symptoms, such as vision issues, headaches, nausea, memory loss-
So, I called my surgeon, and she had told me that in some chiari recoveries, it could take about a full year to recover. I wasn’t too surprised, considering how extreme my case was, but nonetheless, hearing this was disheartening.

Now, from that change and on, all the symptoms started to lighten up. By November, my migraines were gone. While I had nausea still, I am now finding out that it can be from a gastrointestinal issue, not related to chiari, and is treatable. My vision problems lightened up, and I started to regain some memory once again.

I think by the time it hit January, that time is probably the true time I was fully recovered, honestly. I had no nausea (thanks to my gastrointestinal doctor), no migraines, and all other symptoms were alleviated.

Now, it is April 8th, 2020, and I am glad to say that I think I am fully recovered. I am not sure what this holds for the future- if the herniation will start going down again, if I will need another surgery years down the line… But, for right now, I am alright, and I am happy. If I could do this whole thing over 10 more times, with this exact result, I would 100% do it.

Thank you to the people who have kept posted on my status, I will keep updates if anything changes, and be sure to help some of you around the site. I still have some more research to do on the personality change, but I will get on that when I feel like it.

I hope you all can have good experiences in your recoveries. I also hope, that I could help you guys at all with this post. Things get better with time, not instantaneously. Be patient, and be gentle on yourselves!

-Sublime

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That’s really amazing news! Thank you for sharing your journey through surgery and recovery. It makes a really big difference for people to understand that the recovery process is long, but that it is a good recovery.

Sharon from ModSupport

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