Anyone else had a craniectomy but not had it repaired?

General
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Hello all. My first post lol! I had a large AVM removed on my right side of my head in 2012. I ended up with a serious bone infection and had to have a craniectomy that has left me with a hole in my head from behind my right eye to the back of my ear, and about 2.5 inches above my ear. It’s a large hole in my head for sure. I decided to leave it as is because the first two surgeries went so darned well. I was wondering if anyone else has a similar story and if there has been any problems? I don’t sleep well, have to be careful about dehydration or the skin sinks in deeper and my eye droops. Probably more that I can’t think of right now. Thanks for reading.

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Hello @twiw! It is great you found us and good to have you on board.

I am convinced we have at least one other person who has avoided a cranioplasty (I think their gap was right under the back of their head, so a lot less obvious and perhaps a little easier to keep safe). I do know we have a bunch of people who have had a gap for perhaps three months and then had the cranioplasty afterwards. If it would help to talk to those guys, we might encourage them to share.

The people I know about are @DogLover34, @JLardi and @Georgie but there will be others.

Very good to meet you!

Richard

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Thanks for the response Richard. While I would be interested in the folks you named stories, I’m really interested to see if anyone has gone the same route that I have, and what their long term issues have been. Any replies from anyone would be greatly appreciated.

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Hi, very happy to try to help.

What I’m thinking is that this is likely to be infrequent, so relatively few people here in that situation. There are a couple of approaches we might take:

  1. We wait and see who sees your post.

  2. We go looking for people in the same situation.

I think 1 could give you some replies but it might not or it might take a long time. So what I’m thinking is that to support you best, we would be as well to find the stories of others in the same situation.

What is the gap called? Is there a medical name for it? What I’m thinking is that if it has a specific name, we might search for that using the search magnifying glass, towards the top right of the page.