How my surgery went, and recovery so far

Symptoms and Treatments Surgery and Recovery
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I had a chiari decompression on April 1st, of this year, and oh boy it was a lot.

I am 15 years old, and I am currently in online school. Preparation for the surgery was pretty simple: I wasn’t going to try to brush my teeth at the hospital, but brought my tooth brush and toothpaste just in case. I didn’t bring a hair brush, because I didn’t want to have to even worry about brushing my hair connecting around the area. I had packed 2 pairs of pajamas. I made sure both tops were button ups, because YES they are 100% more comfortable than wearing a regular shirt after surgery. I ended up only using one pair, and that was when I was leaving.

So the day of the surgery, my surgery got rescheduled to a later time, just a couple hours later. So this meant I could eat dinner the night before, and drink my water until about 10am, which was very nice. Got there, got all set up, and I didn’t even notice when they gave me the medicine lol. I woke up, I wasn’t actually that sore. Most of my recovery has been bearable pain, when it is there. I also woke up with braids in my hair, (they were in pigtails before) and I thought it was super cute lol.

My surgeon called me an “extreme case”, because instead of the assumed 8mm herniation, it ended up being 14, and my cerebellum was swollen (I guess thats pretty dangerous?). So, my surgery was also lengthened to about four hours total, and I officially woke up around 8pm or 9pm. I surgery was at 2pm I believe, for those of you wondering.

So I woke up, and mainly slept throughout the night fairly well, I was also on a lot of medications lol. The nurses there, (I was in PICU) were very nice. One gave me essential oils in my room, which helped me sleep, and I kept a program on the TV that was just rain sounds. I walked on the next day, with the help of a physical therapist and a occupational therapist.

Walking the first time after surgery was very difficult, personally, my whole body felt very heavy. It was pretty difficult to get up, but eventually I did. I didn’t walk around a whole bunch, but it was enough so I could use the restroom. Blah blah blah, and surprisingly I went home the next day. I thought I would’ve needed to stay in the hospital a little longer, but glad I got to go home.

The ride home was honestly, one of the most painful parts of it, especially hitting bumps. But, at home, I would walk with my grandmas walker, and within a week after surgery, I was walking without a walker. I was still very very very tired, but I could walk to the rooms of my house now and see my dogs.

The first month of recovery (surprisingly) was the easiest to me personally so far, and the second month was the most difficult. The second month, I had that hazy feeling I would get one day at a time, before surgery, but this was the entire month. That was the worst feeling I had from Chiari, so kind of sucked I experienced it for a month, but it slowly started to back off. My allergies also started to kick in, so yeah. May was pretty bad, but now we are onto June. So far, so good.

I have no headaches except when I cry or get upset… Yesterday, I did have a nosebleed, and those are rare for me. That was the second one in my entire life, I’m not worrying too much about it though. I still have nausea, am very dizzy most of the time, and I have joint pain a lot, and back pain. I hope that stuff resolves itself, but I am still getting checked out for other things. I’m considering making a youtube video regarding my situation, but am debating it because of people I know in real life… But, I do wish Chiari had more people representing it, bringing awareness to it.

Some mild concerns as of right now, I had a fairly good nickel sized bump on the left side of my incision, which I think went away, but I am not completely sure… Also, today I noticed a small very small bump ON my incision, but I wont worry about it too much unless it gets bigger.

Other than that, I am on my third month of recovery right now, today is June 6th, 2019. If any of you have questions regarding this post, feel free to ask, I am open to almost anything. If you are reading to get insight for yourself, I hope I could provide you with well information! <3

-Sublime

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Hey Sublime,
Well it sounds like it all went fairly well and that’s a plus, a HUGE plus.

The Ben’s Friends Network is made up of communities of people who have rare conditions, of which Chiari is one of them. We have around 50 differing communities.
There is very little in the way of representation nor awareness for many of those conditions and that is one reason that The Ben’s Friends Network is here, so that those of us who are trying to manage a rare condition have a place to discuss our situations with others dealing with similar issues.
As you are discovering the recovery process has many up’s and down’s. Just remember to take the time you need to fully recover. You will thank yourself if you do.

Best of luck with it all.
Merl from the Moderator Support Team

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Hi Sublime
I was wondering now that it’s been about a year since surgery how you are doing? I had surgery 2 weeks ago and I feel worse than I did before surgery. I am hoping as things heal I will be glad I had surgery, as of right now I feel zero benefits.

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Hi Sublime
I was wondering now that it’s been about a year since surgery how you are doing? I had surgery 2 weeks ago and I feel worse than I did before surgery. I am hoping as things heal I will be glad I had surgery, as of right now I feel zero benefits.

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Hello! I forgot I had made this post previously. MAJOR changes and updates. I will be sure to make a full detailed post, in regards to my 1 year post op recovery. I hope you keep updated with that <3

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Hi @Dragonfly! What is your perspective On the surgery now that you are ~3 months post-op? I am on the fence about having surgery. I sure hope you are feeling better and have noticed a lot of improvements in your symptoms!

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Hi! I have been doing really well. The recovery is much slower than I thought it would be in some ways. I am actually pretty active in many ways but in other ways I have to still be careful. I walk a lot and I do things outside all the time. I can do most household chores except lifting anything that is 10 lbs or heavier. And I try not to bend over to the floor much. I am starting to bend more and more each month but if I try to over do it I feel pain in my head and neck later. Also I have to be careful how much time I spend in the heat or I get really tried and my neck and head hurt. Also I have to be careful about pulling things that might be too heavy or lifting anything that is 5lbs or more over my head. As long as I am following these restrictions I feel really good and don’t need any pain relievers at all. My neurosurgeon suggested I wear a soft head band to help the swelling back when I first had surgery and for what ever reason I still like the pressure of the headband around my incision so I still wear it a lot. And I still use ice packs nearly every night because my neck and head get sore mostly at night. Compared to how I feel before surgery I am doing so so much better. Before surgery I had insomnia really bad now I can sleep more though I do wake up a lot. The symptoms that are gone are: nausea, IBS, blurry and weird vision problems, severe neck pain and pressure headaches, tremors and shaking episodes. The things that slowly started to go away are: numbness and tingling in my arms hands and legs and feet, soreness in my joints and muscles. There were a lot of weird nerve pains I had after surgery that made me worry I made the wrong choice to have surgery but now I feel like it was the right thing to do because I keep improving rather than declining like I was before surgery. My advice is to make sure you have a chiari specialist. Are they going to open the dura and what will they patch it with? Mine dura was patched with my own neck tissue and I have heard that other patches can cause allergic reactions and don’t always heal as well. If they can use your own tissue your body likes it better! I have my follow up MRI this Wednesday the 23 and if you want I can let you know how that goes…

1 Like
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I am so glad to hear you made the right choice and you are getting relief!! How did your follow up mri go? Sorry for the late reply, I am just seeing your response.

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I’m wondering what the best way to find chiari specialist is? I’m thinking of going to mayo in Jacksonville Florida. I just recently was diagnosed with chiari.

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Where are you located? My neurosurgeon chiari specialist Is in Sioux Falls SD and is very good. I recommend him. If you aren’t on a chiari support group on Facebook I would recommend joining and asking for recommendations there too.

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I live in South Carolina. Oh ok I will do that.