Must knows?


My name is Shannan, I’m 18 years old and I just got diagnosed with Chiari a month ago. I have met with a surgeon and we have decided I will be getting the decompression surgery within the next 2-3 months. I just have a few question, if anyone could answer for me!?

I’m a college freshman and was just wondering, if I get the surgery in early January, and start classes early February, is this going to be possible? or will I still be recovering?

What should I expect post- surgery? What was the pain like? Anything unusual? How long until you guys were moving, eating, sleeping, feeling relieved of symptoms? I know it is different for everyone, I’m just curious to see an estimate.

Was there anything that made sleeping easier? A certain pillow or using something else?

And this one isn’t really thatttt important, more of me being a teenage girl. How much hair did you guys get shaved off?

I’m just a little nervous about this whole thing and how it is going to affect me.

Respond if you can answer even just one of my questions, it would be greatly appreciated!!

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I will be a sophomore in college this year. Where are you going to school, and what is their plan for SARS-COV-2? This will make a huge difference.

I would be a bit nervous to say that you will be able to attend school (on-campus) a month after your surgery. Your immune system will plummet, which is not a great thing when you are going to school during a pandemic.
As for recovery time, I have never had decompression surgery, so I will not be able to give the best answer, but in my reading, I would say 4 weeks is usually the minimum recovery time. 6 weeks or longer is the typical max. However, this is brain surgery, so recovery will not just be sitting in a bed and waiting for your body to heal. You will most likely need to put in an effort to rehabilitate your body. It is impossible for me to give you a time frame post-op. Every single post I have read has been wildly different! But our community members may be able to give you more of an idea.

I have a few questions that I would base my final answer on: Did you attend first semester? How did your school handle the pandemic? Will most of your classes be hybrid or online? What are you looking at as your workload? How far will you be from your parents-or from a good hospital?
I would say you could definitely take the spring semester online and as long as your schedule is not too hard, you should be ok. Of course, this is not ideal, at least for me.

If your school is very strict about distancing and socializing and had few cases on campus last semester then I would consider attending. You just will have to accept the fact that you may have to miss the first two weeks of classes. This is not a huge deal, most professors will work with you about this, it makes it even easier than many classes are already online and maluable. You should still try to take an easy schedule this semester, so it is not brutal in the case that you have to catch up.

I think because the decompression surgery is mostly focused on the bottom of the cerebellum, You will most likely just have hair missing farther up the neck than normal. It really depends on the surgeon. You should bring this up with your surgeon before, or if you don’t want to in the midst of other parties in the room, talk to your anesthesiologist as you are wheeled to the operating room!

All my surgeries happened before I hit the 8th grade, but I have had to miss school for related issues in highschool. Let me know if you have any questions! I look forward to hearing from you!

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I go to school in Upstate New York at SUNY Cortland, I attended school in person for 2 weeks then went back home because of how life was there. Living at home felt to be the best option for me. We had little to no cases until this last month, starting end of October, when cases started to rise. They entered a lockdown/ quarantine period around a week before Halloween and did not open the campus back up for in-person classes- we went completely remote.

I was planning on doing this Spring semester from home, so all of my classes will be online. I was planning on taking 5 classes but now I may stick to 4, just so my workload is lighter.

I’m not sure how educated you are on this topic, and I may watch too much Grey’s Anatomy, but after brain surgery, it looks as if walking is painful and hard to do. Did you experience anything similar? I see you had some sort of brain surgery. Physical therapy was mentioned when I was talking to my neurosurgeon about regaining all of my strength and functioning again.

Thank you for responding!

Hey Shannon,
Welcome to Ben’s Friends. My name is Merl and I’m a member of the modsupport team here on Ben’s.
I have a ‘brain issue’ and although I haven’t had decompression surgery I’ve required a few neurosurgeries, including a craniotomy, and now have a shunt (A plastic drain tube) as a permanent feature. So I’ve got a bit of experience when it comes to the brain.

So, I’ll ‘try’ to answer your questions as best I can.
Brain surgery is unlike any other surgery. If you break your arm, it affects your arm. You have a sore arm, then 6-8 weeks later its all healed and things go back to normal. With brain surgery it can affect EVERYTHING and 6-8weeks later is only the beginning of the journey. Sure the physical healing of the wound may have healed up, but the brain can take much longer to settle. How long? That’s a bit like asking ‘How long is a piece of string?’ There can be just too many variables. You can read through the differing posts here and see the differing opinions given to members. Some dr’s are of the opinion that if the tonsil length is a certain size you’ll be symptomatic and yet you’ll find there’s a number of members who’s tonsil are not of that size and yet are highly symptomatic.

Often it can be similar in regard to surgery. Some can come through it all and be remedied but for others the outcome is less than optimal. The symptom cause may be physically treated and everything look fine on the scans but the ongoing symptoms may suggest otherwise.

My suggestion here is do not put a limit on yourself for a recovery time or date ie By June 1st I’ll be back. It can be really demoralising when we pass those dates. It takes as long as it takes. Be kind to yourself. This is brain surgery and it takes time to heal. Take the time you need to fully recover.

Grey’s Anatomy is a good show, but I wouldn’t be using that is my number 1 example for results. Our brains control everything and depending on the how and where any nerve damage may occur could cause no end of differing symptoms. Another thing I often say to members is that 2 individuals can have exactly the same brain issue and require exactly the same type of surgery but have VASTLY differing outcomes, trying to compare exact same for exact same is near impossible.

I say all of this above because I did it all the wrong way I pushed my limits, doing myself more harm than good. I set myself time limits, failed to meet my own timetable then got annoyed with myself for it. And I tried to compare recoveries where there was no comparison. Ahhh, don’t do that.

But the BIGGEST thing I can say (and I’ll say it again)

      " Be kind to yourself. This is brain surgery and it takes time to heal. 
                    Take the time you need to fully recover."

Merl from the Modsupport Team


Thank you for sharing those words, they actually helped me remind myself that this isn’t something I can control. I keep trying to remember that I won’t know how my body will react to this until I’m there but it is really hard to. I’ve always wanted to know exactly what was gonna happen and knowing I just have to go along for the ride and deal with whatever comes when it comes is very difficult.

Thank you for giving me this insight.

Accepting we have no control can be a HUGE challenge.
I like to be in control of me, I’m a bit of a control freak, so to give that control over to medicos… …OHhhh, that was hard. In my view, that’s my brain, that’s what makes me, me and you’re going to go pocking around in there ???
One of the surgeons put it to me rather bluntly (Which was probably what I needed to hear at the time.)
“We have 2 options, we leave it and you could die or we operate” Not much of a choice really.

I am not a believer, not at all, but a long time ago I was shown a prayer called The Serenity Prayer

       "(God)Grant me the serenity to accept the things I cannot change
         Courage to change the things I can
         And the wisdom to know the difference" 

Minus the (God) bit, I ‘try’ to use this theory. I can’t change what’s happened and I can’t change other people. Those things I have to accept (Sometimes begrudgingly)

The one thing I have control of is me and how I react to it all. This can all be easily overwhelming to say the least and for a while it all got to me and I fell into a hole of what I call the ‘Poor me’s’. I needed answers, so I tried to do everything I could to get answers. If there’s an alternative treatment, I’ve tried it. If there’s a better way to manage it all, I gave it a go. But once I had exhausted every other option open too me I had to accept the reality of it all.

Is that wisdom? I don’t think I’d call it wisdom, rather pigheadedness on my behalf ie ‘I want a different answer…’ but there was no ‘different answer’. Damn it. And that brings us back to that horrible word “Acceptance”.

So I had to hand all of MY control to the medicos and I had a real battle with that and at times I still do, even years later. I don’t want to accept ‘THIS’ but the reality is, I have no choice.

Merl from the Modsupport Team

Hi Shannon,

I am sorry that I have not responded in a while! My life is getting very busy now that the year is wrapping up. I also go to school in Upstate New York, however, I am very upstate. I am up in Canton, NY which is 20 miles south of the Canadian border.
I had a brain tumor when I was two years old. The tumor was in the left peduncle of my cerebellum. That is why many of the symptoms that I had and have are similar to Chiari. My tumor was only stage 2, however, it was very aggressive and grew back multiple times. I ended up having 3 brain surgeries: 2 tumor resections, and 1 surgery to install a lumber shunt. I also had 3 rounds of chemo and radiation.
I wouldn’t say walking is painful as much as it is just difficult. At least in my case. I had to relearn to walk both times and I have been struggling with side effects from my surgeries and tumor ever since. I think the hardest thing for me was strengthening all the stabilizing muscles and relearn how to do small tasks like tying my shoes. As with all types of surgery, your body will be really tired and you will have to go into recovery mode. A lot of sleep and lots of food cravings. That’s just because your body is trying to figure out what’s going on and how to repair itself.
With all of that said, I need to remind you that everybody is different and will react differently. I think you can definitely plan on walking and fine motor skills (Like typing) to be hard and tiring at first. Which, sucks for school, but typing issues and being tired are two things that are really easy to deal with in an accommodations plan!
My advice to you would be to plan for the worst or almost the worst. Plan on everything taking the time and be patient. Set yourself up so you can be patient as well. Don’t give yourself too many things to do and take some deep breaths and remind yourself that you have nothing to prove right now. Remember, you will be tired and need food, and patience because your body desperately needs it. Drinking coffee to get “rid” of being tired is not the solution. Stressing about an essay that needs to be turned in tomorrow doesn’t help either. In my experience, professors are nice, and asking for a delay in when your assignment is due or asking for them to deal with you is not too much. Brain surgery is a big deal and if they are pushing you around because you are tired or need help then you are correct to go to a higher authority because it is unacceptable for them to do that.

Accepting that this is happening to me has been a hugeeeee issue for me. I try to look at is as, others have it worse, but then at the same time, some people will never have to deal with what I am!

People tell me to pray and that they will be praying for me, but in the end, how much does that really do for me? I appreciate the gesture and them thinking about me but what we should really be praying for is that this surgeon knows what he’s doing. Of course he knows exactly what he’s doing but others words are not much help to me now-a-days.

Im glad you shared with me how you went for alternate options and how it ended up. My family has been telling me that we can avoid the surgery if I want to but I know that this is the best option for me.

Thank you again,

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Hi Jakob,

Thank you for sharing your story. It helps me realize that the surgery I am going through is an easier one than others have.

I am prepared for the worst, my classes being the only thing I am worrying about. I took less classes and easier ones at that, so I know I will be able to keep up for the first couple weeks. Depending on when I am able to get the surgery though, I may have to take a medical leave of absence. I have already talked to a couple of professors who have happily obliged to give me extensions.
Me sleeping and craving foods is nothing I can’t handle lol its something I do everyday.

As always, I appreciate the advice.

Hey Shannon,
For many years (10+) prior to my own situation I worked with people with disabilities (Physical, intellectual, mental health issues, sensory impairments) teaching independent living skills. Basically teaching people all the stuff most of us take for granted ie cooking, cleaning, budgeting, bill paying etc. So I’ve personally seen and worked with some of those ‘worse case scenarios’. But that doesn’t make that ‘acceptance’ of my own situation any easier. I have at times thought ‘Well, at least I’m not in ‘John’s’ position’ (‘John’ was a wheelchair bound former client) and I know I so easily could be. So it gives me some perspective in that way.

As for some perspective by others… ahh yea, good luck with that. Others are going to have views and opinions, even the educated medicos have differing views. Only people who have truly been ‘here’ have any clue about the rollercoaster this journey can truly be. Some people can be rather vocal. My niece has also required neurosurgery, she has recovered relatively well. Lucky her. Her and her partner came visiting one day and he started this ‘Well she’s OK, so what’s your problem? Get back to work’ sort of comments. Arrogant sod. About 3 months later he falls ill and is off work and I fed his own line back to him ‘Well she’s OK, so what’s your problem? Get back to work’. Let’s just say he was less than impressed, so I reminded him why, which only put fuel on the fire, but he hasn’t made a comment since.

I am NOT one for prayer. I was brought up to be a good little catholic, but I saw the massive hypocrisy behind it all. I completely accept that for others some sort of God or higher power gives them some sort of comfort and for them, that’s fine. It’s just not for me. I have had people say ‘I’ll pray for you’ and I tell them ‘don’t even bother, I’m beyond help’ :smile:

I would much rather follow the science than the alternatives personally. There’s a lot of what I call ‘hocus pocus’ theories out there. Differing treatments, differing medications and alternative theories. Trying to see clearly through it can can be difficult, so I go back to ‘What does the science say?’ Don’t get me wrong here, as I said before, I’ve trialled all sorts of alternatives, but once exhausted, what’s left? The science.

Merl from the Modsupport Team