How To Survive Brain Surgery: All The Non-Medical Questions You Wanted To Ask

I’ve started noticing a lot of people are finding my blog through brain surgery & Chiari searches. This post for those people who are about to go through brain surgery and a reviews of products I found helpful as I recovered from my decompression surgery. If there is a question you have that I haven’t answered about life before/after my surgery, ask it in the comments and I will try to answer it as best as I can. Please keep in mind that I am not a doctor (blood scares me) and my answers are based on my experience with surgery for Chiari – your experience will be different.

Do you have to shave your head for brain surgery?

It depends. For me, and my particular surgery, they shaved the back of my head. Before I knew I was going to have surgery, my hair was shoulder length, full-bodied (hello, frizz), and a curly mop. My surgeon told me, that if I left my hair how it was, the top layer would cover all the post-surgery dressings and the scar wouldn’t be noticeable. Being who I am, I took this as an opportunity to chop about 12+ inches off. Post surgery, when I couldn’t wash my hair on my own, my “let’s go as short as possible” cutting spree paid off. It was SO much easier to care for the surgical area without having my life-of-its-own hair in the way. Several times my mother told me cutting my hair was the best thing I could have done.

Although my surgery didn’t require me to cut my hair, I would highly recommend it. I cut my locks off the week before surgery so I would have sometime to figure out how to style it later. When people at worked asked what spurred the change, it was a way to transition into “oh, I’m having brain surgery next week” which isn’t an easy thing to share with people. More on breaking the news to people later.

The Hospital- What do you pack for the stay?

I packed a hospital bag. It had everything I thought I could possibly need while in the hospital for 3 to 7 days. We never touched it. The only thing I needed was a set of clothes to put on for the worst car ride of my life (more on that below). Everything else, I asked the nurses for. At one point, I even asked for undergarments because I didn’t want to get anything nasty on my personal belongings. Plus, I wasn’t allowed to have any personal possessions, besides Bertie, with my while I was in the Neuro ICU.

Should I have anything special at home for after surgery?

Every person is different; each day I found I needed something different. The first day, it was a heating pad. The second, I needed ear plugs because I was extremely sensitive to sounds. By the third, I was just starting to feel like a person again and I wanted to start moving more. I would have pillowcases and towels you don’t mind getting stained on hand. I don’t think any explanation is needed there…

For that worst car ride that you will take you home, pack as many pillows as possible into the car. Something I have found useful, even this far post-surgery, are special Chiari pillows. One is meant to help you directly after surgery; aptly called the “Pain in the Neck“. The other is for normal days. I use both pillows daily. The Pain in the Neck is great to have when you need additional support when sitting up; think of it as a giant well-made travel pillow. My mother purchased them for me in August and I recommend them to anyone who is having brain surgery. I take my “pain in the neck” pillow with me every time I fly. It annoys whomever is sitting next to me but I am comfortable and I don’t worry about rough landings because I have extra padding. The reassurance is worth the price-tag.

What is a great get well package/gift I could send to someone who is having surgery?

I think this really depends on the person having surgery. Food is always helpful. Consider placing orders at local delivery places to have dinner delivered at a set time. Don’t send anything to the hospital. It will probably get lost in the shuffle and there are lots of restrictions on what is allowed. Cards are great. Opening them gave me something to do when I couldn’t just sit there and watch any more tv. If you are going to send a game, toy and/or something that requires any kind of movement; keep in mind that post-surgery movement is very limited. Standing up on my own was a huge accomplishment; so was walking to the front desk of our complex. If my mom hadn’t been staying with us, someone to run errands or to sit with me while Joel went out, would have been extremely helpful. After my mom left and Joel went back to work, having someone around during the day would have been a great gift. I got rather bored being at home with limited mobility.

How Do you tell people you’re having surgery?

I only had 3 weeks between finding out I needed surgery and upgrade day. I told my supervisors first and they already knew that surgery was a probable option. From there, I hunted down HR so I could file the proper paperwork under FMLA, disability and so on.

At this point, only my main family members and key coworkers knew and I hadn’t put anything on twitter or facebook. I put together a list of people that I needed to tell before posting anything anywhere and started telling who I could in-person. The standard “I’m going to be out of the office for an extended period of time for medical reasons” led most people to assume that I was pregnant. Lesson learned there.

The main lesson I learned was tell people what you are comfortable with. You have different types of relationships and not all relationships require an explanation. With some people, I just wasn’t comfortable explaining my absence – and they didn’t need the details. With others, I was upfront and they saw the fear. The words I picked depended solely on my comfort level. I used my blog and twitter as a release for some details I had trouble verbalizing.

Can I see the scar?

I think my scar is kinda nifty, so I don’t mind showing people. But please don’t touch my head. The surgery removed the back portion of my skull and I am, now, extremely protective of that area. I let people who need to touch my head (e.g. hair stylist, doctors, acupuncturist) know, before they touch me, that the back of my head is going to feel different so they don’t freak out.

Comments

  1. Several of us are looking at starting a blog carnival (several blogs dedicated to a singular topic about Chiari) once a month. We would love to have you join us. If you are interested please email me.

    Thanks. HAVE A GREAT DAY!!! :)

  2. Jennifer

    What a great blog! I’ve been diagnosed with chiari now for 3 years. My symptoms have gotten worse. I have 2 small children; 1 and 5. I’m 35 yrs old. I have been on neurontin for the past 3 yrs. how long after you were diagnosed did you have the surgery?

    • Hi Jennifer – So sorry it isn’t getting better! I was diagnosed in January 2011 and had the surgery on March 21, 2011. Everything moved really quickly once we knew what was causing my symptoms. It also helped that, by chance, I live by neurologists and several neurosurgeons who know a lot about Chiari. Good luck with everything!!!

  3. Jen

    I just found your blog this early morning. Too bad I didn’t find it sooner, but glad nevertheless. I had Chiari decompression surgery last Friday, August 10th. I got home this morning, August 13th. This was certainly the worst weekend of my life. Sadly I knew of Chiari after an MRI in 2009, but I do not remember the doctor who ordered the test discussing the diagnosis with me. He thought my problem was my lower back. I finally tooks matters into my own hands and found an awesome neurosurgeon. I was diagnosed with a severe case of Chiari and scheduled for surgery two weeks later. I am so hopeful this will alieviate all seemingly unrelated symptoms. Thanks for sharing your experiences and helping others.

    • Hi Jen – I am glad you are finally (hopefully) down the path to relief! If you ever have any questions or just want someone to talk to, please feel free to contact me. Because of your comment, I realized I am almost to 1.5 years past surgery! I can’t believe it has been that long already; it seems like it was just yesterday.

      Good for you for taking matters into your own hands!! You have to be extremely proactive with your healthcare. If your doctor isn’t listening to you, find another. I’ve completely lucked out in that arena & had fantastic folks. The horror stories that others have shared though, just scare me. That open and collaborative relationship is important. You have to feel comfortable with them and them with you.

      Steffanie

  4. Lanette

    Steffanie, I really liked reading your story. I go in for my chiari decompression surgery on sep 14th 2012, im scared to death along with my family but i keep telling myself and everyone else, that jokes are welcome and im lucky because im going to survive brain surgery. I am 27 years old and have 3 small babies, 2 girls who are 7 and 5 and my lil boy who is 4, they are so worried that they dont even want to go to school and leave me alone for a minute, but my sister in law and i looked up the chiari ribbon so i went out and bought purple ribbon, key rings, glue and trying to find the zippers and my kids and i make chiari keychain ribbons for all our family and friends, and it eases their minds a lil, they have also started telling everyone that their mommy is a zipper head lol, i find that cute, but for anybody out there that has to go through this surgery i know its easier said then done trust me but make jokes, laugh, do fun projects that support u and let others know about chiari, it really does help….. my husband even joked that he was going to get a zipper tattoo up the back of his head when i first saw what my head would look like after and was a mess, and him just saying it made me laugh, of course i can see my husband doing that just so i wouldnt feel uncomfortable….. I was happy to read that you cut your hair because i to cut mine off and it was shoulder length, everyone says i should have left it long so it would have covered my scare but my thoughts were after having my head cut open dont really believe im going to feel up to fixing my hair so if i cut it short then i could do the messy look and it will still look good lol and now i know im right lol….. but thank u for posting, i know i didnt really know anything about chiari till i found out that i have it, so its nice to read every story you can about it, oh and for anybody out there that has to go through this surgery i wouldnt suggest looking at the after pictures of the surgery before you have your surgery, because every surgery is different and some of the pictures out there are ummmmm pretty hard to stomach….. yah i should have listened to my mom on that one. keep telling your story so it might help other worry worts such as myself :)
    soon to be zipperhead
    Lanette

  5. Patricia

    Your story is great. I had chiari decompression surgery 12-22-11 and went home the day after Christmas. It was the worst pain ever. I got very sick with meningitis and was in the icu for ten days the first time and seven the second. I went home with a pic line and the antibiotics I was on almost killed me from an allergic reaction. I still have chronic neck and back pain as well as chronic daily headaches. I have had 3 epidural nerve blocks in my spine with no relief and 1 block on my head to help with the headaches but have had no relief. I have an appointment with my Nero surgeon in December, not sure what he’s going to want to do to help with my pain, as well as the numbness, and my balance
    problems. My biggest fear is being paralyzed and not being here for my daughter i hate not knowing how I’m going to get through the next day and if its a day when I can walk or when I have to have people help me with simple tasks. Good luck everyone that goes through this operation and may God bless you all.

  6. Lainebooton

    I have suffered for 5 yrs. I pass out at least once a day. Finally got a diagnosis of Chiari las week. I’m at 18 mm and 31 yrs old with 3 young children. I have surgery in 2 weeks and am scared! My mom is flying over from the UK to help my husband with my care and the children. I am grateful for that :) I hope that this will be a cure.. I have one of the best Neuro surgeons in Texas! (He saved Gabriella’s life, the senate who was shot in the head). One question I have is how long before you can wash your hair? I read 5 weeks somewhere and I was hoping they were wrong ;) Do I Llow my 8 yr old to visit in the hospital or will I be too sick?
    Thanks for the blog and hope you are pain free!!

    • Hi there! I am sure you will do great! I was able to wash my hair within 2 weeks of surgery but had to be super, super careful around the surgery area. Your doctor and your nurses should prep you before you leave the hospital about how to care for your new “decorations”.

      For me, I was in the ICU the first day and I don’t think they let little ones in there. I would check to see what your nurses and/or doctors suggest. I would suggest waiting at least a full day, if not two, before they see you. It can be a rough ride after the surgery and you don’t want them to worry more than they already are! By day two I had a smile on my face and not just from the pain killers :) Good luck!!

  7. Sandy Tudor

    On behalf of my bride of 37 yrs she is a survivor of multiple brain surgeries for over 10 yrs now has learned to walk again and is doing better the further away from the last invasion the headaches have gotten much better she is the one who just found this blog on our new iPhone . We wish we had info like this before surgery this is great.good luck to all don’t give up keep positive , For love ones & caregivers be patient and understanding during the pain and balance issues we must know we can only imagin what it is like for the survivor try to see thru their eyes. In Sandys recovery we had help for we have known each other since we were 8 yrs old I married my best friend. When it got tough we could talk without talking her recovery is for both of us headaches under control less pain good for all. Happy new year all Martin & Sandy

  8. Geovanna

    Hola espero me cuentes algo más luego de la operación del cerebro acabo de operarme de un glioma veamos que viene en 5 días que me reúna con el médico quimio o radio y recuperandome pero créeme mi Dios me ha dado todo. Bendiciones!

  9. Andrea E

    Your story really helps me sooo much! I am only 15 and have to have decompression this summer i am terrified and since I didn’t even know chiari existed until I was diagnosed. How is your life after surgery? Do you think I will recover for school in a month a nd.a half?

    • Amie

      Hi Andrea! I know this is an old post, but I am 16 and scheduled to have surgery in a few weeks. I was wondering, how did your surgery go? How long were you out of school? Thanks

  10. Mary Beth

    I was wondering about more details on the two pillows you wrote about. I have a memory foam horseshoe shaped one and I have read about one that can be made from a regular pillow essentially with a broad seam down the middle. Your info is soooo helpful.

    • Hi Mary Beth – I have the ones found here. I got the “surgery special” and use both of them daily – still. One has a cut out like a giant pillow you would take on a plane which is great for trips, propping yourself up when you are in pain, and so on. I throw them in the wash fairly often to make sure they stay clean. You can still use normal pillows but when I have a bad headache, I personally like the density of these pillows. I hope that helps! Good luck!!

  11. Candice

    I had a benign tumor removed from my brain about 2 months ago. The scar has some very tender spots still….anyone experienced this?

  12. Robert Waller

    Hello I’m Robert I’m 25 years old and had stage 4 cancer I’ve been treated for 6 months with chemo it’s all gone in the body and I have 2 cancer brain temours 1 at the front on my head and its 18mm big and second 1 on the left side of my brain I think I’m gonna have brain surgery at st George’s hospital in London by mr henry marsh wat to u think my chances are on surviving the operation please contact me back

  13. Marty

    I will be having surgery on July 25th and am very scared but relieve at the same time. I have aneurysms and the doctor said he would cut my hair- only the front. I had my locks for over 10 years. I’m not sure what to do. I was thinking the same as you. Cutting them a week before. It’s hard having the front of your hair shaved and the back part in locks. Your blog was helpful
    Thank You
    Marty/Wash, DC

  14. Demi Hamilton

    I had the same surgery you had, and my Dr just told me recently that my spine could push up into my brain.. I am so scared!
    I don’t even know why I’m commenting.. I guess I just really need someone to talk to who has been through what I went through.

    • Hi Demi – Don’t be scared! I’m not a doctor, but I’ve never heard of that happening. It may be super rare for that to occur. Chances are we both have enough pressure in our heads to keep the spine where it needs to be :)

  15. Clarke Waskowitz

    Hi Steffanie,
    I’m 17 and a junior in high school and was just told I have Chiari. It’s all a pretty big shock, especially the large chance that I will probably need surgery. To be honest, I’m really scared about everything that’s going on and have a lot of worries that seem insignificant to others (will I need to shave off my hair that I’ve been growing out for 8 years, how am I going to take the SAT and ACT, how do I still try and maintain a sense of independence what with major health decisions being made for me, etc), and your blog has been the one candid source of information that I have found. Even though you were an adult when you had your surgery, do you have any tips about how to handle this?
    Thank you!

    • Hi Clarke –

      First, don’t worry too much. Second, you are going to rock the college essays with how you overcame so much at such a young age! Think of all the advantages of having Chiari! This is a great way to show how you make choices, overcome challenges, and navigate difficult situations.

      About the hair, ask if they can only shave what they HAVE to. They were able to save the top layers for me so I didn’t look too bad as my hair grew back. It does stink a bit, but you can save some of your work :) But if you have ever wanted to shave your head, now is the time to do it and have some fun. The scar is kinda fun to show off too.

      Make sure you ask for help when you need it. Talk to teachers and talk to your school. They legally have to make some accommodations for you.

      The last piece is to take your time getting back to normal. You will feel a LOT better quickly but your body is still healing. Make sure you don’t over do it too soon. Even three years post surgery I have to come home and take a nap after work most days. My body just needs the rest. It can be hard to accept at times, but you need to figure out what is best for you for the long term.

      Let me know if you have more questions! I’m happy to answer them.

      Steffanie

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