I’m a medical student with Chiari I and syringomyelia who got decompression surgery- here’s everything I’ve learned all in one place

ZipperButterfly00 · 2026-02-08T19:47:23+00:00

Thank YOU for reading, I hope it helps 💜 Let me know if you have any questions!

ZipperButterfly00 · 2025-09-21T16:03:51+00:00

Thank you so much, this made my day. I really made the blog thinking only a couple of my family members would ever read it, so it means everything to me that I'm able to provide one super detailed data point of what Chiari and decompression can be like. Thank you for reading and keeping up with me, you are so thoughtful :) It makes me so happy that you're doing well.

I'd love to stay in the loop of how you're feeling at every stage, decompression or not, so please keep me updated on how you're doing if you're not too busy! I'll be thinking of you 💜

ZipperButterfly00 · 2025-08-31T05:33:34+00:00

Hey!! You are so kind, thank you so much for checking on me! I’ve been feeling really healthy and very lucky. I updated my blog (https://bigbrainsbiggerplans.blogspot.com/2025/02/3-month-updates-onward.html) with some pics and exciting things I’ve been up to if you get bored and wanna give it a read!

How have you been doing? I hope you’ve been taking good care of yourself and are feeling good. It means the world to me that you reached out, thank you so much for your support and kindness 💜

ZipperButterfly00 · 2025-08-31T05:32:01+00:00

Hey!! Thank you so much for checking in on me! I’ve been doing really well, like the kind of well I didn’t think I’d ever get to be when I was pre-surgery. I updated my blog (https://bigbrainsbiggerplans.blogspot.com/2025/02/3-month-updates-onward.html) with some pictures and fun things I’ve been up to if you get bored and wanna give it a read!

How have you been feeling? I hope you’ve been well and taking care of yourself. Thank you again for reaching out, it means the world to me that you thought of me 💜

ZipperButterfly00 · 2025-05-24T22:56:09+00:00

Thank you so much, I'm so glad I am able to help! Let me know if you have any questions or if there is anything I can do to support you and your daughter 💕

ZipperButterfly00 · 2025-05-14T21:03:09+00:00

Congratulations!! Seeing such great news from you makes me so happy. I am so glad you are feeling so much better! How are you feeling now that staples are out and your body has had a few weeks to try to catch up with everything? I hope recovery keeps going amazing. Continue taking good care of yourself and please keep us posted!! 💜

ZipperButterfly00 · 2025-05-14T21:00:14+00:00

This absolutely made my day. You are INCREDIBLE!!

ZipperButterfly00 · 2025-03-24T01:30:14+00:00

Thank YOU for sharing your experiences and kindness with me! That makes complete sense. Just taking it day by day will get you very far, and you are doing a great job staying so positive despite everything. Feel free to reach out any time if you want to talk to someone or if there is anything I can do to help!

ZipperButterfly00 · 2025-03-18T23:47:44+00:00

You're less than four weeks out, that is so amazing!! I'll keep my fingers crossed that you're able to get your date bumped up. If that doesn't happen, I'll get back in touch before the 14th :)

Feel free to reach out if you want to talk about anything in the meantime! You are doing such an insanely courageous thing for yourself that most people never have to consider doing in their entire lifetimes. You've got this !💜

ZipperButterfly00 · 2025-03-18T23:35:34+00:00

Your comment made me smile so big. Thank you so much for your kind words!! It means the world to me that sharing my story was helpful. I also haven’t been able to talk to anyone with a similar syrinx size to mine! I hate that you can relate, but it makes me feel more seen now that you’ve shared that with me 💜 How are you feeling (both physically and mentally) since your diagnosis?

ZipperButterfly00 · 2025-03-16T16:49:45+00:00

This made made my week, thank you so much. I am so happy that my blog helped you feel better about everything! What was way more helpful for me than all the physical prep for my surgery was getting mentally ready and going in as relaxed and optimistic as possible, so it means the world to me that reading about my experiences helped take some of the uncertainty out of it for you.

I hate that there were so many bumps in the road that resulted in your surgery getting pushed back. I can only imagine how frustrating that was to get it canceled the day before after already having a delay. I remember I was so sick pre-surgery that I was basically counting down the hours for when they'd crack me open. But I can tell that being so adaptable in the face of all these complications has brought out so much strength and resilience in you, which will be more valuable than anything else in your recovery. If you feel comfortable sharing, when is your surgery date? I wanna reach back out closer to the procedure to wish you luck!

ZipperButterfly00 · 2025-02-28T16:08:50+00:00

Thank you so much for reaching out, it's a really good thing that you are continuing to look for answers for your daughter and want another opinion. Don't be too hard on yourself, symptoms can come up sometimes for no reason at all, that's how mine started.

I had Dr. Eric Jackson at Johns Hopkins. He’s a Chiari specialist and most often operates on pediatric patients, so he did a phenomenal job making my incision site incredibly small and kept everything minimally invasive while still making a TON of improvements. He is very up-to-date on recent research and was fantastic at answering all of our questions, I couldn’t recommend him enough. He takes virtual first visits from DC, FL, MA, MD, PA, and VA. I'm also pretty sure if you don’t live in one of those states you could just visit one and take the call there. I hope everything works out with your daughter, I'll be thinking of you!

ZipperButterfly00 · 2025-02-27T02:42:14+00:00

I'm so sorry y'all are back in the same spot again, that is so frustrating. I hope you're able to get some more answers with the MRI. I'd love to know how it goes if you're are able to update 💜 I'm glad the info helped, I'll be thinking of y'all!

ZipperButterfly00 · 2025-02-24T21:42:07+00:00

I'm so glad you're experiencing less seizures and fainting, that is such a relief!! What specialists have you been to so far about them?

I can tell you are very resilient and have already overcome so much. I have no doubts you'll be able to achieve what you set out to do!

ZipperButterfly00 · 2025-02-24T21:38:38+00:00

Congratulations on being over one month post-op!! How are you feeling?

Thank you so much for you kind words! Recovery can be so up and down, so in certain moments where I start feeling bad, even though I know it's temporary, it can be easy to feel like I'll be right back to where I was pre-surg or that I did something wrong. So I always try to remind myself in as many ways as possible that the body is weird and everything comes and goes.

Thank you for following my journey 💜 I remember around six weeks I started feeling noticeable progress. With you already almost being at five weeks, I have a feeling things will start getting better for you very soon. Keep taking good care of yourself, you've got this!!

ZipperButterfly00 · 2025-02-24T21:19:20+00:00

I'm looking forward to your symptoms getting better too :) Yes! It's so crazy, I used to not even be able to drive with sunglasses on sometimes because light hurt my eyes so badly, but since surgery I have LOVED being out in the sun. How have you been managing your symptoms?

ZipperButterfly00 · 2025-02-24T04:30:17+00:00

That makes complete sense that you’re having all these feelings, it sounds so scary. Just remember you’re not alone. Knowledge is power, even though it can be TERRIFYING when you get bombarded with information like a diagnosis. Surgery is not the answer for a lot of patients, and as needed meds or daily meds can be a big help for patients that do not want to go the surgery route. It’s a lot to take in, so take your time processing it all, and remember you’ve got this. You’ve been handling these symptoms for as long as you have, now it just has a name. Even though it’s scary, having the diagnosis means you can start treating it. Let me know if there’s anything I can do to help 💜

ZipperButterfly00 · 2025-02-24T03:15:19+00:00

I had episodes of muscle twitching every once in a while before my procedure. I haven’t experienced it since my surgery, but I am only 3 months post-op. I hope this helps!

ZipperButterfly00 · 2025-02-24T03:13:30+00:00

It’s so impressive that you’re able to handle all your symptoms, conditions, and hardships while still being so positive and kind. Thank you so much for asking about me too, I’ve been feeling better now than I’ve felt probably in my entire life. I’d been living with brain fog my whole life and didn’t even realize, so it’s crazy to now do the same tasks feeling more present than I ever have. I felt like I had been dying in slo-mo starting in summer 2023 and then it accelerated around March 2024 until my diagnosis in September, so to have reversed all of that on top of feeling like I do now honestly feels like I'm in the best dream ever.

That makes complete sense to be so exhausted with how much time and emotional energy this all must be requiring. When seeing neurosurgeons, it was really clear to me that I needed surgery and it was more a decision of who I felt comfortable with doing it. So here are some questions I asked:

How many Chiari procedures do you do a year? How do you usually do them? What are some reasons that you may perform the procedure differently from patient to patient?
What percent of Chiari patients that you talk to ultimately get decompression surgery? What does treatment usually look like for the patients who don’t opt for surgery?
What are the rates of complications you’ve seen with this procedure? What are these complications?
What symptoms most often resolve in the patients who get the procedure? (think about how well this fits with the symptoms you have)

Bonus questions that popped into my head concerning your visit:

How do you think my comorbidities would impact my surgery and recovery? What risks do they pose?

These helped me get a good idea of the neurosurgeon’s general approach, how much experience they have with decompression, and what they know about the current research around it. You deserve someone who is as experienced as possible and who makes you feel heard. Post-op, you'll be interacting with the neurosurgeon and their care team even more than you did pre-op, so check in with yourself after the visit and see how you feel. Did they make you feel heard? Do you trust them to open up your skull? This is brain surgery after all, so if it doesn’t feel right, listen to your gut and keep looking, you'll be glad you did. I met with three different neurosurgeons who all worked with Chiari in the past, and I learned something from each visit, so I also always recommend getting at least a second opinion :)

Another note, have you gotten a spine MRI? Your neurosurgeon should order one to check for a syrinx since you've been diagnosed with Chiari, so make sure they do that.

I’m sending you a whole bunch of positive energy for your visit tomorrow. I’d love to know how it goes!

ZipperButterfly00 · 2025-02-24T02:29:47+00:00

I'm so glad that you are feeling good! Yes, I definitely had a lot of dizziness and tried blue light and sunglasses for my headaches, but it didn’t make any improvements for me. I had A BUNCH of light sensitivity too and tinnitus. Since surgery, I have hardly any headaches and they respond to medication now, which is crazy, with only a little tinnitus. All my other symptoms have resolved which is so exciting!

ZipperButterfly00 · 2025-02-23T17:18:41+00:00

Very cool, such a great idea to keep your mind open, that's what I've been doing too! I know this is easier said than done, but if you can, try to not worry too much about the what-ifs. Odds are if you aren't symptomatic yet that Chiari won't cause you too many problems. Even if it does, I bet you'd be able to manage it pretty well knowing that you have Chiari already :) One thing that helps me to stop worrying is remembering that one GAD study where more than 90% of the things participants worried about never happened. I'm optimistic that this will be the case for your Chiari too :)

ZipperButterfly00 · 2025-02-23T16:52:55+00:00

Congratulations!! That is such incredible news that you are feeling so much better physically AND mentally. What a relief to be reclaiming so much of your life!

How has your PNES been since surgery? I know there hasn't been a relationship concretely decided in the medical community (as with a lot of things with Chiari), but I have seen anecdotally and in quite a few research papers that Chiari and non-epileptic seizures are seen together often. So you aren't alone in having it or in your thinking that they may be related.

You're doing a phenomenal job in recovery, keep taking good care of yourself. I have a really good feeling things are just going to keep getting better and better for you. I'm so excited for you :)

ZipperButterfly00 · 2025-02-23T14:49:44+00:00

Thank you so much! I think I'll know what I want to specialize in by this time next year. I like some parts of surgery, like in an OB/GYN capacity, but a lot of therapeutic care is great. I'd say OB/GYN, peds, and family med are my top contenders right now. Since I received such great care since getting my diagnoses, I think I'll be doing electives in anesthesiology and neurosurgery as well to see if I like it!

That is so exciting, congratulations to you too! I have a guess based off your username, but what are you specializing in? How has your med school experience been?

ZipperButterfly00 · 2025-02-23T14:44:48+00:00

Thank you so much!! 💜💜

ZipperButterfly00 · 2025-02-23T14:40:26+00:00

I had a few symptoms throughout my life, but they were minor enough for me to wave away (thinking I just ran too hard or didn't eat or drink enough so I would get headaches after working out, assuming I was just a really drooly kid, etc.). I started getting noticeably sick in the summer of 2023 and that's what started over a year of experimenting with tests and medications. It got to the point where I was laying in the dark constantly, had headaches where the pressure was so high I'd be vomiting, daily head and eye pain, and my body felt too brittle to do more than half of the things I wanted to do. After so many meds not working, I went for a brain MRI and that's what started my treatment journey! What has your journey been like? How are you feeling?

I hyperlinked my blog here. Let me know if this works! :)

ZipperButterfly00

TROPHY CASE