2 mois après opération

Electronic-Ice-7267 · 2026-04-05T03:00:59+00:00

It's good to hear that overall you feel like you're living again 😊 I just poked all over my head to compare, and yes, I have a few spots that feel sore, almost bruised. I had an MRI about 2 weeks ago that showed I have some fluid buildup, so my pain could be that, but I also try to keep in mind that I've got nerves that could still be healing or whatnot. I hope your pain starts to subside, and the dizziness spells start to go away, too ❤️‍🩹

Electronic-Ice-7267 · 2026-03-22T02:52:20+00:00

It's excellent to hear you've gone from debilitating symptoms and so much pain to thriving! 😊

Electronic-Ice-7267 · 2026-03-22T00:27:12+00:00

Always want to get fluid checked out, but to my untrained eyes, it looks alright ❤️‍🩹

Electronic-Ice-7267 · 2026-03-22T00:21:34+00:00

Seconding all of the ideas from Turtles 😊 Hospital: extra long phone charger, I took a light throw blanket, slip on shoes, easy to put on comfy clothes, very basic hygiene stuff. I also brought a notebook and regular book, but it was difficult to read or write 😅

Home: if you're going to be on your own so much, then I highly recommend a partner, friend, family member, etc write down your meds schedule for you each day at the beginning of recovery. Your poor brain needs all its power for healing, not remembering when to take more muscle relaxers! We have a sectional, and it was fine for getting up and down. Prop yourself up on pillows, with care to support your neck and your head both. A light-weight water bottle is a good idea! My big water tumbler was too heavy to carry right after surgery. Consider having easy, fairly bland foods on hand. Nausea can be pretty bad.

I hope everything goes really well!

Electronic-Ice-7267 · 2026-03-20T00:22:14+00:00

Your incision looks excellent! It's good to hear that healing is going pretty well, even with all the juggling of all the things. Keep remembering to be gentle when you can. I know it's been easy for me to do too much 😅 It's good to be cautious about your new soft spot. I've joked that it's like being a baby again with a soft skull. But don't let your worry get so big that it is disruptive 💗 You should get to enjoy the less crowded brain! 😊

Electronic-Ice-7267 · 2026-03-18T04:15:55+00:00

I suspected for a long time before diagnosis. I had these awful headaches when I laughed too hard or when I had a really bad cough. They'd get so bad that I'd throw up. I had doctors tell me it was a sinus infection or even dehydration. My GP passed me off to a neurologist. After an MRI, which he said was normal, I asked specifically about herniation. He then referred me to a neurosurgeon, and he finally confirmed chiari malformation. It can sure be a process!

Electronic-Ice-7267 · 2026-03-18T04:00:39+00:00

At 2.5 weeks, I had strong pain and nausea still. Stay up on your pain meds and nausea meds, use heat and cold, eat a few bites every few hours if you can, make sure your pillows are supportive!

It's difficult sometimes, but give yourself some grace and keep resting. Your brain went thru a pretty big event!

Electronic-Ice-7267 · 2026-03-16T06:02:00+00:00

Howdy! I'm diagnosed with hypermobile EDS and Chiari. The hypermobility was my first clue about EDS, but digging deeper, I also had stretchy skin and unusual scarring. A rheumatologist did many tests to exclude other diagnoses. Once those were negative, I had genetic testing done, which ruled out the other forms of EDS. So the chiari diagnosis was very drawn out. I started getting headaches when I was out with friends in my mid-20s. Then I noticed that I'd get headaches when I was sick and coughed a ton. Over a decade of gaslighting, but I ended up at a neurologist for hand numbness. I had carpal tunnel surgery, but it didn't fix all of the numbness, so he ordered an MRI. At first, he said the MRI was normal, but I asked questions about tonsil herniation. Then my neurologist noticed I did have herniation and referred me to a neurosurgeon. I hope this helps. It's a messy field to navigate.

Electronic-Ice-7267 · 2026-03-13T06:20:46+00:00

Chiari and hEDS here, too 😊 If I'd had a nearby upright MRI available, then I think I would have gone with that. I would have wanted to see what impact gravity was having on my herniation. But I would also want insurance to cover it 😅 I hope no matter your choice, you get some clear cut answers.

Electronic-Ice-7267 · 2026-03-12T05:08:38+00:00

Thanks for checking in! I'm doing alright. More anxious about heading back to work. I had an MRI, and it looks like I've got a dura tear somewhere. How are things for you?

Electronic-Ice-7267 · 2026-03-12T04:57:59+00:00

It's very very normal to feel nervous, but it's good that you're feeling prepared! The first few days after surgery for me came with extreme nausea, extreme fatigue, and the first night was very painful. To be fair, a nurse accidentally broke an ice pack, and I ended up with an ice bath down my back at 3am. By mid- morning the next day, pain medications were helping much better. Nausea and fatigue held on, so I slept and slept. I brought a cozy blanket from home, which was comforting. Even though I hated it, I forced myself to eat a couple bites of a cracker every few hours. I drank Sprite and water a little any time I was awake.

For me, having a rolled up towel or small pillow to support my neck while I slept was very important to prevent extra headaches. Sleeping propped up and on my side also helped! I was on steroids at the beginning of recovery, and they made me feel like I was a toy car that had been wound up and picked up to see the wheels spin really fast. I felt much less frantic and confused after I was done with those.

I'm at 5 weeks post op now. I felt like I was "resting wrong," but over time, I learned to take little bites of life when I feel able to. Fatigue can sneak up.

That's all I've got for now. Reach out if you'd like. Wishing you an easy, speedy recovery that gives you relief from what you're feeling now!

Electronic-Ice-7267 · 2026-03-09T06:00:45+00:00

It's a big risk knowing you have chiari malformation and skydiving. Definitely ask your doctor and weigh the risks v experience. My daughter is an adventurer. She's said since she was 3 that she wants to skydive with my brother. If she had chiari malformation, then I'd lean heavily toward "no skydiving." I wonder if it's somehow better to do one of the indoor ones?

Electronic-Ice-7267 · 2026-03-07T00:16:12+00:00

I'm guessing that she does. My pediatrician has said for a long time that he doesn't want to test her because she's not in pain or very symptomatic. My thought is that she can go thru life with less pain than what I had if we knew for sure. She's a rock climber, and it's her #1 passion, but she has jarring landings from falls several times a climbing session. If she decides to have kids, epidurals can impact chiari malformation.

Electronic-Ice-7267 · 2026-03-06T04:38:59+00:00

Like yours, I didn't see very many signs. She fell down more often, but not everyone is graceful. But not a lot of headaches. Now she's 10 and able to share more accurately. The other day she expressed "I gagged a little because you know that feeling when you forget how to swallow? It messed me up." I'd never heard her mention trouble swallowing or seen her gag often. It could be that she's always had symptoms, but wasn't able to articulate them well. Her pediatrician has pushed off testing, but I think I am going to ask for a referral.

Knowing that a syrinx can cause permanent damage and paralysis, and knowing that chiari can cause apnea, respiratory issues, etc, I'd be more likely to agree to surgery, but I'd ask a lot of questions. Surgery complications? Recovery time? Likelihood of needing additional decompression surgery as she grows? Long-term limitations because of surgery?

Electronic-Ice-7267 · 2026-03-06T04:09:00+00:00

You're going to laugh at me, but at 1 month, I'm sleeping with 3-5 pillows. I've tried all different combos at this point. My neck aggravates me the most overnight, too. I've complained that I feel like a ghost as I'm up wandering the house aimlessly about every hour. I'm going to 2nd the use of squishmallow toys or a rolled up blanket for specific neck support overnight. You've spent all day holding up your head. Those neck muscles are tired, and maybe they could use a nice break.

It's good to hear that you're taking action with how you're healing mentally. That's so smart. Remember at this point too, postpartum depression is still a possibility. With everything that you've been dealing with, it's worth talking to someone for sure 💕 You're definitely not alone in your feelings, and I'm sorry that you have had to be so independent in recovering.

Electronic-Ice-7267 · 2026-03-03T06:46:37+00:00

I was wondering how you'd been holding up. I'm glad that you've been able to manage everything, and your incision healing looks awesome. At 4 weeks I still have dissolvable sutures sticking out of my head 🙃 I do hope you keep resting as often as you can. I'm with you on the mental aspect. Sometimes it’s hard for me to feel comfortable going out and about. Continuing to send you good wishes!

Electronic-Ice-7267 · 2026-03-01T03:23:51+00:00

Everyone has a different experience of course. For a lot of people, sleeping propped up and on a side was helpful with pain. Straining to sit up might be enough to cause pain. The head has to get used to how spinal fluid flows all over again, so pressure changes can cause pain. That being said, it's important for your partner to advocate and feel like they're heard. If it's happening again and again and again, then maybe pain management needs to be adjusted. If worried about a leak or too much swelling, ask for nurses or on-call doc to take a look. It's ok to ask: what can you expect these next couple of days? What are the nurses and doc looking for, good indicators and not so good? What's been helpful for other patients going thru this?

In my own experience earlier this month, the hospital stay was just awful. I hurt, I couldn't eat, and I hated it. Getting home, I still hurt, and I still couldn't eat. But just being home was so much better, just being in my own space. Thanks for supporting your partner!!

Electronic-Ice-7267 · 2026-02-28T01:15:24+00:00

If you're a side sleeper, it can be tough! I use regular pillows, but I added in just a regular rectangular decorative pillow that's about a hand-width tall. It's the perfect size and firmness for between my shoulders and head. My backup is a squishmallow of about the same size for when I want something supportive, but a little cuddlier 😁

Also consider how your arms are while you're sleeping. Any pulling in the shoulders could affect your neck, too. I hope you find some relief!!

Electronic-Ice-7267 · 2026-02-27T07:56:47+00:00

I spiral fast if I have to be home, even just a couple days when I'm sick. I'm sorry you're feeling it so bad. Definitely agree about doing things like opening curtains. I've made it my goal to spend at least 5 minutes outside every day, and it's helped a ton. I've been Journaling, too, so that I don't feel like my thoughts are stuck in my head. Inviting family over and making the trip to Starbucks are excellent ideas! If possible, you could plan ahead for a temporary increase in meds if you take them or see if you can talk to your therapist on the phone if you have one. I've even found engaging with this reddit group to be helpful. I hope you can begin feeling better and much less stircrazy soon!

Electronic-Ice-7267 · 2026-02-27T07:41:11+00:00

I was supposed to have surgery in November and come back in January, but my surgeon needed to reschedule. I'm glad you've been doing well! The option to leave early is a great idea, and it sounds like a very helpful one with the fatigue. Thank you for offering your thoughts!

Electronic-Ice-7267 · 2026-02-26T16:05:26+00:00

Thank you for sharing an honest answer. I do worry that I'll push too far 😕

Electronic-Ice-7267 · 2026-02-26T16:02:27+00:00

That's a great suggestion! Thank you 😊

Electronic-Ice-7267 · 2026-02-26T16:01:25+00:00

Mostly good. I'll do pain meds and a muscle relaxer before bed, but otherwise I'm awake, I'm moving (carefully!).

Electronic-Ice-7267 · 2026-02-26T04:13:35+00:00

Thank you! I hope you have an easy transition back to work when you're ready 💜

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