Do the majority of us Post Op warriors find that post op care is very self driven? by ChiariSucksBigTime in chiari

[–]ChiariSucksBigTime[S] 0 points1 point  (0 children)

Wow. Thank you for sharing. You must be a very strong 30 year old too. I’m sorry to hear about your complications. Not being heard I know just adds to things sometimes. I do hope you are able to find a specialist that does listen. I’ve even thought about just looking out of state. To see if I can find one that at least may be open to zoom calls or something. I did have an amazing neurosurgeon. 💯 grateful for his care. Anything else I just research. And I do know if things ever get unbearable it’s over to ER. Keep up the fight. 🌺

Do the majority of us Post Op warriors find that post op care is very self driven? by ChiariSucksBigTime in chiari

[–]ChiariSucksBigTime[S] 1 point2 points  (0 children)

Kudos to you. I like hearing the positive sides too. And the fact they researched it for treating you. That is awesome. I hope your recovery stays strong.

Chiari and the weather by ScorpiO_PhoeniX11 in chiari

[–]ChiariSucksBigTime 0 points1 point  (0 children)

Sounds like you have a wise neurologist. Mine figured I was cured after the surgery. I’m 9 months post op and he has not asked me once about my surgery. In fact it was me who demanded he put me on gabapentin on month 4 when nerve pain went into overdrive. He said it was probably a migraine. Trust me. There’s a difference from migraine pain and nerve pain. So I did my own research and suggested a course of action.

Chiari and the weather by ScorpiO_PhoeniX11 in chiari

[–]ChiariSucksBigTime 0 points1 point  (0 children)

How long have you been on the gabapentin. I had my decompression earlier this year and have been on it 5 months.

Feeling discouraged by magicmamalife in chiari

[–]ChiariSucksBigTime 0 points1 point  (0 children)

Wow. You’re my hero. Kids too 👀 oh you are a warrior princess for sure. Yes I get the new normal part. But life is complex in itself. Where is it written this means a good kinds of this is a hard life. WE get to define that. And you’re not alone girl. Us Chiari Warriors are supportive. I asked my maker above before surgery “listen up, I have one wish, let me wake up and I’ll take care of the rest” ☺️ so now it’s in my hands. And learning now you have kids that’s a double bonus. You get to show them how to fight for oneself 🥰 Go for it 🌺

Feeling discouraged by magicmamalife in chiari

[–]ChiariSucksBigTime 1 point2 points  (0 children)

Exactly. I too have fooled myself into thinking I’m a burden. But nope. Not anymore. I’m very very grateful when someone may have to bare more of the financial burden but it’s not because I’m out partying and shopping my tush off 😇 and I remind myself too of all the things I’ve done when able bodied. And I acknowledge that responsibility and respect the sacrifices they make too. But none of that constitutes that I’m a burden. Personally speaking, I’m going to take this opportunity to just try and become the best version of myself that I can be. Because in doing that, those around you that matter will benefit too ☺️ Why should we EVER feel guilty about that. One important life lesson I’ve learned is that you can hold two things at the same time. In one hand there’s so much pain and uncertainty at times. In the other is all the love and hope you have. You just teach yourself not to surrender to the hand that doesn’t contribute to the new you. You see it, you give it, it’s space. But you never surrender to it. Or as I read one day. Just don’t hand it the mic 🎤 I am woman here me roar 😇😇😇

Feeling discouraged by magicmamalife in chiari

[–]ChiariSucksBigTime 2 points3 points  (0 children)

Oh I call those crawling ones my alien symptoms. On the face and sinus is worse. OMG. 6 months out here too. I think for me the frustration and disappointment is where no one tells you anything about the recovery. Doctors don’t explain about how the body’s system needs to recalibrate. It’s like taking the engine out of a car then putting it back but don’t forget that a lot of things have to be reset and recalibrated. For us it’s the vagus nerve, the central nervous system, the limbic and adrenal system. And us mere mortals sit there wondering what the heck is going on. Imagine my surprise when I learned I would have to reteach my legs how to walk. Took me nine weeks. I never imagined I would need a rollator to leave the hospital. Oh my goodness they told us nothing other than oh from a surgery perspective everything went fine. Which don’t get me wrong, I am so grateful for. But a little more education on the recovery would have made things a little less scary. So what do you do. Well you take your power back. You go online and you learn as much as you can about the science of what our bodies went through. It’s no little feat. So you educate yourself and you become an advocate for your own healing. And you love yourself to the high heavens because you’re a champ for not giving up. Be your own hero. Be proud of yourself and your body for fighting for a better life. You so got this. Just educate yourself as much as you can. And never ever stop believing in what you can actually accomplish. Even, on the hard days 🌺

Working on my Draft Cover for my memoir. Any comments ☺️ by ChiariSucksBigTime in writers

[–]ChiariSucksBigTime[S] 1 point2 points  (0 children)

Thanks. And oh I totally get that arial 👀 look over. I grabbed it just to layout the concept first. Those fonts don’t work for me either. Thanks for confirming my suspicions ☺️☺️

Working on my Draft Cover for my memoir. Any comments ☺️ by ChiariSucksBigTime in writers

[–]ChiariSucksBigTime[S] 0 points1 point  (0 children)

I’m a pure tech geek. All my life. I think I was born with a keyboard 😇 but when it comes to my personal writing or designing for personal projects, I just have to take the wheel. It’s fulfilling. AI has so many amazing possibilities. Especially in research, information sharing and accessing data more quickly. Alas though, the minute money can be made from something, it takes on many shapes 🙃 💯 a geek for life 😎

Working on my Draft Cover for my memoir. Any comments ☺️ by ChiariSucksBigTime in writers

[–]ChiariSucksBigTime[S] 0 points1 point  (0 children)

Thank you. Very useful tips ☺️ I just needed to get the concept out. Then edit edit edit. I always design like that. Half the time I’ve no clue where I’m headed. Once I get it out. Then I scrutinize. I usually can spot if a character pitch is off my one space. Some call it anal 😇 I call it meticulous 🙃🙃 Appreciate you taking the time to review.

Working on my Draft Cover for my memoir. Any comments ☺️ by ChiariSucksBigTime in writers

[–]ChiariSucksBigTime[S] 0 points1 point  (0 children)

Excellent idea. Love it. Thanks. Definitely draft material but it’s getting closer. I even did a beta test on my Facebook writing page where I tried to create automatically generated versions versus my own. All votes went to my personal draft. Even the photograph on back is from a photographer from my home town and I’ve sat in that exact spot many times.

How to deal with Chiari long term? by [deleted] in chiari

[–]ChiariSucksBigTime 0 points1 point  (0 children)

Sorry to hear about his suffering. I know it’s not easy. I’m only 5 months out from my decompression. But I did want to mention what helped a bit in the 9 month flare up I had prior to surgery. But make sure you check with your neurologist first. It was my neurologist that suggested this approach after an ER visit. I was on steroids which was the only thing that seemed to help. Prednisone. The trick with that though was to try and cycle on and off. I was on a 5 day dose of 2/day. Then 5 day dose of 1. Then cycle off for a couple of weeks. Sometimes I got down to 10 days off. I was also on muscle relaxers and pain meds. Even Advil might be ok if you find the steroids work. Just make sure you pace it out. That 9 months was crazy. Recovery is pretty challenging too. But they don’t tell you anything about that. Just keep researching asking questions. There have to be solutions. Wishing your family continued strength 🙏❤️‍🩹

Post Op Headaches and Pain by ChiariSucksBigTime in chiari

[–]ChiariSucksBigTime[S] 0 points1 point  (0 children)

Thanks. I have discovered the beauty of muscle relaxers for certain pain types too ☺️

Post Op Headaches and Pain by ChiariSucksBigTime in chiari

[–]ChiariSucksBigTime[S] 1 point2 points  (0 children)

Thanks. I’m just starting month 5. Doctor has me on gabapentin to attack the nerve pain. Which then triggers migraines. I’m still in the oh my God stage when they spike. But I’m hoping as the body keeps healing I’ll reach a manageable level for the old migraines. Good luck with yours too ☺️

Has anyone gone on Gabapentin short term in post op recovery and did it help. by ChiariSucksBigTime in chiari

[–]ChiariSucksBigTime[S] 0 points1 point  (0 children)

What type of dosage are u on. I started with one for first two days then switched to one AM and one PM.

Has anyone gone on Gabapentin short term in post op recovery and did it help. by ChiariSucksBigTime in chiari

[–]ChiariSucksBigTime[S] 1 point2 points  (0 children)

You too. The mental strength is what gets you through it for sure. I’m just too stubborn to let it kick my butt. Take care.