Chiari Online Support Group

Surgery is March 9th, 2017!

Hey all!
My surgery is less than 21 days away and I want to be prepared as possible. Can anyone give me advice on how to prepare my home. How to prepare my care givers, and what to except pain wise?

Hi Lizzy, mine is Tuesday and you’re right to ask because they tell you more about how to prepare as in not taking certain medications and not about the after care. Perhaps, they wait to tell us until the surgery is done in case any extra procedures need to be done. Make sure that you have plenty of shirts that button or zip up. Stock up on foods you like, even though you probably have someone to get those for you. I’m not sure about physical therapy for you or me but it’s good to search now for nearby providers in case it’s needed. Many of those come to your house.

Thank you for your help Pamela. Please keep me posted on your surgery. I’m praying for you!

I had surgery Oct 24. This is what I found helpful: Mealtrain, wedge pillow and neck travel pillow. I had to keep elevated. Alternating heat and ice. Shower chair. Be sure to get up and walk some everyday. Don’t over do. I slept a ton and took little 3-5 minute walks periodically. It was emotionally surprising for me. I was in a ton of pain for about 3 weeks. I took Diuladid for pain, muscle relaxants helped too. I also had a nutritionist as part of my team and she gave me a great how to eat for recovery guide. Brain surgery requires extra calories to help recovery. I lost weight and ate way more than I typically do. Drink lots of water. I was super nauseous for about a week and they gave me extra anti nausea meds.

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Thank you for your response. All of that is really good advice. I appreciate it!

Runnergerl, you mentioned “Mealtrain” and I’d never heard of it. I looked it up and it’s brilliant! I can imagine what a help that must have been: taking a meal to someone when they need a hand is the easy part! It’s organizing it that makes people crazy.

Thanks for mentioning that.

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So my friends set it up for me and I have two meals a week coming to me for six weeks. Plus it shows any allergies or foods my kids won’t eat. You can also list what times are good for visiting and delivering food. If you could pick a family member to do it for you ModSupport it would help you so much!

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Sometimes the power of this medium amazes me. Here we are, at our computers, making friends, helping, supporting and advising others. Then someone comes up with a great suggestion, and it transforms what might otherwise have become a massive task into something doable.

A generation ago, none of this existed. Technology can be a curse (oh, and don’t we know it …) but just look at this beautiful discussion!

DL, we wish you all the best in the challenging period to come! Keep in touch.

Seenie and everyone at Ben’s Friends

It was a lifesaver for us. We had 2 solid months of meals which was so helpful as I had several setbacks after surgery and spent 5 weeks in and out of the hospital.

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I hope your surgery went well and you are well on your way to recovery.

I had my surgery! It was one of the most painful things that I have ever experienced. I was in the hospital 4 days and I am now home. Despite the pain I feel more clarity than ever before. I am a little loopy at the moment but I will write more in the morning.

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Hang in there! I had surgery on Dec 15. The first couple of days were rough for me too. Then I started feeling better than I had in a long time. Good luck!

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Have patience and rest and take it easy. Take little walks every day and sleep a lot. The pain was pretty incredible for a couple weeks after surgery. I let people wait on me and I took little tiny walks every day, slept a bunch. It does get better.