Chiari Online Support Group

1 week! Doing alright

My decompression surgery was last Wednesday afternoon. I am home. Resting as much as possible. Eating has been a bit of a challenge. Chewing seems to bring on muscle spasms so I am sticking to soups, oatmeal, homemade pudding. Trying to get in as much healthy stuff as possible right now. Nighttime can go either way. I sleep through taking pain meds and it takes some time to get the pain under control again. I just don’t want to put so much of that stuff in body. I have a memory foam pillow which saves me. I alternate ice and heat packs on my neck as my DR instructed not to place anything directly onto the incision site right now. Staples, all 37 of them, come out next Tuesday. The incision burns at times. If i stretch my head too far that burning will knock me on my bottom! Stretching, Ooooh so important. Every chance you get you better be stretching out all those beautiful neck muscles. Like in my tai chi class, your head is hanging from a string above, your spine is line of pearls, hanging there. Looking down is the hardest one for me now. Down and to the right.
Life is good. I can walk! I get out walking several times a day. All the neighbor kids are lining up at the door to take me for a walk. Quite funny.

I’m happy to hear your surgery went well. Mine is in a couple of weeks, so I’m glad to read about personal recovery stories. I hope your healing is smooth!

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Are u sure u are supposed to be stretching 1 week post op?
I was put in a hard collar for 6 weeks.
Glad you are doing so well
Take it easy tho

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Great news to hear you are feeling as well or weller (not a word I know!) than expected.I know my daughter found eating to be particularly challenging after her surgeries but it did improve quite a bit by the 2 week mark. Sending positive thoughts for a continued recovery.

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Oh, absolutely yes. Stretch starting the morning you wake up. All those muscles behind your head that they cut through are going to kill you if they aren’t stretched. Every waking moment I am bending and turning to my max point. It keeps the spasms down and then I don’t need as much medication. The hospital nurses and P.T. gave me a print out on the appropriate stretches to do. I was not given any kind of collar nor was the option ever mentioned. Movement is key. I am also out walking several times a day. I feel good. I wake up in pain during the night but heat and ice and good show keeps me going.

You know… the surgery was scary to imagine but with it all over now, it wasn’t that bad. I had a great team of Doctors and nurses. I knew so much going in that my attitude to stay strong and challenge myself with this was going be everything. If you give into the pain, it will overcome. If you want to take the drugs and lay in bed, it’s very easy to do. But if you want to see what life is going to be like without the pounding headaches and dizziness all the time you have get moving. I am too early to really tell if it’s worked but I am very positive and refuse slow down now. The hardest part was getting myself to surgery. And it wasn’t so bad. The night following surgery when they had to move me from one bed to my room bed was the worst. I screamed and cried and then, got right over it. I was walking the next day. Getting up and out of bed alone. I left the hospital at day 3. You can do this. You can do this. Your thoughts control everything and every cell in your body. Keep your thoughts positive. I think you will do great! Keep me posted

I am living off of pudding right now. Little trouble bending my neck in a way that I can swallow chewed food. Rice pudding, trying to keep sugar out of my diet. And good to hear your daughter was doing well after a couple of weeks!

I think that it is absolutely great that someone else has received the advice to get the neck muscles moving after surgery from their medical team and then did it! Great job on following spot-on post-surgical advice!

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I wonder why I was put in a hard collar for a month and even now my physio just gives me massage and tells me to be careful.
I guess every Chiari case is different

Now I’m feeling totally lost and like I have been given totally the wrong advice.
I’m not doing good at all
The more i move … the worse I am
8 weeks post op and i still can’t walk like a normal person. Movement seems to cause more pain and weakness.
I had the op because it was causing paralysis and breathing problems - not headaches.
Team. I don’t have a team
I have a phsyiotherapist that had to look it up

Jenna, when you are feeling up to it, let us know how your recovery is going. :slight_smile: Best wishes!

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4 weeks Post Op! Doing pretty good here I’d say-
I haven’t yet found a way to stretch the muscles around my throat. Meaning, when I started eating regular food again a few weeks ago it sometimes gets stuck in the top of my throat. It goes down with some fluids but strange. It will get better. I am walking at least 2 miles a day, with dog and kids in tow. I am slow some days if I did too much the day before or my body just wants to rest. I still have to stretch, a lot. Every few hours I sit down and use my hot pad and then stretch, UP and down, side to side, turning both ways. If the spasms start, I stop, and try again in an hour. I can’t drive yet because of this so it is my goal. My son starts school next week and I have to drive him.
I have an MRI in November. Other than that the PA that works with my surgeon had checked on me daily for the first week and then tapered off. Good people there at the Anschutz Campus in Aurora CO.
Best news, I can tell for sure now that my headaches and dizziness are gone. I have read stories about this getting better for many and then coming back after a few years. I have every hope in the world that this is not that common. People with a good recovery aren’t the ones typing about their success online, but they need to. I am a happy camper right now. Enjoying it all…

I just read your surgery is scheduled for today- I hope it goes well. You let me know how you are when you are able…