Aimee’s To-Do List/Recommendations for Chiari Decompression Surgery

Aimee’s To-Do List/Recommendations for Chiari Decompression Surgery

This is from my friend and Chiari confidant Aimee Zemanek 🙂 I am re posting this with her permission.

It has a lot of great info and is another perspective on Chiari.

 

Aimee’s To-Do List/Recommendations for Chiari Decompression Surgery

Remember that it takes a full month for every 15 minutes that you are under anesthesia before your body fully recovers. You might feel great a few weeks after surgery but DON’T over do it. You will get tired very easy. Listen to your body. 

I had my stylist shave my hair for me before surgery. Ear to Ear from the Occipital Ridge down. Don’t worry about your hair… it grows back! Mine was completely back in about 8 months. I occasionally get sad that no one can even see my scar any more because my hair all grew back.

*ASAP* Look into and see if you can get this pillow ordered and delivered in time. I got mine from Med Pillow. I still sleep on mine every night. If you are a back sleeper it will help to keep your staples away from the pillow. If you are a side sleeper, then that hole supports your neck muscles while your shoulder fits perfect in the middle.

Print out the form for a temporary handicapped parking permit and have your surgeon sign it BEFORE your surgery. That way you will have it already when you get out of the hospital. Here in Texas they gave me one for 6 months. This will prevent you from having to walk so far during recovery. You get these at the same place you pay for your car registration and get new license plates.

Plan a dinner party or something for the night before. Don’t sit at home and think about what is going on the next morning. Go have fun with friends and get some good food.

Get gift cards for area restaurants so you can send visitors to go pick up food for you since hospital food sucks. I also had gift cards for the area bubble tea, frozen yogurt and gelato places (is there a pattern here?)

Have someone with you at all times, 24/7, around the clock. No exceptions, while you are in the hospital. I would say this should be the first couple of days at home too.

Most important! Listen to your body! We are not all one-size-fits-nobody. We know our bodies better than they do! (They kept saying I had to stay on a “clear liquid diet” in right after surgery ICU but that overly sweet apple juice, jello and sherbet just made the nausea worse. I sent my dad out for milk. The nurses were furious but I never got sick again and was eating a Wendy’s hamburger the next day for lunch.) My body was used to drinking a lot of milk (like 3 gallons a week) because I had been taking anywhere from 7 – 22 prescriptions every single night for the past 4 years and 4 ½ months.

I will try to put this one delicately. Anesthesia basically puts our entire body & all of the internal systems to sleep. It will take a little while for some of these systems to wake up… including your digestive system. My Suggestion would be to make sure they give you some sort of “Dulcolax” or “Ex-Lax” type medication before you leave the hospital. You do not want to be dealing with those types of issues a week or so later. Straining with 15 staples in your head will make you want to pass out. *If you catch my drift

Ear Plugs… Hospitals are loud!

Make sure you have button-down or large V-neck pajamas to put on after the catheter comes out… you will want out of that dumb gown.

Don’t forget socks… preferably if you can find the no-slip kind with the nubbers on the bottom.

Wet-wipe face cloths. Washing your face will feel good even when you can’t get out of bed.

Take your own pillows in colorful pillowcases (so you can tell which ones are yours).

Take chap stick… hospital air dries out your lips.

Straws that bend – bending your head to drink will be an issue at least until the staples come out.

Hair Scrunchies / Rubber Bands, this will help keep your hair away from the incision, and make it easier to wash.

Scarves! This cold weather we have been having will be very sensitive on your neck / staples / incision. Especially with part of your hair missing the back of your head/neck will get cold. 13 months after my surgery and I still love my scarves.

The first few days at home, sleeping in a recliner might be more comfortable than sleeping on your bed. 

 Once you get home, if it is possible try and situate yourself somewhere in your home that is on the one level with a bathroom, kitchen, bed … If it is possible. Stairs after surgery will add pressure to your incision area and plus you might not be able to walk them alone. Please think of safety as well. I had a hard time walking where I was going because I couldn’t tilt my head down very far. The first few weeks when you get home you need to be pampered. No lifting, bending over, or reaching over your head. (Nothing Heavier than a Gallon of Milk)

If possible purchase or get a loan of a shower chair for bathing and you use a hand-held shower hose to wash down your body to get refreshed. And if/when someone can help you. Have them present, if it is someone you trust they may even wash you down gently.

For your care takers…take a comfy pillow / blanket for the waiting room since they probably won’t let anyone sleep in the ICU room. Have a CHARGED phone in case they need to send you a text message.

When we washed my hair… I put my remaining hair in pig tails and leaned over the double kitchen sink. My mom held a towel over my incision and washed one ponytail at a time (one in each side of the sink). This will be 1000* easier if you have a spray nozzle on your sink.

Once you get home… someone can use a cotton ball and baby oil and get the sticky glue residue off of your scalp from the band-aids. Take this process slow and easy.

Oh… and if you think you are going to sneeze… brace yourself and your neck. Put your hands behind your head with your elbows in front of your face and hold on. I’m not trying to scare you… but sneezing with 15 staples in the back of your head hurts worse than the surgery itself. ( Hurts like hell with stitches too! Hurts even after surgery esp. when you have fusion!!)

Check out all the t-shirts available that talk about our condition…I ordered the “too much brain to contain” shirt and wore it home from the hospital. (just make sure you don’t buy anything that says The Chiari Center Foundation… sadly, that is an organization that is being investigated for embezzlement and making money off of people who are suffering.

The drive home was very stressful. Be very careful of bumps and stuff like that.

After you have recovered, you might want to do some light exercise…but you need to be very careful about your neck and lifting things over your head. I go to Slo-fit once a week (the one in Plano, Texas). They know all about Chiari because I have been going there for almost a year now. It is very slow strength training to help us get back the movement in our numb arms, etc.

Save a pain pill for the office visit when they take out your staples. The staples coming out wouldn’t have been so tender but my hair had already started growing back and they were pulling the hairs out with the staples.

A BIG thank you to Amiee for sharing her Chiari knowledge. I still look to her when I have questions! 

Thank you all for supporting my blog, and listening to us in the Chiari community. I can not stress enough how important it is for the medical community, and the general public to listen to us and take us seriously.

 

Stay Positive!

 

Christy

Things I wish someone would have told me about surgery…

Things I wish someone would have told me about surgery…

You don’t need to take any of your regular medications to the hospital. They will give them to you there. Please take a list of everything you take, even over the counter medication.

Make sure you have your MRI with you, if they don’t have you do one there.

You don’t need a hospital bag. You will be pretty drugged up and won’t care. I brought snacks and books and didn’t touch anything. The first few days I was on a fluid diet, and after that, they feed you really well.

Make sure someone can stay with you the whole time. It was so important because you won’t remember anything. My husband had to stay on top of them to make sure I was getting my pain meds. STAY ON TOP OF THE PAIN MEDS!!

Make sure when you go home, they give you a script for your stomach. (Zofran) I threw up so much when I got home, because they gave me something for nausea in the hospital, but not for when I got home. I ended up in the hospital 3 days after I came home because of dehydration.

The car ride home WILL SUCK! Some one else will need to drive you, slowly, and make lots of stops. Make sure you take pain meds before you leave to go home. It was the most painful, nauseating experience of my life. Make sure you have a pillow or two to help you get comfy. I found holding a pillow helped me a lot. Have something to throw up in, and a lot of water.

I had surgery out of state. Contact your regular doctor before you go to get an appointment about a week after you get home. You will only get about a week of pain meds and will need to get a new script from you family dr. It’s a NY law that they can’t give you any more meds to take across state lines.

Food will taste funny after you get home. I couldn’t eat anything sweet for months. It tasted like garbage to me. It is from the pain pills and the zofran. Make sure you are eating as much protein as possible. It will help with the healing.

If you are getting really sick, you might need a different pain med. They had me on two Percocet every 6 hours plus Valium. I couldn’t stop throwing up and hallucinating. Family Dr. switched me to Tylenol 3 and I was just fine and the pain was more than controlled.

You won’t be able to bathe. Don’t even try. For the first few days, use baby wipes to clean what needs to be clean. You just won’t have the energy to do otherwise. I also just stood in the tub and had my husband wash me with a wet rag. I tried to take a bath, but got stuck in the tub. Your neck muscles have just been cut open and can’t support that type of movement.

Make sure you are taking some sort of vitamin. Your body has been through a lot and you need all the nutrients you can get! I found after the fusion I couldn’t swallow a regular vitamin, so I got Flintstones chewables.

When you get home, don’t try to sleep in bed. Get three good sized pillows and set them like steps on the couch, with one cradling your neck, one under your shoulders, and one in your mid back that way you won’t move around. It is actually pretty comfy and if you don’t have a recliner, get one or borrow one. I spend my entire day in the recliner. It is comfortable, and it is easy to get out of and into.

It helps to keep a log of symptoms from day to day, because you will have a very hard time remembering. I log my symptoms, when I take my pills, how I am feeling ect. That way if you have an issue, or a run of issues, you can send that to the dr. I also keep track of when I went to the dr. and what was said while there in my log. I use a spread sheet, but anything will work. This is also a good resource if you need to file for disability

Don’t try to rush into doing stuff even if you are feeling better. I made that mistake and it set me back. YOU JUST HAD BRAIN SURGERY! You deserve to have help! I hired a lady to clean my house once a week, and I made some meals and froze them before I had surgery. Do whatever you need to to make sure you do nothing! You may feel like you can, but trust me, just don’t!

Don’t sleep in your collar if you can help it. You will pay for it the next day. I found that a good way to support my neck and give my self a break from the collar was a bath towl draped around the back of my neck while I was in the recliner.

If you have pets, make sure you arrange for someone else to take care of them while you are healing.

Do not be afraid to call or email your dr if you have any concerns. I had a headache for 4 days and started to panic. He reassured me, got an MRI. This is a serious surgery, and it’s your body. SO SPEAK UP!

Make sure you have some nonstick gauze and medical tape. It will hurt to change your bandage because it sticks to your hair. Two strips of tape on the top, one in the middle and one on the bottom does the best job. You only really need to change it every 4-5 days as long as there is no leakage. After the first week, you will have to pat it twice a day with an alcohol pad. Don’t rub it, just pat it. You don’t have to take your bandage off completely, just lift the bottom of it. Make sure you keep an eye on it for any sign of infection. That first week I took my temp every day to keep track.

You WILL feel like shit! Make sure you nap. A lot! You probably won’t get much sleep at night, so make sure if you are tired during the day you are sleeping. That is something I really struggled with.

Make sure you have clothes that are easy to get on. House dresses are best because you are not going to feel like bending over. I actually can’t bend over, so anything that buttons up is easy to get on. They sell them at Kmart in the pj section. It was about three weeks before I felt like wearing pants, sweatpants, and even then my husband had to put them on me. I also didn’t wear underpants because it was too much for me to bend to pull them on and off.

Make sure you are taking some form of stool softener and laxative. I took Senocot –s, but still had a lot of trouble “going”. Make sure you tell them if you don’t have a bowl movement before you leave! I ended up having to have an enema at home because I didn’t have a bowl movement in the hospital, or for a week after I got home. You do NOT want to go through that! DO NOT bear down to have a BM. It will make you feel like someone hit you in the head with a sledge hammer. If you can’t go, just wait it out, and take more laxative. You will slowly have to wean yourself off of them, but pain killers and anesthesia will stop you up like a brick of cheese! Also try to eat a high fiber diet. I got flax meal and add it to everything to add extra fiber to my diet.

I hope this helps. Just remember that surgery is different for everyone, so don’t worry if something happened to me or vice versa and the you didn’t experience it. Any tips feel free to add.