Chiari pillows - food, post surgery - etc

General
1

Hi everyone.

My decompression is scheduled mid-March, and I have a few questions for those of you who have had the surgery.

Chiari pillows: How effective are the Chiari pillows? Are down pillows comfortable? Is the V-shaped Zipperhead pillow worth purchasing? Should I buy both?

Food after surgery: I am reading that many of you were very nauseous post-surgery and most of you had ‘food issues’! Which foods should I avoid? I need to stock up the fridge.

Help: I’m not sure whether to be thrilled or not because I have family coming to ‘help’ from out of state and overseas. I need to schedule their visits so they don’t overlap. I prefer just my husband with me in hospital and post-surgery, but then want him free to return to work.

How soon were you up and around after surgery?
Specifically, what type of help did you appreciate/not appreciate?

Which questions SHOULD I be asking?

Thanks everyone.

2

I use the Water Pillow. I bought it at the local Chiropractors office and I love it! you can fill it to where it is the most comfortable for you. I normally never spend this kind of money on myself - especially for a pillow, but it honestly is the best - I take it everywhere now. long trips in the car - over nights or any hotel stays.

I found the exact same pillow link so here it is.

http://www.necksolutions.com/water-filled-pillow.html

3

Hi...

Don't fall for the pillow on TV...Sobakawa..CLOUD PILLOW....I have to ship mine back...hard as a rock!!!!!

Thanks for the info on the water pillow.

As far as help after surgery...I am the type that wants to be left the heck alone.....I can not rest if there are others in my house..besides my kids and hubby!! But that is just me. I did let hubby know that I wanted to come home from the hospital to a clean house!! I was in the hospital for 8 days.

Ginger ale is good for upset stomach.

Bring jammie bottoms to the hospital..so when PT gets you up to move about your butt won't be hanging out of those silly gowns!!LOL..you will have an IV in so ..a robe is tough to put on.

A MUST....bring facial / baby wipes with you....God only knows where those hospital wash clothes have been..ha, ha.

What is the date in March you will be going in????

Welcome to the site...sorry...that should have been typed 1st!!!!!

Peace,

Lori

4

hi

i had no nusea but i self medicate if drugs anyway, i was lucky and was on morphine for the first 2days, and after i got off it, i was sore but enjoyed the freedom to come and go, i used to walk alot, manly to smoke, but i think it helped with my recovery, the more i moved the better i felt,

the one thing that i really made sure is i had my walking stick with me, it was a god sent, as when i moved on my feet i kept thinking there was earthquakes, very scarey, but funny, this went on for aweek,

also if you are having a long trip back home afterwards, get a soft neck brace, this was great for my 1.5hr trip home,

afriend brought me BJs as i dont have any, and they are my favourite thing, i felt special in them, she also brought me a beautiful cake of soap, made me feel special,

joelene

5

I use a down pillow. I can squish it in creases and spaces where it needs to fill for support. I'm a side sleeper. I've always wondered about the Chiari Pillow though. The website has a tiny picture so its hard to see. If anyone has a picture of their own (or wouldn't mind taking one) could you post it on here for me?

After surgery it took me 3 weeks to finally get food down. It all depends on the person though. My mom bought me pedialyte or something like that to at least give me some nutrients. I drank a lot of fluids.

You may want an ice pack. (If it helps you...its my best friend) I have 2 gel icepacks at home. The hospital gave me one when I asked. That personally helped the pain a bit better than the meds.

Comfy loose pjs, button down pj shirt so you don't have to bother your head when changing/washing. I brought my PillowPerson too. I've had her since I was about 3 years old. (Remember those things from the 80s? Cooler than pillowpets!)

6

Thanks!:)
Do you have trouble sleeping?
I know that after 3 weeks of not keeping food down...(and trouble sleeping) my NS gave me something to help me sleep. Once I started getting sleep I was eating. I don't know if it was the medicine (No clue what I was on...or if the meds was anti nausea too).

Katie Gleaves said:

Google chiari pillow pictures. Second page of pictures has a full pic.

I'm 9 weeks out an still not keeping most down. Also ive been on iv antibiotics since Jan 8 so what I do keep down recycles quickly!

Alicia Roden said:

I use a down pillow. I can squish it in creases and spaces where it needs to fill for support. I'm a side sleeper. I've always wondered about the Chiari Pillow though. The website has a tiny picture so its hard to see. If anyone has a picture of their own (or wouldn't mind taking one) could you post it on here for me?

After surgery it took me 3 weeks to finally get food down. It all depends on the person though. My mom bought me pedialyte or something like that to at least give me some nutrients. I drank a lot of fluids.

You may want an ice pack. (If it helps you...its my best friend) I have 2 gel icepacks at home. The hospital gave me one when I asked. That personally helped the pain a bit better than the meds.

Comfy loose pjs, button down pj shirt so you don't have to bother your head when changing/washing. I brought my PillowPerson too. I've had her since I was about 3 years old. (Remember those things from the 80s? Cooler than pillowpets!)

7

Oh wow. :\ I hope for you to get some sleep!


Katie Gleaves said:

Honestly I haven't slept in 3 years. It merely got worse with the chiari. I take elavil 400mgs, trazadone 200mg and 2 alteril tablets every night just to get the 1 -2 hours I get nightly. Last night I got about 45 mins. For me post op has been hell

Alicia Roden said:

Thanks!:)
Do you have trouble sleeping?
I know that after 3 weeks of not keeping food down...(and trouble sleeping) my NS gave me something to help me sleep. Once I started getting sleep I was eating. I don't know if it was the medicine (No clue what I was on...or if the meds was anti nausea too).

Katie Gleaves said:

Google chiari pillow pictures. Second page of pictures has a full pic.

I'm 9 weeks out an still not keeping most down. Also ive been on iv antibiotics since Jan 8 so what I do keep down recycles quickly!

Alicia Roden said:

I use a down pillow. I can squish it in creases and spaces where it needs to fill for support. I'm a side sleeper. I've always wondered about the Chiari Pillow though. The website has a tiny picture so its hard to see. If anyone has a picture of their own (or wouldn't mind taking one) could you post it on here for me?

After surgery it took me 3 weeks to finally get food down. It all depends on the person though. My mom bought me pedialyte or something like that to at least give me some nutrients. I drank a lot of fluids.

You may want an ice pack. (If it helps you...its my best friend) I have 2 gel icepacks at home. The hospital gave me one when I asked. That personally helped the pain a bit better than the meds.

Comfy loose pjs, button down pj shirt so you don't have to bother your head when changing/washing. I brought my PillowPerson too. I've had her since I was about 3 years old. (Remember those things from the 80s? Cooler than pillowpets!)

8

Hey Janet. Here are some tips from me:

1. Don't overpack for the hsp, it's not worth it. Bring essentials like comfy pj bottoms, socks with grippers or slippers. Few pairs of undies. Cream, chapstick, toothbrush & paste, a wet brush (this is the best brush, it won't pull your hair; you get it at a beauty supply store).

2. Magazines/books. You may not need them. I was too sick to even think of reading. It made me sick. I barely watched tv.

3. Your own pillow and blanket from home. Makes you feel good having something from hom. My recommendation for a pillow is either a feather pillow or a really squishy hypoallergenic pillow (they carry them in Home Goods). It's been a God send. It took me 5 months to find the right pillow. Another idea for your head (because it will be sore) is a fluffy fleece blanket rolled up. I did that for the longest time. It really worked great and was very comforting.

4. Stock up on gingerale, gatorade, water (don't drink too much water, it's crampy)

5. Bland eating only for a while. Puddings, yogart, jello, saltines without salt, dry cereal like Cheerios is yummy and tolerable, pastina is good. Careful with the BRAT diet. It's good, but can be constipating. You will be constipated already from the pain meds. Get yourself some pepcid and colace in the house before you get home. The pepcid helps to keep the tummy juices at bay and the colace will help soften your stool. Also, ask your NS to prescribe some antinausea meds for you. Most of us are very nauseous after this surgery. It's normal honey. I puked for weeks. Not everyday, but I did get sick often.

6. Rest alot and sleep alot in the hsp and especially at home. Sleep is your brain's best medicine. Take your meds on time and let people pamper you. Even if you have a good day, don't overdue it. Take things slow and most importantly, move slow. Gotta give the brain some time to adjust to the new flow. Mine is still adjusting and it's been 6 months.

Most of all, be at peace about your surgery. You have all of us pulling for you and most of us have been thru it.

God Bless!!

XO CHRISTINE

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9

I just know I wasn't prepared for totally loosing who I was and everything I loved to do. Then settling with the life I have now. I don't want anyone to go thru that. Our income was cut by a third....but that third paid our house pymt & my car payment. I totally understand. Let me know if you need to vent, or cry or talk....I think most of us has become by necessity an expert on CM. My Pcp tells me he has learned more from me than in med school...

Please take Care of Yourself Too,

Tracy



ChiariWife said:

Tracy, I think Janet is the one having the surgery, not her husband. I'm kind of glad you said what you said though, as I am very concerned about my husband being able to return to work. He is 4 weeks out of his decompression and though not suffering nearly as bad as you've described, he's definitely not the same. His vision is compromised and the weakness in his left side is certainly not going to afford him the ability to work midnights in a steel plant. We are in bad shape financially to say the least, and not really sure what's coming next. People DO need to think ahead, this is a scary set of circumstances that we were absolutely unaware and unprepared for. I thank God for finding this group, it's discussions have been fantastic for me....

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chiariwife,,,,, my heart goes out to you, its hard enough having someone unwell in the house, but on top have finances issues, life is unfair,

there is nothing i can say that can make you feel better, but that we are here, there maybe comfort in that,

you are a loving fantasic women, you have stood by your man, you need to pat yourselve on your back for that, its no easy any lesser person would of ran a mile, you are carer and you need to be told you are doing a fantasic job, it has given me hope that there are caring people out there, that do stand by you,

on this site we tend to look at the needs of the sick, but i feel we need to thank all our carers,

joelene

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Janet,
I had my surgery 8 years ago and I still switch pillows according to my needs at the moment. Sometimes I use a down alternative so I can smoosh it and cradle my neck and other times I need my memory foam pillow. Play with it to see what’s best for you. Right after surgery I actually used a hemorrhoid pillow so my incision area wouldn’t touch the pillow. That area would go numb and get painful for about a year after surgery.
As far as nausea…again, everyone’s different. I had nausea for 2 months or so. Lots of juice and jello, but anything that sounds good, go for it.
Be thrilled to have extra help coming!! My Mom stayed with us for 5 1/2 months. It was a huge help to me and allowed my husband to go back to work. I pray you don’t need help as long as I did, but it was a life saver!
I was in the hospital for 4 days and had a tougher recovery than I expected. Other patients I met in the hospital after their Chiari surgery was up and around a day or two after surgery…I couldn’t raise my head off the pillow for a few days due to pain. Later found out I had a spinal fluid leak.
My Mom helped with household chores, cooking, helping to the bathroom, shower, etc.
Good luck to you…it was DEFINITELY WORTH all the post op issues I went through to be where I am at today!! Hope this helps a little!
Monique

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Janet,

My surgery was in November and the worst part for me was finding a sleeping position that was comfortable for my neck. My aunt had a really squishy pillow that I could kind of mold under my neck that was a life saver for me. Also sleeping in the recliner a few days helped. My doctor only prescribed tylenol and toradol(which is a little stronger than ibuprofen) and a very mild muscle relaxer and although I had some pain, it was bearable. I did not have an appetite at all for about a week. I was fortunate that I had my mom to take care of me and she made me drink milkshakes, and I ate jello. At the hospital I had a horrible headache, and I usually drink caffeine, and once I got caffeine it really helped, so if you are a caffeine drinker keep that in mind. I didn't think I would need anyone with me once I got home, but I was so glad that my mom could take off a few weeks with me. If you can have someone with you then you will recover so much quicker. I pray that you have a successful surgery and end up pain free! Blessings and hugs!

~Melissa

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I am really Glad you are here. You just have a very compassionate way about you. You soothe people in the way you talk to them. Your husband is very lucky....

Tracy Z.

ChiariWife said:

Tracy, I think Janet is the one having the surgery, not her husband. I'm kind of glad you said what you said though, as I am very concerned about my husband being able to return to work. He is 4 weeks out of his decompression and though not suffering nearly as bad as you've described, he's definitely not the same. His vision is compromised and the weakness in his left side is certainly not going to afford him the ability to work midnights in a steel plant. We are in bad shape financially to say the least, and not really sure what's coming next. People DO need to think ahead, this is a scary set of circumstances that we were absolutely unaware and unprepared for. I thank God for finding this group, it's discussions have been fantastic for me....

14

Hi Janet! I was decompressed on Nov 28, 2011. As far as your pillow question, I used a soft neck roll pillow and square throw pillows. I prefer to be on my side so I could position those pillows best under my head and neck to keep it level. Now for your food question, I didn't eat anything until I left the hospital. The morphine made me very sick to my stomach, once I was off of that and started to get up and walk around a bit I was able to eat more. I think it was about 2 weeks before I had my appetite back. I don't think there is really anything that you should avoid except things that will bulk up the stools more (since the pain meds can already constipate you). Lastly, the help question. I also wanted my hubby with me in the hospital and to go back to work when I came home, so we got my brother in law from out of town to help out with stuff at home. It was nice to have him here, but really just for the kids. I was able to do everything for myself by 1 week post op. In fact, they made me prove that I could before even leaving the hospital. I was up and walking around on my own the day I came home from the hospital, just really tired and slept most of the time anyway. I appreciated the help around the house, like the dishes and cooking and stuff, but really I just wanted to be left alone to sleep if off. Hope this helps, hugs, and good luck!!!

Crystal

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