I'm going under the knife March 20th 2013. Honestly soiling myself about the prospect. The thought of someone cutting my head open, however skilled (Did loads of research), makes me want to vomit. I've only had the chance to speak to 1 or 2 Chiarian's and was just wondering:
1) If anyone who has undergone surgery has a post view pre-surgery check list. One of the main ones I keep getting back is lots of extra pillowcases. If you can provide anything like a detailed list of stuff to take care of pre-surgery and items to have on hand, things to aware of during recovery at home, road trip home etc.
2) I was additionally diagnosed with sleep apnea at the same time, ironically they think is very likely caused by me having Chiari. As I'm also an insomniac this has been life changing for me, as being on CPAP has helped reduce the number of migraines I get and better quality of sleep for the limited amount I get. However, I'm told I obviously won't be able to use my mask, as the back of head, where the straps go, will be my surgery site. Anyone been in the same boat and know how long it was before you could start wearing the mask again without it bothering the incision site. Yes the hospital is already aware I have apnea ;-)
3) I've probably had this multiple times before diagnosis and just always thought it was something I ate, I occasionally get this really nasty metallic taste in my mouth, that is can't be related to my food as I typically eat the same relatively healthy stuff over and over and there appears to be no pattern and it's v doubtful its meds as I'm only on a Nasonex and Zolpidum Nitrate for the insomnia. Nothing I do mouthwash or brushing gets rid ot it and eventually it goes away. Its amazing the myriad of symptoms of random stuff that I have that I look up that turn out to be potentially Chiari related. Anyone experienced this, thought etc. 20 days and counting.
I am going to be having surgery April 5th, so I am getting things ready too. Here are some things I'm doing to prepare. I am cleaning the house really good until then. I have lots of stuff I need to get rid of and it will make it easier for my helpers to keep clean after my surgery.
I am making freezer meals that I can dump in the crockpot and still have dinner instead of fast food. Cooking is one of the first things to go when I feel bad. We will actually have dinners brought over by friends for the month. yay! So I will have freezer stuff after that.
I am going to write down when all my bills need to be paid for the month and passwords to pay them online for my daughter that will probably do that if I need help.
I have bought some PJs with button up shirts (I needed some new ones anyway :) ) I don't know if I will use these in the hospital or home. Either way I have them.
I will be sure to load more music onto my iphone and take my headphones and charger
I will be taking things like, toothbrush and paste, facial cloths, comfy clothes to wear home, slip on shoes to wear home
I am going to make myself a couple of pillows for after surgery. The kind with the middle sewn down. I'm traveling a couple of hours to get my surgery so I'm making a travel pillow like that too.
I will probably buy some stuff like stool softeners/laxatives for just in case after I get home. And also one or two of those soft, squishy type ice packs. And I'll make myself a couple of rice packs that have the middle sewn too for heat. I also wanna have plenty of arnica it helps with pain.
I will also grocery shop for stuff we will need before I go. I am a couponer so I have a stock of things but some will need to be added to before I go. And to have some easy stuff for my teens to make and eat so they won't starve.
And I just plan on having every possible thing done at home before I leave for surgery. Laundry etc.
Anyway that's what I'm doing. I'm sure ones that have had surgery will give you some ideas too.
I have apnea too, but my insurance wouldn't pay for a sleep study. I think a lot of people's sleep apnea goes away or improves with surgery. Insomnia is also chiari related.
About the metallic taste, I've noticed that when I've used a lot of lemons for stuff. Like using it in my water every day. Other than that I don't have that.
For the hospital I packed: my phone, a charger, my Kindle, comfy clothes (I didn't have any issue pulling things over my head), slip on shoes (NOT backless, I had some Toms and some Converse slip-ons), my toothbrush, and deodorant,
For the ride home: One of those neck pillows, a blanket, some snacks, and drinks. Depending on how far you travel stop every hour or two and walk around. I was 5 hours so we stopped about four times.
To have at home: Paper plates, plastic cups, and utensils. Easy snacks/meals like yogurt, cheese sticks, protein bars, cut fruit and veggies, and microwave meals. Having all your laundry done and several sets of clean sheets and towels is a good idea. As for pillows...everyone seems to have a different favorite. I'm partial to the $20 as seen on TV Sobakawa pillow. I enjoyed watching Netflix and reading books while recovering. Also napping.
CBC along with a load of other medical tests should be done Friday \ Monday. I was on Nasonex off and on for years before some of the more recent Chiari symptoms manifested and don't ever remember having the metallic taste. Though I am a lot more paranoid and more vigilant over symptoms now.
I have two masks neither of which I think would be capable of not interfering with the incision site. Have no idea how your friend managed that one.
Yay and whoah to 20 days!
Emmaline said:
Haha....wanting to hurl at the thought of brain surgery is quite normal I assure you! From the NS's standpoint, it is one of the more simple surgeries they do I'm told.
My friend with Chiari has sleep apnea and said she woke up from surgery with her mask on! It would be up to you, if you have trouble breathing then use it, you should be able to wear it comfortably after surgery.
I would suspect one of the drugs as causing the metallic taste in your mouth...especially the Nasonex. There are health related causes for it as well. Have you had a recent CBC done?
There are multiple list for post op stuff, do a search and try putting in different words. You'll get a lot of ideas! Yay for 20 days!
Also curious looks like you are 8 months post op. Amazing you have a friend that has Chiari given the statistics. Are you glad you did the surgery and curious if they did duraplasty what material they used?
Emmaline said:
Haha....wanting to hurl at the thought of brain surgery is quite normal I assure you! From the NS's standpoint, it is one of the more simple surgeries they do I'm told.
My friend with Chiari has sleep apnea and said she woke up from surgery with her mask on! It would be up to you, if you have trouble breathing then use it, you should be able to wear it comfortably after surgery.
I would suspect one of the drugs as causing the metallic taste in your mouth...especially the Nasonex. There are health related causes for it as well. Have you had a recent CBC done?
There are multiple list for post op stuff, do a search and try putting in different words. You'll get a lot of ideas! Yay for 20 days!