More questions!

Sorry Im gonna be all over this discussion board lately - I have up comming surgery and don't really have much information and googling you dont get much help either.

after surgery how does eating go? did anyone bring snack foods with them? my expirence with hospital food is its horrible! the 3 times ive been hospitalized my husband has brought me food from a drive thru. is eating regular food possible after surgery? maybe just soft foods for awhile soups, mash potatoes etc?

I have read some people have needed to use a cane or walker after surgery.. anyone here expirence this? for how long? I have inner ear issues anyways and i can barely stand when my eyes are closed because my ears cannot balance me only my eyes work properly for that is what they have said, does the hospital supply with these or is my husband gonna have to search for one if its needed?

Also what about neck brace. my ns said i would prob want one for the plane ride home a little for comfort and also so people flat out see to be carefull around me lol.. so does the hospital give these? should i stop at a local med supply place before surgery?

Did anyone on here get a temp handicap sticker for there car? Oklahoma gives out 6mth and 5 year ones, i go to my PCP tomorrow for pre op testing Im gonna see if she will fill it out for maybe the 6 mth one just in case im having problems, ive read chiari falls under getting disability checks after surgery and for the time you cannot work, so i was thinking it might fall under getting a sticker, since it does have alot to do with balance and stuff.

i feel like i have lots of random questions with no one to ask so any info anyone has about before and after ... BIG THANK YOU :)

-Allison

Allison,

The food in the hospital is not anything to like. After the surgery I was eating regular food, but found it hard to eat as when they took out the breathing tube, I bit my tongue. Because of this it was inflamed. This made it hard to talk and eat for about a week. I was in the Neuro ICU unit for 4 Nights after the surgery. I was then moved to the regular floor for another 4 nights. After that I was moved to a inpatient PT in my hometown where they worked on a lot of daily things I must do, and worked on the walking with the walker. I was doing that for about 1 week. The three weeks after my surgery I had a lot of headaches, and it turned out i was very light sensitive, hearing sensitive, and the fact that I had 30 staples in my head, I was now pulling in americas top 40 only I could hear.

After the staples were removed the radio signals did disappear. I found this a relief as Rush Limbaugh in your head is something that I found almost worst then the Chiari was.

As for getting a walker I was able to get one from a local home health care store, and my insurance did pay for it. It is mine to keep. I did not require a neck brace after the surgery. I had one on before the surgery. I guess they felt I needed to start to move my neck around.

I did get a 6 month handicap sticker. I would definitely apply for this ASAP as it takes about 2 weeks to get it back from the state. Apparently there is only 3 people that work in the office and they receive hundreds of requests. I got mine right when I did not need it anymore. So get it going now.

As for getting disability checks, yes there is a form to fill out and hoops you can jump through, but you are not guaranteed to get it and it can take years to get approved.

If you need anything, you are free to call me, I am working with wife who is a PCP on educating the public about Chiaris. I think if more people know what to look for they will be able to get the help that they really need. Sometime if I can get enough people around here, I would like to get a support group going. If you would like to call let me know.

Praying for a speedy recovery for you,

Kurt

Kurt -

thanks for all the info!

I had my pre op visit with my pcp today and she had to get a sticker when she broke her hip awhile back and knew how long it took so she filled it out and i got it sent in today so hopefully i'll get it before surgery so ill have it when i am released from the hospital.