I just got the call for surgery they are doing it in 6 days :/ I am ready to feel better and I know I need the surgery but I am obviously scared..I have an appt with family doc to evaluate me pre-surgery as far as hormone thyroid vit levels I'm taking my list lol She has been wonderful working with other docs!! She was honest and said she does know alot about chiari but did the research as did the nurse practitioner and they are 5 min down the road :)
I was wondering about the surgery...My boys 15-12-10 should I try to do something with them this weekend we live 10 min from the beach so I was thinking even if I am hurting I have to try..What to take? Ways to prepare for surgery? How bad is the pain..I am just a bundle of nerves..Any advice would be great!! I hope all of you are having a "good" day today :)
I am sooooo happy for you. I have not been thru the surgery, yet, so I don't have any advise on that part. I would certainly make the most out of the time you have with your kids before surgery. Your post just made my "bad" day much brighter!!!
Before my surgery I pushed myself to do enjoyable things despite the pain. It really helped me get the positivity I needed to get through the surgery.
Of course, everyone's story differs, but I can honestly say that the pain from my decompression was no worse than the pain the Chiari was causing me beforehand! The nurses kept asking me to rate it on a scale from one to ten, and I'd often say two or three. I came off heavy painkillers onto paracetamol within two days. It was very bearable, and I usually have a very low pain tolerance!
What helped me a lot was really paying attention to the physiotherapist advice after my surgery. Trying to walk around every day and doing very gentle neck stretches meant that I was off all painkillers in two weeks and out being active in a month. It's been two months and I have no residual pain at all.
Very best of luck with your surgery, and remember no matter what to keep smiling. It makes all the difference.
HI THERE!!!!
You will be in thought and prayer ....Soon you will be home on the way to recovery.
You asked about the kids....totally get where you are coming from with that...If you feel up to it...for sure take them to the beach or whatever else they may want to do. Can you take another adult with you if you do go to the beach??? I say this b/c I have 2 kids and I know how they can be at the beach..here, there and everywhere...so another adult would be great to help you keep track of them!!!LOL
As for the hospital stay...I made sure to bring jammie bottoms....those hospital gowns are for the birds!!! This way, when you are able to get out of bed, you won't have to worry about your behind showing!! Physical Therapy will come and see you after a few days (they did with me , anyway)....PT will make sure you are able to tolerate walking short distances and show you how to use a cane if you need one...ect....
I also brought a nice, soft blanket from home...I ended up using it for my head...one nurse helped me fold it up and put it ontop of the pillow....was a life-saver.
This next tip is because I am weird about this stuff and also have worked in a hosptial way back: I brought facial wipes and baby wipes to the hospital....Lord only knows where those hospital wash clothes have been...LOL..no, seriously, I keep them on my table..easy to reach...this way I could freshen up a bit right there in bed...I am serious though about how I feel about hospital wash clothes!!! Weird, I know!!!!
When you are in the recovery room after the operation..the staff there will make sure your pain is manageable before they send you to ICU for the night....be honest....tell them the truth....no heroics....
Hope this helped a bit......
All of you helped so much!! My husband will go to the beach with us :) Was anyone allowed to stay with you in ICU or hospital room..? My hubby wants to stay the whole time but I dont know if he will be able to? Also I think the first couple of days my boys are going to stay with a friend and as I feel up to it I will have her bring them..I don't want them to see my like that..
I will definetly bring pillows my own blanket (I have a favorite so weird clifford plush one I think it was one of my kids lol) also wipes anything else anyone can think of? PJ bottoms what about after shirts? My drive home is about 4 hours any advice on the trip home? Thank you all so much!!!
Congratulations! I know it's scary but hopefully you will get the relief you need from the surgery. My husband stayed with me as much as he could. It really helped to have an advocate there for me when I couldn't do it for myself. Can't wait to see how you make out and hear about all the progress. As far as comfort on the ride home and when you get home I would say soft fluffy pillows and blankets. The ride home is rough and if you can rest your head and neck on pillows it really helps. Good Luck and love those boys up they are going to worry about their mom. If you let them help you when you get home they will feel better about the whole process.
Hi...
Just a quick note to let you know you are in thought and prayer as you get ready for surgery. How are you??
Im doing ok up and down..I have been so busy getting everything ready that I really haven't had a lot of time to think..until bedtime..needless to say I was up till 4 crying off and on..But I did have 2 girlfriends stop over last night and it was good to just laugh a little..I appreciate the thoughts and prayers
I will be praying for a easier recovery for you and that your surgeon has skilled and guided hands. I will make sure I check in occasionally on you.
Prayers and Love sent to you and your family.
Lori D
Thank you so much!! I hope I can report back that I am one of the success stories!! I hope I can say at 1 week 1 month 1 year and 10 years that it was successful :) I hope they figure out for all of us chiarians (if thats the plural) :) some sort of early detection and treatment so it doesn't get to surgery being the only choice..Not Cure.. I hope that doctors are more educated and recognize chiari and empathize with what we go through..when I went to my neurosurgeon he said to me I can't promise I can fix all your symptoms. My response 50% would be great..I will try to keep that in mind after the surgery lol Thank you all again!!
hi
today is the day
sending you good thoughts and praying you are not in too much pain
when you are able please let us know how you are doing
you are in my thoughts and prayer
lori
Thinking about you today! Sending you positive energy and prayers!
Like Lori said...let us know how you are doing when you feel up to it!!
XOXOXO Monique