Hi everyone!
Have loved reading through all your stories! I am booked in for decompression next Thursday…any words of advice?
Things are a little different for me As I’m in the UK (ie I can’t choose my neurologist!!)
Thanks
Laura
I am having decompression surgery next Tuesday myself. I am praying for relief. Will try and post daily as I recover. Good luck on your procedure next week.
Thank you! 
Good luck Laura! I had my decompression November 2012 at Wessex Neuro @ Southampton General so I understand what you’re going through with regards to not having the choice of Neurosurgeon. I had a good one and I hope that you do too. The only thing that I find over here in the UK is that not enough is known about it 
My advice to you Laura is rest, drink at least 3 litres of water a day, ask for help if you need anything (don’t do what I did and think you’re superwoman and can do it all on your own) and just listen to what your body is telling you. The worst thing post operatively, apart from uncomfortable aches in the head, is the fact you can’t wash your hair until the clips come out so your hair (well mine did anyway) looks like a matted mess lol. Good luck with it all Laura and I will be thinking of you xx
Get a recliner and make sure your taking a poop after surgery. All those pain meds make u not able to poop. You dont want to stran after surgery. I didnt poop for like 2 weeks because of all the pain meds. Make sure you get food you like that does not trquire a lot of chewing.
Put a lot of condishner in it.
Thank you so much! Am dreading the greasy hair!!! I have stocked up on dry shampoo!!! Can I just ask you simi174uk…how long did you stay in hospital after your operation? Every doctor I ask seems to say something different from 2 days to 2 weeks!! I have a 1 year old and I’m dreading being away from her xxx
Just had surgery in 10/7. Was in the hospital for 3 days. Hardest thing is trying to sleep. I do not have a recliner so have been trying to simulate a reclined position with pillows (not working well).
Also have tons of Popsicles & ginger ale on hand. The meds cause nausea and constipation. Take stool softeners daily too.
As for hair, my NS allows you to wash hair with Johnson Baby Shampoo by day 3. Also wants wound wiped with alcohol and range of motion exercises done 3 times a day.
Thanks bigD821, that good to know. How are you feeling? X
Laura I have not had this surgery so cannot give any advice since I’ve only had posterior cervical laminectomy surgery c1 thru c7.Recliner did work really well with this surgery. I just wanted you to know I will pray to God in heaven for you. I pray angels to gaurd over you and have a successful surgery in Jesus mighty name.
I have not had the craniotomy either but am scheduled for neck surgery due to cord compression at the end of the month… Hopefully we get some helpful tips!
Hi Laura, I had decompression surgery two years ago and recovery went very well so I can say I was lucky but I also believe the better you prepare for any surgery the better the outcome. Eat healthy, drink lots of water, feed your mind and spirit with good positive thoughts (I use visualization so I pictured myself fully recovered & pain free - I still do, even though many times I still have pain although much less than prior surgery), be active. These same things can also be done post surgery, I drank protein shakes for breakfast every single day and at times in between meals, I walked around the house a lot and even went for a walk with walker the day I came back from hospital 7 days post op. that wash doctor instruction, to stay moving. I also took a collagen supplement and vitamins. i cant stress how important eating healthy was for me, i had no issues at all with BM post anesthesia (headaches with BM straining were one issue for me pre-surgery) i wish all the best!!
Listen to your body take it slow and easy. Take your own pillow. Take advantage of the meds even if you don’t like to the pain can get away from you so better to stay on top if it. Let your support team care for you.
Good Luck to you - I started taking mineral oil 3 days before surgery and continued after and did not have the constipation - check with your DR. If you can find out how they are shaving your hair get your hair braided it wll make it easier after. I stayed in the hospital for 6 days and did not feel like combing my hair for the first 4 days it was a mess and hurt to comb after so if I had to do over I would have taken the time to get it braided. Make sure to have ginger ale and crackers after as well
My daughter went thru the surgery almost two years ago. My suggestion to you is to just make sure you take it easy and listen to your body afterwards because the you will feel what you have been doing all this time in a different way. If you are at home afterwards and see any type of clear liquid coming out of your incision area that keeps seeping thru no matter how many times you wipe away, notify your surgeon…it’s not puss…it could be cerebral or spinal leakage…or any persistent swelling…notify your surgeon or physicians assistant, etc…any concern at all, do not be afraid to go back to your ER…even for the littlest thing…we went thru that…I still have her care team on speed dial on my phone…I would love to stay in touch with you thru this if I may…my name is Ramona. Btw… My daughter had a hard time eating, so please if you find yourself without an appetite afterwards, try to sip on ginger ale or crackers, or broth if you can. She had a slight complication and ended up back in the hospital for an extra week, but it was minor…just, take it easy, ok? And, if you can bring a pillow with you for the ride home to brace against the sudden car movements that may occur, that may be a good idea as well…
Thank you all for your kind words and advice. I am making a list of things to buy before I go in!! I would be interested to hear how everyone is doing now? Has your daughter improved Ramona? Xx
She has greatly improved, in fact she takes five to ten minutes just to stretch now, because before, that would cause her great pain. She still has weakness that she is strengthening thru physical therapy, and still has moments where she has to apply heat to her neck. She’s not completely healed, but is a whole lot better than she was before surgery. In fact, the tables have kind of turned now, because now I am the one who is experiencing headaches in the back of my head when I laugh hard, with the sensation of water trickling down the back of my skull when I stop laughing. I am going to get screened for this in the very near future. She calls me copycat!
Ah that’s great that she has improved…fingers crossed I have the same result…would quite like my life back now!!
Sorry to hear you are experiencing symptoms, I hope you can get some answers and treatment soon. I wouldn’t wish the I have pain on my worse enemy so I genuinely wish you and your daughter well. How old is she if you don’t mind me asking? Xx
Oh also…a new symptom I’ve been getting is a sensation of falling when I lie down…does anyone else get this? Sorry for all the questions, have just never come across anyone with any knowledge of Chiari! (Doctors included!) x