Chiari Online Support Group

Surgery 11/28/16 Advice Please

Thank you so much runnergerl for sharing your story!!! Your story helps me a lot through the process especially the needle portion. Very terrified and lots of anxiety with IV’s and needles as well!! I definitely will ask the team about that part you mentioned. Thanks for the warning about the pain level and being on top of your pain. Definitely a concern and I am not sure, how I am actually going to handle it after surgery. Crossing my fingers I will be on top of my pain like you!

I am so glad everything has worked out for you so far!! How are you feeling today?

I went in Monday this Halloween, came out that Wednesday. It is nice to stay in the hospital to get the pain managed, I didn’t have a push button for pain. Orally took my meds since I came out of surgery. But also remember being home in your own bed and being as comfortable as you can also helps your recovery. It will be painful. Don’t forget that part, I kind of did! Just keep the fight going!
With much support
Jeremy

I had my 2 week post op appointment today and I am doing well. I have some odd things going on that I guess are not uncommon after brain surgery. I vision has changed a little, my hearing is a bit off and my scalp is super sensitive. These are little things they don’t tell you about brain surgery. All my nerve endings are confused and misfiring and the Dr said it will all calm down. Today I got the ok to go from being limited to lifting only a cup of coffee to lifting up to 5 pounds and to increase my walking a little bit everyday. She also said to take it slow and easy. To rest and sleep as often as I need. I have been referred for PT now for some neck work - stretching and movement work. I am still in a little pain and definite discomfort. But am down to just tylenol for pain management. My next appointment will be in January for a full spinal MRI to make sure the syrinx have collapsed. I had 2. If they have, I am good. If they haven’t then I will be monitored and considered for a shunt. I pray that they collapse. I really don’t want another surgery. Good luck on yours! I will be thinking about you.

Thank you Jeremy for your tips on recovering!! I appreciate it!
Hope you are feeling better :slight_smile: !
Ashley

Sorry for such a late response, haven’t been feeling well.

I am so glad you are doing better :slight_smile: ! That is awesome that you are improving so much! Good for you and GO YOU!

Thanks for all the tips and advice you provided, really appreciate your help! Really nervous because its coming up soon on the 28th. With your nerve endings after surgery, what did you do to get through it? Ice packs, pain pills, or both?

I’m praying for you, you will improve each and every day! Also crossing my fingers you’ll have good news with your upcoming appointment! Good luck!

Thanks and I have been thinking about you too. Have a wonderful day!

My advice would be, if needed, to take off as much weight as you could (if you need to, maybe you don’t). I had way too much on when I had my surgery and did not help recovery. If you read some of my recent older posts about the changing of the bandages, drinking lots of water after surgery, getting help at home, etc. those might help you a great deal as well. ( I am terrified of needles too :open_mouth:. ) Keep your chin up though…brighter days a head :rabbit:

hey ashley
hot or cold packs help as well as the medicine they will give you. what will help a lot is resting, listen to your body if you start having pain take tylenol before it gets worse.

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Thank you catlover72 I really appreciate your advice and tips! I’ll read some of your recent older posts. Thanks for the encouragement :smile: !

Hey Mila,
Thanks for your advice and help! Definitely will use those items afterwards!

Ashley, You have been on my mind as your surgery nears. I hope you are doing well. I have learned a ton this month and Monday I will be 5 weeks Post Op. Some things I found critical - wedge pillow. No one told me how important it is to keep your head elevate above your heart. Also, talk to all the care providers - your fears, concerns, pain levels, if something doesn’t feel right. Make sure they listen and take you very seriously. I had a set back due to infection and a delayed reaction to the anesthesia and pain meds. The surgery itself is still a success and I am pain free from Chiari symptoms. I am now back at home - full week today with a PICC line - but I am good and strong. I also had 2 medical diagnosis removed from my records - Lupus and RA. All these years it was the Chiari. So - talk, be heard, rest- and I mean REST! Keep on top of the pain. Elevate your head and practice lots of self care. You got this. Anyway you were on my mind today so I wanted to check in.

Hi Ashley,
I just wanted to put on my nurse cap and let you know there are some options for IV pain if you are really worried. Ask if they can insert some in the OR after initial sedation, then you wont know or care::relaxed:. Also, ask if they can use EMLA or LMX before the initial start. Both are creams that are allowed to sit on the poke site for about 30 min before the IV is placed, will numb the area pretty well.
Just a couple of thoughts, good luck with your surgery!
Kerri

So glad to hear things are going well with you. This giving me more incentive and the extra courage to go through with my surgery. I’m just waiting to do one test before I do one. Wishing you the best.

Hey Runnergerl,
Thank you for all your helpful tips! I appreciate it :grinning:! Sorry for late message back. All your tips & suggestions have helped me​:slight_smile:. Im at 3 days post-op and doing better then the other days.

I’m glad your symptoms are pain free😀! Sounds like your doing fabulous, good for you!!
Ashley

Hey Kerri,
Thaks for the needle tips. It helped out so much!!! I requested for all those options you mentioned. Im 3 days post-op, doing well so far☺. Hope things are going well for you!

Glad to hear that you are doing well.

Hope you are still doing well! My surgery was a great success and things are ok. I had some unexpected set backs that are not Chiari related. I had a delayed reaction to the anesthesia that gave me asceptic meningitis - we got that under control and then I ended up with a pulmonary embolism - now broken up and dispersed. So while I had some atypical post surgery complications I am happy to report at almost 8 weeks Post Op I am still symptom free. I had a follow up CT scan this last Tues and everything is healing well and the scar tissue is building up as my Neurologist expected. She believes I will likely never need another surgery. I had a textbook case - no cysts, nothing wrapping around my spine, and everything is tucked into place. My stitches are all dissolved, scabbing is gone and all is looking good so far. I am weak and tired from the complications but each day is more active and I am doing more. I hope your recovery is going well still

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So happy for you!!!:grinning::grin::joy: Hope you have continued success! Wishing you all the best!!

Hello Everyone,
I am 2 months and a couple weeks post-op! Surgery went very well and I just want to thank everyone for their support :slight_smile: ! Couldn’t have done it without you!

Thanks Again,
Ashley

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That is wonderful! I am glad surgery went very well for you.

Thank you!