Chiari Online Support Group

Advice needed


#1

Hi wanted some advice I was only diagnosed with cm on boxing Day and now I’m going in hospital for my. Pre op for the operation of foramen magnum decomposition with duraplasty I’m scared it’s happened so fast what I need advice on is how bad is the recovery I’ve got 4 children at home and I don’t want to scare them thank your for reading


#2

Hey Salx,
This really is a 'How long is a piece of string?" sort of question. No two neurosurgeries are the same and nor are the results, so trying to draw a comparison is near on impossible. I have required a few neurosurgeries and none of them have had the same recovery nor results. My initial operation I needed a couple of weeks to get back to some sort of normal. I tried to push my recovery for the 2nd operation and that was silly, no actually, that was dumb. My body was giving me signals and I didn’t listen to those signals. I did myself more harm than good.
So please listen to your body, it will tell you. If you need rest, TAKE IT. Do not do what I did and ignore it. In recovery, rest is your friend.

Merl from the Moderator Support Team.


#3

Tough spot. I wish you well for the recovery.

I tapped a number of sources to assist with running the house and helping with kids (I had 2 younger children). My husband was great but he was not able to work full-time plus and take care of me, the family, and the house. My surgeon suggested that I would be out of commission for for 3 months. I, personally took longer, though I was an invalid before surgery so had a lot of ground to regain.

Cleaning, meals, kids, any duties prior to surgery are advised to be outsourced to friends, family or hired out. If you are not feeling well enough to do this, someone else could do that. I, and the medical communtity, am of the opinion that the Chiari is a major surgery and its recovery should be treated as such. It is not worth delaying recovery time to clean toilets and make a lunch just so.

Everyone has a different social network, but I do encourage all to be creative in requesting and to not be a cowboy about it. There is never too much help in these situations as others do not understand the long-term nature of Chiari recovery.

Good luck with putting supports into place and remember that if people are not helpful or are resentful, move on as this says more about their charitable nature than your position of need.


#4

Thank you both of you I’m going to have my pre op in the morning think I now have the 2 year old sorted the others are old enough to help and get them selfs sorted lol i am wishing lol


#5

Can I also ask how big are your scars x


#6

Scar is 2 inches below my hairline. I am not sure how far it goes into my hair. Even though I wear my hair up most days, the only people who can see the scar are my hairdresser and massage therapist.


#7

This is my scar one month post op.


#8

My only advice is to not rush into brain surgery. I wish I waited and really did the
research before having my 1st surgery done. I was so scared of being paralyzed like my 1st NS told me I would be if I waited, that I 4ushed right into surgery and I totally regret it. I’m certainly not trying to scare you, but had a found the best, informed CM expert NS to perform CM surgery I think my outcome of mutlple follow up surgeries would never have happened to me. I totally understand your concern to get it done asap and I totally wish you the best outcome.
Many blessings
Lanie


#9

Hi I wish you well for you surgery. I have had decompression surgery twice now. I am a year post op from my second one and I don’t regret it at all. Recovery isn’t all that pleasant I would advise to rest lots. Enlist as much support as possible from friends and family. It’s important to listen to your body and not push yourself to hard . It’s major surgery . Good luck hun. Xx


#10

Thank you everyone my surgery as been put on hold my blood sugars are to high been back to the GP to get that sorted first with a bit of luck should get that sorted xx


#11

Hi… I’m jumping the gun a bit by going to your question of what your scar might look like. I had decompression surgery CM 1 in Dec 2014. The scar goes from just below the top of my head (in the back of course) to my C2 vertebrae. I have a divet right down the base of my skull to C2. I also had duroplasty… the only side effect I have in reference to my scar is that my head itches and my neck is tender to the touch. I wear my scar like a badge of honor…