New here, about to have surgery

[candyschug]

Hi I am 31 from Idaho a Stay at home homeschool  mom of 6

In 2005 i had gone into see my doc to to numbness in my neck and shoulders, The Neurosurgeon who I was referred to at the time just said I had syringomylia and pretty much said come back in 2 years, well i had 3 more kids and a house fire and just never got around to it.

Since Last summer 2012 I notice the symptoms came on more often and my headaches just never went away. I tried to tough it out as long as a can. Being a mom of 6 kids i just put everything behind me and moved on with  my life but it just go too much for me to handle. I was taking Excedrin more then I wanted too and it still wouldnt kick the headaches or numbness. I could barely fold up a few towels before my arms felt very tired and weak. Even caring around my 24 pound daughter was a tole. My husband started noticing me getting very irritable and I am usually pretty layed back.

I finally went in and had an MRI done, I have ben diagnosed with Chiara Malformation Syringomylia. After a discussion with my neurosurgeon I was referred to we decided surgery was our best option. The risks of not having it out way the risks of having it.

We are just waiting on a few things to get into place, with hubbys work, so he can take off, as well as babysitters for the kids while I am in surgery and for a couple days after. We will have plenty of help besides that so not to worry about all that

I dont know if I am scared or not. The date has yet to be set, and I dont think I will be scared until then. I have been through 5 csections so surgery is not new to me, but i know this is more intense.

For those who have had it, what was your recovery time, I know everyone is different, but any advice would help and be very appreciated.

[candyschug]

I will do and thanks, its nice to have a group like this. Helps ease my worries some,

[selmaS]

  Do keep us all posted on how things r going <3

[candyschug]

My first neurosurgeon I dont know, she just like said come back in two years to check it, she seemed like nothing was wrong,  well I had 3 more kids and never got around to it, and the symptoms weren't that bad until just that last year and after the second MRI with a new neurosurgeon he has seen it grown and he even is baffled why my first just brushed it off like that.

I will have plenty of help but Its going to take strength not to over do it. I have been through 5 csections so have been layed up but it was a faster recovery and I had a new baby to care for too.

I will check out your profile it will be nice to see how others have coped with it. and thanks for the info.

[candyschug]

Stubburn, that will be my biggest downfall. I will so have to be tied down with a ball and chain.I cannot stand someone to do my work for me. I have been down with 5 csections but at least I had a little baby to take care of. I guess the Lord is teaching me that it is OKAY to ask for help when needed.  I am the sole caregiver of my family, cooking, cleaning and such. My hubby will help where needed. My hubby too will take off a week and we will have meals brought to us as well when he goes back to work I will have a friend come stay with me. Praying for a speedy recovery but like you said its takes patience. God Bless.

[AnnieDear]

Hi, there. I am also a homeschool mom, but of 3 children :). I was diagnosed with Chiari 1 and Syringomyelia following a car accident in June 2011. I had decompression surgery in March 2012. I had only scheduled 3 weeks total for post-op help (1st week my husband took off, then an aunt came to stay for 2 weeks). Wowie was that a joke on me! I have had a difficult recovery because I am just plain stubborn. Did too much way too soon and continue to push my body. I am approaching my one year surgery anniversary and, while things have improved, everyday is still a battle. It often comes down to sheer will power. My kids have been fantastic, but I see how difficult this is for them. They will have questions, they will be concerned. I had some difficulty with my 10 year old (she developed quite the attitude), but when I sat down to talk to her, she was just scared and overwhelmed. So make sure to keep the line of communication open with your kiddos. They need to understand how difficult this will be - not just for you, but for the entire family. It should also be stressed that your time recovering can be fun and a good time to reconnect. Having the older kids read and everyone snuggle up in bed is fun. Warning: I thought I would be able to read to them, but it took many months for me to be able to project my voice without severe nausea and pain intensification. We watched educational movies, read a lot, talked a lot, cooked, etc.

It is definitely a challenge, but it's not impossible. If you have any questions, feel free to post them or private message :). Besides recovering, daily battle with CM1 and SM, and homeschooling my kids, I'm also a student myself. I will be graduating in December with my Master's Degree in Curriculum and Instruction and I CANNOT wait to have this additional strain off of me :D

Best wishes,
AnnMarie

[selmaS]

Hi and welcome to the Chiari forum.

First u will need help for more then a few days post op....u will not be able to lift ur children for a few months....this can be a slow process to recover from.

Make sure ur Drs ruled out all related conditions...I am surprised u did not need to get to a Dr sooner since u already had a syrinx...they can grow slowly or very rapidly....

Many of us do have a journal in our profile page and u r welcome to read my journey post op .....that is the best way to read  about our individual stories.