Just Diagnosed and really scared help plz

[rogpri]

I am 31 yrs old and just diagnosed with chiari malformation type 1 my family doc doesnt know much about it so passed me on to a nuro surgeon which i will see o  sept 16th but im scared i get dizzie blurred vision eye twitching tight neck feeling i get headaches but there not bad nothing tylenol cant cure.  Iam scared cuz i know little about this is this life threatning or make my life shorter am i gonna end up in a wheelchair or living off machi nes or even worse living off pain meds that turn me into a zombie plz help relieve some of my stress.  My doc didnt help matters much he told me about the surgery which he was reading off of wiki he had to google chiari cuz he didnt k now anything im rambling sry just really worried got 3 young children and the main supporter of the house hold plz help me...................

[rogpri]

Thank-you all for your answers Iam very happy I stumbled upon this site and that you are all able to give me answers I have an appointment to go see the nuero surgeon again next monday and ill keep you all up to date thanks again

[selmaS]

  Hi and welcome to the Chiari forum.,

AS the other members have mentioned this can be scary, we all have been there and understand how u feel so know u r not alone.

U will need more testing to see if u r a surgical candidate not all with Chiari are, but u will want to know if u have a syrinx and a CSF obstruction b4 u even consider surgery and then b4 u say yes u need a Chiari specialist and to rule out ALL related conditions first.

I had surgery 4.5 yrs ago and I am doing well even tho I do have related conditions that still cause me to have some symptoms....I have never regretted the surgery, in fact I am grateful I had it.

[Juleslynne]

Hi, it was a bit daunting when I was first wheeled into the operating theatre as there was a rush of activity to set me up with IV drip etc. that's all I knew til I woke up in theatre. I don't remember much about waking up and the first few hours but I wasn't in pain. Was very sick for two days due to the anesthetic but they gave me a pain pump so wasn't in pain. I was in ICU for five days but only because I was waiting for a bed on the ward. Because I was in ICU they kept me hooked up to all the machines - ECG. IV drip, pain pump, oxygen makes and leg wraps that pulsates (to keep circulation going). Felt all trussed up like a Christmas turkey and was do glad as they removed each IV.

Three days on the general ward - constantly sick and bot able to hero food down. Probably the meds. Got home exactly 7 days later and so pleased for my own bed. Hard to sleep first two nights as couldn't sleep on my back and my side was uncomfortable as my neck needed support. Today is my fourth day home and doing great. Easily tired though.

[desertstorm2009]

Hi Jules....
Are you ready to tell me what to expect?? Lisa

[Juleslynne]

Hi. I have just had the decompression surgery a week ago and am already almost back to full strength.  It is scary. I was very scared pre op but amazed at how well it all went. You'll be on the other side of it before you know it.

[desertstorm2009]

Sent you a private message

[hevnw8s]

Hi rogpri. I would like to start by asking you to take a slow deep breath and breathe. There is going to be a lot of information coming at you and you will need to be in a calm place to make sure everything registers. If  you haven't already looked at some of the past posts, you might try that to start...it may answer a few questions.

I understand you're scared and not sure what to do, but you have come to the right place for answers and support. We all have chiari in common and have the same/similar symptoms, but we each experience them in different ways. It's a tough journey, but you can do it.

We are here to give you support. I am fairly new to this myself so I read everyone elses questions and the answers given to help me. You will get some good advice here, but remember to do your homework so you know what to ask when you see the doctors.

We are in this together