New to Chiari/ What to expect with Surgery and recovery?

[Indysweir]

Hi!  I grew up with many of the symptoms I still have.  Headaches, Migraines, dizziness, "drops", seeing spots, ringing in the ears and choking and just grew to get used to them over the years.  I had MRI's, lumbar punches and CAT scans as a young child but at a point my parents got tired of going back and getting no answers.  When I got married and had kids I found myself getting tired of the same things.  I felt bad for going in to the doctor and complaining about worse headaches, neck and shoulder pain, back aches and menstrual cramps.   I pretty much realized I was going to live with these problems and just 'dealt' with them until this past August when I got a job standing up for 8 hours a day as a cashier and all my symptoms became daily and I got news ones.  My toes went numb then my legs and arms started to tingle.  My face felt weird like I had been to the dentist and my neck was always stiff.  My headaches were out of control and I just wanted to lay down and sleep but couldn't.
I went to the doctor again and again a few days later and again a few days after that and the doctors finally got the message and sent me to get an MRI and to the Neurologist in September and I heard Chiari Malformation for the first time ever.  That doctor wanted me to get further MRI's and see a surgeon at IU medical center.  I went had the tests and he came back and said I had 0 fluid flowing in the back and only a trickle in the front and I needed surgery to help this and there was nothing other then surgery to "fix" this.

I wanted to know if anyone had any suggestions for the surgery and recovery process.

Thank you!

[selmaS]

As Shane mentioned, everyone is going to respond differently. It is a help to have an idea what to expect, but be careful not to limit ur expectations on someone else's experience.

I also must stress to research the dr u choose to see, it's fine to ask for names, but ask if the person referring knows the dr.....that is the purpose of the one thread.....list drs u have experience with and say weither or not u liked the dr.....u need a chiari expert!

[Shane99]

I guess everyone is different. I don't remember anything about the rest of the day I was operated on (Tuesday morning), much less walking. I wasn't able to get out of bed until Thursday evening. Then they trasfered me to a regular room Friday morning and I went home Saturday mid-day. I was very uncomfortable and in pain for quite a bit of the time. I could barely walk when I was sent home, but I was able to make it up a flight of stairs to my bedroom. They didn't have me walk any more than in the room a little before sending me home.

The first couple of days, my sister stayed while my wife was at work, but after that I was fine enough at home during the day. I could make it to from the bed to the bathroom, couch, and kitchen for simple things like sandwiches.

I got sick my second or third week. I wasn't able to take walks for a month or more. And I still haven't been back to work. The operation was 7 months ago. But my problem are probably being considered permanant.

Another person on these forums recently had surgery and seems to be having a much easier time of things. So, it really does depend on each individual.

[Indysweir]

Thank you!  This is a great post and you really helped a lot in understanding what to expect.   I will let my family read this to understand as well.  Thanks again.

[jyojlynn]

This was a very inspirational post. For those of us facing this surgery, not knowing what is going to happen is the worst part of it.  I am really scared, but your message was very hopeful.  Thank you.

Joy

[jptdad]

Greetings to ya and welcome!

During the pre-op process, they will go over certain meds that you should not take, anything to thin the blood, warfarin, asperin about 7 days before the surgery.

The meds used to knock out the brain takes about an hour and you will spend this time under with heavy meds.  Of course you can have someone in the prep room with you until they wheel you into the operating room.  The surgical process itself should be gone over with you by the neurosurgeon as far as processes.

The time you wake will depend on how your body reacts to the meds given to put you under.  I was pretty groggy the first day, although physical therapy had me up and walking about 2 hours after waking.  Of course did not go far.

The second day was an awakening, I was up and walking on my own half way down to the nurses station.  The back of my head was numb from cutting through nerves and had no feeling of the surgery at all, just tired.  The third day I was moved to a step down unit off the critical one and was up and walking several laps around the hallways.  My body felt no pain whatsoever, probably a little lingering of meds used from the surgery.  By the 4th day was released.  The doc gave me several prescriptions for the healing process and instructions were to do nothing but rest, rest, rest.  About a week later was taking walks but no lifting anything more than 5 lbs.  

Had the stitches removed about a week after surgery and was taking showers before this and being careful not to get the stitches wet.  I stayed at home to recouperate and went back to work 5 weeks after the surgery.  Felt wonderful.  For me all symptoms of CM vanished and I hope this is the same for you.

Peace,
jptdad