After Chiari Surgery.. Please help!
 

has he been back for his 6 week check . if he hasnt he needs too , if he has then yes he needs to call the dr. asap.

ya he has been back for his 6 week.. doctor looked at his MRIs, but not the actual incision site. he said everything was good & discharged him to go back to work. im guessing its just where they took out part of his skull though.. because the doctor DID say that it was the worse case of Chiari he's ever seen & hes been doing it for 20+ years! He had a headache last night so i'm getting a little worried. what does that mean if you have a headache AFTER the surgery? that the brain is sloping back down? there is so little information about Chiari out there & i dont understand doctor talk that well! I would love to hear other people's story with Chiari and recovery and all that. Thanks for the advice though!

I had surgery back in June 2011 and I myself have a very deep indention in the back of my head from where they removed my skull !

oh okay! thats what i thought it might be.. just from the surgery. would you happen to know what it means if you get a headache after surgery? does that mean things are going back to the way they were before surgery?

Thats a great question. One I would like answered myself. I had my surgery in June and just started having reocurring headaches 1 week ago. This is very scary and discouraging!!! Put a call into my Neuro this morning hopefully get some answers soon. After my surgery I had spinal fluid leakage and had a horrible headache for 1 week after I was in the hospital for that week. As far as this headache Im still wondering. Lets PRAY we are not going back to the way things were before for the both of us..

let me know what your doctor says about them! i am very curious & if my boyfriend has another headache (hes only had one so far since surgery almost 3 months ago) i will call his doctor!

I will let you know. Little discouraged cant get into see him till Feb. :mad: will let you know as soon as I can .

My 6 year old son had decompression surgery Dec 28th 2011. We just got his stitches removed today. He has done fairly well so far. My only concern right now is that he can not straighten his head. His chin is downward and his head is tilted to the left. It is very noticeable, and makes it hard for him to balance. Dr said that this is not due to the surgery. He was able to move fine before. We go back in 3 weeks.....Why is it like this?

the wonderful thing about neuro docs.. they seem to ALWAYS be booked up! (Sarcasm ofcourse) if i hear anything also ill post it on here too! i wish there was more info on the after surgery part of chiari!

When my boyfriend had his surgery in november he did that as well, always kept it down & i had to tell him "Honey lift ur head up a little bit" (i would say it everyday all day) and eventually it went away. I think it has to do with the muscles healing where they cut them open but im not 100% sure. Hope this helps!!

Just looking for some answers
 

After being diagnosed with Chiari Malformation it felt good to go back to my GP and say "Remember how I have been telling you there is something wrong with me? There is." Not that it meant much more than that I was not crazy. My husband went with me to my first appointment with the Neurosurgeon and was shocked that I wanted to have surgery. He had no idea how bad I really felt. No one really knew because I had gotten good at dealing with it, but it was getting worse and getting worse quickly.
I had the surgery on November 28th and felt better right away (helped along with pain meds). I had pain from the incision but did not feel weighted down and the numbness in my arms and feet was gone. I too was in ICU for 2 days and then went home on the 5th day after surgery.
I went to see my Neurosurgeon a week later to have the staples taken out and I have an appointment for an MRI on January 18th. There has really been no after care at all. I felt really good at the first appointment and the first 3 weeks were great. Between Christmas and New Years I started having the numbness "waves" go over my body. There has been returning numbness in my feet and my right arm. The pain in my shoulder blade area has returned and now I have a horrible pain in my head, which is not a headache. It is more like someone is sticking a pencil into the back of my head. It comes and goes (and seems like where he may have implanted the dura that is holding my brain up) but when it happens it takes my breath away and can last for quite awhile. I have also been dealing with horrible neck pain for the last 3 weeks.
I anticipate that after the MRI the surgeon is going to release me to go back to work. I am a 911 dispatcher and I don't know if it is even safe for me to be doing that job right now. I would hate for someone to get hurt because I was too nervous to talk to my surgeon about my concerns and to ask him for more time off.
I hate hanging around the house all day and cannot seem to find the energy to do much. I don't know how working 8 hours and a fast pace stressful job and then coming home to a husband and 3 kids is going to be possible.
**I am also unable to find anything about what to expect after this surgery. It really seems like we get sent home to fend for ourselves because no one knows much about this. I am glad I had surgery because I do feel much better, but this pain in my head has me really concerned.

Thanks for letting me vent

I was a jailer and dispathcer too and the stress was to much for me to handle and so went on ssd . I cried the day I left my job , but had to do what I had to do good luck ....

I would definitely go back to the doctor and let him/her know these new symptoms!! and as for the job.. thats a decision you would have to make on your own. My boyfriend is quickly learning that he cant do his job all that well anymore bc of the chiari.. its too straining on his head. so we may have to make a decision soon too! So i know how you feel!! i am praying that one day they have more information on chiari AFTER the surgery!!