Living with Chiari

[tmk83]

Hi,

I was just wondering if people work full time and are able to live normal lives?
The other day I was at work and was tempted to lay on the floor, in the middle of the walkway because my head was so bad!

Since my operation almost 2 years ago I haven't been able to exercise without getting a headache but now it is getting worse again like it was before I had my surgery.
How do you know if you need a second operation?  My surgeon got an MRI in Dec 2008 and said that everything looked good and the way it was supposed to.

Today I have an appointment with a neourologist to see if there are any other related reasons that i could still be having headaches.  I am scared that they will find something but also hoping they will - at least that way I have a reason for having headaches every day again!

[tink71083]

We will all keep our fingers crossed for you that you don't need a second operation! I hope the meds continue to help with your pain!

[tmk83]

Thank you very much for all your responses.

I saw a neurologist last week and he looked at my MRI from before the operation and compared it to the MRI after the operation.  He didn't say much but I don't think he really liked what he saw!  He did say that he was going to talk to my surgeon and get a second opinion from another radiographer on my scans - he is thinking that I may need a second operation?

He did put me on medication for a month (until I go back and see him) I didn't really want to have to rely on medication (even though I always seem to be taking something for pain) - but so far so good, the first couple of day it made me tired but now my body is more used to it.
I still get headaches but it is more like my head is heavy and it feels better to rest it rather than a sharp pain that is completely unbearable - as I said so far so good - all I can do is to see if it continues!

[tink71083]

I had my Chiari operation in March of 2008 followed by a CSF leak repair in April 2008. I was on disbility from March until July. I now work full time, actually more than full time. I have good days and bad. Today actually is a bad day. The leg pain is terrible. I was up all night with it. Hopefully I can stay at my desk all day.

I am in the same boat with the exercise situation. I can't walk from the train without getting a headache. My first surgery aliviated everything! I woke up and said wow my legs don't hurt, my back doesn't hurt. Then I had a leak in the dura grapht and had to have it repaired. After that surgery it was like everything went back to the way it was originally. My neurosurgeon is suggestion I may have tethered cord and that it needs to be repaired. I don't want to have another operation that is going to have no results.

I wish I didn't have to work, some days i just want to crawl under my desk and sleep.

Best of luck to all of you :)

[LG0526]

I am unable to work and am currently trying to get on disability.  I am about to have surgery, but I have been out of work for almost a year because of this debilitating problem.  I hope you find relief soon or get some help from a Chiari specialist.  That is the key... to find a GOOD Chiari doc and it really can make all the difference.  Best of luck.

LG

[Shane99]

Some people can, some people can't. I'm on disability. Some days I feel pretty good and could work, but on other's there would be no way I could manage it.

Go ahead and try and get his disability approved. The worse they can do is say "no". Then you reapply until they finally say "yes".

[youngwife]

Hi, there! :)

My dh has Chiari and is able to work full time.  That is ALL he is able to do, but he does it.  He usually comes home completely wiped out, and with a splitting headache.  His symptoms have increased very much in the past six months, so it does worry me if he will be able to continue to work as he is now.

You may want to consider getting a second opinion.  Many neurosurgeons do treat Chiari, but are not specialist in Chiari.  Do you know if a CINE MRI was done?  It sounds like the CSF is not able to flow adequately, and is causing you to have raised intracranial pressure.

Seriously, do some research online, and find a good Chiari expert to either see or send your films to.  It's worth the time and effort to find someone that really knows their stuff.

Blessings,
Rebecca