Living in a Post Op Chiari World

[whitebabyseal]

I had an MRI in July of 2009.  It discovered that I had a Chiari One Malformation.  The size was 27 mm.  I didn't understand at the time what that meant.  The neurosurgeon I saw told me about it, but he didn't want to do anything about it.  He wanted to do a spinal fusion in my c-spine for a compressed disc.  He did that in August of 2009 but it didn't help any of my symptoms.  If you go to www.chiarione.org and read the symptoms, I have them all.  I found a neurosurgeon that had worked on my lower back in 2002.  I sent him my records and he immediately went to work.  I had the decompression surgery in late July of 2010.  I stayed in Houston for a month before returning home.  I have been under the care of my GP since then.  I still have lots of trouble with my face, lips, extremities and right leg going numb.  I was hoping for better, but it is my understanding there could not be a better.  I called Houston in October upset about the numbing.  They suggested that I give it at least a year or year and a half.  I've never been promised a 100%.  I notice that a lot of postings on this forum have chiaris in the 6-8 mm size.  Mine is 3+ times that size.  I'm scared.  Can anyone tell me what post-op exeriences on a chiari near this size you've had?

[selmaS]

It sounds like u may just be doing too much too soon...I am much further in the recovery process and am not working nor driving....

U do have to listen to ur body as to what u should or should not be doing...but it may be too soon to be trying to carry the load u have...u have to let ur self heal first.

It also sounds like u had a CSF leak....my CSF was blocked and I did not have that type of reaction....very odd....but we all r diff ...and have diff experiences on this chiari journey.

I have a few other things going on as well, that is y no driving...and no work at this point....I am a few yrs older too....lol...

When I get stressed I get some numbing too...it is also normal to get symptoms back as u heal..and u r in the early stages....

"selma"

[whitebabyseal]

I know that my CSF was blocked.  When he got it going again, I had a spinal headache for a month.  He said that was because my body was finally flowing correctly and it was shock to my system.  I have the medical notes at work.  I'll try to get them and post early next week.  The spinal headache was like a migraine on steroids.  I had never suffered so bad with a headache in my life!  That is better now.  I've went back to work, accepted a promotion with major responsibilities, and have picked back up on working on my MBA.  That is quite a load for someone who is still under six months post op.  I'm wondering if I do have some nerve damage...because I suffered the symptoms of chiari for several years before it was treated.  When I get stressed, the numbing and tingling get worse.

[selmaS]

Hi and welcome to the Chiari forum.

First, although ur herniation was quite large, it is not the size of the herniation that is most important, but rather the overcrowding and CSF flow.....

To have a successful chiari surgery is to restore CSF flow...having remaining symptoms is not uncommon.

Surgery is not a cure, but u should be able to get some relief....and it seems that u may have something else going on or r dealing with possible nerve damage.

What I was told in regards to healing is it can take up to 2 yrs to fully heal....and I am almost 2 yrs post op and I must say I can see differences just from last yr this time....so give ur self time to heal...and do not over do...as u well know those of us with chiari will have limitations...chiari is life altering....

We do have a list of symptoms here as well....see our Health Pages-http://www.medhelp.org/health_pages/list?cid=186

Plus we do have a thread which is much larger as we like to call our manifesto of symptoms....the shorter list is more what most NS will accept as chiari symptoms.

Can u tell us a little bit more about ur surgery, was it a dura plasty?..if so what type of patch did u get?

"selma"