Confused and afraid

[Mika_37]

Two weeks ago I was diagnosed with chiari 1 malformation due to an injury of some sort. I was told that surgery is my only option.I would like to know is there a surgery where they deal with the spine? I don't want them going in my head. I'm really scared about that!

[S_Chaney]

You said you had an injury and found the Chiari while treating the injury right?

Do you have any symptoms to warrant a surgery? And what kind of cyst? or do you mean syrinx?

Chiari is very odd in the fact there is a lot of people with a herniation, but very few of them become symptomatic. If your Chiari is Asymptomatic then surgery could just end up making it symptomatic. Except in the case of a syrinx where things are virtually guaranteed to go down hill if untreated.

As the other posters already said, get a second opinion from a Chiari specialist. Make sure there is a good reason to even have the surgery.

[selmaS]

Chiari is the herniation of the cerebral tonsils which block CSF flow,which in turn cause a syrinx (cyst) to form.Many of us have surgery once an obstruction of CSF is found to prevent a syrinx (cyst).
Surgery is done to restore flow,with hopes the cyst shrinks. If left untreated could lead to permanent nerve damage.
You need a true Chiari specialist to have more testing done to rule out ALL related conditions.
We are all different and other related conditions which can affect recovery.There is no way to offer a time frame for you.Recovery can be slow and take a few months before you feel up to doing more. We need to listen to our bodies as to when we can do more.

[Mika_37]

Hi, I went to a neurologist yesterday and was told that the bottom part of my brain is seeping into my spine. That's why I have a cyst. He also stated that I have to get the decompression surgery, which I didn't want. How long is the recovery? I wanna know because most of my income comes from playing keyboard/organ at my church. Without it will cripple me financially with a laid off husband and 3 kids! I had to stop working a new job because of this. Any advice?

[frankie_rush]

Selma has some great points.  Prayers for you.

[selmaS]

   Hi  and  welcome  to  the  Chiari  forum,
I  totally  understand  your  fears  and  concerns  with this  surgery,,,,,however  many  of  us  have  had  it  with positive  results....and this  is  the only  way  to help with  this  condition....

You  said  your  Chiari  was  acquired  due  to  an injury,  may  I  ask  for  more  detail  on  that?.....it  seems  those  that  have  acquired  Chiari  actually  do  better  since  they  tend  to  not  have  any  of the related conditions  to  Chiari.....

Make  sure  you  1-  have  a true  Chiari specialist....

2-  ask  if  there  is  a CSF  obstruction

3- ask,since  it  was  acquired,  is  it  possible  the herniation  will  retract?