I am 62 yrs an was just diagnosed with chiari malformation.

My 13 year old had it done in December.. she was in pain for over a year before we even found out why she was having so much pain and her lower half of her body was not working was so very week...and sever headaches... so they did the sugery and she is not any better off then before the sugery... about a few weeks ago she had an on sit of a stroke. But every one is different in recovery so u need to do what is best for u in the end of things...hope what ever u decide works for u...

Hi Kathy,

I have horrible pain in my neck.  Balance problems when I walk, ear, eye,stomach, leg, back pain and coordination difficulties.  I had surgery in 2014.  My family placed me in assisted living.  In answer to your question about surgery, they can fix CSF flow problem as you described. Only problem it doesn't fix the nerve damage you already have. It doesn't prevent you from getting additional problems.  That's what I have seen on the different groups.  I wish I could say someone had the surgery and they have been fine ever since.  I'm almost 63. We have suffered job,home,401k,loss and separation because of Chiari.  You probably need the surgery, some people supposedly do fine and others don't.  I hate to sound negative but this has been my experience.  Also, after surgery you are returned to your primary care for follow-up.  They don't typically have a clue about so many symptoms.  Then they think u are crazy and send u to the psychiatrist as you now have a psychological problem. That's pretty much where u are left except the groups that really know what is going on.  Family and friends don't have a clue how much pain u are in.  You can't get mad as they are trying their best to understand.  Then their are the medications - The psychiatrist will try anticonvulsants, antidepressants (cymbalta) makes your hair fall out and itch.  The neurologists will try u on gabapentine and then lyrica.  This will light up your entire nervous system and give you neuropathy.   Then they will try opiates and finally morphine.  As you can imagine you will be constipated.  Said all this to say, I spent thousands of dollars on all these drugs and no relief.  I wish there was a simply happy answer about Chiari?  It affects about every system in your body.  Chiari U.K. On Facebook has a great group of people.  You might check them out.  I'm one person and it would be good to hear a positive experience.  Just having mental support helps me with the symptoms.

Hi kathy I had surgery just over 2yrs ago at 60yrs old, not it a nice operation, I was poorly with sickness and dizziness for a while but it got easier as time passed, I still take medication and manage a part time job.. Surgeon said I was unlucky as hadevery side effect going.. But everyone on here is different. Best of luck hun x

To clarify, my husband and I are still married. I had to be put in Asst living cause he couldn't take care of me as I was left at home by myself.

Hi Kathy,

you have got such a great response there, I personally think you should take your health care professional advice, i HAVE GOT SURGERY LAST YEAR, AND I AM OK NOW, PAIN AND DRUG FREE, BUT MY SPINE SOMETIME MESS ABOUT, BUT WHEN I HEK WITH THE SPECIALIST THEY SAID ITS NOTHING TO DO WITH THE CHIARI

For me the best thing I have done in my life..let me know how you are getting on