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

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I have been dealing with horrendous pain in my neck, shoulders and from my elbows down my arms into my hands. My neurologist is recommending removing a all piece of my skull where my spinal column passes through that opening to give more room. Has anyone else had this done. What does the 2 to 4 month recovery time entail and was the surgery successful? Trying to learn as much as I can to make some decisions. TY

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  • Posted

    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...
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  • Posted

    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.

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    • Posted

      TY for your information and opinion. I know I can't be easy gory husband to live with or to understand the level of pain.

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  • Posted

    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 had every side effect going.. But everyone on here is different. Best of luck hun x
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    • Posted

      Thanks Helen for your input. One of my concerns is recovery time. Me neurologist says 2 to 4 months. What does that mean? Will I need in home care, a re-hab place or can I take care of myself with help from my hubby?
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    • Posted

      My husband managed to look after me, but he did have to help me bath and I was very unsteady for couple wks, after that I was able to do things for myself, but you have to take it easy and not rush your recovery.. I had horrible nausea and dizziness for wks, not everyone is like that though...
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  • Posted

    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.

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    • Posted

      So glad you and your husband are still together. My husband is disabled so I'm pretty sure we will need help for a little while. My husband has sure stepped up and been helpful but no way could he take care of both of us.

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    • Posted

      My husband retired in December and now lives in an apartment. I hope to be able to move back with him. He has problems with his legs. Asst living costs so much. It would be cheaper to hire part time personal care asst. I wish u the best and let us hear what happens.
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  • Posted

    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

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    • Posted

      TY for your response. I am pretty sure I'm going to have the surgery as I basically can't stand to live like this anymore and the pain is just to much

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  • Posted

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

      You have a positive response!  Can you tell us when you were diagnosed and what your symptoms were and how your recovery went.
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