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Multiple surgeries for Chiari?? Even years later??

I am scheduled to have decompression surgery for my Chiari on October 28- 3 weeks from Tuesday.  I am beginning to get a little nervous about it.  My question is this?  Are there alot of people out there who have had the decompression surgery and then maybe years down the road start to have all the symptoms all over again?  Seems like that is a common theme lately on the forum.  Just curious as to how many people out there have had either multiple surgeries for their Chiari or years later after the surgery begin to have problems again.  My husband and I were just talking last night after reading some of the posts- he said it would really stink to have to have this surgery every so many years!  I thought yeah it would!  I would also love to hear from anyone who has had the decompression surgery once- and they are still doing fine years later.  I just kind of like to know what to expect!  If possible!  :)
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Avatar universal
Hello, I had Chairi surgery December 2013, first Dec. 10th  decom- pression trans-orally, next on the 12th I had Fusion on back of head and neck.  My surgeon was Dr. Krishnaney at the Cleveland Clinic.....Wonderful staff, awesome place...I feel they saved my life.  My hair is falling out at a rapid pace.  Is it related?  My thyroid is normal.  Thank you
Geri
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620923 tn?1452915648
COMMUNITY LEADER

  HI and welcome to the Chiari forum.

Thank you for sharing ur chiari experience with us...it is so good to hear from others that have been thru the same thing.

  So many that have lingering issues are finding that they have other related conditions to chiari that have caused some symptoms to continue.


   And depending on how long a nerve was compressed it is possible to have some nerve damage....ur Dr can tell u if that is the case if u have lasting effects post op.

  Again, thanks for sharing and I hope u stick around and continue to share ur journey with us.

    "selma"
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Avatar universal
I had surgery in Feb. 2000.  Two more surgeries that year to fix pseudomenigiocele..(bag of leaking spinal fluid on back of my hear where patch didn't seal)  Turns out I had MRSA at the site of the surgery....inside my head not on the skin.  Doin pretty good from that surgery. Swam everyday per dr orders to strengthen neck muscles.  Took several years for the aphasia (wrong/forgotten words) to get better, still get headaches and really dizzy with weather fronts, and extremely windy days.  Lots of people that have had some kind of brain thing experience this.  I worked hard reading and talking to get over many symptoms.  I had Chiari 1, couldn't feel below knees, tripping, dropping things (hands getting numb) and extreme headaches pressure in temple and around ears and jaw, the only relief I felt was to hang my head over backwards on a pillow or off of the bed.  Wish you all well
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Thanks for sharing ur chiari experience with us, this is so valuable to newbies of the condition and we can not say it enuff that we have to research the drs to make sure they r in fact well experienced with chiari.

I am sorry to hear u r developing pressure HA's again, have u been to have testing to see if it is PTC?

   "selma"
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Avatar universal
I have had two surgerys. My first one was done by a doctor with little experience who caused more problems then he fixed. (that was my won faught for not researching better. The second time which was two years later i did alot of research and found the best Chairi doctor in the country, at Johns Hopkins in Baltimore. This one was much better. It has been six years and I can feel all my symptoms coming back. With me it is mostly severe pressure, plus the severe nerve damage my first doctor did.
best advice to you is research your doctor...
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Avatar universal
The cause of a chiari malformation is from a  too small or mishaped head.  This happens when you are forming as an embryo.   Things need to be changed internally. Things are crowded internally.  So dont waste time with anybody other than a chiari specialist.  
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