Chiari Malformation Community
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going to have the Chiari Decompression Surgery...need info

Hi everyone! I'm going to be having the decompression surgery next month...my question is what should I expect? I know everyone is different and my neurosurgeon is helpful but I'd like to hear from the people who have actually gone through the surgery...what did it feel like following the surgery? What helped the pain? How long did it take, if ever, to recover after surgery? Were you able to get disability through the surgery and whatever length of recovery? Any information at all would help. I am very nervous and anxious and need a realistic expectation. - a little on my backround, I am 21 years old and I have a 2 year old and 6 month old. I got diagnosed with Chiari 1 Malformation and Syringomyelia when I was 11 years old after being in a bad car accident. I have suffered from migraines sense I was 9 years old. Along with loss of feeling correct temperature in my hands and feet with numbess and tingling on my back. All my symptoms were generally live-able. I have an extremely high tolerance for pain- both children delivered naturally with no drugs (19 and a half hour labor with my son, 13 hour labor with my daughter). With my second pregnancy my symptoms got drastically worse...severe headaches almost every other day, dizziness,  loss of strength- and what I wrote off as pregnancy related, loss of balance loss of memory, bad upper back pain. After a difficult delivery I noticed immediately everytime I bent forward, I'd get a severe headache radiating from the back of my head. Fast forward postpartum 4 months, I started getting excruciating upper back/neck pain with a complete numb spot the size of 2 softballs on my back. Along with sever headaches whenever I coughed or bent down to pick up my children, I decided to stop breastfeeding and try medicine to help manage the pain as it was unbearable. Ive tried many different medications,  elavil (worked as a child to prevent headaches), 800mg ibprofen, tramadol, flexeril, fiorinal with codeine, excedrine migraine (which never worked for me), hydrocodon, oxycoden. Nothing helping in the slightest so I made an apt with my neurosurgeon and we decided the decompression surgery is the next only option. Please leave thoughts comments personal experience etc.
1 Responses
620923 tn?1452915648

  Hi and welcome to the Chiari forum.

Well u said it we are all different and it is very diff to say what u should expect, except do not listen to the general guidelines as to how u should feel and when post op, since we r all diff we can not go by a generic time line, instead listen to ur body...

Many Of us have posted our surgical journey in a journal on our bio page...just click on the name of the member and u should be able to see the journal if not u may need to send a friend request as some (I do) have my privacy settings on friends only......
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620923 tn?1452915648
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