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arnold chiari malformation

aprilmaeaaprilmae Posts: 5
edited 06/11/2012 - 8:52 AM in Degenerative Disc Disease
Hi and thanks for reading. I was in a bit of concern of what i have been through in the past two years... started back in june 09 i started to get a migraine everyday numbness to the left side tingling in my whole left side and couldnt hardly walk and my vision was very bad.. so after seeing doctor after doctor in jan 10 they told me i had arnold chiari malformation and degenerative back disease in my c5 and c6.. well going through so much pain my doctor finally referred me to a neuro surgeon.. where we discussed about having the chiari surgery. gave me the option to do it or not to let me think on it so i did for a couple of days and called and told him yes i will go through with it because of meds wasnt helping or physical theropy wasnt either. so on may 18th i did was pretty crazy surgery... first major surgery. well i stayed in the hospital for about 3 or 4 days came out on may23 well i started to see that i had some leakage coming from the back of my head where they glued me shut.. i was in the most excruciating pain where my headaches were 100 times worse.. i finally couldnt stand it anymore from the pain and having to put a towel around my head everyday so my mother called the ambulance on may29 where they admitted me again said i had a spinal leakage and i caught mrsa from the surgery.. so they kept me pretty doped up until i went through another surgery on june3 cant member what it was but i know it had to do with something with the leakage but they went back in where they did the first surgery.. from day to day getting another staple or 2 the pain was awful and being stuck in the room with the mrsa i almosted died i guess thats the whole faith thing that i didnt have cause i felt as if i wasnt gonna make it out..i lost 30 pounds within that time i stayed in the hospital. i stayed in the hospital till june17th i finally made it out and i started feeling better but then i woke up one day and couldnt raise my left arm what so ever i was shocked n scared so i rushed to the hospital they said they couldnt do anything i should go to my surgeon so i did where he scheduled me for an mri and said everything looks fine.. well now it is april 2011 and i can move my arm but no strength in it i can raise it to the side and my muscles are so tight looks like im flexing.. i been going through physical theropy for about 4 months now because of the headaches have came back and my neck pain and i have back pain.. i am currently on a lot of meds such as narcotics and anti depressant meds which i dont want to be but living with a migrain everyday and the depression is really hard at times and the back n neck pain as well.. so i am curious if i should have went through the surgery , cause of reading up on the c5 and c6 disc that are deterating it says it causes the problems i had before i had my surgery.. but yet noone is doing nothing about the degenerative back disease i got so i dont know what to do next so if you have any information would greatly appreciate it which way i should go or what i should do next..


  • i deffently dont want to be just another label or a check for the doctors... I need to figure this out and hopefully soon i am only 29 yrs of age and single parent of 2 so please any information would be great
  • I'm sorry to hear all what you went through. My Dr. put me on Lyrica for my neck pain and I have elbow and arm numbness form my C6-C7 with nerve impingement. Are you seeing a Pain Management Dr. to help? I take Maxalt 10mg wafers for my migraines. I heard that Botox can be used to help migraines now also.

    Are you taking a muscle relaxant too? Also you may want to get a second opinion from another Neurosurgeon or Orthopedic Surgeon. I don't have arnold chiari malformation but my SIL has it and she hasn't needed surgery yet. I hope you can get some pain relief soon. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • i am on muscle relaxers and i do go to pain pain manangement where they got me on perc 10 zanaflex for muscle relaxer and im on depression pills and vitamin d and iron pills and ibrofen.. and thank u for ur reply and i hope ur friend that has chiari dont have to go through what i went through surgery wise... i wish u the best luck with ur trouble as well...
  • Hi! I Have AC Malformation and also Syrimgomeylia. My syrinx is very large and had affected my life in it's entirety. I am 39 now, my symptoms began at age 7 and really became noticeable at 11. My right side is affected and continues to weaken, nerve pain, and numbness. When I had decompression surgery at age 18, I thought the numbness wouldn't spread anymore. I was very wrong. I continue to have my right side's numbness spread to my leg on RS. What surgery did you have? I have the most severe malformation, which do you have? Do you have a syrinx? I'm asking to see if we have similarities I could give you my experience. I also had A Septic Menegitis immediately following the surgery and then 9 months later from a hemorage in the brain or spine, they couldn't find it, luckily it healed on it's own. Hope to hear from you and you are doing better.
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