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11-29-2012, 12:33 AM | #91 | ||
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i am 17 years old and in August of 2012 i had been diagnosed with chiari malformation. i have a syrinx at the top of my spinal cord and another one right about a herniated disc that i have in the t-12 region....... my symptoms include extremly bad headaches, neck pains, shooting pains down my spine, and numbness to the point of brief paralysis in my legs..... i met with an amazing neurosuregon at New York Presbyterian Hostpial in the Cornell Weil College...... my decompression surgery is set for Decemeber 19th 2012..... just 20 days away...... my nerves are through the roof and im praying i dont have a bad experience with recovery......... after all i am 17 years old and all i want is to be able to live my life normally again because my symptoms have taken me out of work and leave me home from school plenty of days......bottom line is my life is no longer the same....
Does anyone have any tips for me of what i should do before or after surgery to help with my recovery and procedure? im still so young and am extremely nervous for this whole scenario!!! PLEASE HELP! |
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04-26-2013, 10:24 PM | #92 | ||
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09-26-2013, 12:16 PM | #93 | ||
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I just had this surgery September20,2013. The first night was impossible. I was in a lot of pain and nautious! I was released the next day after my surgeon came in and saw me. He said that I really needed this surgery. I have suffered for over 20 years with migraines and temporary paralysis. I couldn't hold a job for very long because the management and coworkers never understood. This year has been full of health issues starting with a heart attack but any way... I wasn't nervous or scared about the surgery. I actually was cracking jokes up until I was put under. The surgeon also advised me the incision was a lot bigger than he expected. He also told me my recovery will take longer than expected as well! I'm on day 6 and I'm pretty much confined to the couch. My symptoms are as follow; I can't sit,stand,read and watch tv for long periods of times because I become dizzy. I'm nautious 24/7 even with medication, I feel exhausted,sometimes I can't get comfortable,my hearing has become muffled,I can't feel the tip of my tongue,when I stand up on my left side of my scalp I feel like there are bugs crawling under my skin, I can't move my head from side to side or up and down,and last thing I can't hold the phone up to either ear because it hurts and echoes. I am waiting for the surgeon to call me back to see if all of these symptoms are normal. Back track here a little bit the reason why I wasn't nervous about the surgery is because my neurosurgeon is the best on the west coast and my doctor who found this malformation and pineal cysts two years ago already prepared me about the surgery. well that's my story so far about my surgery! I don't know if it helps or not but just like everybody has said that each person is different... Lol now I can add cow (which is what replaced the part of my skull the dr removed) to my genealogy!! Kay |
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12-15-2013, 11:54 PM | #94 | ||
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I had surgery for my Arnold Chiari back in 2005 and it went well. One of the main reasons for me getting the surgery was because of the Syringomyelia inside my spinal cord and the surgery was a success. Then in 2007 I was diagnosed with Tethered Cord Syndrome and had to have surgery again for that where they broke my one vertebrae and then drill a hole through it and then disconnected my spinal cord from my tail bone. Again I felt immediate improvement after the surgery. I still have severe back pain and neck pain and can not work but the surgeries helped me. If anyone has questions send me a message with your questions and remember a good surgery is the result of a good surgeon.
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12-23-2013, 11:44 PM | #95 | ||
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I was diagnosed with Arnold Chiari Malformation when I was 12 years old in 1998 on a fluke...
My middle school conducted mandatory scoliosis screenings in gym class and of course I was one of the only students pulled aside to be told I had a severely crooked spine. I was so embarrassed to be one of the only kids with scoliosis (because middle-schoolers are so concerned about their social status, ha!), but I had no idea that this random discovery was saving me from years of pain and discomfort down the road. Since my spinal curve was so severe, my doctor suggested I have an MRI. From the screening they discovered I had severed spinal fluid build-up (from Arnold Chiari Malformation) which was causing my spine to curve. My first decompression surgery went well. Recovery lasted only 3-weeks before I was back in school; I suppose children are pretty resilient. I never experienced any negative symptoms besides soreness, but during my six-month check-up with my neurosurgeon he discovered that my CSF had begun to build up again. After my second decompression my surgeon was very concerned about the instability in my spine. Since a large portion of the spinal column (from c-2 to t-1) had been removed, I was told that my neck was very fragile and any rough act could result in me breaking my neck. Therefore, my surgeon decided to perform a spinal fusion on the length of my spine that had been operated. I now have two metal rods, 20 screws, and bone grafts that have transformed my once flexible neck into one solid, stiff structure. From the surgery my neck movement has decreased by over 50% (I can no longer look down and see my belly button), but I have gotten used to it. I am now 28 years old and still symptom-free. I'm sure there were a lot more specific details concerning my operations, but I was young and didn't fully understand the scope of what I was dealing with. I often wonder if I didn't have the spinal fusion to stabilize my neck if I would be having headaches and pain associated with the decompression surgery. Maybe the stabilization of a neck of severed muscles is solution to a pain-free recovery later in life. I don't know? My suggestion to parents with children in middle school: Make sure your kids get screened for scoliosis!!! |
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01-01-2014, 09:29 PM | #96 | ||
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Hi, I don,'t know you but I too had the decompression surgery and I know how you feel. I will be praying for you.
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01-31-2014, 11:40 AM | #97 | ||
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I will say I totally understand. I had my surgery Dec.4 2013. I had this for over 10 yr dealing with the head pain balance ,memory its a mess . now after surgery the only thing that changed was my walking got a lil better. I so understand ur pain with the neck . this is like nothing I could have inmagine. and u are right about these DRS its like OK I CUT U NOW IM DONE. AND I NOW CRY AT A DROP OF A DIME AND DONT NO Y.
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01-31-2014, 11:42 AM | #98 | ||
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HI. I have had this sugery on dec 4 . if I new wht I no now would have never done it
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02-14-2014, 02:50 PM | #99 | ||
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I realize this is an older thread, but newer responses are here and I wanted to offer my experience.
I had the decompression surgery 10/04. I also have a syrinx in my cervical spinal cord that has done severe damage. I'm in pain mgmt for the rest of my life, but it's ok. I can deal with that. When I was in the hospital after surgery it was all good. Then they sent me home. By my 2nd day home I was in tears because the pain was so bad. I went into the dr's office and he asked, "Are you taking all the meds we sent home? The pain meds and steroids?" Well, they forgot to send home steroids. We filled that script fast and within an HOUR after taking it, I felt like I was actually going to live. There was still post surgery pain - I mean, hey, it was freaking brain surgery and they removed a piece of my spine, but the steroid reducing that swelling was the life-saver. Through my sharing on the 'net, I've discovered that sometimes dr's don't think to send home that steroid script. And when asked and it's given, people are getting relief. I'm not saying that's the case for the majority of the posters here, your continuing pain, long past initial recovery is something entirely different. My other advice is to find a really good pain management clinic. I'm on a boatload of meds, but I also have 6 diseases. But for the Chiari/Syrinx, the mix that works for me is Hydrocodone, Zonegran (I can't take Gapapentin in any form whether it's Neurontin, LYrica, etc. because it makes me psychotic - a KNOWN side effect dr's don't tell you about til you're about to kill yourself), a muscle relaxer and if I hadn't had gastric bypass (weight loss surgery) I'd be taking an anti-inflammatory - that's a life saver to people with ACM 1 and/or Syrinx. I hope all who've had the surgery can find relief both in the short and long term. It's hard enough to have had to suffer from these debilitating diseases for so long, but when the recovery goes on and on...it can be disheartening. It also did me a lot of good to find a great therapist to help me deal. |
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03-06-2014, 04:17 AM | #100 | ||
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I suffer to Arnold Chiari Malformation and Hydrocephalus.
I would really appreciate it. My last surgeries were last year Feb and May 2013. Thank You, Take care, Samantha South Africa |
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