My Chiari Experience and Surgery Brain & Nerves

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I feel my first symptoms were bad headaches in my 20's. I didn't show positive for Chiari until 2010 (menopause) when It was a 1 Centimeter. I had large moments lapse of memory. I was losing my IQ. Math I was having problems. Most neurologists didn't understand me. Finally I saw a Neuro Surgeon who was not afraid  of my several diagnosis. (Epilepsy, anxiety, increased neuropathy, depressed, memory loss, clumsy, losing use of left arm hand, shoulder pain). Now I'm 56 (diagnosed Chiari 1 CM in 2010.) Went to 6 CM problems with balance, and shoulder pain, neck stiff, head aches, pressure in spinal fluid by 2017.. I got Surgery Dec 26.2017. Left leg swelled after surgery no clots) Many emotions, crying spells, and memory issues forget peoples names. Numbness in legs and neuropathy before and after surgery.. if I over do it anyday I feel more dizzy and tired. 1st long auto ridde felt really exhausted tired, foggy thoughts. SO Now It is 1/20. Right side Head is part numb part pain nerve damage (from surgery) . This is going to be a slow process. I was in hospital 3 days. Had decompression a mesh installed and part of C1 cut out with skull bone. I guess this is all normal. I hope I feel more steady on my feet in time. I am clumsy. I had these issues before surgery as well (clumsy, headaches, neuropathy). I was hoping to be better in 6 weeks I can see that's not happening. Thankful for people at church that help me and stop in to check on me. I would not think of driving now. I couldn'tt write at first getting better. I can read even just out of surgery so read Scripture Book of Mormon and BIble lots. Make a journal. Full of emotions. Can cry for  no reason. I have right temporal epilepsy and did notice increase seizures at first. I can't lay flat on my back it feels like my throat locks up and can't breath. I had to stop CPAP machine as it makes CHIARI WORSE. Sleep on sides the best. Sleep head elevated. Use a warm pad or head as it gets cold easy. Noticce low on energy. Appetite much better gined weight after surgery. This is my journey with chiari. I Take tylenol and muscle relaxer to help pain and movement. Just sharing nd hope others share as well. Oh  I get pain in eyes, head aches. Staplesout inscision healing very well. Use Baby Shampoo. I also feel like I have concussion moving my head. (I have had 1 before in a car accident). Feels like you get dizzy if you move your head very fast. Or even makes a head ache. Place of  surgery feels so cold really easy. Then it feels like when skin gets cold the chills and the cut contracts. It is really a strange feeling. Heat makes it better. I livein the North where snow and minus temps a norm. Sometimes noises and vision are sensitive.  I do not know how to make my own post or I would  do so to chart my journey.  As for after surgery coughing, sneezing, laughing, crying makes your head feel like it's going to explode. As time goes on 3 weeks now, well it still feels weird and a must to avoid or I get a long term head ache. Thank you.

 

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  • Posted

    Hi,

    I had decompression in 2014 and had to go to asst living 2015.  Finally living in house with my husband.  I have balance problems, burning sensation all over, stomach pain, throat and face pain, eye pain, back pain.  My head bobbles back and for constant muscle pain.  I sit up some but not much.  Im unable to do housework.  Miss my life.  Sorry to hear your problems.  How big was your herniation?  Mine was 13 mm.  I can’t use CPAP anymore either.  I wake up and go to bathroom all night.  I’m 63.  If I can answer any questions let me know.  

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    • Posted

      6-7mm hernia. About 14 weeks still recovering. My spinal fluid build with emotion lifting singing. I hope my body figures this out. Glad not to have head aches and it took away most of back pain. If I overdo it the pain in hands and left shoulder reoccurring. I am less dizzy.
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  • Posted

    Hi Kathy

    Thank you sharing your experience. I am going to have operation later this year. Please let us know if anything changes after six weeks, which you well, I will pray for you**

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    • Posted

      learned I have issues reading out Loud at church but not reading a book silently. I Have ringing  in Ears, sound sensative. Yesterday had a bad migraine but today it is better. Pressure in head goes up and down. Also head pressure was up yesterday with head ache and I felt more squishy in the surgery area. (Maybe fluid building) Some Days Left side weakeness. Bit better today.  This is definately an up and down process. Not like most surgeries. OH and in the cold when your brain gets cold it feels like your head crawls at the surgury site. A Woman I know says she still has that sensation16 years later. 
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    • Posted

      Dr says it take a year to heal. I can slowly start aerobics and need to build strength. It is so strange missing part of the skull. The swelling went down but still with emotions lifting or singing it makes the pressure of my spinal fluid build.  I hope my body gets used to it. Otherwise surgery did me very well. I will need to relearn things.
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