1 month post op concerns - Does the recovery story sound familiar?

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my daughter, age 16, had decompression surgery around a month ago. She's lost her memory, uses a walker, and is unable to speak as well as before. She struggles to get the right words to come. Now she's getting nauseous constantly.

Before surgery, she suffered with unbearable headaches and she would pass out for hours at a time after laughing, coughing, sneezing, straining, yelling, yawning, etc. she was extremely fatigued and only able to attend school once or twice a week.

does this recovery story sound familiar?

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  • Posted

    my daughter has had many decompressions. she also has syringomyelia. she is also 16 ❤ my daughter complains often of memory issues and she often struggles with getting her words out. sometimes scrambled. I wouldnt say its extreme but enough to be bothersome to her. she didnt have problems with walking until the last surgery on her spine. she did lose the ability to swallow after one if her decompression surgeries. she regained that after about a month. so sorry she is going through this. these kids are true super heros!

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  • Posted

    Hiya, my recovery is slightly different to your daughters, but there are similarities. I don't have much advice but all I will say is that you just need to give it time. My Neurosurgeon has advised me many times to be patient, because it is a 2 year recovery, and on after those 2 years, can you really know what symptoms you will be left with because of nerve damage etc.

    I am 14 months post Op now and still suffering with constant nausea. I also still have constant pain, but there are also many improvements. I feel like I am stuck in my recovery for months at a time, and then suddenly I take another leap forwards. I have a friend who between 12 months and 24 months didn't notice much difference in how she felt,and then suddenly turned another corner and is now feeling great and back at work! It is not a linear recovery!

    Has the doctor prescribed anything for the nausea? I take Cyclizine which is actually quite helpful. It might be worth asking the doctor for some if she's not on them already?

    Hang in there! It's not long since she had surgery and it can be a difficult recovery. Some people bounce back, but some people, myself included, take much longer. All that keeps me going sometimes is the knowledge that I am no longer causing nerve damage etc now I'm decompressed, so even if I'm not as good as I wanted or expected, at least I'm not getting worse!

    I can't imagine going through this at age 16,or going through it as a parent either. I really feel for you both! 1 month after decompression is nothing in the grand scheme of things, because the recovery can be a long one! Be patient, don't panic yet, and try to stay positive. It's still really soon after surgery, and things will get better! Take care x

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  • Posted

    hello TASHA I'm 2years post opp and walked to theatre that morning and never walked right since i was riddled with all the normal side effects of this horrid condition as well as left sided weakness to which they thought it was a stroke at first. so when i went down for the operation i was in 4 hours longer than i should have been and to this day still unable to walk without the support of a stick/frame and long distances im still reliant on a wheelchair. had a routine app in september as i do ever 26weekz and all they xan say is "what exactly do you want us to do" i lost my cool and could t hold back no more. i hope she gets sorted soon i no no 2 cases of this CM are ever the same but somewhere it allways goes bk to bejng the same reason why all this happens.. good luck hun xx

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  • Posted

    Yes, this sounds familiar, because the decompression surgery is a bandaid...it does not address the cause of the downward herniation of the hindbrain medically known as Chiari. I had the 5 hour traumatic decompression, which still kept me in bed for years, but then had the surgery that removes the cause: Tight Filum Terminal Disssectum surgery. Now out of bed after said surgery, and after doing about 3 years of research on both surgeries I have reached a point where I can start help educating and serving others with this nightmare that touches so many lives. How bad was I? Bad enough that my sleep study showed I stopped breathing over a minute at a time all night long because of the Chiari herniation and the compression on the cranial nerves it caused, with also the lack of CSF flow. Bad enough that they thought I was having cardica arrest during the decompression surgery do to the cranial compression. The decompression surgery helped, but like most whom have had it...the symptoms are usually still there or come back with a vengenance. So, do your research on the Filum surgery...three US neursurgons perform it, as does one in Spain. God Bless

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  • Posted

    Hello. I have CM and syringomyelia. Had decompression surgery age 26 and had many symptoms develop or worsen after surgery. The syrinx shrunk so the surgery is considered successfully. I had constant vomiting and nausea, struggled to swallow and urinate and lots of memory and language difficulties .

    I just wanted to add that it is useful to learn how pain affects the body long term. Pain puts you in a constant flight or fight state. The adrenaline causes a huge list of symptoms like memory and language difficulties, confusion (aka brain fog), even excessive sweating. I am not saying that this is the cause but it can play a big part in the severity of certain symptoms.

    My recovery has been very slow. My progress is down to learning to manage pain/sickness etc through constant physio to improve walking and other movement as well as educating myself on my condition. Id like to make you aware that I felt very alone after surgery and that all the doctors were telling me to stop fighting it and just accept my new limitations. Your daughter will become so strong and she will be the one who figures out how to manage. It is extremely difficult and there are endless failures on the road to success but be confident in her strength and continue to support her and I am sure you will be amazed at her resilience .

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  • Posted

    How are the ventricles in her brain? They can be seen on CT or MRI.

    The story does not sound familiar but, some of the symptoms do. I had decompression surgery at/around 15/16 and had a shunt put in for the syringomyelia that was seen on an MRI.

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