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Chiari Malformation / Hydrocephalus HELP!!

Posted , 4 users are following.

AshHayes
AshHayes

Hi there,

I am just after some more information really over the whole Chiari thing, any help would be very greatful. My wife is currently in hospital still after 3 months after having ETV surgery on 4th November for Chiari Malformation and Hydrocephalus .

There was a complication with the surgery and she ended up in intensive care after the Surgeon caused a bleed on the brain. Lost her right side movement and her speech and has Short term memory loss from this temporarily. Her speech and movement has come back now but the memory loss is still there. She got sent to the rehabilitation unit as they said she was cured, unfortunately she couldn't do the programme due to Nausea and Mobility restrictions.

They flagged something up and sent her straight back to the hospital for further tests, further Bloods, a CT scan on the spinal cord and a lumbar puncture. On the scan there is a grey area they are calling inflammation right the way up the spinal cord and in to the brain stem.

The doctors are saying they don't know what it is or what is causing it. So they are stumped.

Have you ever heard of a case like this? Any help would be much appreciated.

I am going out of my mind here as they are offering chemotherapy but I am unsure why as nothing has been diagnosed...?

Ash

0 likes, 3 replies

3 Replies

  • julia79586
    julia79586 AshHayes

    Posted

    Oh Ash, this sounds aweful for you. I can't really help but I can say what happened to me. I have chiari malformation and Syringomyelia. The Syringomyelia shows up on the MRI as a grey/black mass starting at the base of the spinal cord and goes up the whole length of the spine (I saw my scan and it was really creepy).

    Your wife can't have this though, her specialist would have spotted it. I also had Hydrocephalus after chiari surgery and had to have a shunt fitted. This became infected with suspected Meningitis which was travelling up the shunt and into the brain. At this stage I was extremely ill and put in isolation. The treatment was severe but eventually they cleared up the infection and removed the shunt.

    What I'm trying to say is your wife is in the right place and  if they are offering chemotherapy ask them why. We all associate chemotherapy with cancer but it is used to treat other things like an overactive immune system or lupus etc.

    Try to stay positive, easy to say I know but my husband thought I was on death's door but I'm fine now. I hope someone comes along here soon that can help, this forum usualy responds quickly. Take care Ash, let us all know what happens if you can x

  • Apple62
    Apple62 AshHayes

    Posted

    Hi Ash,

    I'm so sorry to hear about your wife's condition. Their are three things I would suggest. 1. Check out the websites 2. Talk to others as you are doing 3. I would get an opinion from another physician

    I don't know where you live. That would help to guide you to another resource. Chiari has a lot of strange symptoms. Don't give up and let us hear how things go.

  • b2wc97455
    b2wc97455 AshHayes

    Posted

    Hi there,

    I am sorry to hear that, what about giving Ann Conroy trust a ring?

    They will be ble to help you that

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