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Author Topic: Chiari 1 with a thoracic syringomyelia  (Read 1457 times)

Offline Kim2486

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Chiari 1 with a thoracic syringomyelia
« on: February 06, 2017, 12:15:14 am »
Hi everyone
I'm here really for advice so here's where I am so far...

I was diagnosed in 2012 after ten years of testing me for cancer everywhere they thought I had MS  sent me for an MRI and there it was. I celebrated when the Letter came then I googled it....wow.

I was sent to see a neurosurgeon who told me they wouldn't treat me unless they found a syringomyelia....they found one :-( typical. I was told they needed to operate, at the time my symptoms where weakness in limbs, headaches and numbness in extremities. I had the decompression, laminectony and duraplasty in 2013 and oh my word, pain doesn't even begin to describe what I felt. I had a post op CSF leak that was never really repaired they just kept stitching me back up. Then came the pressure changes I thought the high pressure ones where bad but he sudden drop was worse, I started losing my balance, vomiting, fine motor skills in my right hand deteriorated massively, I had memory problems and a cognitive impairment and a sound that sounds like my heart beat in my ear. I go back to be told I was losing brain function because I wasn't using my brain as much (even though I'm doing a social work degree)  and I was told the cognitive impairment was an impossibility as they hadn't touched that part of my brain. I felt like I was imagining it. He told me to wait two years and go back. I came pregnant in the meantime and my symptoms worsened, one beautiful little girl, an emergency csection with specialised American equipment later and I'm worse still. My eye sight is shot to pieces I keep going blind. I paid to see a private surgeon who basically said  no one will touch me now because they won't want to worsen the damage, the syringomyelia is impossible to treat as it will cause balance problems and I already have that issue. I have been offered to become a guinea pig as I'm interesting to medical science.

I see my GO due to countless blindness episodes whilst driving who found a swelling behind my right eye, I was rushed to eye casualty to be examined. I was told to see my brain surgeon urgently because " my eyesight is perfect but my left eye is significantly worse than the right" I was somewhat confused so asked the gentlemen to explain his very strong accent made it impossible for me to understand so I just nodded as we where verging on rude....so I ring my GP for the discharge summary to be told and I quote " other retinal disorder found"!!!! Firstly what? And no it doesn't name it. Hmmph

So I'm here to ask if anyone knows what options I have, I'm seeing my surgeon again on Friday he previously offered me a cerebrallar tonsillectomy and I don't know what to choose , I cannot go blind I need to see my children grow up

Offline web_editor

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Re: Chiari 1 with a thoracic syringomyelia
« Reply #1 on: February 06, 2017, 03:46:57 pm »
Dear Kim2486

Thank you for using our forum. I'm sorry to hear about your problems. I hope someone will come here and share their experience with you.

On Chiari malformations we have a Facebook group set up for people affected by this condition. If you're a Facebook user perhaps you might want to join. It's a closed and safe space and people are very friendly. Here is the link to join: https://www.facebook.com/groups/1684306508502633/

Please know that you can always contact our Helpline if you need confidential support and expert information. http://www.brainandspine.org.uk/helpline-contact-details

Best wishes,
BSF's Digital Communications Officer