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Newly diagnosed and about to see the NS

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Stable2309
Stable2309

Hi All. 

Just found this site.  Its a big relief to find people who are sharing their experiences.

My first diagnosis was anxiety in Feb, and was experiencing heavy headaches. My v. good GP sent me off for MRI which did come back as CM1 with 24mm herniation. 

Primary issues are constant headaches from waking to sleeping (but not felt during sport), heavy fatigue, poor memory & concentration. 

Have seen neurologist, sleep & respiratory specialist, but about to see Neuro Surgeon (NS).  As just 30 mins, wanted to check with the community what i should be checking on based on your experiences. 

In under 6mo i have gone from a person who has good job in a firm i have been at for 22 years to pretty close to no job.  

So time is of the essence. 

0 likes, 3 replies

3 Replies

  • Kerenza
    Kerenza Stable2309

    Posted

    Cars go from 0 to 60 in a few seconds... People with Chiari do the opposite!

    I was very active and working full time, until BAM... I chiari hit me. It's changed my life so much that it's completely unrecognisable.

    When with the NS try and clarify (if they don't volunteer this info) the following.

    Do I need surgery? Is there any sign of a syrinx? Is there any sign of nerve damage? Is the CSF flow impaired?

    Make yourself aware of the limitations you can expect to and also the thing you should do or avoid as someone with chiari. Try googling 22 things to avoid with Chiari, it's useful!

    Are you on Facebook? Have you joined any groups if so? Chiari and Syringomyelia: UK and Chiari Support are both great groups where you can find lots of info and support.

    Hope that's helps! Welcome to Chiari lol once you've been diagnosed, you will always be a Chairian. Even if you have successful surgery, you'll always be one of us now! ??

    • Stable2309
      Stable2309 Kerenza

      Posted

      Karenza

      First up, thanks for taking the time to respond.

      I am v aware that i am the embodiment of the accelerated life retardation campaign.    But i want to keep a strong outlook on the things i can do during those rare moments i can concentrate on something for a few minutes.

      Thanks for suggestions re NS.  Will think about that.

      Not on Facebook

      Never thought i would be one to join a cult, but this one i dont think i can do without!.

  • Apple62
    Apple62 Stable2309

    Posted

    Hi,

    I had Chiari surgery in 2014. My herniation was13mm. I had some relief with my balance issues. I still have ear, eye, neck, back, brain pain. I've been in asst living for about 2 years. I'm almost 63. I had a cervical fusion and went back to work for six months. I didn't improve and finally found the Chiari. Like you, I left a job I loved. I had to move to another state so my husband could work until retirement. He couldn't take care of me. So, I missed my wonderful husband. Anyway, I'm now trying to get another home, get my husband back and enjoy retirement while fighting Chiari. If I can be of help, let me know.

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