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Thread: Hi Everyone

  1. #1

    Default Hi Everyone

    Have a teenage daughter with a Syrnix. 3 repairs done ( Fossa Decompression, Duraplasty and a Syringo-plueral shunt) Procedures dld not fix the problem. Had a VP shunt helped with the Hydocephlus. The procedures unsuccessful due to scaring near the brain stem. Unable to stent that area. Chronic problems with pain ie headache numbness and tingling. Also has Rhematoid Arthirtis. Meds do not help much. Anyone living with a Syrnix that is not fixed. Anyone know of other solutions to this problem?

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((bk_janae))))))

    Welcome to Braintalk!

    I am so sorry for all that your daughter and you are going through.

    I have no experience with Syrnix or any of your daughter's other issues, but we do have forums here, where you might find folks, who do have similar experiences. Perhaps Hydrocephalus, Chronic Pain might be places to start.

    And be sure to check the archives for our forums, which relate to your daughter's symptoms and condition. Archives can usually be found at the top of the page for each forum in a "sticky post" by a Braintalk administrator. The link in the post will take you to our old Braintalk forums, which were quite active a few years ago and contain a great deal of information.

    You will also find caring and understanding parents on our Child Neurology forum. Please feel free to share with us there.

    Sending healing thoughts ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    I'm "bumping up" this post for you, so it will appear in New Posts. I hope it will garner the attention of someone, who can help you or share information with you to help your daughter.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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