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Thread: New, and glad to be here.

  1. #1
    New Community Member
    Join Date
    Dec 2012
    Oklahoma City, OK

    Red face New, and glad to be here.

    Greetings Brain Talk Communities,
    I am so very glad to find this support site. I am on the hunt for answers to
    why I cannot shake these symptoms that are so negatively impacting my life.
    Constant headache, pain, pressure, swooshing sounds, tingling sensations and dizziness rule my day.
    I also experience short-term memory issues and trouble stringing thoughts and tasks together.
    7 months ago I had an endoscopic third ventriculostomy to address aqueductal stenosis. I have a
    2.1 cm posterior fossa arachnoid cyst, about which there has been much debate with respect to it's role in
    my symptoms. There has also been an opinion of a Chiari-like scenario due to the cyst crowding things, although
    MRI shows no herniation. The cyst was left alone, as my surgeon felt the ETV was the appropriate action at that time.
    Since the ETV surgery I have had increasing pressure feeling inside my head, like someone is in there pushing
    and trying to get out. The pain knocks me out, and I feel like I have a 20-pound weight on my head. The
    swooshing sound is new since the surgery, and it gets so loud in one ear that I can hardly focus on anything else,
    especially in the latter part of the day and all night. Standard tylenol and 800MG ibuprofen do nothing.
    Gabapentin does nothing. Endocet works for about an hour.
    My neurologist has set me up to have a lumbar puncture to measure intracranial pressure, and says that will help him know
    which direction to head in next. Latest MRI and CSF CINE flow study reports say the ETV is good (patent) and flow is "adequate". But I
    still see little flow in & out & around the 3rd & 4th ventricles. My neurosurgeon even cancelled a check-up appointment on me, saying
    that the MRI shows my brain is "anatomically correct" and there's nothing else he can do.
    I feel I have an "ok" set of docs to work with, but long waits for appointments and procedures have me trying to find out all I can on my own.
    Could this be some sort of transient or temporary hydrocephalus? Could it be vascular? Or subarachnoid bleeding? Could the cyst be playing
    a part in this? Ugh. Are we on the right track with the spinal tap?
    This is quite the long intro... Hard to stop once I get rolling.
    Thanks for taking the time to read this, and any input whatsoever is greatly appreciated.

  2. #2
    Distinguished Community Member houghchrst's Avatar
    Join Date
    Oct 2006
    Blog Entries


    Doug welcome. Glad you found us. I am sorry you are suffering so terribly. If you browse around the different forums here and do a bit of reading maybe you can find a spot that is a little more symptom selective and try posting there. There are many dealing with some of your issues so posting a query there may get ya quicker response. Hopefully someone will come along a give ya a hollar.

  3. #3
    Distinguished Community Member
    Join Date
    Oct 2006


    welcome to BT Doug.

  4. #4

    Default New here too!

    Looks like just few miles south of you Doug. I am dealing with 25 years of insulin dependent diabetes on a pump and CGM past 13 years (CGM just 2 years). Having what all docs are calling just Diabetic Neuropathy, so typical just morphine and muscle relaxants, but no solution, just a mask with pain killers and it really bites. I'm starting to read about Neuromodulation and Wet Cell, the Rebuilder 2407, and other electrical.

    The morphine definitely removes the libido, so add that to the life changer list.

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