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Thread: Newly Diagnosed & Thoroughly Confused!

  1. #1

    Default Newly Diagnosed & Thoroughly Confused!

    Thank-you for adding me to this group!

    Since September, I've had countless MRIs and cat scans for three meningiomas, and none of my doctors have mentioned a "well-defined 6mm lesion anterior third ventricle midline regional foramen of Monro most compatible with a colloid cyst". Looking back at my reports, this was also seen while I was at Mayo, yet it's never been mentioned.

    I am having on-going symptoms that they have repeatedly told me are not related to my tumors. I get brain fog, blurry vision, puffy eyes, sinus/eye pressure. I have ZERO pain, thankfully.

    I get pressure behind my eyes that is made worse by leaning my head back (like on a pillow or the couch), so I thought it was an upper neck issue or tight occipital muscles. I can literally press on the back of my neck and feel the pressure behind my eyes. The eye/sinus pressure is worse when I'm sitting up and being in the car is the absolute worst!

    So, I went to a chiropractor, and she said I had a subluxated C1 and C2, which are directly related to the occipital area, which can affect the eyes. So, I THOUGHT I had found an answer.

    But now I am VERY worried about this colloid cysts. It seems to be more dangerous than my meningiomas, and maybe it's what been causing me all of my issues.

    I don't think I could press on the back of my neck (occipital area) and actually be pressing on anything on the brain, so maybe it IS my neck. But maybe it's this cyst. I feel like a crazy person!

    My doctor had scheduled a lumbar puncture for tomorrow, but I have big reservations about doing it after everything I've read here. Honestly, I've rescheduled it twice, which isn't like me. My gut has been telling me not to do it.

    I feel very confused. Is it this colloid cyst causing me issues, or is it my cervical issues, both? I'm so sick of going to the doctor already, and now I have this NEW thing to worry about.

    Sorry my first post here is long and ranty! :-/

  2. #2

    Default Lumbar puncture and colloid cyst

    Hi Andrea:

    I'm sorry that you're now a member of the club... How did the lumbar puncture go? I had one after my surgery too. But as I was reading a lumbar puncture is contra indicated in someone with a colloid cyst.

    At 6mm, that is also without hydrocephalus, you may be advised to have serial imaging done for observation to check for growth. Pay close attention to your symptoms especially headaches and gait disturbance and let your neurosurgeon know if they increase in frequency or duration. You might also want to see a neuro-ophthalmologist, to check for pressure on your optic nerve especially if you're having blurry vision. You might also consider getting a baseline neuropsychological evaluation so that they can have something on file to compare to if you do ever decide to have surgery. Listen to your gut. It's there for a reason. BTW, my headaches ceased after I was given a prescription for Decadron. If you don't have headaches yet, consider yourself lucky. Brain fog and eye pressure may be a type of mild headache. The positional component to your eye pressure is interesting since colloid cyst headaches are known to sometimes have a postural component to them.

    Here is an old thread that documents some various sizes, etc. on our experiences.

    Regards, good luck and best of health to you,
    Last edited by Levi; 03-30-2017 at 06:01 PM. Reason: new advice

  3. #3
    Distinguished Community Member agate's Avatar
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    Oct 2006
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    Hi andrea2289,


    I noticed that you're new here. I'm afraid I don't know anything about your condition. I usually post on the MS forum here. I follow medical literature in connection with MS and a couple of other conditions.

    You mentioned a chiropractor, and I did want to say that I for one wouldn't go to a chiropractor, as they lack the medical training of a medical doctor (MD or DO), and I've heard some stories about bad experiences patients have had with chiropractors.

    But many people choose a chiropractor instead of an MD. If you believe that the chiropractor is helping you, maybe you're right. I'm just saying what my own preference is.

    This is an objective description of chiropractic medicine, IMO:

    The last sentence advises you to check with your medical doctor about whether you could benefit from chiropractic care. That seems like good advice to me.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous

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