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Thread: ICP monitor --- any input?

  1. #11
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    You are both so on target! Just like when my LP was done, and the opening pressure was completely normal. Well, of course! I had been lying still for almost an hour while being prepped and filmed, etc., so what is so difficult to understand!

    In addition, I have to go thru another brain MRI with contrast next week, when my last was done only a month ago. So I suggested we do a Standing MRI this time - perhaps getting a better visual of whatever they search for, when my headache is being triggered. The NS said that was a brilliant idea, and jumped on it. Now why do I feel this should have been his idea?? Maybe those of us going thru this have a clearer understanding than all those talented doctors we count on. Scary!

    Sarah --- there is also such a thing as an intermittent slow leak, where you have symptoms for a bit then they recede. At least that's what I have been told by several of my neuros. I think we deserve a medical degree, don't you?? lol

    Good luck!
    Marianne

  2. #12

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    Hi Marianne

    Let us know if there is a difference in the findings with the standing MRI. Since my symptoms are always worse when working I would think it would be better to have and upright MRI done too. Will you be active before this scan? It will be interesting to see if brain sag shows up in the upright position.

    Keep us posted, Thia

  3. #13
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    Thia --
    I will definitely post the results of the Stand Up MRI, since I have shown no brain sag at all in my prior brain MRIs.
    My headaches are particularly triggered by riding in the car, and this facility is 30 minutes from my home so I am expecting, and actually hoping, that one is triggered by the drive.
    Unfortunatly, it is being done very early in the morning, when I'm at my best. The worst pressure comes after I am vertical about 1 1/2 hours. So maybe I'll get up earlier just to get the best situation.

    Nothing like trying to bring it on! I am still doubtful anything will show, since I've heard the Standing MRI is less precise than the normal lying down test. We will see!

    - Marianne

  4. #14

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    Good luck Marianne! For ICP bolt monitoring, they do need to drill through your skull to place the bolt on your dura ... it is invasive and thisis why you will be in ICU. As Laura said, it is normally done to test high pressure patients, and I am not sure how great it is for leakers .... would depend upon what you do and how they interpret results. (Worth discussing w/ the nsg beforehand.) I forgot, but when your headaches come on, does lying down help them? does just sitting still help them? If you stayed lying down all day, do you NOT get headaches then? Do your headaches ever go away without taking the pain meds? I know Dr. Gray did see leaks .... but I (like your nsg) also wonder if this is what is giving you the headaches. Sooooooooo frustrating!
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

  5. #15
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    I really look forward to hearing the results Marianne. Personally my worst position is sitting, then going from sitting to standing, shame they cant do MRI's of that. All my mri's have come back normal, but then Im always laying down! I feel quite normal laying down anyway! If and when I get up, then decide to be mobile for a while, say to prepare dinner, go outside and see the dogs, drive to doctors (driving is horrid especially over bumby roads even tho my car is automatic everything) then my head starts to get worse. Being stood up straight from laying down isnt so bad and I can manage an hour or so then my first symptoms are my back and gradually get worse, especially my backache and my legs. The worse my back and legs get the worse my head gets. Then I sit down or rather lounge on the sofa, and then going from sitting to standing is awful.
    One thing I have also noticed a lot lately is the pain in my legs being so much worse at night, cramps and just generally irritable legs once I lay down. Takes me ages to get to sleep despite sleeping tablets. Does anyone else have this?

  6. #16
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    Jeanne --
    I definitely have a list of questions for my ns before or IF I undergo that ICP test. I'm still concerned I'll be in an ICU situation, since I know they won't appreciate me walking around and trying to bring it on!
    If I sit perfectly still for quite awhile, at an incline (recliner works), or lie down I can definitely get rid of the worst of it. If I have that luxury in my day, then I don't take any pain pills. So far the Fioricet works the best, but I've had to increase my dose to have it effective. Not happy with that.

    Sarah - I have only intermittent upper back pain, stabbing pains sort of like muscle spasms, and jaw and neck tightening. My neuro said there are so many nerves going up from the spine to the head that are affected, and can cause different pain receptors to trigger. At least that's what this layman understood.

    Fortunately, I don't have your leg problem. Has anyone addressed that issue with you?? Could you possibly have a herniation or pinched nerve in your lower back, coincidentally. I think they call it RLS -Restless Leg Syndrome - maybe you can start a thread and get some input. That must be awful - sleeping is my favorite activity for headache relief!

    I'll let you know how it goes on Wednesday, or whenever I get some feedback.
    - Marianne

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