Veteran Hydrocephalus WALK Chairs Training – A Meeting of Minds

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by Pip Marks, HA Director of Support and Education

Empowered patients are those who become active members of their healthcare team. Obtaining and keeping copies of your medical records including images (CT scans and MRIs) is good advice for any person receiving medical attention. For those who have hydrocephalus or other chronic conditions, it is even more crucial that these medical records are preserved. By keeping a copy of your records, you can reduce unnecessary duplication of tests and can assist new physicians or specialists in seeing the full picture of your health.

One option for storing and transporting your records to and from appointments is to purchase an art portfolio holder. These carrying cases are usually sold in art supply stores and can easily accommodate large images and documents while providing privacy and protecting the items from the elements. Another idea is to keep electronic copies of this information (password-protected) on a jump drive that you can easily take with you to appointments.

It is easiest if you ask for a copy of documents, images, and test results after each visit. It will save you from a headache later if you do not have to remember where and when a particular test was performed.

Thank you Genetic Alliance for this great tip!

3 Comments for : Veteran Hydrocephalus WALK Chairs Training – A Meeting of Minds
    • MelanieC
    • May 20, 2011

    I carry a Medical Emergency Card in my wallet. It is from The Siteman Cancer Center. It has a tiny film copy of a larger film with all my medical information on it. It says on the back that it can be viewed useing a “microfiche reader” or simply a magnifying glass and light. It’s gives me piece of mind that with this card and my drivers liasence I’m pretty safe!

  1. Reply

    I highly recommend routinely obtaining a CD of your CT and MRI exams. With average computer skills, you should be able to store and compare your scans in folders on your PC, and then export them for display in your mobile smart phone. My current phone is an Android and it has a large high resolution, and it can display the scans in a very viewable format.

    The CD I receive has a program within it that allows you to open and view the scan images on your PC. In order to save them to your PC, you first need to create a new folder in your My Documents, and give it a name. Then, once you open the CD viewer program, display the “series” that you would like to save. The slices that your nsg typically uses to view ventricular size is the “transaxial,” and it is the view looking from the top of the head down. Most programs have a small box in one of the corners, and your want to check each of the boxes of the images that you want to save. There should be an option on the top right of the screen under File or View to select “Save All.” Then, select the option “Export as JPEG” images, and save all the images to the PC folder you created. You may have to do this a couple times until you get it right. Once you do, you’ve opened up a whole new capability for viewing and comparing CT and MRI scans.

    If your really adventurous, go into the folder and view the saves images, and select 1 or 2 slices which shows the thickest cross-section of the lateral ventricles. Then copy and paste these images into a new folder. I do this for each scan and then have “one” slice from each scan and can easily compare this to my scans over the last 1, 2, or 5 years. Here’s a link to a paper on my web site and you will see what I’m talking about:

    I have had perhaps 8 or 10 scans since the last one (2008) in this study, and will update it soon. My nsg also has me showing him how I create these collages from my scans.

    Stephen Dolle

    • Jilinda Richer
    • May 9, 2011

    Hi, Pip (et al.)!
    I’m seeking more detailed info about signs and symptoms of shunt malfunction. You sent me a brief summary this info previously, bit I’d like to have more detailed info, if it’s available. I’m experiencing extreme fatigue, but a tap of my Holter valve (at the Cleveland Clinic) didn’t reveal any infection or other abnormality/


    P.S. I’m mystified by the decision of the NE Ohio Support Group to dissociate itself from the HA… Ron and I still consider you folks to be close friends!

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