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Simple tips: When YOU suddenly join the TBI club! Part 1 of 3

22 Feb

To receive the quality care you or a loved one deserves after traumatic brain injury you must have excellent healthcare professionals who are truly intervening and making sure they get the best.  That’s the first order of business and a priority!   It will make the difference for life versus death and long term consequence of traumatic brain injury.

Brain injury is a long journey and dealing with multi-disciplined experienced healthcare providers is essential.  It’s helpful if at least one physician has experienced the ramifications of TBI personally, by a friend, or family member.  Make sure at least one main healthcare provider knew the survivor prior to injury. images-323

Immediately following injury one needs:

  • Patient advocate
  • Excellent healthcare professionals
  • Making sure patient gets best care
  • That’s what they need & everyone wants
  • Does healthcare professional have personal experience with TBI?
  • Did they know person before injury?
  • Are they stopping by to see the patient?

This helps set an accurate baseline and provides much needed support. It’s helpful when they take a particular interest in the care.  The following is a list of physicians initially involved caring for an individual with TBI: emergency room physicians, neurosurgery, neuroendocrinology, neurology, physiatrist (PM&R physical medicine and rehabilitation), psychiatry, neuro-ophthalmology, to name a few disciplines.

Further referrals and disciplines are called upon with the rehabilitation process or sooner if complications occur.  This list expands depending upon the condition and symptoms of the patient.  Most survivors will initially be seen by a neurosurgeon when an immediate life-threatening injury occurs.

Frequently, endocrine testing is withheld and it is vital to proper recovery.  Endocrine testing should begin soon after injury (within a couple days) and continue on a regular basis every couple months for the first year.  Routine endocrine follow-up years later is essential.

If the endocrine system is off balance in one small area, the entire mind-body-brain connection will be off-balance.  Brain injury is a very fine-balancing-act with chemistry.  If the brain doesn’t provide the body with proper chemistry, it will be supplemented.

images-276There is a strong correlation between neuroendocrine and rate of recovery from TBI.  This is vital to regaining proper balance and equilibrium in one’s body.  Don’t minimize or put off an endocrine consult.  Request it.  Demand it.  Get it!  It can save your life, it will speed recovery, and it will give the full picture of traumatic brain injury.

Without it, one lives with a body that can’t connect to the messages the brain is relaying.  Remember, the brain controls every involuntary and voluntary bodily functions. Just because your loved one looks “good”, does not mean they are “good functioning”.  

Essential to recovery

  • Neuroendocrine testing ASAP & follow-up months & years later=Even when returning to “normalcy” or independence
  • Comparison MRI, CT scans, and blood work as requested by physician

***Get a copy of all medical records, films, MRI, CT and special tests.  Keep them for comparison purposes in one’s future.  Usually within 10 years all records, films and tests are purged from the system and lost forever.  They are your records … get them!  You will need them again.

With early intervention, ongoing healthcare, and supportive family and friends these are recipe for key to optimal level of functioning and recovery.  No one knows or can predict one’s optimal level.  That is the real mystery of TBI: when and how one recovers!

Rehabilitation must be ongoing and not stopped just because the “usual time for rehabilitation might be 6-8 weeks” or because they feel “one is not progressing”.  There might need to be a delay from rehabilitation while the survivor remains at a plateau.  When they begin progressing they should begin rehabilitation again.

This is an injury that fluctuates with many hills and valleys with a mountain to climb.  Rehabilitation should be available whenever one needs help.  Realistically, it is not.  It is something one needs to fight for, when there is little fight left in the mind-body-brain.

Best outcome includes

  • Early intervention
  • Ongoing healthcare
  • Supportive family, friends & colleagues

Rehabilitation

  • Needs ongoing rehabilitation
  • Not stopped because “normal rehabilitation” is 6-8 weeks
  • Not stopped because “not progressing”
  • May need to stop rehabilitation temporarily if reaching “plateau”
  • Restart rehabilitation at any phase in the future when continue with progression
  • After discharge make available rehabilitation when one needs help

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2 responses to “Simple tips: When YOU suddenly join the TBI club! Part 1 of 3

  1. heidirmoore

    February 22, 2013 at 12:25 am

    Edie–I’m afraid people will think you’re paying me for these comments if I gush as much as I feel like it over your writing 🙂 … but (as always!) what you have said here is just so important, I don’t think I can type enough emphatic words or exclamation points. You do such great work at empowering patients, teaching us to be in control of our situations, as much as we can be.

    From your post, I had a really strong reminder that when we’re sick or injured, we may not be able to control the progression of the disease, but we can control the kind of care we get and inform the medical experts we hire to consult on our case.

    Having copies of medical records on hand is crucial; because it gives us power, we can bring about positive change. This week I was able to get an appointment in March with a specialist who was booking appointments for May because I didn’t have to request my records from the university hospitals that did the tests. “No problem,” I told the officious receptionist. “I can fax you those today.” As soon as I said that, that March appointment materialized from who knows where! In addition, because I had records of an expensive, invasive test, I don’t need to have a much simpler test that this new doctor wanted to order for me. “Oh, you’ve had the xxx test? Well, then you can skip the zzz test. Just bring your records in March.” Whew! That’s a couple of bucks I can definitely use.

    Now, if I can just *remember* to bring those records with me….Note to self….lol…..

    Thanks again, Edie!!

    Best,

    Heidi

     
    • brain injury self rehabilitation (BISR)

      February 27, 2013 at 11:14 am

      Heidi,

      You have some amazing points here! First, if one has their records an earlier appointment is possible. Second, tests don’t need to be repeated if one can provide: where, date, tests, and results. Hence, it’s important to know what tests were done, results, and reason for tests. Finally, controlling one’s care by empowering ourselves.

      Thanks for all your input and compliments! I laughed when other’s might think you’re being paid!LOL I might only have known two people that have made a couple comments. Otherwise, everyone is simply from posting the blog. When I first started this my sister made exceptional comments, and of course I deleted them by accident! I can’t even pay her to do it again!LOL She’s a gem of a sister, and has been there for me emotionally … albeit 2000 miles away!

      Thanks again Heidi. My posts have been difficult to write, but challenging is a good thing!

      Take care and stay safe,
      Edie

       

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