Treatment that changed TBI symptoms Part 1

18 Feb

Who would ever think after nearly two decades … precisely 18 1/2 years one would get their life back?  Was it answer to prayer?  Was it prayer that kept one alive?  With certainty, it was both. This treatment and diagnosis is common to traumatic brain injury. Sadly, most do not know about it.  I did not know about it. Many TBI patients, families and even healthcare professionals do not know it.

Following a diagnosis with an abnormal finding on CAT scan I was referred to a neurosurgeon.  This neurosurgeon confirmed the findings were consistent with subarachnoid hemorrhage from the 1991 TBI that went untreated.  As a result the brain tissue absorbed the blood causing further damage to neurons. The neurosurgeon in Ann Arbor, Michigan referred me to an endocrinologist in Ann Arbor.

English: Mind map showing a Summary of Growth ...

English: Mind map showing a Summary of Growth Hormone Physiology (Photo credit: Wikipedia)

This endocrinologist did some blood work and explained a number of things about brain injury.  He was certainly educated and we were enlightened by all the education we received.  Another year lapsed before I had enough energy to return.  If you’ve had a TBI you understand how difficult it is to expend energy on appointments, when one needs energy to live a couple hours a day. He thought it was important to have endocrinology tests repeated.

It was felt that lab results could easily be incorrect, elevated, or decreased simply because many endocrinology tests must be precisely timed.   This process is easily overlooked because a hurried healthcare system.  There is always the false negative and false positive tests. An endocrinologist specializing in neuroendocrinology with TBI is my recommendation for referrals.  Find a neuro-endocrinologist.

First, I was referred to a physiatrist.  Most physiatrists are well versed with TBI and long-term effects of such an injury. This might also be a place to start for proper referrals. Early on after my injury I did see a physiatrist and he picked up on many problems, but no other physician followed. Maybe they did not want to.  Did they have time to care? Were they lacking education of TBI? There was NO continuity of care.

They have to want to find the problem, to look for the problem.  Common knowledge that America has a fragmented healthcare system.  TBI survivors need many physicians working together to problem solve because the complexity of brain injury.

Who suffers with a fragmented system?  TBI is one of many injuries that often fall into this category with life-long consequences.  Without continuity of care the patient and family suffers.  Continuity of care is a priority, all the time … but especially early after injury. This is common with chronic illness or anything that one doesn’t recover as expected.  Ultimately, the patient and family suffers.

Physicians agreed symptoms were significant for another endocrinology work-up. Another endocrinologist was notified to work on my case.  Since 18 1/2 years have lapsed it was a complex case.  It’s understandable why someone would not want this cold case.

Don’t let your injury or your loved ones go … push to get your answers.  There are answers and treatment for you.  This physician reviewed my entire history and spent months trying to problem solve. I owe it to this combination of educated professionals that understood traumatic brain injury and lead me to someone willing to take my case on.

I returned many times over the next several months to have blood work drawn and sent off to the lab.  As results came back the physician deciphered what tests needed to be done. This was a long tedious process, but with great dedication by this physician.

Rate of recovery for TBI may be directly related to neuroendocrine dysfunction.  In nearly two-thirds of TBI patients there is at least one hormone disruption but commonly multiple.  In one’s situation it was multiple hormonal disruptions, and that’s not unusual!  I’m saddened this is happening and we need to correct it.  I don’t want others to continue suffering.  I’m finding this happens with other health related issues.

The disruption in the H-P-Axis, Hypothalamus-Pituitary Axis most commonly effect the gonadal and growth hormone axes.  This was discovered in the early 20th century, but remained unaddressed in both research or clinical areas until the past several decades.

The most common reported neuroendocrine disturbances are with sex steroids and growth hormone deficiencies.   Here I will address the damage to the hypothalamus caused an inability to release any growth hormone.  Even though adults need very little, they still need growth hormone for the body to work.  Without growth hormone other hormones may not be released.  Hormones are what helps the chemical changes in the body to work simultaneously.

To determine if the brain is functioning properly with growth hormone one needs to have the arginine stimulation test.  This is the beginning of a cascade of hormonal deficiencies that occur with TBI and the beginning of my recovery.  The hypothalamus must release a hormone to trigger the release of growth hormone in the anterior pituitary.

English: Main pathway in growth regulation by ...

English: Main pathway in growth regulation by the endocrine system, mediated by growth hormone and insulin-like growth factor 1 (IGF-1). (See Wikipedia:Growth hormone#Functions of GH). Model: Mikael Häggström. To discuss image, please see Template talk:Häggström diagrams (Photo credit: Wikipedia)

When the hypothalamus is damaged certain hormones from the pituitary may not be released.  After so many years I never thought I’d begin to improve, but I never gave up hope.  I noticed some temporary changes after the arginine stimulation test, but began improving after daily injections of growth hormone.

There is hope for everyone regardless of all your struggles.  As I write this series I’m trying to get physicians to provide additional education to reach out and help TBI survivors and others.

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6 responses to “Treatment that changed TBI symptoms Part 1

  1. Cindy French

    February 18, 2013 at 7:32 pm

    cudos to you Edie a wounded warrior who deserves the highest of awards! You have certainly opened my eyes to my own body and why it acts the way it does after a stroke after 2 strokes!
    Now I will see an MS specializing neurologist in Atlanta.-maybe I don’t have MS, but something darn near like it and he can help in some way..
    I have found a whole new world in Atlanta and intend to do well as a recruiter here.

    • brain injury self rehabilitation (BISR)

      February 20, 2013 at 10:59 pm

      I’m humbled by your gracious words. There is so much I wish I knew years ago, but I’m finding how overlooked TBI and chronic illness is within our healthcare system. A neuro-endocrinologist or one specializing in brain injury may provide significant treatment for improvement. I just reblogged a free webinar Shindig by Dr. Parker who is a Neuroscientist. Consider signing up for it. It will include information for ADD and TBI. I do know things will work out for your employment and health in Atlanta. A new start, will be a good start! Take care and stay safe, Edie

      • TJB

        October 15, 2013 at 6:34 pm

        Hi. Your article is so informative. Thank you so much for posting. Could you tell me who your neuroendocrinologist was? I have a mild TBI, was referred to a neuroendocrinologist who won’t bill auto and so I need to find one who does.

      • brain injury self rehabilitation (BISR)

        October 15, 2013 at 9:13 pm

        My neuroendocrinologist does not bill auto or worker’s compensation but he gave me my life back, and that’s priceless! Nasir Haque, MD (Waterford, MI) a genius willing to spend excessive time to solve “cold cases of medicine” and unravel mysteries of the brain who makes relationships of brain and body, mind and soul, and simply the HOLISTIC caring, compassionate, healthcare professional everyone should have! He will not disappoint you, and is unlike other healthcare professionals! He will gather all the symptoms outside the box, and solve or work on one symptom at a time … but remember the patient is the most important part of the team! Without the patient/survivor there is NO healthcare team, or no need for healthcare! Keep me posted. Take care and stay safe. Edie

      • TJB

        October 16, 2013 at 12:38 pm

        Hi Edie. Thanks so much for the information. Dr. Haque is the one I was referred to but I can’t afford to see him without the insurance covering. Is there any way for us to talk back and forth without it showing up in the website? I have a couple of other questions I would like to ask if possible, but they aren’t things I feel comfortable showing up on the website. Thanks so much again!!!!

      • brain injury self rehabilitation (BISR)

        October 16, 2013 at 7:20 pm

        The best way is at my personal email address: I can “approve” or “edit” comments but since I’m not as reliable on remembering to do so I’d prefer to stick with the email address so it prevents me from making those errors and it keeps information private. Take care and stay safe, Edie


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