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.
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.
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.
- Brain Injury: My Road To Recovery – ‘Time Is Of The Essence’ (boston.cbslocal.com)
- Functional outcome of TBI improved by post acute physical therapy (handtutorblog.wordpress.com)
- New research on military traumatic brain injury (eurekalert.org)
- High Rate Of Vision Problems After Traumatic Brain Injury Found In In Combat Vets And Others (medicalnewstoday.com)
- You: Veterans with mild traumatic brain injury have brain abnormalities (labspaces.net)
- Physicians Group Calls on the FDA to Repurpose Enbrel for the Treatment of TBI, Stroke and Alzheimer’s Disease (prweb.com)