In All the Wrong Places for Healthcare or Was It Just All the Wrong Professionals After TBI (traumatic brain injury)?

05 Mar

Expertise is what you are looking for when you are injured or deal with chronic illness.  If you have a traumatic brain injury the confusion and multiple symptoms make this a more daunting task to figure out America’s healthcare system.  You are not looking for excuses, a pat on the back, or someone to minimize what is happening to you.  You are looking for proper medical treatment. Especially important would be an expert in brain injury and  Physical Medicine and Rehabilitation (PM&R) Physician otherwise known as a Physiatrist. 

Finally, a week after my subarachnoid hemorrhage and leaving the hospital that misdiagnosed my condition I had another appointment.  If you are going through anything this severe, you can understand a week seems like forever!   My husband and I arrived to my appointment and relieved that I was finally going to get some help. How wrong could we be?  This neurologist called a psychologist and that was the end of my visit.  There was NO blood work, NO nothing done, NO MRI, NO CAT Scan…just suffering.  I think simply a pat on the back and reassurance I would be okay.  Anxiety or depression can be a very dangerous diagnosis … when they are missing something this serious!  This is the most ridiculous and demeaning thing I could think of.  I don’t need any reassurance from anyone when I know my problem was not anxiety.

What everyone needs to know if you are injured at work there is a negative stigma.  Besides many healthcare providers will not offer treatment based on the fact they are not compensated for their time.  So expect to be turned down for treatment if you tell anyone it is a workplace injury.  Worker’s compensation is a joke.  It protects the employers, not the employee.  In retrospect, if my situation weren’t so obvious I would have created a scenario that the injury occurred at home to avoid the stigma and years of misdiagnosis.  Anyone thrown into the worker’s compensation system understands…at least if you don’t have a brain injury!  It’s an overwhelming system to be involved in regardless of what type injury occurred.

What I do know for myself and many Americans we do not request medical treatment unless we absolutely need it.  The death rate would not be so high if our medical staff would start looking outside the box.  We can all take care of our own flu, colds, and minor ailments.   When we seek medical care they should already be looking outside the box.  The frustration as a patient to not get the proper treatment and be stuck in a rut is ridiculous!  If you haven’t been there and don’t know anyone who has, I wish you only the best and pray for a lifetime of health.

Anyway, it was obvious that I could barely walk, and when I was asked to raise my legs from a sitting position each one was shaking uncontrollably.  I could barely lift my legs up without using my hands.  I don’t know what this meant because it’s never happened before but I had so many things going on at this time.  I was sweating profusely. I still was not urinating on a regular basis.

We left this healthcare system not knowing what to do.  Neither did I have energy to pursue much help.  A few days later when I began urinating my husband took a sample into the family physician’s office because it looked like thick solid blood. I wasn’t well enough to go anywhere…and that included the doctor’s office.  I was put on antibiotics for two weeks and I seemed to improve slightly.  In the meantime I spoke to my sister on the telephone and it was through her prayer chain and communication that kept this family intact.

She was aware that I was in total system failure, but I couldn’t get any help. I had NO energy to get me anywhere.  No physical, no emotional, just not one ounce of anything to get me anywhere.  My fever was over 106 degrees. She lived in Montana.  I lived in Ohio.  All we could do was pray.

My sister felt helpless so many miles away, but married with four young children of her own she had her family to care for.  She helped me in every way possible. Never underestimate the power of prayer! Thank goodness she is also a registered nurse!

My husband needed to work and my children needed me more. I never needed his help before this time in our 19 years of marriage at the time of injury. He did not know how to help me.  He was not raised in a nurturing environment, hence his mother did not know how to help either.  That’s something I just assumed everyone could do.  May be it is more innate than a learned behavior.

Do you know how to help someone if a traumatic brain injury, chronic illness, or someone injured in some way unfamiliar to you?  My children were frail at the very least as they were not receiving any support.  A traumatic brain injury is a family affair.  It’s not one person’s injury, it affects the entire family. I asked the psychologist (I saw to help with my daughter’s cerebral palsy and complication issues)  to come to my home as I did not have energy to go anywhere.  She did, but at that she also told my children there was “nothing wrong”.  This alone changed their lives forever…they have never regained trust in our healthcare professionals and lost trust in others.  What a life-altering challenge for my teenage children. Their lives took an entire new direction. They were aware that their perceptions were not deceptive. Was this simply ignorance of the providers or was it deliberate to cover-up mistakes?  There is only one answer you will get from everyone who truly knows me. This was so obvious, and I only wish I knew what I know now I would have left this circle of healthcare providers.  It’s about their financial support, their livelihood, their colleagues, their family…not the patient, when they are wrong!

In retrospect, there is only one reason this was happening.  Everything was so very obvious.  It is the way healthcare professionals will cover for their colleagues.  My sister contacted world renowned hospital in Minnesota but could not get me in until March 1992.    That seemed forever from January 1992, but I had no choice.  I was forever grateful to my sister who took it upon herself to get me help.  Who would know me better than the person who has known me from cradle to this day of March 2012.  She knew the urgency but was frustrated by the healthcare system.  Some appointment was better than none.  Too bad I lived…and I’m still here to tell what happened!  Yes, in 2010 I was told this was definitely malpractice.  What lawyer would take a case this complex and this long?  We always knew it was malpractice, but I just wanted to get better.  Honesty would have been the best solution.  That rarely happens.

We did get my family physician to make the referral.  So…by time March came my walking was a little improved but not drastically.  I had very little balance with a very wide gait or walk, and was short of breath.   We stopped and sat everywhere there was a chair so I could catch my breath and rest. My legs were so weak. I had no idea what was wrong.  This proved to be a waste of time, money and energy.  When performing the Romberg test where one must close their eyes I fell injuring my ankle.  It appeared they were looking for a disease process. At least that is what the notes for the referral indicated.  What a way to cover-up mistakes!  They missed the head injury ordeal altogether.  How would I even know that?  I just wanted to be well.  I would recommend every one to have someone look over their medical records to prevent this from happening.  You might need to hire someone to do a medical review of the records.  This could help prevent years of struggling with our healthcare system and mistakes.  It’s not about who is responsible, it’s not about who made the mistakes…it’s about how you can be the best possible and simply be healthy.


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3 responses to “In All the Wrong Places for Healthcare or Was It Just All the Wrong Professionals After TBI (traumatic brain injury)?

  1. Survivng A Bleed In My Head, This Is My Story

    March 5, 2012 at 4:01 pm

    Like I stated earlier, you are necessary and needed! Thank you for your post. I need this, I am have had every door closed in my face, when you are told that there are resources to help.. I have n income, the psychiatrist keep telling me that I am not ready to work yet. When I am alone am better. The panic attacks, and severe headaches along with the forgetfulness is a good reason, but if that is true, why am I always told no?!

    • brain injury self rehabilitation (BISR)

      March 6, 2012 at 12:55 am

      You have every right to feel the way you do. No answers, no one gets it, not many referrals for help. It’s the most difficult time to think in your entire life, and yet you are expected to have good judgement! In addition there is a tremendous financial burden and no funds available. Keep smiling, keep laughing, and keep praying because no one will crack your soul. I’ve been on the edge not just a couple of times…but probably millions by now. You will continue to get better. When you wake up, look in the mirror and love that person! Tell that person in the mirror how successful you have been in the past 15 months or so. Give her time to heal. Figure out what percentage of your life 15 months has been…that might help to put it into perspective. Every aspect of your life has been shattered, and I get it! Every corner you turn, there is something going on. It’s not something you can put aside, forget about, or just move on because you are living with it. I was determined to find my place again in the world. I prayed I either get better or the Lord to take me. A miracle did happen, and I hope I can reach out again. I’ve always had my focus on caring for others and they took advantage of my vulnerabilities for the brief period of energy I had during the day. But this focus also kept me grounded and blessed with a greater appreciation for life and the simple things I didn’t appreciate. Like normal bodily functions! Take this time to care for yourself. The child inside you is hurt badly, and needs your care and loving touch. Be kind to that person in the mirror and say only nice things about her.


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