My daughter, Jenna, has had multiple concussions, and the heartache, as a mother and the ultimate caretaker for my child, is far worse than anyone could ever imagine. We followed the doctor’s orders and she still sustained more concussions. After Jenna’s third concussion, reality set in, that after each concussion her symptoms got worse and worse.
We needed to find the best doctors and therapies available to help Jenna get better. What was meant by the “Best” had many undefined definitions. The grueling hours we spent looking for a cure, were endless, and we quickly realized many things. First, there is no quick cure for a concussion. Second, every medical professional we saw treated every concussion patient the same. Third, we realized that no two concussions were the same, so we began to question why were they treating all of their patients the same? Fourth, treating the symptoms became the primary objective for Jenna’s doctors. We also realized, in our opinion, the treatments she was getting were, trial and error. There was no clear-cut protocol for treating Jenna’s concussions and her symptoms.
If your child breaks an arm, you can go to different orthopedic surgeons and all of them would give you the same protocol. They would send you for an x-ray to confirm the break, put the arm in a cast, and then take the cast off once it is healed. This is not the case with a concussion. Jenna had so many symptoms that we were dealing with. They included memory loss, blurred vision, noise and light sensitivity, headaches, migraines, brain pressure, cognitive issues, dizziness, nausea, sleeplessness, depression, and irritability.
We were going from doctor to doctor and therapy to therapy just to find even the slightest relief. It was so unbelievably draining on me; you could just imagine how hard it was on Jenna with all of her pain! We tried everything from medications, to acupuncture, to neuro-chiropractors, physical therapists, neurologists, concussion doctors, trigger point shots, nerve block shots, epidurals in her neck and hips, and even Botox.
Some of the medications that she took had adverse reactions. Most of the medications she was taking were designed to treat other medical conditions, but were now being tried for concussions too. Some of the medications she was on were designed to treat epilepsy, mood disorders, ADHD, depression, anxiety, and arthritis. Not one of them was designed for the treatment of concussions.
Her doctors included concussion specialists, psychologists, neurologists, acupuncturists, chiropractors, orthopedic surgeons, neuro- vision optometrist, pain management specialists, and physical therapy and rehabilitation specialists. There were weeks that Jenna would have up to 10 medical appointments per week.
Jenna and I were going through this craziness alone. Even some of my best friends could not understand what was really happening. Most people would look at Jenna and say she looks fine and ask why wasn’t she in school? There were no support groups where we could find other people who were going through what we were going through. HIPAA laws prevented the doctors who were treating Jenna from giving us the names of other people who were experiencing what we were going through.
People who I knew just could not understand why I had to stay home with her everyday and not leave her, even just for a couple of hours. No one could understand the pain she was in; her head throbbing, major head pressure, anxiety, bumping into walls, slurring her speech, lying in a fetal position in pain, etc. She needed me to be with her at all times. People felt she was old enough to be home by herself for a couple of hours and that she was “wrapping me” around her finger. They even said she should be going to school, as she will never get better without being social. I saw no one and she saw no one, and it was like we were drowning and didn’t have a life raft to help us to stay afloat.
I was so frustrated that I went on line to look for some people that might have gone through some of the same things. It was amazing; there were so many people that had the same frustrations. What I realized was that every concussion was different! No two concussions were the same. Everyone was having the same basic problems; the inability to find the answers we needed to help our children get better and to learn how to deal with the isolation and frustration that we all were encountering. I was speaking to people all over the country. The Internet and Facebook became my haven and research arena. What was interesting was that when I would talk to people whose child had a sports related concussion about their experiences, everyone had a different result!
We looked into many concussion facilities around the United States and Canada. When we asked people about the concussion clinic in Michigan, some people would say that it was the best place to go and it worked miracles for their child. Then I would speak to someone who said that Michigan didn’t work at all for their child, but the clinic in Toronto worked for them. Then I would speak to more people about the Toronto clinic and those people said Toronto did nothing for their child, but the Boston, or Pittsburgh or some other clinic at some other location, worked for their child. I got all different answers from all different people about Michigan, Boston, Pittsburgh and Toronto, etc. What we came to learn is that all of the clinics are good. It just depended on the severity of the concussion that the child had incurred and if they responded to the type of treatment that was being administered at that location.
The doctors couldn’t tell us what to do, as they didn’t know what was going to work. Every doctor had a different theory and a different protocol to follow. So we decided that we would continue to go to all of the doctors, try all of the different techniques that everyone was using, and hope that they would work. As time passed, we continued with the ones that worked, and eliminated those that we felt weren’t having any beneficial effect. We continued with the drugs and over time, eliminated those that were having limited or no effect.
We finally started to see some improvement during the fourth year of her ordeal. We are hoping that as time goes by, Jenna will continue to improve!
Jenna’s story is amazing Gayle, and so is yours. She is lucky to have such a great mom and dad who moved heaven and earth to get her the best reatment possible.
Thank you so much Helen! She has gone through so much and is determined to bring awareness out and help others!!!!