It took much too long to get a diagnosis for my daughter. In the end we had a diagnosis but it was too late to be of any significant help for her.
My daughter suffered from leg and back pain since she was fairly young. These were described as numbness and tingling in her legs. No one could find a reason for this. Do doctors just not want to admit when they have exhausted possible diagnoses? I have more respect for a doctor when he can do just this. It saves valuable time.
Initially, she was treated for flat feet by three different orthopedists (at different times). We were given a prescription for orthopedic shoes and given the names of two shoe stores where we could find the shoes. These were some of the ugliest shoes you can imagine and my daughter hated them. Perhaps that fact obscured what was really happening. In my case, seeing flat feet made me believe what these doctors were saying. after all, I could see it with my own two eyes.
The orthopedic shoes did seem to be of benefit for a year or so. When she started complaining of pain again, the doctor put her in a hard, plaster cast for six weeks. This process was repeated two or three times. She had to stay on crutches, each time, for the six weeks and then another two weeks until her leg muscles were built back up. She became amazing on crutches and learned to keep up with her friends.
Eventually we were referred to a pediatric orthopedist, at a hospital 50 miles away. He was convinced that putting inserts into her shoes would fix the problem. Inserts were added into her shoes. These inserts were made especially for her and were hard plastic. We spent the next few weeks, going back and forth, between home and the children’s hospital for fittings, before the inserts were finally in her shoes. We saw this orthopedist on and off for two years. This was a 50-mile trip and required that she be taken out of school, as I was taken out of work.
This did not help in the least and a referral was give to see a pediatric neurologist at the same children’s hospital. Once again, I repeated her history, my history, her dad’s history, the grandparents’ history etc. This young doctor decided we needed to see a neurosurgeon. Before seeking out his expertise, magnetic resonance imaging had to be taken, of her back, the first of many.
With all his expertise, he could find no problem after reviewing the magnetic resonance imaging and his clinical examination.
Back to the neurologist, who in his great wisdom, decided she was depressed. Many times, I wondered if this label would have been given to a man. Not that men don’t get depressed, they do, but women tend to have this diagnosis as a catchall when a doctor cannot find a problem. That is why it is recommended to always consult with the best medical professionals such as Austin spine care. Spine Austin can care for any type of back and neck problem.
Our pediatrician was our next stop and he referred us to a different children’s hospital. Again, she went for magnetic resonance imaging for a total of three. Each times. The neurosurgeon would receive a copy; he would want to send her for “special cuts.”
Eventually he was ready to examine her. Our attitude was slightly hopeful but yet defeated, afraid it was going to me another dead end.
The same family history was taken. I could probably spout this in my sleep and am sure I have. When finding out my husband has a form of spinal bifida, the doctor immediately knew she had a tethered spinal cord, showing this to us on the magnetic resonance imaging and offered surgery.My daughter and I looked at each other and both of us opted for the surgery. Operating on the spinal cord is serious business. Weighed against all we had gone through to get here, we still wanted to proceed. Certainly a scary business.
The doctor outlined the risks, benefits and complications of the surgery. Also, he made known that this should have been caught years before; as a result, he could not promise that this operation would fix the problem.
Unfortunately, it did not fully help.
Back on the treadmill for help we went. First to a new pediatric neurologist and after a few visits with him, he at least admitted he had no suggestions, other than to take my daughter to a pain clinic. Can you imagine taking your 14-year-old to a pain clinic?
She will live with back pain for the rest of her life and have the need for periodic nerve blocks.
Spinal bifida is usually thought of in the terms of an opening in the skin, a disruption to the spinal cord, with the person such inflicted being on crutches. I am here to tell you differently.