My Quest For A Milwaukee Brace... Chapter 1

A couple of years ago I posted a story about getting orthodontic braces and another story about getting leg braces. All of those braces were necessary because of a serious accident in 1998.

In 2010 I started having severe pain in my neck and back. The pain in those areas is the result of the same accident. I had two incomplete fractures in my spine, C6 and L1. One was treated and the other was not. Along with the spinal fractures there was lesser damage at three other locations. All of those locations have developed arthritis.

Add to those injuries a broken right jaw, a torn left rotator cuff, and a lot of soft tissue and nerve damage to my right arm and hand. All of those injuries have been repaired and up until a few years ago I was not bothered by them too much.

As the years passed I got more and more uncomfortable due to the arthritis and getting older I guess. The right arm and hand had always been a source of pain but the left shoulder that had never bothered me after it was repaired, started hurting with an intensity and regularity that I had never experienced before. With all of those places hurting, life can get miserable.

All of my medical care is through the Veterans Administration Hospital. They try to keep me as comfortable as they can with pills but there is only so much pain medication I can tolerate. The combination of NSAID pain medication and Prednisone steroids caused a bleeding ulcer that almost killed me. That was when I decided to find an alternate method for pain management.

The VA offers a weekly class in alternative pain treatment that I attended for a year. I learned several alternative pain treatment methods but they only work under certain conditions and the relief can be limited. When the pain reaches a level that you can think of nothing else but the pain, it is time to take the strongest pain medication you have.

In some cases there is nothing you can do to prevent the pain. In others you can wear a brace, meditate, or do exercises to avoid discomfort.

I never know what part of me is going to be uncomfortable from day to day. My jaw may hurt, my shoulder, my back, arm, neck or whatever. Sometimes I don’t hurt at all. Whatever hurts that day I call “Douleur du jour”, meaning “Pain of the Day”.

I had researched back and neck braces but thought that the type of braces available would be miserably hot and uncomfortable in the summer. They all had vast amounts of plastic that encapsulated the body. They allowed no back or neck movement once in the brace strapped tight. After a lot of research I discovered that a hand full of adults had benefited from a Milwaukee Brace.

My only exposure to a Milwaukee was being in the same Sunday School class as a little girl that wore one. That was probably 55 years ago. I’d also seen photos of them on polio kids but never thought much about them.

The Milwaukee brace seemed to be the answer for pain relief and reduction of the amount of narcotic pain meds I’d have to take. It would only help neck and back pain but that was a big part of my discomfort.

The Milwaukee brace has an open design with plenty of air flow. Skin contact is only at the girdle that supports the metal super-structure and what ever pads that are necessary. The Milwaukee is also somewhat of an “active” brace that discourages muscle atrophy. You must stretch and move within the brace to remain comfortable.

I decided to talk to my doctor about the advantages of the Milwaukee brace for pain management. Since the brace was designed exclusively for Scoliosis and Kyphosis patients that were still growing, I had to be very persuasive and research every detail I could find on the Milwaukee.

I started here at the Experience Project by contacting some of the adults that benefited from the brace. Kypho was very helpful. He referred me to other adults that used the brace. I still correspond with some of them.

The first conversation was with my primary care physician at the Veterans Hospital. She liked the idea but she could only recommend the brace. She referred me to the Occupational Therapy department. They liked the idea but said that I needed to see the Physical Therapy clinic. The Physical Therapist had never seen or even heard of a Milwaukee brace. I was prepared and had a photo of a brace that was configured like I thought would work best.

I told the entire Physical Therapy department how the brace worked and all of the advantages of it over the traditional “clam shell” brace. To be fair, the Physical Therapy department at the Veterans Hospital never comes in contact with kids with scoliosis so they would never be exposed to the brace. They all agreed that the brace was a good idea but couldn’t write the prescription. They wrote a recommendation and told me I needed to talk to the orthopedic clinic.

I was disappointed because I was told that they could write the prescription. Now I had to wait for another appointment. So far the process had taken about sixteen months from when I first talked to my doctor about the brace.

It took another five months to see the orthopedic doctor. He said that he had never had any experience with the brace and told me that I needed to talk to the doctors in the pain management clinic. The nurse wrote another recommendation. Disappointed again, I tried to arrange an appointment for the pain clinic but was told I’d need my primary care doctor write a consult request.

It took another three months to see the pain clinic doctor. I had never seen her before so she must have been new. I told her what I thought I needed and why. She said, “Absolutely not! A brace is the last thing you need” as she typed in a prescription for more pain pills.

Disappointed, frustrated, and pissed, I walked to the prosthetics clinic and had a talk with the head of the department. I had known him for about eight years. He’s the guy that makes sure I have whatever I need to keep walking. Over the years he had arranged four pairs of long leg braces, high quality crutches, and several pairs of boots that were modified to accept leg braces. He knew me and trusted me.

I thanked him for his help in the past then told him what had happened in the pain clinic. At that point all I needed to get the brace approved was a signature from the head of the pain clinic. He said he knew me well enough to trust that I knew what I was talking about and that he would take care of it. He would get the signature from the head doctor.

A few days later he emailed me that I could get my brace. The quest to get the brace started January 2010. I finally got the approval in December of 2011. It was a long long battle but I finally won. The next step was finding someone to build it.

I should mention that although it took a long time for me to see the different clinics, the VA Hospital gives me first class care when there is an emergency.  They saved my life when I had the bleeding ulcer.  Not long after I arrived at the emergency room I was having blood pumped in to me to keep me alive.  I stayed in Intensive Care for five days and could not have gotten better treatment anywhere.


End of Chapter 1

steel4jak steel4jak
61-65, M
May 11, 2012