For the second edition of Patients (IM)PROVED, we spoke with Valerie, Dr. Burger’s UNiD patient at University Of Colorado Hospital. She has Achondroplastic Dwarfism, a condition that often leads to spine problems and the need for correctional surgery. After ignoring her pain and numbness for two years, Valerie decided to contact Little People of America for advice and was eventually referred to Dr. Burger.

Throughout her recovery, Valerie has remained in high spirits and feels good about her decision to receive UNiD surgery. Her advice to others was this: don’t ignore any symptoms and see a doctor immediately before your condition worsens. You can learn more about Valerie’s inspiring story and road to recovery below.

 

When did you first start to feel symptoms that affected your mobility, and how bad did it get before you made the decision to go through with surgery?

It started in 2013. I had hip pain and I was getting numbness in the leg, and then my knee started giving out over a period of time. I was still too stubborn about having anybody look at anything because I swore I’d never have back surgery. I was like that for two years, but I was struggling with my balance and so I started to walk with the cane. As it worsened, I realized that I would have to go through with surgery. I decided to see what Little People of America thought, and they referred me to a physician that told me I was only going to get worse. I wanted a second opinion so I called LPA again and asked for a reference for spinal and ended up with a pediatrician up here in Denver. The pediatrician referred me to Dr. Burger, so I met with her and she also agreed that I was only going to get worse and told me to think it over. I told my family and they were all supportive.

Each day I’m feeling better. Each day I feel improvement but it was a long road to recovery. I was here for a month in the hospital, then I was transferred to my hometown to a nursing home for rehabilitation and I was also there for a month. And then I went back to work and tried to get back into my daily routine. Now I can feel my feet. I’ve got some feeling in my legs and it’s getting better, but it’s not quite there yet. Dr. Burger did tell me that it could take a year before I felt fully happy about the operation, but I’m already glad I had this done. My back is still a little numb because it’s healing but it feels much better than it did. My posture is much better than it was.

 

How has your relationship and rapport been with Dr. Burger, and how’s she been throughout this process for you?

She has been very supportive. I’ve seen Dr. Burger several times since surgery and her and her team have been very supportive and knowledgeable about whatever questions  I have. They gave me their cell number if I ever have a problem. I have plenty of support there.

 “It would really benefit people to look into treatment. there is nothing to fear.”

Now that your operation is complete, what are your goals for the life ahead of you?

We bought a motorhome, so I’d like to be to the point where I can walk and enjoy fishing, camping, boating, and doing all the things we used to do. Right now I just don’t go because it’s just more trouble than it’s worth. To drag everything along you need a wheelchair and a walker and all that. But I don’t want to get off of those pieces until I feel really comfortable. I don’t want to fall and wreck all that’s been done.

 

Can you tell me about the support that you’ve had throughout this process?

I’ve had my husband of 36 years helping me and I have two sons. Sadly enough, one of them passed away while I was in the hospital up here. He passed away of sleep apnea and he was 31. My other son is 35 and doing well. They are also achondroplastic dwarfs.

 

Are spine issues common with your particular type of dwarfism?

Very common. You’re supposed to keep track of your children throughout the years and have them checked frequently so you don’t wait until it’s so late that it becomes a severe problem like it did for me. I’m sure I waited too long.

 

Do you have any other helpful advice for other people who might be in a similar situation?

I’d say get your back checked early when you have back pain, especially if you have these kind of issues in your family. You know it’s better to be safe than sorry.

 

Can you speak at all about the UNiD technology that was used on you?

I think with all the technology they have for the spine and with this new process, the rods are bent according to the X-rays are on your spine. They are customized to you and they fit instantly, rather than having the doctors wasting time during surgery trying to bend them. These new rods won’t deteriorate as much. It would behoove people to look into it and not fear so much as in the past. Dr. Burger explained that the rod was already bent and fixed to snap into place. I was saying it’s like a puzzle where everything just fits together.