Ill never forget that day when I was on my way to our family trip vacation and we decided to stop for the night and get some rest at a hotel in Zacatecas Mexico . Three of my four daughters came with us, my two 13 year old twins and my other little girl, she is 1. In the morning after breakfast they wanted to go to the pool , so they put their bathing suit on and came with me . I was staring at one of my twin daughters Abril , there was something really strange in her body , I saw that one of her shoulders was higher than the other(uneven shoulders) and that one of her hips was not in the right place . Her right hip was elevated . I didn’t like the way it looked, so I asked my husband to take a look at it and tell me if he was seeing the same thing I was. And he said:- No. and I said :- Look at her again . And he said “ I don’t see anything strange”.
On the next day, he talked to me and told me that he was really worried and that my question got him thinking that maybe abril did have a problem; he said he’d notice that when abril was standing up she was always bending one of her legs ( she was leaning to one side). So I started thinking about abril when she was a baby. The day that she started to crawl and the day she tried to walk or even the day she started running, she ducked like her head was to heavy for her and she was trying to stand still. I don’t know why I didn’t paid attention to that, maybe because abril was always a really healthy child, besides her pediatrician didn’t mention anything about it.
That week of vacation I couldn’t stop thinking why my child’s body was taking that shape, until then I thought that she had her father’s complexion. He is really tall and thin. but that wasn’t enough explanation for all the other things that I started noticing in abril’s body .for example why did she have her waist so uneven (now I know that this illness is called Lordosis).but at that time I didn’t knew what was going on, there where a lot of details that I started to remember that I didn’t paid attention maybe because I wasn’t aware of their importance.
When we came back of our trip, the first thing I did was make an appointment with the doctor. As a regular procedure you have to go to a general doctor first. I remember that I was the first one that came in and I told the doctor everything I was seeing in abril’s body. I didn’t want her to listen because if it wasn’t something serious I didn’t wanted to make her feel bad because maybe I wasn’t right so he listen to me and then he called abril in . He examined her and gave us a pass to go see the trauma surgeon. The doctor diagnosis said:- Probably Scoliosis . I left the medical center really worried , I didn’t knew what scoliosis meant , I wasn’t even familiar to the word but i didn’t had a good feeling about it . So I talked to my husband and he said that we should wait for the other diagnosis. The day of the appointment arrived and we waited for the other doctor for more than an hour , abril was impatient, anxious and upset . She didn’t understand why she had to see a doctor if she was feeling fine. Well the doctor didn’t make it, so we left and my husband decided to make another appointment but this time with a t that he knew and on the next day the doctor confirmed the first diagnosis. Which was: IDIOPATHIC SCOLIOSIS AND left leg shortening.
The first thing we needed to do was find out what type of illness Scoliosis was and what kind of treatments where good for Abril . The doctor started explaining and I was shocked doing my best to pay attention to what he was saying. He said that in the future there was a chance that they had to do surgery, but the first thing abril needed was a Milwaukee corset. When we left abril was devastated, she couldn’t stop crying and we where worried. The doctor sent us with a physiotherapist and gave us the address of where we could find abrils corset. It was Friday night so there was no way to get an appointment with the physiotherapist and the orthotist changed his address. On the next day (Saturday) we looked for him and we found him in this neglected warehouse with weird devices and a lot of shoes. We talked to him and told him about Abril’s condition. I told him that it was urgent for us to have that corset .He gave us a catalog with a lot of corset samples so we told him to come at our house on the next day and take abrils measurements for the corset, he said that he needed to stretch abrils arms and legs so the measurements would come up right . I didn’t understood that well, but I told him to come Sunday anyway. When we arrived home we showed abril the corset catalog, she was upset and said that she would never wear the Milwaukee corset. she wanted the Bostoncorset , she was really sad and I couldn’t force her to do something that she didn’t wanted to do , so in the middle of the day I called the ortotist and cancelled the appointment.
On Monday we went with the physiotherapist, she was this kind retired doctor, she stills run her own medical center and she tried to explain some other things about scoliosis, she told us that there was a maximum level of spine curvature and by passing that level there was a chance they had to do surgery. Abril was really close to that level, the X-rays showed 38* and by that moment I wasn’t aware of the advantages and disadvantages of a surgery. The only thing I knew was that I wanted to stop my Childs body deformation.
She also told us that the treatment would last for 3 or 4 years and we thought it was a really long time, I just couldn’t stop thinking that she was in her second year of high school and that she would have to use that corset her entire college time .
We were devastated, confused, and desperate, for us there was no way out so we started looking in the phone book and on the internet, with people that we knew, searching for names, doctors. If there was a chance that my daughter had to be in surgery, we wanted the best doctor for her. The Physiotherapist asked me if I had bought abrils corset already, I said no and that we were still looking for somebody to make it. she asked us if we have talked to Engineer caudillo and I told her that our first doctor gave us somebody else’s phone number and address, she specifically recommended us to go see him, she told us that he was the best in that area and that he knew a lot of people, he also made a conference with orthotists last year and they talked about scoliosis. That was a light of hope in our path. We met engineer caudillo and he introduced us to Dr. Miguel Gomez that was a way of learning more about the illness but most of all a chance to put my daughter in good hands.
Today I am writing in this way and I don’t believe it, I feel confident and calm, abril has been using her corset for 3 years now. But a year ago she has been using it just during the nights. Her recovery has been amazing; we achieved to reduce the 2 curves she had. The thoracic was reduced 50% and the lumbar one a little bit less. But Dr Gomez always tells me that what matters is the balance, more than the curves. Sometimes I don’t understand everything about this, because every doctor has his own way to diagnose, but I trust Dr. Gomez Experience. I remember that at the beginning the only thing that worried me was to stop that curve in abrils spine , but with all the attention and help we’ve received abril has a better posture now , she is in a better mood . I feel so lucky because on this path I found wonderful people, very professional in their job and wiling to help us in any way they could with their knowledge and experience. Not everyone has the same luck. I remember that a year before abril was diagnosed I took her to the doctor because she wasn’t feeling good, she wasn’t able to stand up by herself, she was complaining about back & neck pains. it was very rare and unusual , so we went to the doctor and on our way I remembered that she had this kind of pain before , twice to be more specific so I told the doctor but unfortunately he didn’t have the knowledge to diagnose the symptoms sooner . He just gave abril some pain killers for Torticollis. Now I know that those were scoliosis symptoms. Maybe the doctor didn’t took x-rays because he didn’t found them necessary, he could’ve find out abrils condition a year before, and I was disappointed on the medical service.
Abril used 5 corsets, the first one was the Milwaukee type, she had it on for 3 months, but it wasn’t that helpful for reducing curves, however it was helpful for her in an emotional kind of way .the rest of the corsets were made with the CAD CAM technique, they were more effective and less disturbing and for the same reason they gave her a chance to move better. This corsets were made by Dr. Gomez , with this type of corsets abril was having a normal life , the only different thing was that she had to use some special clothes, but she was fine with that , she is a very even tempered girl . She does her exercise routine every single day, she swims 3 times a week and she always follows the orthotist instructions (when it comes to the way of using the corset). The only day she didn’t wear the corset was on her 15 Th birthday but she wore it at night when we got home. Sometimes in the morning she wokes up with some bruises in her body because of the pressure that the corset makes in her body and I ask her If it hurts and she says that when she falls asleep she doesn’t feel anything .
My job does not allow me to be with her , but I try really hard not to neglect her in any moment , I make sure that she is doing her exercises , but she doesn’t need my supervision in that , she knows that is her responsibility and she is always doing them , there is no need for me to tell her . The first months were really hard because I had to leave a lot of my regular activities so I could take abril to her treatment, sometimes we had to visit the doctor 3 times during the same day, because the corset was bothering her in one hip. But it was necessary for us to do it so the corset would fit perfectly and she could be as comfortable as possible using it everyday. We’ve tried to create a good environment for her, as soon as we knew about her illness, we talked to our other girls and explained them that her sister was going to need a lot of love and patience .I also told her cousins, her uncles and aunts that she was going to use the corset for a period of time and explained them everything about scoliosis .we also made her a big blanket with encouraging messages from all the people that love her, her family and friends and We made her a special desk so she could fit perfectly with the Milwaukee corset, but whenever she got the CAD CAM corset she didn’t need it anymore.
She also found support in her teachers and classmates, one of her teachers asked her to prepare a class about scoliosis because she was absent a couple of days so that way he would take off the absences. She was more than happy to make it. She searched on the internet and found a lot of information and she made a presentation, she wanted everyone to know everything about scoliosis, because some of her classmates could have it without knowing they do. She also likes to go to orthotics and prostetics conferences in Mexico.
She has been to 2 in Guadalajara and one in Aguascalientes. We also went and visit Dr.Gomez in Houston , she always comes back with her hopes up , maybe because she knows that they are very professional . I think that all these helped her take her illness and her treatment in a better way , she has always been a very good student . her grades were down just when she started treatment but after that she got the first place in class .This year’s vacation abril finally had the chance to swim in the ocean and put her feet in the sand without having the corset on, the corset just make her sweat to much. she still needs to wear special shoes for her left foot , right now she is not using the corset so she gets the chance to dress like a normal girl and that makes her feel better. I am very confident that in the future our daughter would not have more problems. But if something happens we know that we can count on a lot of professionals that are willing to help us.
It’s necessary to let everyone know that there is no much information about this illness, but Dr Gomez website can provide you with a lot of valuable information.
Our phone number in Mexico is 52 871 725 4861 just in case someone is interested in contacting us.
Ms. Rosario Varela