Melanie's Story

Melanie was a very happy kid with a smile on her face most of the day. She was into sports,dance, and loved school. She made straight A's and was also very healthy other than a cold or flu like everyone else.

In December 2001, she fractured her foot while running and slipped on the kitchen tile. The orthopedic doctor put her in a boot cast and told us to come back in six weeks. During the six weeks, her foot was hurting and I would give her Tylenol or Motrin everyday. About a week before her appointment, I called and asked if she could come in early because I heard that she should not still be in pain. When we went, the doctor did x-rays, said her bone was healed and he had no idea why she was in pain. He suggested to keep giving her Tylenol and keep her in in the boot cast for another few weeks.

We did what he suggested and one day she was swimming at an aquatic center with her friends. This was in February about two months after her foot fracture. While she was going down the slide, she banged her knee on the side of the slide. Now her knee and her foot were hurting; her pain level was about a four.

During this time, I also noticed little things that made me think something else was wrong with her. For an example, she would fall and get a skinned knee and go out of her mind with the pain when before, she would get hurt and not even cry. Or her brother and sister would be playing around and hit her not even that hard and she would say how bad it hurt her. However, I was right there and know it couldn't hurt that bad.

Anyway, about two days after she hit her knee on the pool, her knee was still hurting so I took her to another orthopedic to get a second opinion on her foot and to find out why her knee was still hurting. He took x-rays of both her foot and knee and then told us she had a small fracture in her knee so she'd have to wear a velcro wrap brace for about six weeks. He also told us that the foot x-ray was normal and he had no idea why she was still in pain.

At this time, I had never heard of RSD...obviously, the doctor didn't either. He told us that she should still wear her boot cast on her foot and the knee brace on her leg. Little did I know that she had RSD and assistive braces like crutches and casts would make RSD worse. We did what he said and she continued with the pain. The first week of April (four months after the two accidents), her foot pain was gone, but her knee still hurt about a two on the pain scale.

She continued to follow the doctor's instructions until one day, April 6th, when she was walking down the hallway and bumped her hand on the wall. It wasn't even that hard, just a normal bump while walking around the corner. She came to me and said that that her hand hurt really badly, a six on the pain scale. I asked her about the accident and couldn't understand why she had pain. The pain continued so this time I was very concerned and knew something was wrong with her.

We went again to the orthopedic who took x-rays and said that there was no fracture and that he had no idea why she still had pain. I expressed my concerns about how she was always in pain since December and when she would get hurt, the injury wouldn't match the amount of pain and now the pain in her hand wasn't going away. Plus, she still had some pain in her knee, although none in her foot anymore. He said," I don't know what's wrong with her. Just tell your daughter to stop being so self abusive!" I was so angry and knew that I needed to find out what was wrong.

I went to our primary care doctor and he was also very concerned about Melanie. He didn't know what was wrong, but knew that her symptoms weren't normal. He gave a referral to an orthopedic specialist in Phoenix, thinking that she might have some form of brittle bone disease because of her two broken bones. When we were at the orthopedic (this was now at the end of April), Melanie's pain was just in her hand, but it was pretty bad and the Motrin, nor the Lortab helped at all. The doctor looked through all her medical records and told us that her hand did not have any brittle bone disease. He then mentioned the possibility of RSD and referred her to a neurologist.

On May 6th, we went to the neurologist and he confirmed that Melanie had RSD. This was now five months of pain in different areas. He decided to treat it with 10mg of Doxepin which became the only treatment he did. The pain in her hand gradually started to get better and by the first week of June, it was about a two on the pain scale. Although her pain was better, she was still not herself. Each time she would get a little bump or scratch, it would hurt a lot worse than it should have. She also had no energy and was just not acting like her normal self.

On June 9th, she woke up and complained of terrible pain in her upper back about the size of her fist and the pain was constant. We made an appointment with the neurologist and he decided that this pain wasn't RSD. From that day on for two and a half months, he did test after test, consisting of MRIs, CT scans, blood tests, and x-rays. Her pain continued to grow worse and when nothing showed up on the tests, the pain was decided to be RSD. The doctor told me that he didn't know what to do and didn't know what her pain was from. He said," I don't believe this pain is RSD."

He sent us home with an appointment to come back in a month. I wanted answers because at this time I didn't believe that he knew what he was talking about and thought that the pain was not from RSD. An appointment was made with another neurologist. In the mean time, I spent days on the Internet, talked to research centers on the phone, and even talked to several doctors in other cities to see if they could help my daughter.

The new neurologist told us that her pain was from RSD which was also the information that I had gotten from the research centers who advised me not to wait in getting her proper treatment. I had faith that this doctor was going to help us. First she changed her medicine and put her on Neurontin, Elavil and muscle relaxants and did an EKG which showed that Melanie was constantly having muscle spasms.

Even with all the medicine, her pain was still increasing and was up to an eight. The RSD covered her entire upper back. She went to school, came home and laid down. She couldn't play sports, do anything with her friends, and was miserable. She also did physical therapy three times a week. It was very hard, but she wanted to get rid of the pain. By this time, it had been nine months since her first pain when she broke her foot.

The neurologist told me to find another specialist because she couldn't help her. We were surprised that this doctor was not convinced that Melanie had any pain at all and she was probably just trying to get attention! Later, I found out that this happens to a lot of children in chronic pain because the doctors never believe them. My daughter's whole life changed, there was no reason to make up having pain.

One of the research centers I had called was trying to find a doctor in this state gave me a lot of info and told me that Melanie needed to be on the right medication and needed to have nerve blocks to start getting better.

During the next few weeks of October, Melanie's pain went up to a ten. She would just lay there and cry and couldn't even attend school anymore. She had really bad nocturnal episodes where the pain was off the charts and she would scream and cry herself to sleep. All she could do was lay on the couch in pain. She would never smile any more and cried many times. We were beside ourselves because she was still taking all the medicines and nothing was working.

I woke up one day, sick and tired of my daughter being in this agony, so I increased our credit card and was planning on flying to Florida to Dr. Hooshmand (www.rsdrx.com) who had a lot of experience in RSD. I knew from talking to the research center that he could help Melanie. The day I was going to call for an appointment, I found a California RSD website which we live close to.

I called the number and talked to a lady who told me about Norma and Stephanie in San Diego who was now in complete remission. She gave me Norma's phone number and I called her.She told me that Stephanie was now pain free after several months of agony and gave me the number of the two doctors who had helped Stephanie. I was so happy to have a success story and know that a doctor who could help was only six hours away, so I decided to wait on going to the doctor in Florida and instead chose one of Stephanie's doctors.

The first mistake I made was choosing the wrong one who had a practice in L.A. in pediatric pain management. When we went to him, he told us that he believed that medicine, time, and biofeedback would give Melanie a complete recovery in about 15 months. I trusted and believed what he said. He put her on Trazadone 50 mg, Neurontin, and Clonidine patches. Biofeedback was also prescribed two times a week.

In the following weeks, Melanie's pain grew worse and started spreading down her arms and now covered her entire back. The biofeedback never helped and though Neurontin was increased to 1800 mgs a day, it never helped. Vicodin and morphine were also attempted, but neither even touched her pain. I was always telephoning the doctor because Melanie's pain wasn't getting any better. He told me to give it time and that's all we could do. He wasn't willing to give nerve blocks because of the duration and location of her RSD.

I called Norma and she told me that it was the second doctor that administered the nerve blocks and made Stephanie pain free. The doctor was six hours away in Long Beach, California, but I was willing to do anything for my daughter. I cried on a daily basis to see how she suffered. On December the 18th, I called Dr. Mikhael.

It had been one year since she had fractured her foot. A year of hell.

We were able to get an appointment on December the 23rd. Dr. Mikhael read Melanie's entire RSD history and told us that her pain had spread due to improper treatment. He lowered some of her medication and then the next thing he said was the best thing that I had heard in a long time. He said that he was going to help Melanie but to keep our fingers crossed because time was not on our side.

Dr. Mikhael said that RSD should always be intervened with nerve blocks and proper medicine, but he was hoping that it wasn't too late for that! The pain had to be stopped in order to reverse the nervous system. He decided to do an epidural catheter for seven to ten days due to the location of the RSD and see if it would help. He said that he would put in a different catheter for three to four months if the trial catheter helped her pain a little.

He scheduled an appointment to surgically put this in her back on December 27th, two days after Christmas. Her pain was so bad that she couldn't even enjoy Christmas. On the night before her surgery, I prayed so much. Finally, she had the tube put in and a few hours later, the home health system had the medicine going into the tube.

I couldn't even begin to tell you in words what happened that day. Melanie looked at us and the nurse and said that she was starting to feel less pain. For the first time in a long time, Mel said that it was about an eight on the pain scale. After a few more hours, her pain was a six and she actually had a smile on her face and started to laugh, talk, and smile!

Over the next two days, her pain went down to a two. She was so happy, it was like our daughter had come back to life. She was her old self again even though she had a tube in her back and she had to carry around a pump that weighed about 15 pounds. She was so happy to get rid of that terrible pain. The medicine in the pump was Marcaine, but this was used only as a diagnostic block to see if it would work. The actual block would involve a bigger tube and a mix of Marcaine and Clonidine would be used.

The doctor took out the temporary block and scheduled an appointment on January 20th to surgically put in the second block. While we went home to wait for her surgery, her pain went back to an eight, but the pain in her arms was completely gone. Dr. Mikhael told us that this would happen and that newer pain would go away first which was her arms and then her lower back, and finally her upper back.

On the 20th, her second epidural was placed with the same medications in the pump, but with a bigger tube. We went back home and set up home health care, so they could continue to increase her medicine slowly. Each time that the nurse increased the medicine, her pain would go down a little.

After six weeks, she woke up one day without any pain.

During all this with her pain decreasing, she started attending school and having friends over again. Even though she had her pump and a tube in her back, she was so excited to not be in pain. She was back to everything that she used to do, except for sports and things like that.

By the end of March, the doctor gave orders to decrease her medicine in the pump slowly so that he could take it out. On May 9th, she got the epidural out and continued to have no pain. Within a month, she was off all her oral medicines, she had energy again and started to live a normal life. Her doctor told us that she could continue doing sports, dance, and whatever else she wanted to do. We went through a lot during this time.

When I asked the doctor if she would have gotten better without the block, he said, ""Absolutely not." From my understanding, the difference between this block and others were the medicines. Most doctors use just Marcaine or Lidocaine, but he used a combination of Clonidine and Marcaine.

One thing to remember is Melanie's story and how she suffered for a year. Looking back, if we had found a doctor sooner that had known how to properly treat RSD, then Melanie would have never suffered that long and that much if the pain in her foot or hand had been stopped with a block and other proper medications.

Melanie has now been completely pain-free for six months and has no signs or symptoms of RSD. She has regained her strength and is once again making straight A's in school. She wants to start softball and other sports soon.

She is SO happy!

Theresa

(Theresa and Melanie's phone number is 920-680-6387 and e-mail address is thebaldwins@citlink.net
They said that you are welcome to contact them at any time.)

"Courage is not the absence of fear, but rather the knowledge that something else is more important than fear."Ambrose Redmoon