I Waited 4 Decades to Get Diagnosed


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I was only 10 years old, and I already hated my life! I woke up in so much pain again that it felt like my legs were literally trying to tear themselves off of me. My mom had taken me to all kinds of doctors, and they all pretty much said the same thing, it was all in my head to get attention, or it was just growing pains, and it should stop after puberty.

My mom didn’t know what to do so she listened to the doctor’s and took me home. They told her to rub Ben Gay on my legs if it got really bad and put a pair of tights on me afterward so I wouldn’t get it on my hands and rub it in my eyes! They were the doctors, so my mother believed them and that night when I woke up crying from the pain, my mother came in with my new tights and a tube of cream that really smelled bad! She rubbed it all over both of my legs and then made me put the tights on, but it started burning, and I started crying, but my mom just told me to get my tights on that the cream wouldn’t burn me. It just tingles to let you know that it’s working!

She also told me to stop all that racket and get back to bed. I tried just to cry quietly as I could because now my legs were on fire! Eventually, I cried myself back to sleep as I had done so many times before. I thought I would outgrow these terrible pains in my legs. I mean the doctors said they were growing pains or a child seeking attention, right? I never thought that they were going to get worse and move into my back and my feet and become constant pain that I was going to have to live with the rest of my life.

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For 20 years of my life, I was told that I suffered from chronic pain, but not one doctor has ever been able to tell me what is wrong with my legs and I am 49 years old! So, I am certain that it is no longer growing pains! My legs hurt every day and all the doctors could do for me was give me pain management pain pills, but without a clear diagnosis, I was very limited on what I could have done to help me with my pain.

My PCP referred me to a Pain MGmt. Specialist. He told me that in order to see what was wrong we would have to run a number of tests. We ran a Large nerve damage test, a small nerve damage test, and an entire back MRI. Once these test results were in, we should have some answers. I was diagnosed with degenerative disc disease, I have a herniated disc, and I have arthritis in lower back and my neck. And after my PCP took a look at the MRI’s, he diagnosed me with “Fibromyalgia.” I did have nerve damage in my back and my lower legs and in my feet.

The nerves in my feet were too swollen to do anything for them, but we still tried using an injection in the padding just below my toes. It had absolutely no effect, and it didn’t even help with the swelling! So, I was just stuck in this cycle of pain medication and terrible side effects. I was always constipated and at first taking fiber supplements and increasing fiber in my diet helped me a lot, but eventually, I wound up being diagnosed with Gastroparesis. I had to change my entire diet, or my stomach would become so bloated that I had a hard time breathing and it was painful.
Eventually, as luck would have it, I found the help and hope for a better life! It’s hard not to be depressed when everything you used to be is taken away from you, and you have no hope of it ever getting better. I found hope, and I was so excited that I called my husband at work and through my happy tears I managed to explain to him what I had found!

I had found what I thought was a new surgery to help people with my issues! It was a “Spinal Cord Stimulation” “(DC)” surgery with a spinal implant that goes up and one that goes down, and they also implant a rechargeable battery for the system. The whole process is really amazing! These tiny pieces are attached to the nerves on each side of the spine, and it stimulates the nerves that have been damaged once it does that it keeps it from sending pain signals to the brain.

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I called my pain management doctor right away and made an appointment for me to discuss this option for me because the side effects were getting worse. My migraines were becoming almost a daily issue, and they were horrible. I couldn’t eat, see, sleep, and I was vomiting a lot. This surgery was my great white hope! My pain management doctor agreed with me and set up an appointment with the surgeon he uses for this procedure to see if I am a good candidate to have the surgery. I was really praying that I was able to have this surgery done. I had read that some people experienced between 70 to 90% pain relief after they had this surgery with no side effects!

I didn’t understand why I hadn’t heard of this surgery before, so I did some more research on this surgery, and I found out that it had been around about 10yrs, but insurance companies wouldn’t pay for the surgery. I was lucky they had just begun to pay for this surgery about 2yrs ago. I finally had my appointment with the surgeon after looking at all my MRI’s he told me that this surgery was the only one he would recommend that I have. I was extremely happy to say they could get me in to have the surgery done in two weeks!

However, I found out that even with my insurance it was going to cost us $1500 and we wouldn’t have that much money for at least a couple of months. I cried like a baby when I found out that I would have to wait for months before I could have the surgery. I just felt like I had waited so long for something to change for a better life. My husband got the money within a month, and I was scheduled to get the procedure done. I was surprised it was only an overnight procedure.

After I got home, I was pretty sore, and I had no idea if the procedure was working or not. It took about 3 months before I got the full effects and I am happy to say my pain level was dropped by at least 80%! It’s still strange every time I have to attach the magnet to the battery just under my skin to recharge it, and I am sure it will always be a little strange to me, but I have cut out 2 major narcotics off my lists of medications, and I couldn’t be happier! For me, this surgery was an answer to my prayers. I can’t imagine my life without it!

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