As many of my friends and family know I've suffered from chronic pain for over 5 years now. I have Intercostal Neuralgia. Intercostal meaning between the ribs and Neuralgia meaning pain in the distribution of nerve/nerves. For me it started out as a small pain, that bothered me and hurt to lie down on that side (right). After being tested for everything under the sun and being given lots of drugs to try, and even had surgery, no one had any answers and my doctor even tried to convince me it was all in my head... I was finally referred to a doctor to get injections or nerve blocks. The first one helped a lot. I could finally get out of the house and do something besides go to appointments. However, it didn't last long. Every time I called to try and set up another one, the secretary seemed to be busy and I went to voice mail and she would never call me back. I finally got a couple more, but they didn't help at all. So I stopped calling. My pain was getting far worse and I was having difficulty breathing. Apparently, my lungs would only expand so far before irritating the nerves, so any exertion would leave me gasping for breath. I got to the point that I mainly used a wheelchair to get around. At this point I could actually describe the pain. It feels like I have been impaled by a pipe, not the sharpness of being impaled, but just the feeling of it being there and that no one can pull it out, from the front of my rib cage to the back.
After getting a new primary doctor. I asked to see a neurosurgeon. Before going, I had to have another MRI of my back. He looked at the MRI and said I had a nodule on my spine and that he could do surgery to remove it, put in a spine stimulator implant (pulses to interfere with nerves before they reach the brain) in me, or do both. We opted to do both and came back a week later for him to come in and say he wouldn't do surgery at all. I could no longer keep my composure as tears ran down my face. He said we should get a second opinion and if someone else says they'll do it, then he would go ahead and do the surgery. (The second opinion told me that the nodule was hemangiomas of the spine and it doesn't hurt, so no surgery.) The surgeon, after seeing me crying, then set me up with my pain management doctor. He's a great guy and delivers pain every time I see him. I get an epidural in my back and intercostal nerve blocks in my chest. The epidural isn't so bad, but those intercostal nerve blocks are intense. First I get lidocaine injection above the injured nerve and then he sticks the needle straight into the nerve. I can't help but kick as the nerve is being injected. It's pure torture! And yet I go back every 3 months for more... At first it would lower the pain, but gradually it's main purpose has been to help me breathe a little easier, and now it's not doing much at all.
Last March (2017) I asked for another MRI because the pain had become worse. It showed even more hemangiomas in the spine. I did a lot of research and found that because hemangiomas aren't natural to bones, it's considered a tumor (not cancerous of course) and that radiation treatment could shrink them, thus relieving the nerves. I talked with my doctor who sent me to a Cyberknife facility. They were very nice and friendly and couldn't believe I was dealing with this pain for such a long time. I thought my prayers had been answered, but when the doctor came in, he said my insurance wouldn't cover it because they say it is experimental for hemangiomas in the spine. He did try to do his best to write that it was necessary for the treatment, but they denied it and said there were other treatments to try first. I tried to appeal the decision, but they didn't even acknowledge that I sent one. I tried a second time and still nothing... Talking with their nurse line I asked if they knew what treatment I was to try first. Apparently surgery! Back to the drawing board.
Over several months I did research for surgery. I contacted lots of the laser surgery sites, sent in my MRI's to be told over and over that they couldn't help me, except to put in the spine stimulator or that my insurance doesn't cover their hospital. After much more research I found a place that would do it and my insurance would cover. It was in Los Angeles, CA at Cedars Sinai. I live in Kansas. This would be a long trip by car, very expensive if flying, plus hotel room, eating out, and of course the surgery that I would have to get approved first before even going out there. I did more research and found others that had the hemangiomas removed from the spine with the same doctor there, they were really happy with the results, until 3 months later the pain was back! This ended my research for surgery.
Last week (March 2018) I found an ad about neuropathy pain. I usually just scan them because they usually only help with diabetes neuropathy, shooting pain, tingling, etc. in hands and feet. This one however, talked about more including migraines, so I clicked on the ad. The more I read it the more it sounded like for me. It even included 2 days of therapy for $59, plus consultation, x-rays, etc. and if they don't think the treatment will work for you they give you back your $59. The first day went great! The doctor said he could help me. The staff was really friendly. The therapy includes cold laser (it's still hot) and spinal decompression. I left with an appointment for the next day. The second day was not quite as great. He went over my x-rays, explained more things that were going on with my spine and explained how much the therapy would help me. Next came the cost. The finance lady came in and talked about everything that therapy entails. It would be 24 days of treatment, including more x-rays to see the improvement on the 2nd to the last day. I asked about insurance and was told that since it's still considered experimental our insurance wouldn't cover it. However, for that they do take a few thousand dollars off, the total left is $4995 (asking for more to cover the fees for this). That would be far less than any of the other offers I have seen.
The pain keeps me from enjoying life, going to a lot of events with my husband and children, and even simple chores at home. I really believe God was directing me to this and it will help me, but we really need help with the costs. We have spent thousands of dollars on tests, doctor appointments, surgery, and medicine. Not to mention helping our son in college and a daughter getting ready to start college. Any help would be appreciated.