Thank you so much everyone. Ryon is pretty sure that it is not neurological pain... But I'm not convinced it isn't. He always shows the doctors where the pain is and how it feels. I try my best to allow him to speak for himself at the doctor, but I always clarify to the doctor that we don't know for sure if he is really feeling the pain where he thinks he is, because his injury level is c4.
He has been being treated for neurological pain for over a year now. First gabapentin, then slowly increased the dose, then lyrica and then that dosage maxed out as well. We stayed on the lyrica for over a year, but I finally asked the doctor to take him off of it, because I was paying $75/month for it. The spasticity does increase when the pain increases. The pain never worsens or betters when eating or drinking more or less. The types of food he eats doesn't have any effect. We are from a small town in the northeast corner of Kansas, called Elwood. We are about 40 minutes north of Kansas City. We are right on the Missouri River and receive all of our medical care in St. Joseph, MO. This has just recently caused us problems. When Kansas Medicaid changed a couple years ago... All of the specialist we previously saw in St. Joseph are no longer covered by our new insurance. Medicaid is Ryons secondary, blue cross blue shield primary, but it's easier for the doctors to accept both insurances. We are currently trying to form a new team of doctors at KU med, but the problem with that is that it is an hour south of us and we don't have the most reliable van to get there. But we will make do. We go back to Craig July 10th. Hopefully we can get some help this year. They weren't helpful last year, they acted like it wasn't a big deal, but now it's been 2 years of pain and I have got to get something figured out for him. Whoever asked about my parents being alive... They both are still. I think my dad is anyway, I haven't seen her for 4 years or so. Remember... I moved out when I was 16 and never looked back. > On Jun 2, 2015, at 12:28 AM, Erin Shackelford <[email protected]> wrote: > > I'm not sure if this posted the other day. I didn't know there were rules. My > first message had images... Oops! > > Hello all. I subscribed to this list a while back and very much enjoy getting > the emails and reading the responses. I figured I better introduce myself > instead of lurking in the darkness. > > First off my name is Erin Shackelford, I'm 29 years old, married to my > wonderful husband Bret, we have an 18 month old daughter named Bria. I myself > am not a quadriplegic, but I take care of my little brother who is a c4-c7, > incomplete quad. > > Our journey: We had a pretty rough life growing up. I moved out on my own > when I was 16, was homeless at times, slept in my car at times, have been > working my ass off since I was 16 and dropped out of college after my > freshman year to work even more so that I could get my own place and take > care of my brother, who was 16 at the time. Ok, so I get him through high > school, into college, and after two years, he decided college wasn't for him. > He signed up for the Air Force in 2011, at the age of 21 and was waiting for > his call, to go to boot camp. He went to a party on June 14th, 2011 and dove > into a shallow swimming pool, almost drowned and was taken by ambulance to a > hospital and treated for intoxication and fluid in his lungs. He was sedated > and intubated. After 12 hours, they removed the tubes and asked him if he > wanted a drink. The nurse became frustrated when he wouldn't grab a cup from > her. He informed her that he couldn't move his hands and couldn't feel his > legs. He was rushed off for an MRI... He fractured c4 & c7 and crushed c5 & > c6. His spinal cord was only bruised. After being in the hospital for 2 > weeks, he was transferred by an air ambulance to Craig Specialty Hospital in > Denver, Colorado. > > While at Craig, Ryon had two surgeries on his neck, and rehabbed from June to > October. We are forever thankful for the treatment we received at Craig and > still go back yearly for re-evaluations. > > While I was in Denver with my brother, my husband worked his butt off making > our home accessible for my brother. Ryon came home to an accessible home and > still lives with me to this day. I wouldn't have it any other way. > > I am his only caretaker and it can be quite challenging at times. I no longer > work outside of my home and even managed to care for him throughout my entire > 9 months of pregnancy. In September of last year, when my daughter was 9 > months old, we discovered that she was bilaterally, profoundly deaf. So for > the past 9 months we have been very busy with her. She received bilateral > cochlear implants in February and is now almost 3 months post activation. She > is progressing leaps and bounds. Ryon has luckily remained healthy, for the > most part since my daughter was born, but we have been struggling with a > small issue, which isn't life threatening, but aggravating. He's taken a > backseat during the past 9 months, but things have finally started to slow > down and we have become accustomed to our hectic life. > > Ryon has been having a stomach pain for the past 2 years and it is getting > progressively worse. He's had X-rays, ultrasounds, ct scans, and been treated > for neurological nerve pain. To no avail. It is in his lower right abdomen, > definitely not bladder or kidneys, all of his blood tests come back normal, > he's not septic, his white blood count is normal, it doesn't correlate with > eating, or bowl programs. > > We are at a complete loss for what it is. When I say that he's been dealing > with this for two years, we have seen many doctors and specialist, a > neurosurgeon, urologist, gi... Just about anyone you can think of. Has anyone > experienced anything like this? > > Thank you all for letting me be apart of this group. > > Erin Shackelford
