country_angel_heart
06-16-2008, 08:11 AM
Hi, :signs116:
My name is Tiffany and I'm 35yo. I have Spina Bifida (Mylomeningocele) and also Hydrocephalus. I live in Central California. I found this site while I was searching for other sites for people with SB that have unexplained pain. I'm hoping to meet some new friends on this site and maybe find others out there like me that deal with the same issues I do on a daily basis. It can be very frustrating at times when you need medical care related to Spina Bifida and you are forced to go to doctors that aren't really familar with it. I had great care growing up, as I was allowed to go to the Spina Bifida Clinics. Now that I'm older it's a completely different story. I feel like my doctor doesn't believe me or even listen to me when I try to explain the pain I'm feeling. He's done little to nothing to help me and I live in constant pain every day. There are days I wake up and can hardly move. My shoulders all the way down to my wrists hurt and I have excruciating lower back pain. On April 9 I fell while transfering into my wheelchair because I had been having wrist pain (the area right below my thumb) and my wrist gave out on me. I broke my right leg because of it. Well, my leg is slowly healing, but after one xray and 2 cortizone shots in my wrist I still have the wrist pain and on some days really bad swelling. The doc says the xray on my wrist came back normal. My question is, how can it be normal if it swells and I have pain in it? I feel he just doesn't believe me and doesn't even care. Something needs to be done with all the pain I'm feeling. It's not just the wrist pain bothering me. I wake up every single day in pain and it's a real struggle for me to even do little things because of the pain. I just don't know what to do anymore to get the doc to do more than he is for me. I don't even know what he could do that he isn't doing. I have state insurance, so my choices of docs is very limited because not many docs in my area accept the insurance I have.
Anyway, even if you don't have any suggestions for me, please feel free to respond or write to me. Like I said above, I'd love to meet new people/friends. :)
My name is Tiffany and I'm 35yo. I have Spina Bifida (Mylomeningocele) and also Hydrocephalus. I live in Central California. I found this site while I was searching for other sites for people with SB that have unexplained pain. I'm hoping to meet some new friends on this site and maybe find others out there like me that deal with the same issues I do on a daily basis. It can be very frustrating at times when you need medical care related to Spina Bifida and you are forced to go to doctors that aren't really familar with it. I had great care growing up, as I was allowed to go to the Spina Bifida Clinics. Now that I'm older it's a completely different story. I feel like my doctor doesn't believe me or even listen to me when I try to explain the pain I'm feeling. He's done little to nothing to help me and I live in constant pain every day. There are days I wake up and can hardly move. My shoulders all the way down to my wrists hurt and I have excruciating lower back pain. On April 9 I fell while transfering into my wheelchair because I had been having wrist pain (the area right below my thumb) and my wrist gave out on me. I broke my right leg because of it. Well, my leg is slowly healing, but after one xray and 2 cortizone shots in my wrist I still have the wrist pain and on some days really bad swelling. The doc says the xray on my wrist came back normal. My question is, how can it be normal if it swells and I have pain in it? I feel he just doesn't believe me and doesn't even care. Something needs to be done with all the pain I'm feeling. It's not just the wrist pain bothering me. I wake up every single day in pain and it's a real struggle for me to even do little things because of the pain. I just don't know what to do anymore to get the doc to do more than he is for me. I don't even know what he could do that he isn't doing. I have state insurance, so my choices of docs is very limited because not many docs in my area accept the insurance I have.
Anyway, even if you don't have any suggestions for me, please feel free to respond or write to me. Like I said above, I'd love to meet new people/friends. :)