| | Re: Looking for people who have pain pumps implanted.
Hi, I'm new to the board and wanted to start a new thread but I haven't figured out how to yet. Here is a little background,in 2004 I had to have a triple open lung biopsy,the surgeon instead of making a 10 inch incision she did it orthoscopicly in the process she severed 5 peripheral nerves along with some sympathetic nerves. We know about the peripheral nerves because of the nerve blocks the doc tried the biopsy was done on feb 16,2004. On feb 18,2004 I was diagnosed with stage 3 chronic sarcoidosis. A little history on sarcoidosis(it is a rare autoimmune disease that can effect any organ but it mainly attacks the eyes,skin,and lungs. Mine has attacked every organ other then the heart,brain,and central nervous system. With sarcoidosis the body doesn't know how to break down calcium and vitamin C. When the pain lasted a lot longer then post surgery pain is suppose to I was referred to pain management at the Medical University of South Carolina. The doc and myself attempted all topical meds, along with all nerve agents,external tens unit(which was a dud due to the severity of sincitivity to touch), we also tried nerve blocks which didn't help one bit. Final we were at the last resort(taking narcotics). On July 20,2004 I was diagnosed with therastic peripheral neuropathy and moderate reflex sympathetic disturphy(sp sucks sorry) I was started on 5mgs of percocet 4 times daily and over the years pain meds were changed and for the last 4yrs I have been on 125mcgs duragesic and lortab10/500mgs 4 times daily. About 6 months ago my primary care doctor(he's a resident not a attending) lead me to believe we were going to tapper me down and try another narcotic like dilotid until I complained that the pain was getting way out of control(was down to 75mcgs duragesic) I was then informed that the entire Internal medicine clinic is tappering all there patience on narcotics off and not going to prescribe any more once off. They won't even give patience anything for pain control or withdrawal. I went and saw my PM doc on Dec 15,2008 for other options. He told me that we have exhausted all but one thing left for treatment. He said the only option left was a drug delivery device not with morphine but a new drug that was just approved by the FDA in 2004 its called prailt. Its a synthetic sea snail toxin,he said he has other patience that have my type of nerve damage that have the device and they now live with little to no pain. The problem is I have medicaid and due to my sarcoidosis my doctors will not release me to work. My doctor said that there is a slim to no chance medicaid will approve to pay for the trial,the neurosergen for the implant,the surgery for the implant,or the meds for the refills. So I'm stuck between a rock and a hard place. I have been dreaming about the day my pain would be under control. Its pretty sad when my daughter wants to hug me she has to watch were she touches,if she wants to sit by me she has to make sure she sits on the right side of me so she doesn't effect the place were my neuropathy and rsd is. My daughter has seen things a child should never see their parent/parents go through. She has seen chest tubes hanging out of my chest,wires connected all over me,she's been there on July 17,2004 when I had to have a hysterectomy due to cervical cancer, she's heard me screaming in pain from the neuropathy, no child should have to go through all that. If anyone knows of any options I might have to get the treatment my PM doctor and I know I that I need to just be able to function through basic day to day responsibilities of being a single mother. Not one person should have to be in the pain we chronic pain patience are in. We all know the looks and attitudes we get when we go to the E.R. For relief. Have any of you had this device implanted with this medication(prailt)? If so how has it worked for yall? Any advice or opinions would be great and very grateful. Thanks,good luck to all,and god bless all of you. Only we know what we go through. Thanks xxx10x(and the screen name is not x-rated its the grind of powder sugar).