I had a L4-5 and L5-S1 lami/discectomy in 4/00. Was dx with arachnoiditis as my pain continued to esculate following surgery so my pain mgmt dr ordered an MRI which showed conclusively L5-S1 arachnoiditis and down into the cauda equina this was 7/00. Although my dr told me that I would continue to worsen I refused to accept this as I have always worked for a living as a registered nurse and a caregiver not taker. But 1 wk after informing my employer that I was given this diagnosis they fired me. I found another job but by the later part of October 2000 my pain was out of control and no relief was available without use of narcotic pain meds, which caused me to fall asleep at my job. Consequently I was fired from this job. I applied for and have since been awarded SSDI on my first application, which I have been told is very extradoinary. I am not able to receive medicare until 01/03 and not eligible for medicaid - so I'm indigent and have no medical coverage. I recently moved from Colorado to my home town of Dallas, Texas and have been here a month and have called so many dr's without any luck in that they will even see me as I have no insurance. In colorado I was very fortunate to have a wonderful Internal Medicine physician who understands and has treated others with arach and due to our financial situation I only was required to come in to the office when I hade severe flare ups or new symptoms. My meds cost 19,000 for the year 2001. My daughter has been providing me a place to live but she lost her job and thus we decided it was time to return to where our family was which is Dallas, Texas as my condition has worsened to a point to where it is too hard on her to care for me and work as well. Her income it no where near what it was and we do not have the money for my meds. I know many drug companies offer free meds for people such as myself, but my main problem is finding a dr who will continue my current treatment regimen. When I call the dr's office I tell them what meds I am on and inquire if the physician would have a problem continuing this same regimen and if the dr knows what arach is. As stated above, no one will even make an appointment for me. I have absolutely no where to turn. I have asked everyone who their dr is and have not found any help from this. I believe I can pay for dr visits at no more than once every 2-3 months as long as the physician will send in the applications for the drug companies to supply my meds. But again, I don't have insurance, I'm on social security disability, no medicare...I been told to go to the county hospital for "People like me", but when speaking with the county hospital staff they do not offer much hope that a physician will continue my current treatment regimen (which does not stop my pain, but it does allow me approximately 60% of the time to tolerate it and get out of bed and take my dogs for a short walk each day).
Certainly there has to be some kind of law preventing any physician from treating my condition with the medications that I have been on for approx 1-1/2 yrs now. Intractable pain laws must be in place somewhere and certainly there still has to be a few good docs out there who care more for the patient that the money in hand. As a nurse I always put the patient first and their needs first - which may be why my back is ruined along with the rest of my life. I am very, very scared as I will be totally out of medication in 2 wks - what am I to do??? What can I say to a dr that is appropriate but will result in favorable decisions to both care for me and treat me needed?? Do you know of any physicians in the Dallas area that treat arach patients that you could recommend? Please help as suffering with this horrible disease is enough in itself, I know without a doubt that I cannot tolerate being without my medications at their usual dosage.
Certainly there has to be some kind of law preventing any physician from treating my condition with the medications that I have been on for approx 1-1/2 yrs now. Intractable pain laws must be in place somewhere and certainly there still has to be a few good docs out there who care more for the patient that the money in hand. As a nurse I always put the patient first and their needs first - which may be why my back is ruined along with the rest of my life. I am very, very scared as I will be totally out of medication in 2 wks - what am I to do??? What can I say to a dr that is appropriate but will result in favorable decisions to both care for me and treat me needed?? Do you know of any physicians in the Dallas area that treat arach patients that you could recommend? Please help as suffering with this horrible disease is enough in itself, I know without a doubt that I cannot tolerate being without my medications at their usual dosage.
