Sister111's Journey with Brain and Spinal Cord Tumors in Adults

Family/Friend: Brain and Spinal Cord Tumors in Adults

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: almost 8 years ago, Female, Age: 55

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    • Sister111
    • Experience with Brain and Spinal Cor...
    over 7 years ago
    Sister111's Avatar


    Oh No

    Well my sister started having symptoms on 12/9/2012 and after a bit of coersion on my brother, Louis's, behalf since he lives with her and was witnessing that something was definately wrong, he talked her into going to a local "treat and go" clinic on 12/23rd ..they sent her home w/a prescription for a 500 mg anti-biotic and a phenergan for the nausea leading everyone to believe it was a virus causing the dizziness, headaches followed by severe nausea,and her being very disoriented. I spoke w/her a couple of nights later and she was still getting sick but she said it wasn't happening as often so I just asked her to call me if anything went wrong...and I got a call from her on Sunday morning of 12/30th asking me to come pick her up at work because she had passed out. I raced to get her..not knowing what to expect as we were all worried about her and I asked her to go to the emergency room then and she didn't want to at first...her concerns were the fact that she has no heatlh after calling my older sister, Teri we talked her into going and I picked up Teri and off to the Providence Hospital ER we went while we had to make one stop along the way because she was so very nauseus again. After an all day event of lots of test and waiting and a CT scan and an MRI she was diagnosed w/a malignant brain tumor on the left side of her brain and of course the shock set in and the tears came and here we are with tons of questions and what to do next. She was also given strict orders not to work or drive so now not only does she not have health insurance she has no income. She is a certified nursing assistant at a local nursing home, Ridgecrest Retirment Center, but works with patients in the physical therapy department helping them to do "range of motion exercises", etc. and absolutely loves her job and she is so good w/the patients. The ER Dr, Timothy H. Welter had actually reffered us to Neurologist in town, Dr. Steven C. Zielinski,.. whom I called first thing Monday morning while @ work and was told..."He doesn't do brains" by one of his staff and under the circumstances I felt this lady whom I spoke with was not very helpful or supportive at all. She told me I needed to call UT Southwestern Medical Center n Dallas which was no help either. The lady treated me like I was a complete idiot..she asked if I had a referral for my sister and I said no... and she asked if my sister had regular dr I said no and then she told me I would have to get the Dr. in the Emergency room, Dr. Welter to refer my sister (which is just not done at all..I found out later..) and to have them send her medical records of the results and to make sure that the records were clearly marked "NO INSURANCE". I called Dr Zielinsly's office back that Dr. Welter had referred us to several times since I was at a complete loss on where to turn from there and was not given any input and was even hung up on once. I'll admit I was very emotional but under the circumstances..I was doing my best to get some answers for my sister who was at home and unable to communicate very clearly at that time who was waiting and trusting that I would get her an appointment and some answers. Finally I had a lady in Medical Records at Providence Hospital whom I called and spoke to at the end of the day was more helpful to me than anyone I had spoke with at all that day. She gave me a couple of PH#s to call and on Wednesday since Tuesday was New Years day I got Robin set up w/an appt w/a local Neurosurgeon who is very expensive. $350.00 for the very first visit and does not accept medicaid (I'm hoping I can get her qualified for it) I have asked this Dr's office to pull her medical records from the hospital of her results since we're hoping at the very least he will do a biopsy at the first appt to determine it actually is Cancer since I don't understand how they can determine cancer by just an MRI and from there he can let us know if it's treatable and what options we have. From there I assume we will have to seek resources outside of Waco to see who might accept her since she has no money. We've reached out to family and friends for donations and are even talking about a fundraiser later on.. Her appointment is on Jan 14th @ 9:30 so we're hoping to pool the money together by then to pay for the office visit. My youngest sister, Angel worked on getting her set up at the local Family Practice clinic since it's free for people w/no income so we can get her a regular dr for minor emergencies and prescription refills, etc. since she is already out of the new nausea medicine that the Dr. Welter prescried her.. (it doesn't wipe her out like the Phenergan did that the "Treat and Go" clinic had prescribed her). She hasn't had much nausea lately but she could at any time and we learned that the E.R. does not do refills either...I also got her an appointment w/a local Assn called "Community Cancer Association" founded by an elderly gentleman who has a heart of gold, named Bill Northcutt who helps w/paying for prescriptions, medical supplies, even a wig, (if necessary), etc. up to $400 a that is where we are at this point. The ER sent her home w/a few presciptions... one of them is a steroid which is helping to dissolve the fluid around the tumor which was causing the fainting, disorientation, headaches and nausea so all of that had mosty subsided for now enough to a more tolerable level unless she moves around too much. She is home alone most of the time during the day unless my brother is off. He has various days off since he works at Ridgecrest Retirement center as well in the kitchen doing various duties.. I am also attempting to qualify her for "Food Assistance" since I know there will be a huge strain on my brother very soon as he will be responible for the rent, utility bills, groceries, etc.

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