3 years ago
If you are diagnosed with cancer here, GET A SECON...
If you are diagnosed with cancer here, GET A SECOND OPINION ELSEWHERE!!!!!!!!! I repeat... GET A SECOND OPINION ELSEWHERE!!!!!!!!!
UTSW has a very high reputation as being a good medical facility, and it still is on most cases. But as I later learned, I am not textbook. However, in recent months my opinion of them has significantly dropped a few thousand notches. I stopped going completely and will never go back. The doctors here need to get off their high horse and go back to the fundamentals of medicine. STAT.
I came here in May 2018 with the diagnosis of having an acoustic neuroma in my left ear. My diagnosis has been BOTCHED severely! At my initial appointments, I was just told it could be this or that, and my doctor never really seemed willing to talk with me. The doctor was only in there for like 10 minutes. Of all things, MY REFLEXES were abnormal and my initial MRI report, done elsewhere, made them decide to check into things further. That's when things went down hill FAST.
I did a spinal MRI there at UTSW, and it was discovered that I had what looked like a Grade 2 or 3 Spinal Astrocytoma, which is extremely rare. My doctors admitted that they have only seen like a small handful of them ever, and one doctor even stated one girl was a lot sicker than me! I had only the ONE MRI DONE and I was told I WAS DYING!!!!!!!!!!
The radiation therapist told me and my family that one of these days I will be lying in bed and won't be able to get up at all. I should be in a wheelchair. (On a side note, they all were thinking that.) He highly suggested that I need to start general radiation soon for 5 minutes daily for 5 weeks straight.
The spinal surgeon just sucked. At his appointment, I commented to his fellow that I didn't want to be there. The fellow's response was something like "you don't have to be here. Nothing is stopping you from leaving." I should have!
The expert on gliomas sent my images on to colleagues to see if they too thought it was that while we were in the room waiting on him to come in, and to them all, it was. I stated to him "I feel like everyone is making a big deal out of nothing." His response was Why do you say that? I FEEL FINE!!!! There were 3 underlings in the appointment with us as well.
At some point in one of my appointments, WE (being me and my family) WERE TOLD I HAD 2 MONTHS TO 1 YEAR TO LIVE!!!!!!!
The last doctor told me just to come back for another follow up in October... It was only July at this time.
So I end up at MD Anderson Cancer Center down in Houston, TX in August 2018. On my first day there, I saw 3 doctors and all 3 doctors told me I DON"T HAVE CANCER!!!!! And they all looked at the same images that UTSW took.
MD Anderson took blood, did a spinal tap, repeated all of my MRIs, did a CT scan, got special approval from the hospital board to do a CT Myelogram on me, and all of my test results came back normal.
They even presented my case in their tumor board, and out of 100+ doctors in that room, NOT ONE OF THEM SAID I HAD A TUMOR.
It is now May 2019, 1 year after the fiasco started, and MDA still believes WHAT I HAVE IS CONGENITAL! I LOVE IT THERE! They actually take time to listen to me and let me be the patient with concerns.
UTSW needs to LISTEN to their patients more AND DO SOME BLOODWORK TO CONFIRM A TERMINAL ILLNESS BEFORE TELLING THE PATIENT AND FAMILY YOU"RE ON LIMITED TIME!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My ear doctor there even called me at the start of this year (2019) himself. In the conversation, he said he presented my case regarding the acoustic neuroma to their skull base conference. It was decided that it could be one, but on a side note they all said, regarding my spine, it could be a SMALL SPINAL ASTROCYTOMA. A small one that they all said was large at first! HAHA!!!! He asked if I wanted to see a neurologist there. My file shows my doctors notes from MDA, and I DO NOT HAVE CANCER!!!!!!!!!!!!! So NO!
The doctors do seem to care. However, I do not trust them. It is sad, really sad that that's how they approach PEOPLE.