A Lesson For All Of Us – Be Proactive When Dealing With Doctors
Guest Blogger Staci
My Mother and the Doctor Factory
This whole saga began about 16 months ago. It started simple enough. My mother felt like she was losing her peripheral vision in her right eye. She described it as seeing a black spot that would move in and out of her field of vision. Since that time, we’ve seen four eye doctors (two ophthalmologists), two internists, a neurologist, a rheumatologist and the doctor that looks at your intestines.
The first guy gave her drops to use, but said nothing was wrong. He pretty much said it was all in her head. He also threw in that she was 78 years old (at the time) and vision loss is normal as you age. We dumped him and went to a second doctor that was recommended by a nurse friend. This guy is the head of his department in the hospital where he works. We wasted eight months with this guy before he suggested she see another doctor he was affiliated with because he couldn’t find a reason for the problem (which at this time was getting progressively worse). Her “treatments”, as I could see were that he would dilate her pupils on each visit, and he prescribed a different eye drop from the first doctor. The third doctor continued with the dilation of her pupils on each visit, which at this time was about once per month. She would see doctor number two on one week and doctor number three on a successive week. Each time, each doctor would dilate her pupils, but they could find no reason for the deteriorating vision. Wouldn’t you think at this point they would have stopped dilating her pupils and proceeded on to other testing? Finally, after 11 months of these treatments with no noticeable results, a MRI was ordered. I’ll never forget. It was Wednesday, April 28, 2010. A tumor was found on her pituitary gland that was pressing on the optic nerve. She was almost totally blind in her right eye at this point. She was ordered into the hospital that day with surgery scheduled two days later.
It sounds like this story should end here, right? The problem had been identified, and the solution should be clear.
There are two options for this type of surgery. The surgeon can either go through your nose, or he can go through your skull from the back. Considering my mother’s age, we opted for the first one. The surgery was done on Friday and lasted over four hours. Immediately after surgery, when they got her back to her room, she was in incredible pain in her left foot. The neurosurgeon that had performed the surgery called in an internist. He couldn’t figure it out, so he called in a rheumatologist. The rheumatologist decided it was the effects of gout and prescribed Colchcine. Now, my mother had never for a day in her life had gout and the pain didn’t present like gout, but that was his diagnosis. I really would have rather he said he didn’t know. For the next two days, she was treated for gout but she was still screaming from the pain. My mother is fairly stoic, so for her to be complaining was really telling for me. She got no relief from the pain using this drug. On the third day, Neurotin was prescribed. This is a medication that was approved by the FDA as an anti-seizure drug, but it has a secondary use for nerve pain. Finally, they had hit upon a drug that seemed to help. The pain was manageable, but amazingly, the source was still being diagnosed as gout. The gout medication didn’t work at all while in the hospital, but they still sent her home with a prescription for Colchcine . Our first post-hospital visit was one week after discharge. By that time, I had done tons of research into the symptoms my mother described to me, and it sounded a lot like neuropathy and nothing like gout.
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The first post-hospital doctor was the internist from the hospital. I presented my research to him, and he still insisted it was gout. He did add a prescription for Tylenol #3 though for pain. Another week passes, and we have our next visit with the neurosurgeon. He says he doesn’t deal with the type of pain she’s having, she should go back to the internist, and besides, he doesn’t prescribe medication. Two more weeks pass and back to the internist. At this point, we’re doing all kinds of stuff to try to relieve this pain in her foot and nothing is helping. I asked the doctor what was the probability that her surgery was on the right side of her brain and the pain was presenting on the left side of her body that the two were connected. The look on this guy’s face would have been comical if we weren’t discussing my mother. His behavior suggested he thought I was trying to assign blame for some future lawsuit. My only concern was getting my mother out of pain. “No, no, no” he says. No way could that have happened. My next question was regarding the probability that the lumbar drain that was put into her back after surgery had somehow nicked a nerve, and that’s where the pain was coming from. His response – he still said he thought it was gout. I then presented more evidence that what I believed was closer to the truth, and he finally conceded that maybe the problem was neuropathy and not gout. So, for five weeks my mother suffered through misdiagnosed pain and took medications she didn’t need because of the stubbornness of a doctor to re-evaluate his diagnosis.
Now, while all of this was going on, the neurosurgeon ordered another MRI because during the surgery he was only able to remove a little less than ½ of the tumor. I should mention here that the tumor had grown to almost two inches at the time of surgery. Can you imagine if the MRI had been ordered after the first few visits to the second two eye doctors when they would only dilate her pupils and prescribe those expensive drops? Well, after the experiences we were having, I was reading all the pathology reports, doctor write-ups, everything, so when we went for the MRI I asked about a clamp that the gastroenterologist had left in her body after he did his examination. My research said that you couldn’t get an MRI if you have this thing in you, but somehow, nobody thought to ask even though they had all of her records and everything was happening at the same hospital. When I showed my research to the MRI lady, she agreed and when she looked a little further, she said that it would cause harm to a patient to go through the test with this particular clamp in their body. Not a single doctor had even mentioned that she had this thing. I read it in the reports, and the technician was good at her job.
Fast forward to last week. During a visit to the neurosurgeon, he re-iterated that he thought my mother should have Cyberknife radiation treatment to reduce the remainder of the tumor. He first suggested this during a five minute visit with my mother a couple months ago when she went into his inner office by herself. We have had two visits with him since then. Each time, while looking at her medical file, his first question was “have you had surgery yet”. This is the guy that performed the surgery. This is the guy recommending radiation treatments. Unbelievable! Back to Google and researching Cyberknife radiation treatments. I found the following quote from John Adler, Cyberknife inventor and Stanford professor of Neurosurgery and Radiation Oncology:
“Attracting more patients remains a goal because it will help doctors gain more experience with a Cyberknife”, Adler said. “More experience”, he said, “contributes to greater competency and, hopefully, more patients and money”.
There was also this from the article: Adler estimates 150 – 200 patients per year are needed at a Cyberknife center for doctors to be the most efficient and comfortable with the robotic arm. Treatments range from $11,000 to $30,000 per treatment and Medicare pays for five treatments.
Okay, since this has begun, and I won’t include all of the co-pays on prescriptions, the hospital has sent a copy of the bill which totaled over $99,000. There is another almost $40,000 in doctors’ fees, lab fees, and ancillary cost associated with inpatient hospital visits. Now, there is the possibility of another $55,000 to $150,000 charge to Medicare and her secondary insurance if we take this treatment. All of this is positively outrageous! And the Cyberknife treatment, people are coming out of this thing like they have had lobotomies.
In conclusion, here is my advice for anybody dealing with serious illness. Don’t blindly trust doctors – it’s just another moneymaking business, and research EVERYTHING yourself.