Discussions By Condition: I cannot get a diagnosis.

Grandma isn't herself. Doctors won't listen.

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Altari
  • November 10, 2010
  • 10:54 PM

First, I'm very sorry for how long this is. After a week, we have no answers and are being accused of ignorance by the hospital staff. We just want Grandma to get better and come home.

My grandmother is a very active, intelligent 83 year old woman. She drives, she goes to and plans parties with her friends, she visits family half-way across the country, makes cookies with my children and, in general, is fully capable of taking care of herself. She lives with my parents, and me and my kids are over very often.

On Monday, she finished her course of Levaquin and Prednisone for a lung infection. I drove my mother to the eye doctor (Grandma: "I hate waiting in that office!") and Granny picked up my kids from school. They, from all accounts, had a wonderful afternoon together.

On Tuesday, she fell twice (no injuries) and began to lose strength in her legs. Her doctor assured us it was a reaction to the Levaquin, and would investigate further if it continued. However, she was certain it would subside by Wednesday.

On Wednesday, she was fine, but a bit tired. This is normal for her after a course of Prednisone. We didn't think anything of it. No falling today.

On Thursday, things went rapidly downhill. I was supposed to come over at 11. I was going to drive her to the doctor and then she was going to go with me to the dentist. My mom called me at 9:30 to tell me that Grandma had fallen again and she needed my help getting her up. I got there at 10. From 10 to 12, we got her down the stairs, into the bathroom to clean up, dressed and into the car. (These are things she does without help all the time.) My girlfriend and her husband had to come over at about 11:30 to help Grandma get down the front step into the car. We set off to the doctor's office, and Grandma quickly lost cognizance. The doctor called my mother back and instructed us to head straight to the E.R.

The E.R. ran a battery of blood tests, urine tests, a chest x-ray and a CT scan. All of them were clean. The only problems were: slighted elevated kidney function, slightly elevated BP, low O2, low heart rate. By 2PM, Grandma no longer knew my name (but did recognize me as her granddaughter), the month/year, how many children she had or what was wrong with her. She began complaining of a mild headache and lost nearly all motor function.

Because Grandma is such a social butterfly (and we live in such a small town), nearly everyone on the E.R. staff knew her and knew that something was wickedly wrong with her. The doctor decided to admit her overnight. Because her condition didn't change, they did an MRI on Friday morning.

The MRI revealed a 2.1 cm tumor (which we later found out is an acoustic neuroma/schwannoma). The staff neurologist and neurosurgeon agreed the local hospital wasn't equipped to deal with it and transferred her to a larger teaching hospital in the city, about 2.5 hours away. The MRI showed no signs of stroke/hemorrhage/etc. According to the neurologist, aside from the tumor, it was completely normal for a woman her age. They transferred her to the other hospital that evening.

On Saturday, they ran a number of tests including a few more MRIs. All we know is that they were all clean (aside from the tumor and a small amount of excess fluid around the brain stem). They also indicated there was minor swelling around the base of the brain stem.

On Sunday, we spoke to a resident neurosurgeon who assured us the neuroma was causing none of the symptoms. According to him, it would need to be at least twice the size to begin interfering with other nerves. He said they would halt/shrink it with radiation, but it was too risky to remove surgically. This, by his statements, explained her hearing loss in one ear over the last few years, but nothing else. He said the excess fluid, the inflammation and some unknown third factor could be causing the rest. So, on Monday, they proceeded with a spinal tap and drained the extra fluid. That made no difference in her condition.

In the interim, Grandma has become cognizant, but is suffering from a time delay. You ask her a question, and she answers...several minutes after you ask! She cannot lift her arm more than 2 inches above her lap, or lift her feet off the ground. The only real gain, aside from regaining lucidity, is she can eat again, but she is sleeping more than half of the day. (Usually, she sleeps for 5 or 6 hours at night and takes one or two hour long naps during the day.)

Last night, my mom spoke to a surgeon who said they wanted to remove the neuroma, as that was causing all the problems. !!! This was the first bit of conflicting information. She was relieved and agreed to the surgery.

However, this afternoon, she spoke to the chief neurosurgeon who explained that removing the neuroma would NOT, in fact, resolve the issues with motor coordination and cognitive functions. He proceeded to tell my mother that we need to accept Grandma's advanced Alzheimer's disease. !!! My mother attempted to explain that this was an acute change, a matter of night and day, occurring over the course of 4 hours. It was NOT a gradual change. He insisted that family often ignores the bitter reality until it is so progressed that it cannot be ignored. (Of course, I am paraphrasing a very long conversation, these are not exact words. He was very nice about delivering his "diagnosis.")

We are currently waiting for the final results of the spinal tap. The "initial results," from what we've been told, are clean. Since I have young children, my first concern is some kind of meningitis, although that seems unlikely right now. We're considering requesting that the doctors put her back on a corticosteroid. It was odd that this began after she ended her course of Prednisone, and we aren't sure we have much to lose by giving it a try.

Again, sorry for the long post. It's been an extremely stressful week and we're looking high and low for some explanation. My grandmother is a proud, capable woman and the thought of simply putting her in a nursing home in this condition is something we can't bear and she wouldn't stand for (if anyone gave her any say in the matter). Thanks for any responses.

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3 Replies:

  • I got stir crazy and began researching tonight. I also thought about a few things I don't think I mentioned in the original post, which eventually brought me to Guillain-Barre syndrome. Is this even possible?The main things that led me here: The symptoms appeared rapidly. Her weakness was ascending. It followed a lung infection. Her CSF protein levels were elevated. This is all of "unknown cause." Once the worst of the "attack" was over, she gradually regained lucidity. I know it's a rare disease, and even rarer at her age, and she hasn't had her flu shot yet this year. But stranger things have happened. Maybe? Any experience?
    Altari 9 Replies
    • November 11, 2010
    • 05:18 AM
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  • *****The main things that led me here: The symptoms appeared rapidly. Her weakness was ascending. It followed a lung infection. Her CSF protein levels were elevated. This is all of "unknown cause." Once the worst of the "attack" was over, she gradually regained lucidity. I know it's a rare disease, and even rarer at her age, and she hasn't had her flu shot yet this year. But stranger things have happened. Maybe? Any experience?_______________________________________________*****That's a good possibility; also, interactions between her medications or a bad reaction to an OTC drug recently ingested. Have they thought of taking her off the non-life threatening medications to see if she stabilizes? And then test for the disease mentioned above. Its an excellent place to start.
    Anonymous 42789 Replies
    • November 11, 2010
    • 01:16 PM
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  • She's been removed from all medications since Thursday afternoon. The new hospital restarted the blood pressure meds on Sunday or Monday. Initially, the thought was a drug interaction. We and the doctors were sure if that were the case, she would be at least improving by Saturday. While she's regained lucidity, her motor control is the same (or worse) than it was when this started.
    Altari 9 Replies
    • November 11, 2010
    • 03:42 PM
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