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Archive for the ‘shunts’ Category

It’s been awhile since I blogged. That’s because I have spent the last two to three years navigating a frustrating, complacent, and at times, brilliant health-care system. Michelle suffered a severe TBI in 1998 and had made remarkable progress to the point where she was walking with a walker. Then about three years ago her physical ability began to deteriorate. She developed severe spasticity, went from a minimal assist to a maximum assist transfer, had trouble standing, and developed high blood pressure.

 

I took her to her neurologist who referred her to a neurosurgeon for testing. The neurosurgeon told me that frankly he did not know why I was there. He said, “I don’t diagnose, I fix.” He then sent me to another neurologist who specialized in movement issues. This neurologist recommended a CAT scan and an MRI of her head. The MRI technician would not do an MRI without knowing what type of shunt she had. I did not know so the MRI was never done although the CAT scan showed there were no problems with her shunt.

 

Several months later she went to the ER on Christmas day. There was a lump on the side of her neck where the tubing of her shunt ran and she was having terrible outbursts. They did another CAT scan there and another test on her shunt. She was in the ER for over five hours and after four hours began to have loud outbursts. The tests showed that there were no problems and my discharge notes were on how to control temper tantrums in children. Obviously, the ER physician had no understanding of brain injury and I resolved I would never enter that hospital again.

 

I found a new team of physicians at New York Presbyterian Hospital. I went to the hospital on Long Island to pick up the copies of her tests from Christmas and as I read them I saw that there was the possibility of a shunt fracture. No one had told me this. When I took the reports and the scans to her new neurosurgeon he did follow-up tests and indeed it was found that her shunt was fractured in her abdominal area. The shunt was surgically repaired and afterwards she made some progress, (she could now do weight bearing) but she still had a great deal of spasticity. I contacted a new neurologist at New York Presbyterian and contacted the hospital in Chicago for her medical records in order to try to determine what type of shunt she had. The medical records were sent, I was told, but they never arrived. I then contacted the Chicago office of the neurosurgeon who had done the original shunt surgery. The surgeon was no longer there but his partner informed me that her shunt was not MRI compatible. We were therefore limited to only CAT scans. We did CAT scans of her head and spine and all seemed well.

 

I still wanted to know what was causing these symptoms and I still had trouble accepting that her shunt was not MRI compatible since the shunt was implanted in 1998 and she had had an MRI in 1999. I had my own copies of the MRI done in 1999 and I took them to her new neurologist. He was able to tell from these that she could have an MRI. I also tracked down the neurosurgeon who had put the shunt in and found him in Florida. I faxed him his operating notes and he too verified that her shunt was non-programmable and an MRI could be done. The MRI technicians were hesitant but her new neurologist informed them that it was safe to do an MRI. The MRIs of her brain came back showing no problems. But then we did an MRI of her spine and discovered that she had a large cyst in her spine. We finally found the cause of her symptoms and on March 11th she will undergo spine surgery.

 

The neuro team on Long Island was only treating symptoms and not getting to the cause of the problem. The neurosurgeon in Chicago, who probably never tried to find out what type of shunt she had but played it safe by saying that her shunt was not MRI compatible, delayed the process by a year while the cyst kept growing.  The team in the city followed the symptoms until they finally found the cause. I hope someone will learn from this posting.

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Most often when individuals have VP shunts to remove fluid from their brain, malfunction is indicated by cognitive deficits. CAT scans are used to determine this malfunction.

In Michelle’s case, however, she experienced a year of physical regression. CAT scans indicated that her shunt was functioning fine. Health-care professionals allocated her deficits to a progression of her initial brain injury. They treated the symptoms but were not searching for the cause. I was not satisfied with that explanation and continued to prod trying to discover what was causing her regression. She had been walking with a walker and now she could do no weight bearing. Her transfers were maximal assist and in many cases two people were needed to transfer her. If she went down on the floor it was almost impossible to get her up because she was dead weight.

Out of frustration I took her into NYC to see a neurosurgeon who specializes in shunts. There we discovered that her shunt was fractured in her pelvic area. It was repaired in May. Since surgery she is doing weight bearing again although she still has a long way to go to get back to where she was. It took us a year to have her condition properly diagnosed and I can’t help but wonder what condition she would be in now if her shunt had been repaired much earlier. I also wonder how much discrimination played a role in her care. The underlying attitude on the part of health-care professionals was, she’s brain injured what do you expect. I expect the same level of care that anyone else would receive.

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Michelle is home and doing well. Thank you everyone for your love and support.

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Just talked to the neurosurgeon. Surgey went very well. They did not need to go into the brain and were able to repair the fractured part of the shunt, which was in the pelvic area. She will probably go home tomorrow. We are so blessed.

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Still not in surgery. Michelle keeps begging for Taco Bell.

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Surgery is scheduled for 2:30 tomorrow. We were unable to get an operating room today.

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Surgery is definitely tomorrow. Don’t know what time yet. It should take about an hour. We’re replacing tubing in pelvic area and will know immediately if that corrects the problem. If not will proceed immediately to brain surgery and replace entire shunt.

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