Tuesday mornings begin at 7:30am for us with a lecture for the doctors. Today, Dr. Msuya had asked Laura and Kelley to go over the neurology examination. Though this is something we do every year, it is so essential to our continued care of the patients that it is worth doing again. When we’re not here, or even when we are, it is impossible for us to communicate about patients unless we have some idea of the patients examination along with their history. You can only gather so much information from a photo or even from a video without knowing what their examination is. When someone came up to me Monday to tell me they had a patient over in the main clinic who was unable to move their legs and they wanted me to look at them, I asked what their exam was like and they hadn’t checked their reflexes. A neurologist would never even dream of speaking to someone about a patient without being able to provide that information.

Since we had established our patient flow well in advance of starting the day, it was a smooth beginning with patient flow with both Kelley and Laurita off and running with their first patients. Kelley worked with Dr. Ken this day and Laurita worked the day with Salina. The majority of new patients seemed to fall on Kelley’s watch this day and she had an amazing array of incredibly diverse pathology in her patients, most of which she had never seen before. I can’t recall the exact order, but I’ll highlight a few of them.

A large plexiform neurofibroma

Perhaps the most impressive patient of the day was a young woman who came to see us from Moshi who I recognized immediately as having neurofibromatosis. The reason it’s so imprinted in my brain is that we had a similar patient last March with a plexiform neurofibroma of her scalp that I hadn’t recognized immediately and was totally educated after sending a photo to Carrie Kovarik back at Penn. So when I went out to call this patient, her diagnosis was readily apparent at first glance. She had a large plexiform neurofibroma of the face and another on her leg causing massive tissue growth there. She had been brought by a physical therapist from an NGO in Moshi and her mom accompanied them. The therapist spoke English well and was able to do most of the translation for us. There was a family history in her mother and maternal aunt who had mainly cutaneous neurofibromatosis without the large plexiform lesions. The young girl had had surgery on her leg in 2014, but the lesion had grown back and even larger this time and now she was developing the neurofibroma on her face as well. We really had no specific therapy to offer her other than some neuropathic pain medication as her leg really bothered her particularly at night, but I did tell them that I would email photos to Dr. Kovarik to see if she had any recommendations. I heard back almost immediately from Carrie and it was to say that the lesions are far too complex to consider surgery and therefore nothing can really be done for them. It’s so unfortunate to have a young woman of that age have such a disfiguring condition that nothing can be done about.

Cutaneous neurofibromas on mother’s back

Another young girl that came to see us today had a very complex history and an equally complex condition with multiple midline abnormalities including cardiac, facial and intracranial. She had reportedly developed normally until the age of 2 when she began to develop hydrocephalus, but the family had brought none of her medical records or earlier evaluations. She was now in her mid teens and had never had a shunt placed despite having an obviously abnormal head circumference and features of hydrocephalus including frontal bossing. Her heart condition was quite significant with a suspected tetralogy of Fallot and a ventral septal defect for which she had actually been seen previously at FAME, but she had somehow missed being evaluated in our neurology clinic until now. With no medical records it was very hard to piece things together, but we managed to do our best. She had come to see us for headaches that she had had for some time and it was obviously distressing for us to see someone with hydrocephalus and no shunt with her complaints. Thankfully, she had wonderfully sharp discs so we were at least reassured that she didn’t have increased intracranial pressure that needed to be dealt with. We treated her headaches and asked her mother to bring her back next time with her records including imaging studies so we would have some point of reference.

Our young girl with hydrocephalus and midline developmental defects

We saw a very young child in follow up that had had prolonged anoxia at birth and had presented to us in March with infantile spasms, a very devastating seizure/encephalopathy condition that typically only worsens over time with children often dying at a very young age. Jackie had seen them in March and placed them on topiramate which they had taken for five months with no subsequent seizures, but the child had also not progressed developmentally during that time. They had run out of medication one month ago and still hadn’t noted any seizures, but the question was whether to put them back on or not. I emailed Jackie who replied almost immediately to give me some direction on how we should manage this very complex pediatric neurology issue and we will convey that information to the family. The ability to seek input from experts at home in almost real time has proven essential for our work here on a number of occasions and has allowed us to see patients back if needed during our stay.

Kelley saw an unfortunate young woman with a number of neurologic complaints, but mostly appeared depressed and the reason was clear when she told us that her husband had recently died of cerebral malaria and she had five young children. It was obvious that she needed counseling, but that is something that is not readily available here on a professional basis and, even if it were, it would unlikely that she could afford it. It was such a very sad situation and our hearts went out to her, though we had little to offer her other than antidepressant medications, which will help, but will never be as effective as a good therapist to talk to. The stories such as these that we hear on a regular basis are so common, but they never become routine. It is so very easy to look at our own lives back home and to realize what we have, but it is not our role here to provide anything other than support for these patients from a medical perspective and not from a material standpoint. That can often be tougher than you’d imagine and may even be one of the toughest lessons you learn here.

We spent the evening working again in the volunteer office after I had driven our neuro team down to town as they had missed their FAME evening bus again. It was well worth it, though, as none of this would have been possible without their efforts and I have always been grateful for the wonderful people I have had the opportunity to work with here.