Thursday, September 15 – Back at FAME again for our neuro clinic…

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Following three days of very successful neurology mobile clinics, one at Kambi ya Simba in the Mbulumbulu region and two at the Rift Valley Children’s Village near Oldeani, we were returning to our neurology clinic at FAME which we had done all last week. In fact, several of the patients we had seen previously and needed imaging were returning today to get their CT scans so that we could see them again after their study. First things first, though, as it was Thursday morning and time again for another educational session to be given and the first morning slot that we were given to present. Moira and Alex had planned to talk about headache by leading a case-based discussion from several of the cases we had seen while at FAME. Tanzanians by nature tend to be a bit quiet and asking questions can often feel a bit like pulling teeth as they will most often sit silently when asked questions without first pointing to someone specifically for the answer or either asking them directly to answer. That does not imply in any way that they don’t know the answers to the questions we’re asking, only that they are not very likely to volunteer an answer without first being called on to provide it.

Moira staffing a patient with me while Husein observes

Despite this natural hesitancy to speak up at times that seems characteristic of most Tanzanians and, therefore, the doctors and nurses at FAME, both Moira and Alex did a great job of getting some active participation from the staff in helping to sort out what part of the patient’s history was important when evaluating a new patient with headache. The main teaching points that they were working on getting across was what we refer to as the “red flag” symptoms – those that raise concern that a patient’s headache could be secondary to some other process and that they need additional testing such as a CT scan of the head or not. In the US, it is not uncommon for patients who see the neurologist with new onset headaches to be sent for an imaging study such as an MRI scan. There is often a significant amount of anxiety that exists in patients with headache as many are concerned that there is something abnormal in the brain causing their headaches. Most of the scans ordered in these situations are found to be normal, but it can be rationalized that if the patient goes to the emergency room on a single occasion for their headache, that would be more expensive than just getting the MRI scan and reassuring them with a normal study.

Here, the situation is much different as the vast majority of patients do not have an insurance to cover their studies and, therefore, they will have to pay for the studies on their own and, even though the cost of a CT scan at FAME, or anywhere in Tanzania, is ridiculously less than what it would cost in the US, it is still significantly more than most anyone here could possibly afford. FAME will work with patients as much as possible to assist them, but in the end, the patient, their family or their community must come up with something towards the cost of the scan (or treatment, for that matter) if there is any hope of continuing to provide care for others due to the constraints of funding an operation that is an NGO. For those patients that are in need, I have never known them not to get it at FAME, but unfortunately, for services like specialized surgeries that cannot be provided for at FAME, that is another matter entirely.

Some little helpers (actually patients) from Tarangire

If a patient has a condition for which they need to be referred to Arusha or Moshi or even elsewhere, where don’t have any control over the decisions that are made, the family will have to come up with the bulk of the cost ahead of time. This is obviously a major impediment to getting things done here and a discussion that must be had with the patient and/or family before we begin any investigations that will yield results we’re fairly certain of and will require some action to be taken. This is always the most difficult part of practicing in a resource limited setting where these types of decisions must be made and there are no safety nets in health care or social services.

There are, of course, some special situations where significant headway has been made such as children with hydrocephalus that can receive shunts at no cost, but even in that circumstance, it is often difficult for the family to pay for transportation or their own housing when they have to travel to where these services are provided. Childhood cancers are also a work in progress here as the care of the children is covered and they are working on creating a network throughout the country so that the care can be provided locally allowing families to remain at home rather than having to travel to the Dar es Salaam. The person spearheading this program for the country, Dr. Trish Scanlon, is an amazing individual who has dedicated her career to working with these children and improving the likelihood that children with these disorders will receive the care they need.

One of the patients we cared for today in clinic was a patient who had initially been seen last week and had returned with an MRI that we had suggested he obtain. He was a 25-year-old young man who had reported the onset of weakness and sensory changes in his legs several months ago that had come on rather suddenly. He didn’t have any back pain to go along with it and on examination, had an upper thoracic sensory level, mild proximal weakness in his extremities and brisk reflexes suggestive of a myelopathy. Given his lack of back pain, we were mostly concerned about a cord process which is why we opted to recommend an MRI scan and not a CT scan as the latter would not really image the cord at all, but rather the bony structures that we didn’t think were likely involved.

On returning to clinic today, he did not have any clinical changes and his examination remained the same. He brought us a disc with his studies on it that we had to bring to radiology to view given the fact that our laptops no longer had CD drives in them, though this would also allow us to send the images to our neuroradiology, Dr. Alex, who is in the US and always available to us to view any studies. The radiology department here at FAME is pretty state of the art with all digital imaging that is stored in the cloud on a server that can be accessed from anywhere, allowing Dr. Alex to read the FAME studies as well as anything else that is loaded onto the server and also allows me to view the studies when I’m back home in Philadelphia if there are interesting cases.

Sagital T2 demonstrating destruction of the C5-C6 vertebrae

What this patient’s MRI demonstrated easily explained his neurologic symptoms and his neurologic examination, though it was unusual that he did not have back pain associated as this is often one of the presenting symptoms of the disorder he suffered from and is usually followed by the neurologic findings. The disorder that our patient had, Pott disease, or tuberculosis of the spine, is not uncommon here in Africa and is the most common presentation of extrapulmonary TB. The difficulty with the disorder is that many patients don’t display the more common findings of TB that one thinks about and they also most commonly present with pain in back, an obviously common entity, without any neurologic symptoms and the process is subacute rather than acute. The fact that our patient had no significant back pain clearly made things difficult and it may have been because of the location of the infection which was the lower cervical spine which is far less common than the lower thoracic and upper lumbar spine.

Our patient, though he clearly had neurologic findings on examination that led us to the diagnosis, was not completely compressed with the inflammatory and infectious process that was eroding his C5 and C6 vertebral bodies as well as the intervertebral disc between those vertebrae and had already begun to cause compression of the spinal cord, though no cord signal changes were noted. We sent the patient to the outpatient department to get started immediately on their anti-TB regimen here and we would plan to follow him up in several weeks as well as make sure he came back in immediately should he notice any worsening neurologically.

I’ve seen quite a few unfortunate cases of Pott disease here at FAME that have come far too late for us to do anything or their onset of neurologic symptoms was years ago and they have come with the idea that we can somehow make them better. For the most part, few of them have ever seen a neurologist to explain to them exactly what’s going on and why they have the deficits that they do. For some of them, we can actually help with medications for spasticity of the legs or therapy for their contractures. Though most of them were treated for their TB at some point, the damage to their spinal cord had already been complete and their neurologic function irretrievable, leaving them with a paraplegia and most with bowel and bladder dysfunction.

I remember one case several years ago of a young girl who came in with at least a several week history of progressive weakness of her legs and an initial concern by the staff here that she might have Guillain-Barre syndrome, or acute inflammatory demyelinating polyneuropathy, a disorder affecting specifically the peripheral nerves rather than the spinal cord and is, instead, the exact opposite of Pott disease or a myelopathy. I had just left FAME that morning and was in Ngorongoro Crater with an excellent cell signal and recall quite vividly when they texted me with her examination and her spinal tap results clearly suggesting the diagnosis of Pott disease which, in the end it turned out to be. She was sent to Arusha to the orthopedic surgeons, but was lost to follow up so I never found out what happened to her. Hopefully, our young man today will fare much better given his less severe findings on examination and much earlier treatment.

Today was also a big day for us as we were once again hosting a large contingent of neurology patients from the Tarangire region who have been identified by one of the Maasai chiefs there and who looks out regularly for individuals with neurologic disease in the community. Though he has asked many times about us coming to their village to do a clinic, and as much as that would make sense considering the number and the appropriateness of the patients from that village, it is in another district and would require lots of red tape to get that fully worked out with the district medical officer. Though there is a tremendous need everywhere for our services, there also has to be the appropriate support and willingness for sustainability of the project. It is impossible for FAME, whose mission really is to improve the health of the Karatu district, to absorb the cost of treating patients in other communities. With a request for partnership must also come that commitment for funding and sustainability.

Despite a very busy day with many patients, we finished early enough to get home and pack for our upcoming trip to the Serengeti the following morning. We had also planned to have Teddy bring everyone’s clothes to the house tonight to try them on. As usual, I had not ordered anything, but was enjoying myself with the excitement everyone has picking out fabrics, looking at patterns and then telling Teddy what they wanted to order. It’s impossible for everyone not to enjoy themselves maximally with this exercise.

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