Cayla had her 4th eye diagnostic on Tuesday. The doctors noted continued improvement of her eye function since the initial testing the beginning of last week. While the pendular nystagmus (involuntary oscillation) is always present, the amplitude of movement is noticeably reduced from earlier tests. Results for two of the tests that we could observe most clearly are the “saccades” where images pop up randomly and the eye movement is measured and “pursuits” where there is a gradual movement of an image and the eyes follow. We have noticed much better “in phase” following of the pursuits (both eyes closely follow the movement rather than lagging) and both eyes working better in unison in response to the saccades. We have also seen a slight improvement in Cayla’s ability to “look up” without moving her head, something she has been unable to do for some time.

These tests are rough on Cayla, and after a relatively short period of time (less than the standard test length) fatigue sets in and the pendular motion ramps up. Nevertheless, the doctors are encouraged and so are we, although the doctors use cautious languages such as “trending in the right direction.” There doesn’t seem to be a significant quantum change in eye function coming anytime soon and there is more work to be done.

More promising has been the therapies that focus on the tremors. The focus yesterday afternoon and all day today were various treatments that experiment on combinations of simultaneous whole-body movement, brain stimulation and manipulation and/or immobility of various individual body parts. These experiments are observed to determine the effects of various combinations on the tremors and also to refine the diagnosis as to what parts of the brain are working properly and which are not and which areas will benefit from stimulation to create new pathways. The doctors have determined that the left side of the cerebellum needs to be “calmed down” somewhat while the right side of the cerebellum needs to be stimulated. The goal is to have them be more in balance. Each side of the brain controls the opposite side of the body, and, right now, we are seeing more significant problems with the left side of the body and the left eye (related to underperformance in the right side of the cerebellum).

On Tuesday afternoon, the doctors had Cayla keep her eyes shut so that the stimulation to the brain would come exclusively from the whole-body movement, brain stimulation and manipulation of individual limbs. On Wednesday, they had her open her eyes and continued to make progress in attenuating the tremors. However, when they began to have Cayla try to move her limbs, that was too much and they had to back off. We’re sure they will be trying to pass that threshold again in the next couple of days.

We were very encouraged by the experiments we observed where the doctors were able to arrest the tremors entirely for some period of time even after the motion and stimulation had ceased. Carla recorded a video of one of these treatments (https://tinyurl.com/mr2faef3). Wednesday evening we observed Cayla eating her dinner with her head tilted over to the right, something the doctors had suggested to reduce tremors, and she was able to feed herself much more easily than usual. Over the last couple of days we have also seen Cayla much more independently mobile – able to walk by herself without always having to hang onto somebody else. Of course, we also see Cayla’s energy level vary from day to day depending on how tired she is or how much discomfort she is experiencing.

The doctors continue to say that they believe that the cause of these symptoms is mostly physiological (damage to the brain from the presence of the tumor and its subsequent removal, possibly exacerbated by COVID) and less so from psychogenic factors including stress and anxiety. So their focus will be with treating the physiological brain issues with physical therapy and brain stimulation to create new pathways as opposed to what other medical providers have been doing to treat the psychogenic factors with psychological therapy and medication.

We are not sure when or if the doctors will be using TMS (transcranial magnetic stimulation) before we leave. That is one of their specialties at this facility, but we expect that they will want to ensure that they have collected enough data from the therapy and experimentation to have sufficient certainty about where to apply this treatment.

We had a very frank discussion on Tuesday with the doctors about the level of progress they believe Cayla will have made by the time we will be returning to Phoenix on Saturday. They will continue with the therapy for the rest of the week and (we expect) do another diagnostic of her eyes. The pendular motion and the tremors are connected, so, no matter how much progress is made on reducing the tremors, improvement in the eye function also needs to improve.

While there have been some noticeable improvements in both eye function and the ability to temporarily reduce tremors, there is no “breakthrough” yet and more work will need to be done. We will need to have more discussion with the doctors about next step, what resources there are in Phoenix and also get some guidance for other practitioners and physical therapists so that the progress here can be built upon and not interfered with or undone. Coming back to Portland may also be something to consider at some point.

The real test will be to see how Cayla acts and feels in her normal environment at home after two weeks of therapy and whatever tools and learning she takes with her. We are very proud of Cayla’s hard work and resiliency and we are extremely grateful for all of the prayers, moral support and financial assistance from family and friends to make these two weeks possible. Last week, we were discussing having faith and needing to find hope, and this two weeks has been transformational in that regard even though Cayla’s physical progress has been modest.

Thanks for all the love and support! 

Here is a quick synopsis of the therapies Cayla has had and initial evaluation over her first three days.

Because of Cayla’s tremors, the diagnosis going in is that her vestibular system is impaired. That is the body’s balance and spatial orientation system that includes eyes, ears, muscles, and brain. For most people this is “autonomous” and works by itself, but there are certain areas of the brain that regulate these functions and others that can override them. For Cayla, various parts of this system are not working, not working properly or working at odds with each other.

A significant amount of time has been spent on evaluating Cayla’s eyes. Her tremors are caused in large part by the “pendular nystagmus” or involuntary oscillation of her eyes. The brain then tries to compensate for this movement by moving her head or other muscles in the opposite direction. The doctors did quite a number of tests to measure eye movement and reaction to several exercises. While this was very fatiguing for Cayla, they were encouraged that many of the exercises resulted in short-term improvement.

Cayla’s left eye and other symptoms on her left side seem to be more pronounced than those on the right side, leading to the preliminary conclusion that it is primarily the right brain that needs treatment.

Other therapies included physical manipulation such as rotating Cayla in one direction (e.g., clockwise) while rotating another object (e.g., the doctor’s hand) in the opposite direction to observe how Cayla’s tremors respond. They have also moved her head and arms into various combinations of positions and have observed how various combinations affect the tremors. For example, they observed that leaning her head all the way to the right while putting her left arm down and as far behind her as possible nearly eliminated the tremors. Of course, she can’t stay in this position all the time. These experiments mimic some of the tug-of-war that is going on between various parts of Cayla’s vestibular system and her brain and give the doctors insight into what parts of the brain are working properly and which are not.

Preliminarily they believe that Cayla’s symptoms are not FND (functional neurological disorder) that is caused by brain injury w/ psychological problems (including anxiety), but more likely it’s all physiological, i.e. trauma to the brain itself. This is an important distinction, as it indicates that drugs may not be as appropriate for treatment as other methods such as stimulating and “rewiring” the brain. The doctors are thinking that this trauma has resulted in a lesion in the right side of the mid-brain at the top of the brain stem. These are the areas that would normally be responsible for regulating many of the autonomic functions. Since these areas are damaged, other areas of the brain are trying to compensate. They are finding there’s issues with both sides of the brain, in Cayla’s case.

While it might seem obvious that Cayla’s brain surgery in early 2020 was the cause of this trauma, the doctors are also speculating that COVID may have had some role in her symptoms. COVID is being considered because the doctors have seen more patients with these types of symptoms who have no other potential cause other than COVID (which apparently can cause certain types of damage to the brain), but also the coincidence of Cayla’s bout with COVID in 2021 and the onset of worsening conditions.

There is more diagnosis to be done to determine exactly what types of therapy will be the most effective over the balance of Cayla’s visit and also to focus on which areas of the brain will benefit the most from stimulation to establish new pathways. Cayla has also had other therapies to stimulate blood flow, such as gentle current applied to her jaws and tongue and a couple sessions in the hyperbaric oxygen chamber. Almost all of the therapies are unpleasant in some respects, but Cayla is in a good frame of mind and is forging ahead, even though she is exhausted.

Thanks for all the love and support!