People often asked me how was my health but I did not always reply at length because sometimes, people ask out of politeness or that they did not know what else to say. In such situations, once I started describing my health progress in detail, the other person will lose interest evidently. Over time, I started providing brief answers just to be cordial as well. Ha ha.
But there are those who really meant to ask the question especially when they have contributed and still want to contribute to my personal health care costs. So I have remind myself to update these supporters of my on going health and medical plans and not be too consumed with my foundation work.
On 3 August 2016, I did a bi annual MRI of my whole brain and cervical spine at Assunta Hospital in Petaling Jaya, just a short drive away. My local neurologist Dr Raihanah Abdul Khalid ordered for the tests. I have just sent the results and scans in a dvd to my neurosurgeons at the US National Institute of Health for their reviews. To be safe, I also sent a copy to my previous neurosurgeon Dr Gregory P Lekovic at House Clinic in LA for his evaluation too. The team at NIH manages NF2 somewhat differently from Dr Lekovic. I want to be extra careful so maintain my quality of life for as long as possible, hence I sent to Dr Lekovic as well. But to save money, I sent using air mail this time instead of Fed Ex or Pos Laju. Ha ha.
I have also been working with my speech language pathologist, Cecilia Santiago, at Sunway Medical Center. We did a varium study in June and have been working on exercises to strengthen my ability to swallow safely. Another exercise was also taught to me for strengthening my soft palate so that food will not go up my nostril. Cecilia is very good at her job.
My ophthalmologist Dr Meena, at Assunta Hospital has been treating my extremely dry right eye with a different medicated eye drops. She said that there is no cure for dry eyes, so we can only prevent it from getting worse and pray for the best. For those who are unaware, the vision in my right eye went downhill one week after my acoustic neuroma surgery that took place on 1 February 2016. During that surgery, the facial nerve was preserved but irritated. So not only was my face weaker temporarily, my right eye also became dry due to the lack of tears which has not improved till today. When I thought that my right eye was too dry I asked the neurosurgery doctor to order for eye drops. I was provided with Refresh Plus but it was insufficient and I did not know better. By right I should have been given eye gels in the list. It was also winter and after a big snowstorm, which meant that air was especially dry. So my vision went downhill in the week of Chinese New Year.
Now I cannot see well enough to go anywhere by myself and difficulty locating objects on a table. Y part time PA has to come and help me do things throughout the week. Moral of the story we must be diligent and alert with our physical needs when receiving treatments at the US National Institute of Health because doctors taking care of the ward and in patients including those who just had surgery, are mere residents with very little clinical experience to help them identify possible complications before they happen. They are mostly guided by a nurse practitioner from day to day . The nurse practitioner has been taking care of the neurosurgery patients for a few years but a nurse practitioner’s capacity and ability are different from that of an experienced doctor. The residents may call the surgeon when problems arise, but only if the resident manages to identify that a problem exist. Haha .
I think this system of operation needs to change.
It has been rather upsetting to adapt and live with my new disability, but eventually, I would have no choice but to accept and make do with what I still have.
To the people who have contributed and are still contributing to my personal and medical expenses, I thank you sincerely for keeping me in your heart even in the current global economic downturn. I have been using your contribution to pay for the extra health and life support resulted from this recent complication. Just to give you an idea, the most expensive regular medical test I have would be my MRI which costs between RM2000 to RM4500 each time depending on how extensive the test is. My speech therapy, since I came home have costed me more than RM2000 cumulatively so far. Some of my medicated eye drops are also especially costly because they contain medication in them. Doctor consultation at Assunta Hospital is, thankfully, quite cheap. I also need to check and drain fluid from my thyroid, and consult a doctor over a growth under my tongue. But as these are not hurting or disruptive, I can delay until I visit the NIH again because my treatments there are free. I try to save cost whenever I can. I try to save because I do not have any efforts to waste funds for my own medical costs now but reply on spontaneous contributions from existing supporters of mine. This is because I am not as strong or autonomous as before anymore and I cannot do much physical work. So I put all my effort into building a foundation that will help other NF patients get life saving treatments instead. Although my physicality is limited, my mind and brain are still optimal for building a foundation to help others.
This is all about my health for the time being. I will write about it again when my neurosurgeons revert with their evaluations of my recent MRI.