Happy International Brain Tumor Day! We already celebrated national Brian day back on March 6th (happy belated).
It has been a few days since I last blogged. The headaches continue and have been a bit worse than normal lately. We are in full allergy season here in upstate NY and we are also experiencing some dangerous air quality levels due to an active forest fire across the border in Canada. So, there are a lot of possible factors playing havoc all at the same time.
Over the past 2 weeks I started having some water retention concerns and found that my hands and feet were both swollen and much stiffer than normal. My PCP now has me on a low dose of Lasix which has actually been helping to keep the edema away. I now have a much greater appreciation for the drug and didn't realize anyone could actually spend half the day running back and forth to the bathroom. To top it all off, I won the annual award for being the first family member to get covered in poison ivy. Typically, we leave that award for my sister, but she so graciously decided to let someone else have a turn this year. Add some prednisone to the mix and I have become such a pleasant person to be around. The irritability and sleeping difficulties are starting to pay its toll.
During my current semi-delusional state, I decided that I would also become a member of an online Pituitary Tumor support group. What I hoped would be provided was a platform for people to share their symptoms and treatments with an open outlook on the condition. What it turned out to be was a place to share the most horrific patient experiences and complain about the world of Endocrinology and Neuro-medicine. Most intelligent people can weed through the personal drama and find some useful information, unfortunately not too many success stories exist within this group. With any research regarding pituitary tumors, it has been evident that we really do not know much about them, how to treat them, and even what the "typical" symptoms are. The medical world is great at measuring things such as the size of the tumor or placing a numerical value to blood work. At the end of the day, we attempt to formulate a picture using those numbers and attach a severity level for the patient. Big problem...my severity level might be completely different than yours. The symptoms I find tolerable or maybe even haven't identified with, might just be debilitating for others. The world of endocrinology in the presence of pituitary tumors seems to come down to a sword measuring contest to see who has the most symptoms. That leads to the next question; is it best to complain about every possible symptom you have or stay quiet and present to medical professionals as "tolerating well".
Like I have mentioned in a few earlier blogs, I truly have been blessed with the right people at the right time. I have had full support from medical professionals at work who have gone way out of their way helping to get me answers and start me down the path of treatment. After my latest comparison MRI, which was completed on June 1st, I was able to meet with a neurosurgeon who graciously offered to set me up with an appointment with another neurosurgeon who specializes in minimally invasive pituitary tumor surgery (Neuroendoscopy). Since receiving my diagnosis, I have been mentally preparing for surgery and finally we were heading down a clearer path.
This week has been exceptionally rough emotionally. I finally came to the end of being able to orchestrate the direction of my care and now found myself relying on other people to take the reins and provide answers. It didn't take me very long for my head to catch up to the reality that I needed to prepare for brain surgery. About that same time, I decided that I no longer wanted to be doing this. I didn't want to face the next few weeks, possibly months of recovery. Were the symptoms really that bad? I can live with a headache, fat hands and feet and fuzzy vision! Can I? Yes. Should I have too? No. So I was forced back into the reality that surgery was truly my best option. It took me almost a week before I was able to set up a tele-med video appointment with this recommended neurosurgeon. What I may have failed to explain is that this surgeon specializing in Neuroendoscopy isn't from Rochester. He has established his practice at Weill Cornell, part of the New York Presbyterian health system in NYC (300+ miles from home). My initial interaction with the practice was rather pleasant. They sent me a lot of new patient paperwork to complete, sign and return. Set me up with their patient portal where I was able to upload blood work results and the MRI scans. They had a nurse practitioner call me the other day and review the information that I had provided, all in preparation for the appointment. All of this leading up to today when I finally came face to face with the man who would be drilling into my head. I had already prepared to ask him to take a picture of Brian once he sucked him from his imposing residence within my skull (I know we are all interested in seeing him).
Unfortunately, I found myself alone again in the comforts of a hotel room as I just started a 4-day weekend with the Air Force Reserves in Niagara Falls. The appointment was scheduled for 3pm, and luckily my wife was able to break away from her day to call a few minutes prior to be of some comfort and a second set of ears. 3:12pm my wife and I hung up together after speaking for about 8-9 minutes AFTER the tele-med appointment. For those who struggle with math; the total length of the phone call with my wife was 13min long. 13 minutes minus 8 minutes (the time we spoke after the appointment) equals 5min.
How much is 5 min apparently worth in the world of Neurosurgery...Over $600 (Not covered by insurance). Four of those minutes were spent reviewing AGAIN my medical history which left one minute for actual discussion. The "discussion" resulted in the plan to start oral medications AFTER being referred to endocrinology and that surgery was not in my best interest at this time. End of "discussion"… Not to make this guy seem completely dismissive, he did offer his services in the future if the medications weren't successful. Thanks DOC! Emotion aside, there was some actual medical knowledge offered and it was his opinion that due to the involvement of the carotid artery it was unlikely that he would be able to remove the entire tumor. If you are not able to remove any kind of tumor in its entirety, you run a huge risk of it returning in the future.
I am not sure if it was the arrogance or dismissive nature that turned me off more. What I do know is that we are back on this rollercoaster with no real direction or path to recovery. Frustration doesn't come close to where I find myself today.
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