Doctors shouldn’t be the reason why patients suffer…or die!

Doctors shouldn’t be the reason why patients suffer…or die!

I’ve never been a person blessed with patience. If I had to be honest, I’m probably the least patient person I know!

There’s so much waiting you have to do in-between doctors appointments, for test results and even the follow-up consult after the tests are done. In my last post, I mentioned that Dr O requested an MRI of my brain and CT scan of my neck. Despite him telling me in that consult, that there is a partial blockage of my ETV, the MRI will confirm it without a doubt OR, it may not (either result is anticipated).

The MRI/MRV/MRA with CSF Flow study and contrast, including the CT scan, was done on Thursday afternoon. He specifically asked for the flow rate to be measured as well.

Flow rateThe flow of CSF with each cardiac pulse into and out of the spinal subarachnoid space is measured by PC-MRI. The pressure of the midbrain aqueduct may be changed by alterations of blood vessel capacity owing to heartbeats.

MRI “scans can show enlarged ventricles caused by excess cerebrospinal fluid. They may also be used to identify underlying causes of hydrocephalus or other conditions contributing to the symptoms.

MRV “(Magnetic Resonance Venography) is a highly accurate and non-invasive imaging technique that is used to focus on the body’s veins and determine vein health. Veins bring blood from the body’s organs back to the heart where it is oxygenated and regains vital nutrients. The MRV assess blood flow and detects detrimental abnormalities such as blood clots. Additional conditions this imaging technique could uncover are structural vein abnormalities, blood flow issues in the brain, and deep thrombosis in the veins (not the arteries). An MRV can also help evaluate conditions that can cause neurological symptoms, including intracranial hypertension and normal pressure hydrocephalus (NPH).”

MRA “(Magnetic Resonance Angiogram) is a type of magnetic resonance imaging (MRI) scan that uses a magnetic field and pulses of radio wave energy to provide pictures of blood vessels inside the body. A standard MRI cannot provide a good picture of the blood vessels and blood flow. An MRA of the head is done to look at the blood vessels leading to the brain to check for a bulge (aneurysm), a clot, or a narrowing (stenosis) because of plaque.

I know he has the results as they put a rush on it in order for him to have them the next day. Knowing this, I “expected” a call from his office but that’s a bit premature, I think. I’ve told myself to just relax, to not worry too much about it and to appreciate the fact that he is a busy man with other patients – he may even have spent the day in surgery. These are valid reasons! Hopefully I hear from him before our scheduled appointment on 11 May.

As I said, no patience…

Do you ever feel like when you pray for answers, God or the Universe (whichever you prefer), simply isn’t listening? Or when the answers do come, you’re flooded with the response/s? That’s what I’ve been feeling like these last few weeks. The response to my thyroid issue came a few weeks before my consult with Dr O. I was placed onto the public system waiting list for surgery within 6 weeks, pending the outcome of a biopsy and ENT appointment. Biopsy to determine if the growing nodule is cancerous, in which case my whole thyroid will be removed alternatively, only the right side will be surgically removed. The biopsy appointment is set for next Tuesday and the ENT appointment next Friday. Then surgery…

Also, the abdominal pain I’ve been having for the last few years required me to have a series of blood tests done, 3 days in a row, 48-72 hours after the pain. This will help rule out Sphincter of Oddi Dysfunction, which will also require surgery. Following a few days of this nasty pain, I started going for blood tests this week too and on the last day, I was told the contrast from the day before, may impact the results meaning, I most likely will have to repeat that process. But, I have to wait for the pain to hit again. On top of all that, the consult with Dr O, telling me my ETV is partially blocked and requires a repeat operation.

Everyone else around me struggles to keep up with all the appointments, making me feel like it’s just too much (no shit Sherlock), while I try to navigate through it. Waking up in the middle of the night and morning with a throbbing headache, nausea and dizziness throughout the day, just causes me to go into an internal frenzy – while I wait. The level of pressure and stress increases as I watch my bank balance dissipate knowing that Dr O comes at a price, charging a few thousand $$$s above medical rates. The fact that I have insurance to cover the operation seems insignificant when the $500 hospital excess including the extra costs for the surgeon and anaesthetist, have me asking; “How the heck am I going to pay for it all?!” As I’ve said before, there’s a financial burden that comes with this condition.

And so ensues the internal debate and guilt trip!

Regardless, work and life continue as I try to keep my head above water and function through the physical symptoms my body is going through, as best I can. Forcing myself to get up each morning, walk the dog, complete a work day and be present for my family because taking a sick day, is a luxury, as I need to keep those days for when all my surgery starts. Truth be told, the “normalcy” of life, helps keep my mind off it all for just a minute. My family depend on me. Being the main breadwinner (thanks Covid-19!), I can’t afford NOT to work, because without it, we will be screwed as most of our savings have been spent on doctors consults and tests.

The irony doesn’t escape me…

I am not the only person in the world affected by this condition. My situation is not uncommon. None of what I’ve written above is unique to me. I even woke up one morning wondering when my ETV closure actually started. Was it something that all these other surgeons have simply missed? Everything I’ve been complaining about these last few years compared to now, is no different, other than the daily dizziness. I wanted to get even. I was fuming. I wanted dates and names. The question I asked myself after all that emotion arose and passed; “Will it make a difference and does it matter?“. I don’t think it will. But, what does come through clearly for me, there needs to be a change.

Doctors shouldn’t be the reason why patients suffer…or die!



    April 22, 2021 at 3:06 am Reply

    Well, firstly Skye, of course it makes a difference and of course it matters. I know in the grand scheme of things, there are more patients than doctors. I get it! But when you are dealing with something like this, it seems like everyone is moving snail pace or not at all. A quick response to an MRI or CT film should not take a week to get a report released and a call from the physician or someone from his office. Don’t they know you are sitting at home waiting on this? Your life seemingly on hold. But when sanity and patience resume and we retake possession of our faculties, things seem to refocus and what was driving you mad, all of a sudden loses a realm of significance. Not because the results are unimportant or insignificant. There may be just be a backlog of cases where the doctor has to have “that conversation” with a patient who cannot be helped or they are considered “high-risk” and the family or next of kin, have to have a frank, heart to heart conversation about whether the risk of surgery is worth it considering the possible consequences.
    Unfortunately Skye, you and I, like so many others, are in a constantly growing line of cases all wanting and needing attention now. I also get the added pressure of being the only “bread winner” in your household. My wife is in that position also. Five or six weeks ago now, time escapes me, she was released from her job for no valid or reasonable reason. She was given 3 months severance which is quickly expiring. Being unable to work since 2010, you talk about a trying time. Wanting to help. Needing to help but unable to contribute in any meaningful way. All the while having an internal battle with myself. It is not like I feel “useless” or “less of a man” because I can not contribute in any real meaningful way. There are a set of circumstances way beyond my control.
    But getting back closer to topic. You have come through so much. You have faced these struggles before and will again. Take a deep breath. Let it out slowly. Stay focused. Don’t be swayed or take your eyes of the prize. Even though, in your case, it is nothing glamorous like a free vacation or a new car. It can be so much more valuable. The chance to try and restore to regain something like a life. One without constant doctor visits set to hospital schedules. One that will allow you to concentrate on what is important in life. Your family. For that I wish you best wishes and God’s speed for a successful and speedy resolution.

    • Skyewaters

      April 22, 2021 at 6:12 am Reply

      Thank you for your comment and valid points. “Sanity and patience has resumed” and I’m taking it one day at a time. One challenge at a time and focusing on the here and now.
      PS. I hope the uncertainty of your own situation improves and that you and your family are well?

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