Here’s Where My Surgery Story Begins…
August 12, 2020
I am taking you with me on my journey to, through and after a mega major surgery out-of-town starting with this post. We will learn together.
Expect lessons you can use at each step, strategies and approaches I’ve learned over the years and how well they work as I use them for myself and a surprise or more along the way. Learning: My first lesson on this journey? Ignorance is indeed bliss.
I have had several major spinal surgeries, resulting in chronic pain in my mid to lower back, like so many of us. I admit, however, my issues have been a little more extreme than I expected. Things like losing my ability to lift my feet (“foot drop”), having a lot of trouble walking, not being able to use an arm.
Recently I was seeing a pain management specialist to discuss my options, as my existing level of pain was beginning to wear on me. The doctor asked me to get a thoracic (or mid-back) spine MRI. Yes, in one of those tubes that make a ferocious amount of noise but produce images that are incredibly valuable.
To make it easier on me to get the MRI, I:
• Did not wear a bra or any other piece of clothing with metal
• Asked for the loudest possible music through the headphones I was provided
• Closed my eyes and practiced being in a meditative state and relaxing while being imaged.
It sounds improbable but true; I can now relax enough in the MRI to feel sleepy, helped along by a good dose of insomnia.
1. You can actually do more than you think in an MRI. I used to sing in harmony with the pitches of the machine noises. I was not the only one to sing in the machine.
2. I always close my eyes before I am brought into the machine itself, which helps me to focus.
3. I do not have claustrophobia.
4. Learning: For those who do, I highly recommend talking to the prescribing physician when the MRI is first recommended about what strategies will be used to help manage your claustrophobia. Management of claustrophobia has become much more effective and can make all the difference.
And then there is always paperwork. I’m thinking especially of identifying the healthcare professionals to whom I want the results sent.
What I Learned:
• It can be easy to assume that the ordering physician will inform your other doctors and generally it’s true.
• Learning: However, I want to make sure the doctors I think will have a special interest, even if they are not “officially” in that area of expertise, get a copy.
• Learning: So I pay attention to filling that part of the paperwork out, adding “Patient” as the last entry.
• That way I usually get a copy of the radiologist’s report (the doctor whose specialty it is to review imaging among other things) and sometimes more quickly than the time of the appointment.
This time my pain management doctor got the results before our next telehealth appointment and I had not yet seen them. He brought up a concerning part of the results of the thoracic spine MRI.
• A part of my spinal cord at thoracic spine vertebral level 10, or T10 to T11 was being significantly compressed.
• The spinal canal within which the cord is located was only moderately compromised, making the difference between needing to take care of things immediately and being able to plan out what should be done.
I was referred to a doctor out-of-town by my pain management specialist but still in the larger regional area within which I live. It was a bit confusing to me when I realized that the doctor was a neurosurgeon as I had thought he was also a pain management specialist.
I was so used to doing things online that I went to the neurosurgeon’s website to request an appointment, using the online form. Learning: What I learned from this experience, however, is to call after a few days to make sure they received the form – which, in this case, had mysteriously disappeared. I admit that I didn’t want to follow up as I usually do.
I heard from his office in another month, after they had received the pain management specialist’s note. A few weeks later I traveled down to see the nurse practitioner for that office. My main question? Their understanding of the purpose of my visit.
The nurse practitioner responded immediately, saying we were talking about a fusion surgery in the area of the cord compression and the potential for reducing the level of my chronic pain by inserting spinal cord stimulator “paddles.”
She was well-informed and able to answer most of my other questions, leaving some to the neurosurgeon. She promised to set up the follow-up visits and get back to me.
As I drove back, my brain kicked in and said, “Wait a minute. If I need surgery AND it’s in my thoracic spine (which is tough for several reasons), I need to make sure this is done up to my own standards.” Learning: I remembered from years of experience that just running with whatever the doctors do or who they send you to may not always be in line with what the patient wants. So I needed to get clear on what I wanted first.
Here’s what I came up with:
• Learning: I am NOT going to have any spinal surgery OUTSIDE a large research hospital attached to a medical school with a specialty clinic in spine (a “tertiary hospital” in my working definition).
• Learning: I DO want to be seen by an excellent neurosurgeon. In fact, as I made note of this, my mind immediately turned to one such excellent neurosurgeon that I had seen over the last 8 years at a tertiary hospital..
So, with these qualifications in mind, my strategy now is to get a consultation from my neurosurgeon at the tertiary hospital AND run my strategy past this trusted neurosurgeon.
Learning: So at the beginning of the following week I left a message for my neurologist. Within an hour he called back after reviewing the MRI and opened with, “You have got to get this fixed!”
1. We agreed on strategy, in which I would see my neurosurgeon at the tertiary hospital ASAP.
2. My neurologist also clarified a few things for me, including the significant potential of developing paraplegia (or paralysis from the waist down) if I did not get surgery within the next few months.
• That well-deserved kick in the pants arrived.
• Ignoring the situation was no longer possible.
• Not finding out the significance of my spinal cord compression? A mistake.
• Learning: Bottom line: I just didn’t want to deal with any other health issues.
• There were lots of reasons, as there always are. But the biggest?
The Story Continues…
I used my health advocacy skills to…well, more about that in my next blog post.
I really want to hear from you, about how you went through times like this, your stories about surgery or other medical interventions, things this story reminds you of, even guesses about how I used my advocacy skills.
Just click HERE to send me an email.
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