In my last blog post I wrote about taking you with me on my journey to, through and after a mega major surgery out-of-town
Surprise! Some of you found my post depressing. I don’t believe it was the writing. Rather it was a very kind reaction to my situation, facing a mega major surgery. And perhaps a bit about the medical issues being talked about.
Surprise! Some of you shared deeply from the heart about your own experiences in response to that email. Please read Janice Ristow’s story at the end of this email.
I am not depressed about the upcoming surgery. I absolutely was angry in the beginning but now? I’m just grateful that this surgery is being made available to me. And that I got a swift kick that helped me understand the timing with which I needed to get going
And the need for the surgery and its hugeness was confirmed by a consultation (consult) with a surgeon who also does these surgeries from another tertiary hospital. That surgeon has a different background, training and set of experiences. Learning: It has been good for our family to face this surgery together.
- My sons were especially relieved about the proposed surgical approach.
- They are, however, quite concerned about my post-op recovery.
We will talk about some of the challenges that period presents in another post. I will also identify the options I considered for my recovery and what I chose.
In my last post, I was coming to terms with my situation and checking with people about my next steps. Learning: I needed to get clear with myself first. The results?
- No way was I going to settle for someone in my regional area. The information and that thoracic spine were too complex.
- So I didn’t use the referral I got from the pain specialist. Remember, my learning from that experience was his referral was not in line with what I wanted.
- I knew I needed a consult from a neurosurgeon at a tertiary hospital (a large research hospital attached to a medical school with a specialty clinic in spine) ASAP.
I thought about what I needed to do and ran my plan by my neurologist who is super competent. He not only approved, he made sure I understood my spine needed to be fixed. He also told me that the surgeon I planned to see could identify whatever tests are needed and my neurologist could order them locally.
- Get seen by a neurosurgeon at a tertiary hospital ASAP.
- Try to make an appointment with the neurosurgeon I have seen off and on since 2012.
- My backup plan: try to see another neurosurgeon at a different tertiary hospital if I couldn’t get in to see this neurosurgeon quickly.
Yes, it was that simple. But it took an amazing amount of effort and goodwill to accomplish.
My first step was to call the spine center in which my surgeon practiced. I did NOT go through the receptionist. I did not use the general hospital phone number. I needed to talk to someone who had the authority to make a decision about getting me in DURING MY FIRST PHONE CALL. Knowing how to do this is results from my experiences as a health advocate.
What did I do?
Learning: I opted to talk to my surgeon’s surgery scheduler.
- The scheduler was able to understand the urgency of my situation.
- She had access to the surgeon’s schedule.
- She could get me started and let me know if there was any hope at all of getting in within the next 3 weeks, my goal.
- And she was used to people who were worried and could sort out the issues which did need more immediate attention .
- She couldn’t have been nicer.
- She truly listened and understood what I was saying.
- She found a slot the next day that I was unable to take.
- She then found an appointment time for the next week, the earliest available, which was perfect for my drive.
- She called me the next day to give me a list of the information they needed before my appointment.
- So I overnighted a packet.
And showed up the next week with a written summary of my medications, symptoms, history and concerns together with any other information I thought might be useful. I was naive. What I expected to find out was whether I needed a surgery or not. Surprise! Sometimes you get really, truly surprised and your whole view of things changes.
The first appointment was an eye- and mind-opener. Why?
- My surgeon believed surgery was essential.
- He also was willing to do the surgery.
- He was very clear about how huge the surgery would be.
- That’s when I found out that his proposal was:
- To fuse my thoracic spine from T9 (out of 12 thoracic vertebrae) to my pelvis (5 lumbar vertebrae, 1 sacral vertebra plus the sacro-iliac joint
- To do a revision surgery of my lumbar spine, which had previously been fused.
He told me as we were standing facing each other in the exam room that I had never had a surgery like this and that it was a big surgery.
There would be pain and a rough recovery especially in the beginning. It would be like being run over by a big truck but living through it. He looked me straight in the eyes to judge my reaction.
The time period was a concern.
- He believed the surgery would require two days back to back with an overnight stay in the ICU.
- Operating time was very scarce and he was already booked for the next two months with people who had been waiting through the shelter-in-place and quarantine measures that had stopped all elective surgeries, even those that would have serious consequences if delayed.
We talked about what could be done and I left the appointment feeling as though the floor had tilted. Not only did I need a surgery, I needed a big surgery and I needed it sooner rather than later. And I had absolutely no control over the surgery scheduling.
As we continued to email back and forth, I was finally given a surgery date at the end of October. Trying to book an operating room (OR) for 2 days in a row was impossible. Learning: Never give up trying to get what you need from the system.
By that time I had my nurse coordinator’s contact information along with the surgery scheduler’s information. I wrote to the nurse coordinator and cc’d the surgery scheduler to let them know I had major concerns about waiting that long.
They did everything they could to find an earlier date for the surgery and were eventually able to move the surgery up to the end of September. At that point, I made my money shot.
Learning: tell the staff about how flexible you are. For me, I am very flexible and if an earlier time opens up, I told the surgery scheduler, I will do everything possible to get ready. I will go to the medical center for all of the testing if that moves things along. In short, I was emotionally ready for this surgery and would get everything needed done.
Learning: They found a way to move the surgery to August. I was tested to see how quickly I get everything done. I got that move-to-August call on a Thursday am in late July and by Thurs evening I had lined up all the needed appointments for testing and clearances. The last appointment took the most work but in the end it was done.
Now it’s less than a week before surgery and I have not received the formal surgery schedule approval for next week.
Janice sent me a beautiful email in response to my last post. I have gotten her permission to share some of it with you. I thought about the following as I read her story.
- We all have superpowers, discovered or not.
- It is essential to find a healthcare professional you trust to ask about their opinions.
- And you can be creative without burning bridges.
Janice’s Surgery Story: Her Superpower and How to Create Your Answers, Use Available Resources and Be Like Janice!
“…You have to be a certain kind of person to obtain results without making the person want to avoid you in the future. I think it is my superpower.”
“I have a very kind and skilled physical therapist and though he is not supposed to make recommendations I insist he tells me the end results of the surgery by the time he sees the patient. Example, I had a very good surgeon for my last shoulder surgery but he was an asshole/bully and I didn’t want to go to him again but my last result was good. The PT eventually told me that though he is very much in favor of caution he feels that [specific] doctor keeps patients immobilized too long and then explained the results” [of keeping a patient immobilized].
“Eventually he gave me the name of the doctor whose protocol he thought was excellent. I went on to do my own research and chose that doctor for my past March surgery. When I went for my [x]-rays in the surgeon’s office I again used my skills of forced persuasion to get her opinion of his work.”
Janice found healthcare professionals in unconventional settings whose opinion she trusted (her physical therapist) or wanted to hear (the radiology tech).
- She did her own research to get an independent sense of whether she wanted to see her new surgeon.
- She chose not to repeat a previous unpleasant experience although the surgery itself was successful.
- She certainly could have seen her original surgeon again, however, she refused to accept that situation.
I have heard amazing stories from people all along the way. It’s time you heard them too.
(Note: all stories and author’s names are used with permission.)
Please share your own surgery stories in the comment section above or contact me on my Contact page. What have you learned as you go through your own medical adventures?
Send the link to this blog post or the previous post to people you believe can benefit. Let me know how it went in the comments section or my Contact page.
Stay healthy and informed,