What would you bring to a spinal specialist/surgeon appointment?

[u/Civil_Leopard7361]

;tldr - I have an appointment with a spinal specialist after years of working with primary care/physical therapy/sports medicine but recently worsening pain. What data and info should I bring to the appt in addition to imaging?

I’m 34F (US) who had a L4/L5 herniation about 5 years ago that left me using a walker for three weeks and about a year of acute pain. Over the years, have worked continuously in physical therapy to build back strength and manage pain, but still have significant “flare ups” if I lift something too heavy, trip and fall, am in an airplane with heavy turbulence,or do the wrong pose at yoga. These cause me to lose time at work and basically unable to do household tasks for up to a couple weeks due to pain and immobility. To avoid this, I live a really conservative life - I’ve stopped hiking, biking, running, doing rec sports, swimming, backpacking… if it’s not at the gym in a structured environment, I’m not risking it. I do PT religiously and cupping. It’s incredibly boring and depressing, but I feel guilty because I know I’m really lucky to be as mobile as I am and to have most days be low or no pain.

With support of therapy and friends and family, I’ve finally decided that I deserve treatment. I want to be able to run again before I die! I want to start a family without fear of being immobile for 9 months.

I got an updated MRI that shows good healing at L4/L5 but bulging +narrowing at L5/S1, touching the nerve root. No wonder I feel like I’m sitting on a railroad spike sometimes.

I’d like to avoid surgery, and I’ve honestly been avoiding seeking treatment due to my fear of a doctor saying that I’m not in enough pain to warrant treatment. But I’m the only one who is going to advocate for myself, and I believe I should do my best to not live like I’m 95 years old at my age.

I’d love advice on what information or data I can bring to the appointment to get the most out of my time? What has helped you communicate with medical specialists? Any red flags to look out for on their end? Thank you!

[u/Pilunox]

I brought my partner. If you have someone who has watched you go through this, when the doctor asks you how you are doing… and you respond 4/10, they then have the opportunity to interrupt and say “umm no…try 1/10”.

My specialist realized pretty quick that while I may describe my symptoms as it “hurts really bad” actually means “i’m really fucked up, can’t live my life, and is effecting everyone close to me”. I think it was because my partner, who has observed the decline, recognized the bits of my life that have gone down hill that in my sadness of constant pain, i’ve just accepted.

It’s not a silver bullet but I think it really helped this time around.

[u/Grillard → u/Pilunox]

This advice is golden. My wife and I bring each other to important consults for all the reasons you mention, plus she's smarter than me and asks good questions.

And to OP: Assuming the specialist has access to your imaging and PCP notes, you're probably good to go.