Very Frustrated

Hi all,

As I’ve shared before, I’ve had 82 surgeries to either fuse, replace, or—in one case—completely remove a joint. For over three years, I’ve been dealing with tailbone and lower back pain.

Last year’s MRI findings

I recently saw my back surgeon, the same one who fused my neck last year. During my visit last week, he told me that last year’s MRI showed swelling at the tip of my tailbone—a detail he never shared with me in December, nearly a year ago! I would think that was important information to share at the time.

He then mentioned that there is a surgery to remove the tailbone, but he doesn’t perform it. He advised me to contact my pain doctor at Vanderbilt, the same doctor who administered my steroid shots two weeks ago.

Trying to find a doctor who can help

I reached out to my pain doctor and explained the situation. Unfortunately, he didn’t know of any doctor at Vanderbilt who performs this surgery. My back surgeon, however, did know of a doctor at a different medical agency. I managed to schedule an appointment, but it wasn’t until January 16, 2025.

Appointment cancelled

Today, I received a call saying they must have my records from my pain doctor before proceeding. The doctor has to review my records, and only after that will they decide whether to set an appointment.

When I asked what exactly the doctor was looking for, the staff member said, “I don’t know exactly. I just know that once he has viewed your pain records, they will set an appointment.”

They then cancelled my appointment, meaning it could take a week or two just to hear if he will see me at all. By then, it will probably be February or March before I can get an appointment.

Feeling defeated

This just broke me today. I feel totally and utterly exhausted—like I’ve been in a physical fight. I am so tired of having to fight tooth and nail just to get a little bit of help.

I called my sister to vent because she knows what I’ve been through all these years.

I need support

I just need a little bit of encouragement or support. I feel completely alone in this and like no one truly understands how much pain I’m in.

I hate that our system isn’t set up to help people like us. I feel like I’m literally in a fight just to find a doctor who can help me.