Chronic Pain - Part 3
It’s been awhile since I’ve written about what’s going on with my chronic pain (you can check out Part 1 & Part 2 to catch up). I’ve shared here and there on Instagram about different treatments, but after sharing something in my story this week about getting some of the nerves in my head cut, I got a lot of messages with questions. It’s hard for me to find the balance between keeping everyone in the loop, without becoming the “chronic pain girl”. I don’t want to talk about it so much that it becomes the first thing people think of when they think of me, but it’s also a huge part of my life.
I haven’t done a great job giving updates since my surgery, and I think that has left a lot of people thinking that my surgery fixed everything. I really, really wish that was true. The surgery helped a lot. I used to have nerve pain in my head 24/7. It never fully went away. Since the surgery, there have been lots of days where my head pain is at a 0-3 on the “pain scale”. This has been life changing for me, and honestly has helped my mental health a lot as well. It feels pretty helpless when you have a never-ending “headache” (for lack of a better term), and I wasn’t always sure that I was going to be able to continue living like that. Now, I have more good days than really bad days, although those still happen too. I can also get full blood flow to my right arm now, so the surgery was definitely successful.
I still get flare ups of my head pain - if it rains, if it’s too cold, if I sleep wrong, sit wrong, do too much activity, or do something weird in yoga. It’s temperamental. My shoulder also really hurts. It hurts to stick my arm out to the side, lift it overhead, or pick up heavy things. The worst part is that it hurts to paint. If I overdo it too much with my shoulder, my neck tightens up, then my head pain kicks in.
Over the past year and a half, I’ve seen two specialists for Thoracic Outlet Syndrome (TOS). One said he thought that I needed surgery again, the other said she thought surgery wouldn’t make anything better and we should try other things. I decided to side with the second specialist, Dr. Freischlag, not only because I liked her plan more, but she seemed to have less skin in the game. Dr. Freischlag is a specialist in TOS, but also the dean of Wake Forest School of Medicine and the CEO of Atrium Health Enterprise. Her paycheck doesn’t only come from doing surgeries, so I felt like she was able to consider other options more clearly. She sent me to physical therapy for 4 months of 3x a week PT with a very specific plan. I gained a lot of strength back in my shoulder, but didn’t see much improvement in the pain.
Dr. Freischlag then send me to see Dr. Chung, who is board certified in both Neurology & Pain Medicine. Dr. Chung has been great at really listening to what I say about my pain, and seems determined to figure out what is causing it. There’s been a lot of trial and error with treatments. I’ve learned that a normal way of figuring out what is causing chronic pain is giving nerve blocks into different areas and seeing what works. This isn’t ideal, because each nerve block is a cocktail of steroids. Obviously, steroids aren’t good for you. Especially during covid, because they lower your immune system and make you more susceptible to illness. Through all of these nerve blocks, we’ve realized that a few things are causing the pain - Occipital Neuralgia (ON), frozen shoulder, and overly tight scalene muscles. Each of these have different treatments.
This past Monday, I had radio frequency ablation (RFA) done for my occipital nerves. What this means is they basically heat up a needle with radio frequency and fry the occipital nerves (in the back of my head) in order to cut them. This is supposed to stop the pain for 6-12 months, but they will eventually grow back (how unfair is that?). It’ll take about 2 weeks for these nerves to fully die off, but I can already tell a difference in my pain levels.
The next step is to get botox injections into my scalene muscles in my neck. These will basically temporarily paralyze them a bit, so that they can’t work as hard as they have been. That should help with a lot of my neck pain.
After that, I’m set to get a 60-day peripheral nerve stimulator put into my shoulder. Since this is a temporary stimulator, it doesn’t require surgery to be put in. It’ll be an outpatient procedure in which they insert a wire into my shoulder. I’ll have rechargeable battery packs that I will have to attach to my arm, and a remote to carry with me in order to turn it up and down. The hope is that it helps my nerves learn to “reset” so that even when I get the stimulator out, the pain shouldn’t be as bad.
There’s no guarantees that these treatments will take care of the remaining pain, but I’m (very cautiously) hopeful that I’ll see improvement. The backup plan for if these don’t work is to get permanent nerve stimulators. I say that’s the plan now, but the plan changes a lot. I’m lucky to have doctors who don’t give up on me, and who believe me when I say I’m still experiencing pain. They’re constantly looking for ways to help me, and I’m extremely grateful for them. Chronic pain is hard. It’s lonely, often makes you feel crazy, and there’s not a ton of hope. In recent years, I’ve been really lucky to find doctors & friends who have been incredible at understanding and supporting me through it all. They’re the reason I can do this.