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When to think about pain differently?
After two unsuccessful surgeries for the rare disease called achalasia, the doctors at Oregon Health Sciences University determined I was in end-stage and my only option at that point would be an Esophagectomy. The surgery took almost nine hours.
Even though there were no complications and I no longer need a feeding tube and my weight has been stabilized, (I'm not gaining any) there is still a lot of pain. The surgery was last December. Achalasia itself can be very painful and it's unknown what causes it. One theory is it is triggered by a vagus nerve injury. Nerve degeneration is thought to play a big part throughout the progression of the disease. One of the last lab tests OHSU did showed no active nerve activity in my esophagus. Nerves can also misfire at various stages of the illness. This is called hypersensitive esophagus. You experience more pain than is logically in response to various stimulation, and other inaccurate sensations. I had several doctors suspect I was suffering from this at various stages during my illness. The surgery itself requires surgeons to work around a lot of nerves. So basically chronic pain can be a reality come out of this surgery for achalasia for a number of reasons.
OHSU is going to do a couple of exams to see if I've developed any long term complications. I don't have my hopes they will find anything more than something that will improve my pain.
I'm at the stage where I think need to accept I have chronic pain and need to change my thinking to how can I improve it to the point it doesn't control me, rather look for a cure, which is increasingly looking like wild goose chase. At first that seems daunting, but when you break it down it gets easier. The first step seems to be looking at everything in my life that is making the experience worse. There's an obvious one in that area; the summers in the part of Oregon I live have gotten very hot and the air quality is bad because of wildfires. I'm holding off making the final decision until OHSU does what they can, but if they tell me I'm in the situation I believe I am, at that point I'll probably move to Oregon Coast. It rarely gets much above 70 degrees and the air is very clean.
I know that's just a start though. Do doctors help with this kind of thing? Or, is chronic pain treatment just medication management. Depending on medication (unless you're talking about something as like Tylenol) seems like a bad idea for two reasons: one; I've been sober for 23 years and I'd be risking a relapse and from what I understand dependence on medication for chronic pain can actually worsen the pain in the long run.
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Good Morning.
Thank you for sharing your experience. It demonstrates your perseverance and continued engagement in finding healing. Sounds like you have a great team where you are.
Many of us suffer from various degrees of chronic pain. You aren't alone and may find many supporters. My situation is different- musculoskeletal. That said, may I offer the following suggestions:
I would highly recommend Mindfulness Based Stress Reduction (MBSR) program. (It is also a book by Jon Kabat-Zinn). There are hospital-based versions of the program. Mayo Clinic also has a program. Your own medical center may also have one. Doctors can help with the situation but it is a wholistic approach. It takes a team (community) to make a person "whole" again.
In the meantime, if you are not already doing so, find means to engage in breathing exercises, meditation, and movement, including Tai Chi, yoga, whatever works best for you.
There is much hope for you- and work to be done. You are work in progress and your goals towards better (pain free) living are achievable. Expect progress- not perfection. And be gentle and patient with yourself!
I have not been to your part of the country- but it sounds beautiful despite the (hopefully temporary) conditions. One thing about the mindfulness training. You learn to control how you respond to your environment. Conditions may not be the best where you are right now but how you respond and react to it can make all the difference in the world. And, you do seem to have a care team that works? Have the conversations with them!
Best!
Ann Marie
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3 ReactionsI'm not sure if this is the place to make my comment, but here goes. I have made may comments and responses to others' issues over the past year or so. I am suffering from extreme, chronic pain that has raised it's ugly head over the past 4 or 5 months. I had the pain from a ski fall in 2016 fairly well managed until 2021. I had a cocktail of meds and a spinal cord stimulator that worked well. Until February of 2021, when the pain in my buttocks, lower back, and feet returned. suddenly. I dealt with it. Went to countless docs. Finally had a pain pump implanted in 2023. It has not helped one bit. I dealt with it. Then, in the last few months the pain has ramped up to the point where I cannot walk very far, ride my bike, work in my shop, etc. The point I'm trying to make is that I constantly am going back in my mind to points in time where the pain was not so bad... "If only I could go back to just before my fall, I could take a different trail"; if only I could go back to when the meds and SCS were giving me good pain relief, I would do so and so". I am driving myself crazy! Has anyone else out there gone through this? Or, am I the only nut doing this? Would really like to know. I have been doing this for years now.
Thank you!