Nerve Pain after surgery from achalasia, that I'm confused about

Suggest talking to the neurosurgeon. Do you have ENT specialist locally?

@shack76 Hello and welcome. I'm sorry you are experiencing such discomfort all this time after your surgeries. It seems crazy to you, I bet. I think you are heading in the right direction seeking out medical institutions or universities nearby. Seeing a specialist for swallowing and voice makes sense to me, and see what they suggest. Its always best to rule out specific causes and treatments. Have you scheduled an appointment yet?

I learned through my own journey of nerve pain and sensory symptoms, that occasionally chronic nerve pain can unexpectedly occur after surgeries or traumatic events, this is called Central Sensitization Syndrome (CSS). Given the fact that you are 18 months after surgeries, this appears to be chronic, not acute. CSS is an upregulation of the Central Nervous System (CNS) in which nerves may misfire sending louder signals to the brain. Peripheral input is affected via the spinal cord causing changes to sensor cells resulting in over-reactive nerves. Sensory, motor and autonomic may all be affected. Here is a video from Mayo Clinic's Dr. Sletten explaining CSS. You mind find it helpful in understanding the process.

Knowledge is power and I believe patients should be their own advocates by being prepared when they go to their medical appointments. I hope you find concrete answers and a path forward after visiting specialists, but please keep this info in your back pocket. Do you mind sharing your thoughts on the video, and letting me know how things are going for you?

I used to live in Seattle metro and went to pain docs there. I have nerve damage in my lower right abdomen, it was not a cure all but definitely helped minimize the pain. Was still taking morphine along with injections. Moved back to Missouri Aug 2020 and had a hard time finding a
Doc that would prescribe pain meds at all. Found an awesome doc here that is semi- retired OBGN, he changed my pain meds to tramadol and changed my muscle relaxers to one that is used more for pelvic pain. Not sure if combo of both, but I can function better on these meds than morphine. Nothing makes me sleepy, except sleeping pills, nothing to do with that and pain pills, maybe I was becoming immune to morphine or what.
Would definitely start with close docs in Oregon prior to going to UW, which takes forever to get appointment.
Let me know how everything goes, I definitely can feel your pain, nerve pain is debilitating.
Take care,
Carol

Since the surgery is effective in 90% of patients it appears it was successful. I believe you’re on the right track regarding your treatment. Both locations for treatment sound promising and I believe with speech therapy and voice therapy added you will be ok. You don’t say how long ago your procedure was and I would think therapies after this type of surgery would be appropriate. Good luck

I just watched the video and there are many aspects of what he was talking about that make sense.
The first being the it's going to be important for me to find doctors who will look at my entire history, because it is not clear why these symptoms are present right now. One aspect that I've had trouble finding doctors to take in to account and now seems even more important, is that I've been sober for twenty-one years and was incorrectly diagnosed as dual-diagnosed for years. I haven't taken any kind of psyche meds for over seven years. I came off the them because they made me quite sick, and frankly was giving far to many for years. The fact that the symptoms have never completely gone away only changed since coming off the meds seems to be important, if only to understand that further medication is not going to help. It's possible that history set me up for this to happen, and having two surgeries for in the middle of pandemic were the trigger. Because the symptoms are chronic looking at my entire history is even more important.
Right now I have a referral to OHSU, they have a voice and swallowing clinic, a pain clinic, and nerve center I think their a good place to start. There are also several neurologists in our state who do what called Nueromodulation therapy. I think this is worth looking into more. In some cases it can help. I think the closest doctor who offers this is in Tigard (that's just outside of Portland).
Philip

And of course the history of autoimmune diseases along with the medication seems important as well. Unfortunately it's hard to find doctors to look at the whole picture. Sometimes I believe medicine to over-specialized.
It's also very nice to hear a doctor assure patients you are not crazy.

@shack76 Congratulations on being sober for 21 years, Philip!! 💪
It sounds to me like you've got a good game plan. I'm happy the video resonated and you now have that knowledge. Not all specialty doctors take a look at the whole picture, nor do they have knowledge of CSS, but if you get into a great place like OHSU, I'm really hopeful they work together as a team. to find appropriate therapies and you get your voice and swallowing under control. Mitigating circumstances may play a role so don' be afraid to advocate for yourself.

On the note of psyche meds. Yes, the less chemicals in your body that can play a role with side effects and upregulating the central nervous system the better. It's great you've been off for 7 years and noticed positive changes. The goal is always to find self-help and holistic ways of helping ourselves to give our bodies and minds the best chance possible.

Will you please keep me posted on how the referral process goes and when you get an appointment at OHSU? I'm very happy for you! Think positive, my friend.