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Deeply frustrated: Unresolved pain due to geniculate neuralgia
Let me start off by expressing my deep disdain for human healthcare. I am a veterinarian and if I treated my patients as I have been treated, I would have my license revoked. I’m not sure what happened to effort or compassion. I’m dealing with an ultra rare cranial nerve disease and most doctors don’t even know a thing about it. It is called geniculate neuralgia and it causes intense burning and stabbing in my ear canal. I got my diagnosis through a telemedicine visit with a top neurosurgeon at Stanford when before, I was told I had anything ranging from shingles (never had a rash, only 36 when this developed and it happened after I woke up from an anesthetic procedure) to TMJD (a $1000 visit to an oral surgeon ruled this out) to trigeminal neuralgia to dystonia of my auditory ossicles. When I finally got my diagnosis, I had done every treatment under the sun already, including meds, PT, massage, acupuncture, nerve blocks, and even radiation therapy. No relief whatsoever. I moved to Florida in 2024 and saw a pain specialist who did RFA at C2/3- also no relief. I finally got accepted into Mayo in Jacksonville last November after I had been rejected 2 years prior. The surgeon I saw didn’t seem confident in my diagnosis, even though it was the only one that made any sense and he had no other explanation. He was willing to do MVD surgery but not willing to do sectioning of my nervous intermedius, which is standard of care for my diagnosis. His argument was he could always go in and cut it later if MVD failed. I underwent the procedure last December. My 4 day hospital stay was horrifying. I complained of 9/10 pain on day 2 of my stay but all they did was give me steroids and muscle relaxants. They said they wanted to wean me off pain meds so I could go home ASAP. When I went home, my pain was poorly controlled on the meds they sent me with and when I said something, they didn’t do anything to help. My pain continued to worsen and the doctor had no explanation for me. About 3 months post surgery, I developed burning in the back of my head that was worse than the original condition. I tried to seek help from another neurologist. He brushed it off and wanted to refer me elsewhere. I sought the help of another pain specialist. He did an occipital nerve block which did nothing for me so he pretty much gave up. I continued to try and find help and nobody would see me since my case was too complex. I tried to get into another neurologist that had a better reputation but the wait time was over 6 months out. I saw another surgeon in Tampa and he confirmed that the surgeon I initially saw did not perform standard of care for my diagnosis and likely damaged my occipital nerves during the surgery, which was never discussed with me as a possible side effect preop but apparently common enough that it should have been. Oops. He wants to do a revision surgery to section the nervous intermedius but now, since a failed MVD was done, there is scar tissue which will significantly hamper the chances of success. This was not what my original surgeon had said. I’m scheduled for surgery in November. I saw my pain management doctor hoping for some help to survive until then and he just blew me off and said he couldn’t help. No offer to refer elsewhere. I’m currently in severe pain. I can’t think clearly. I am not sleeping and can’t keep up with housework. I live alone with no friends or family. I’m making mistakes at work because of this. I have a general neurologist I see for this issue and for cervical dystonia, which I also suffer from. Last week I saw his nurse and asked about adjusting my meds (I’m on a low dose of clonazepam since I can’t tolerate other anti seizure meds. It’s better than nothing but nowhere near acceptable pain control). He said he would talk to the doctor. A week has passed. I’ve called the office 5 times asking for an update and have been given no information. I’ve reiterated how much pain I’m in. Nobody cares. I have been abandoned by the system. I feel like doctors care about my money but not about me. I’m just a nobody. I do not trust doctors at all. IMO they’re all quacks. I’m also realizing that there is no help for my chronic pain condition. At least in vet med when we run into this, we can humanely end a patient’s suffering. In human medicine, they force you to live in agony until your last breath. I hate doctors with passion.
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I'm sorry that you're having these issues but when you're not satisfied with the care you receive, you need to consider changing doctors. As far as the ER and the issue of not having someone to care for your animals if you're admitted, that is something that you are going to need to address and plan for just in case. It sounds like you're going to be facing a possible hospital stay somewhere in your future.
What a horrible situation to be in while living in the US and needing medical help. I have found most of the same problems over the past three years while searching for an answer to my pain. All of the top hospitals and more than 35 medical "professionals" available in my area, and not a single person has been able to tell me what is wrong. And it is the indifference from these "professionals" that hurts the most. Not a care in the world for anyone that comes to their office, as they do the absolute minimum to get you out of their office. I have two doctors (one a primary) that have never returned calls and/or messages for more than a year and a half now. This is why I keep going through hospitals and doctors as much as I do, to find someone that will listen, then treat me as a human being when deciding on care options. Unfortunately, this will never happen in my lifetime, and now I'm worried for the kids and grandkids.
@drmermaidfish1
I know you have tried everything but consider taking R-alpha lipoic acid 600 mg twice a day. Must be the R type. Take it for at least 6 to 8 weeks to see if it helps. I have CIDP and the R-alpha lipoic acid helps a little with that nerve pain. I wish you the best. I am so sorry that our medical community has failed you.
@kjoed53 Good morning, unfortunately what you experienced is not an isolated incident. This is something I found out, and that I let as many people know as I can, while trying to figure out the pain I'm in all day, every day for over three years now.
My main message right now is how bad the front desk / assistants / schedulers (everyone has their own names for these positions) are for EVERY hospital I've dealt with for three years.
These are hospitals that people who have not had to deal with them will have no idea about, and the saying the names of these hospitals illicits a response such as, "Oh, they're the elite hospital"...please believe me, if you are trying to schedule appointments, calls, or imaging / testing, the new normal is being lied to, mis-diagnosed, or just plain ignored. I have two doctors (that I've moved on from, one was my primary at the time), that have never returned messages or calls for more than a year and a half. One scheduler admitted in a message back to me in the hospital's portal that they screwed up. Her message was, "Sorry for the massive delay, please call to set up your next appointment".
The healthcare system in the US is broken, and it is getting past the point where it can be fixed. More and more people are going to not only be living with conditions that no one cares about, but there will be more that do not survive the US healthcare abuse.
@drmermaidfish1 Similar experience has allowed me some incite into your situation. First-just because someone has qualified as a "doctor" doesn't mean they have the empathy factor in their personality to truly serve well-especially when their manner causes hope to fade! Also, to desire that the chronic pain, at times unbearable to stop is the height of sanity, and when irresponsibly treated by your physician and with a history of failed pain control attempts, the idea of the end of life with it's freedom from pain starts to seem most reasonable. That is not being suicidal which is unreasonable, that is losing hope which is the beginning of despair. I have been there and maybe that thought will reoccur, but I have found there is ALWAYS a glimmer of hope, no matter how much pain has tried to remove it. It might seem baseless and irrational, but the desire to live is part of the human spirit and I gladly hold on to it, hopefully this might help.
@marcd2k
Apologies for the long reply but I have to say for me it was one isolated incident. I have had extremely good care. Because of my shoulder and neck pain my primary ordered X-rays and referred me to a pain management specialist she knew because of my history of cervical spine issues. After dealing with the insurance rules, restrictions and approvals for MRIs, the pain management specialist referred me to a neurosurgeon they knew. The neurosurgeon was able to evaluate the X-rays, MRIs and my symptoms and ordered one more MRI and blood work. He diagnosed an autoimmune disorder rather than a structural issue as the source of my symptoms and he referred me to a rheumatologist he knew. My rheumatologist in addition to diagnosing me with PMR, noticed blood work pointing to a blood disorder and he referred me to a hematologist oncologist friend where I was also diagnosed with SMM. My journey was longer than I expected, but each doctor provided a thorough evaluation and only passed me to someone else whose expertise was necessary to arrive at the correct diagnosis. Maybe I was lucky. Some doctors have professions and some have jobs. It's the same as any field of work these days.
@kjoed53 Thank you for replying. No problem about the length of your post, I do it as well, thinking I'll write a couple of sentences and end up with multiple paragraphs. It's good to hear you had a positive experience with multiple doctors doing what they should be doing. And I understand, like any other industry, there will be that 10% that are not. Unfortunately for me, I have not found multiple doctors that are still doing what they should be doing, with many giving up after their one test, one image, one exam. They say they do not know the answer to my problem, but they never call another doctor for advice or send me to them. It's "Don't let the door hit you on the way out".