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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 so sorry you’re going through this. Reading your post, I can understand why you’re feeling frustrated and abandoned.
A friend of mine went through a long ordeal with severe occipital nerve pain. After years of searching, she eventually found relief with an occipital nerve stimulator. I remember how hopeless she felt beforehand, and a year after surgery she wrote that she had finally gotten her life back. I know every case is different, but her story reminded me that sometimes there are options, even after years of dead ends.
You’re already doing something important by connecting with others here who have lived through similar experiences. Patient communities can be an incredible source of practical information, physician recommendations, and emotional support.
My husband receives treatment at Penn Medicine, and we’ve had an excellent experience with their palliative care team. They focus on improving quality of life and symptom control, not just end-of-life care. I don’t know whether a palliative pain consultation would be appropriate in your situation, but it may be worth asking about while you’re waiting for your revision surgery.
One thing I’ve learned as a caregiver is that, unfortunately, we often have to be our own strongest advocates. It sounds like you’ve been doing exactly that despite every obstacle.
You deserve better, and I truly hope your revision surgery brings you the relief you’ve been searching for. I’m attaching Julie’s posts in case any part of her journey is helpful or gives you a little hope.
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1 ReactionHi
I am so sorry you are suffering so bad the Healthcare in the US I thought would be better than canada. But the care in Canada is getting worse and worse being ignored by doctors not letting you get in when you have issues it's ridiculous what's happened to this health care system. I feel your pain I'm going through spinal fractures for the second time since radiation treatment in 2024 and the only pain meds they give me is Tylenol Extra strength I have to fight to get into the endocrinologist it's all wrong. I hope you find someone who cares and you get some relief soon.
@fightingbluehen69 I appreciate that. I guess after having gone through now years of failed treatments and now consistently being told doctors can’t help me anymore, I’m tapped out of energy and resources to continue fighting. It’s been a horrible week. I’ve been trying all week to get in touch with my neurologist to no avail to adjust my medication dose and given empty promises of getting a call back as soon as the doctor has reviewed my case. I’m not sure what timeline is acceptable anymore in human med but when I worked in private practice, even contacting a client 24 hours after they called with a serious issue like uncontrolled pain was considered unacceptable. For me it’s hard to accept substandard care since I am a medical provider and try my best to be better than the doctors I have seen for myself.
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1 ReactionThis is my second day and second post in this group. It is also the 7th day since I was in my neurologist office asking about a change in medication dose since I am having a horrible flare up of occipital neuralgia and I have called the office every day they were open, multiple times per day, and been told the doctor hasn’t reviewed my case yet. I called and complained to the manager. She was apologetic and said the doctor would call me by 5. It’s now 5:03pm and no call. I’m in pain that’s bad enough I should be at the ER. The only reason I’m not there is I live alone with animals and have nobody to care for them if I end up needing to stay. I’m pretty much nonfunctional. I’m screwing up at work which is really bad considering I’m also a doctor (veterinary surgeon). I saw my pain doctor yesterday and he blew me off. Said he couldn’t help but took my copay, wrote me a script for narcotics, and sent me away. Narcotics aren’t helping me much if at all. Neuropathic meds don’t really help either. I react poorly to most of them. My body and life are falling apart and I have no lifeline. I’m only 40 but I’m looking forward to the end of my life. This is not a suicide threat but simply a thought of relief for when the day finally comes to end my suffering. I would be a liar if I said I wasn’t envious of the patients I’ve put down this week.
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1 ReactionNeurology assistant finally called me after a week of silence and said the doctor wasn't comfortable adjusting my medications since I'm also on narcotics. He has had me on clonazepam for the last 2 years since I started seeing him so if he suddenly stops prescribing my medications and I go into withdrawal, I am going to sue. They acknowledged that I was in a lot of pain but their only solution for me was to go to the ER if it was that bad. No help whatsoever. Thanks a lot for absolutely nothing. I'm about ready to give up. Screw human healthcare. There is no compassion. That seems to go out the window once you're too old to see a pediatrician anymore.
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1 ReactionI don't trust doctors anymore. I've been to dozens, wasted thousands of dollars and now years of my life in medical offices, and I am not better for it. Now doctors just take my money and send me away without any effective treatment plan. I have geniculate neuralgia which causes my ear canal to feel like it is on fire 24/7. I have suffered with this for nearly 4 years and it took 2.5 years to get a diagnosis. I got my diagnosis from a telehealth visit with a provider in California who never even saw me in person- not from the providers who had me sitting in front of them. The only reason why I even believe the diagnosis is because it is the only one that even makes an ounce of sense. Every single treatment, from medications to PT to acupuncture to radiation therapy to brain surgery- every treatment has failed to provide even mild relief. Since the surgery, my pain has gotten exponentially worse and now other providers refuse to see me since my case is too complicated. I also developed occipital neuralgia post op, which is arguably worse than the condition I sought surgery for in the first place and was never discussed with me as a possible side effect of surgery before I went under the knife. It should have been since it is apparently a common side effect but I didn't learn about it until my diagnosis from another provider 3 months after the surgery. Now I am told my only option is another brain surgery with a high (50-60%) chance of failure since the first surgeon completely botched me up- like did the wrong procedure for my diagnosis and now for the other surgeon to go in and fix his mistakes, he will need to pick through scar tissue and there is a higher chance I will now go deaf or develop permanent balance issues because of this. I am currently trying to get legal representation to sue this doctor. Right now I am in the middle of a severe flare up of symptoms. I am not sure how it developed but my pain jumped from a 7/10 to a 10000/10 and has been this way for almost 4 weeks. I see pain management and when I brought up how disabled I was by my pain, he said there wasn't anything he could do for me but wrote me a prescription for narcotics. I sought help from my neurologist last week. I saw the nurse for trigger point injections, which also didn't help, and I asked if they could adjust my dose of meds. He thought this was a good idea but would need to talk to the doctor first since he had the DEA license. OK. So I waited 24 hours. No callback so I followed up. I was told doctor hadn't reviewed it yet but would get back to me in 24 hours. No follow up and then the weekend came. I suffered all weekend and then called back Monday. No follow up. I called again yesterday and was promised a call but still nothing. Today was one week after my question so I was pretty pissed. I called the office and complained to the manager. She apologized and then said the doctor would call me by 5pm. It was after 5 and still no call so I was going to give up for the day. Then I got a call at 5:20pm. It was the medical assistant. She said the doctor was not comfortable prescribing benzodiazepines to someone on narcotics (to explain further- I have been on both tramadol and clonazapam for my condition for the last 3 years and this neurologist was the one to prescribe the clonazepam for 2 out of the last 3 years. He was aware of what medications I was already on and now it seems that he plans to just cut me off completely because I asked for an adjustment in dose since I'm in a terrible flare up of pain??!). The only solution offered to me was to go to the ER- no help from this doctor at all. I hung up frustrated and in tears, not that anyone gives a flip. I tried to find a warmline to talk to someone since I'm alone and my friends neither check in nor care enough to ask how I am. Stupid AI led me to some mental health website with a phone number. I called it hoping for support and they kept me on hold for over an hour just to be told about their mental health retreat program, which I had no interest in. I asked if I could just be directed to some type of peer support or a warmline because that was the only support I wanted for the night. The guy said he would look into this and call me back in a few days. I guess I don't matter. I'm honestly done. I hate life. I hate people. I hate everything and I wish the world would implode and take everything with it. F this world.
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3 Reactions@ drmermaidfish1
Reading about your experience pains me. It's becoming a common thing too. If we don't demand that treating physicians are to decide primary care for patients and also determine the necessary treatment protocols for that patient (rather than a doctor employed by an insurer that you never see) I think this problem only gets worse; akin to a business model for providers
@truthseekr7771 in my case it was the provider. Not the insurance. My neurologist could have taken 10 minutes to review my case since I had been waiting a week. He said he was going to suddenly cut off the clonazepam he was prescribing me instead of increasing it when I’m in the middle of an intensive flare of symptoms, which is a breach of duty of care and I’m willing to take this case to the cleaners if I need to because I’m sick of paying for care I’m not receiving.
@drmermaidfish1 also it’s not the lack of increase in meds I’m angry at. It’s the poor communication or concern for my symptoms, along with a threat to just stop meds that I’ve been on for nearly 3 years that are 1) dangerous to withdraw from suddenly, 2) not recommended to even taper during a pain flare due to a he physical and psychological stress a taper plus the flare up can cause 3) no other solution offered other than to to ER.
I had an issue with a doctor not getting back to me and not sending in a prescription only to find out that it was one receptionist not passing on the information whenever I called. I called back on a day she wasn't there and had it resolved. When I read reviews for doctors, I often see where patients have issues with the front desk and support staff.