u/Frigatebird26

I’ve been posting on here about my burning ear pain. I had a failed microvascular decompression surgery at Mayo Clinic for presumed geniculate neuralgia about 5 months ago and all I got from it was increased pain in my ear and burning in the back of my head that wasn’t there before. I saw another neurosurgeon in March since the one I saw at Mayo was clueless as to why I was in so much pain and is basically told me I needed revision suegery and if that failed, complex pain management was my only option. I woukd really like to know what the fuck complex pain management is because I’ve been to at least half a dozen pain doctors, including ones at big institutions like RUSH University and Northwestern, and none of them could help me. I had a follow up with this surgeon to discuss further and he told me going to a University Pain Center might be how I would access it. I told him I had been to RUSH and Northwestern and his reply was, “Oh.” Nothing after that. I don why or how a doctor can make a recommendation like this and then provide no means for a patient to attain that. Northwestern and RUSH are in Chicago. I now live in Florida. The surgeon I just spoke with was at Tampa General. I know UF won’t deal with this. I’ve asked. They say they don’t treat my condition. I’m over my miserable life.

I’m in a lot of pain and have no support system. My “friends” have all left me for dead. Use distance as an excuse to not be there for me, not even in an emotional sense. Makes me angry because when my pain is at it’s worse I’ve still been there to message them, check in, even send gifts. One friend said she would help me pay for a cleaning service but bailed on me. It hurts because I needed the help. I’m about ready to cut her off entirely. Nobody checks in on me. Nobody at all. I’m always the one to initiate the conversation. Obviously they don’t care.

I’m a newly turned 40 year old female with a history of bad friendships. Part of the problem may be I never really learned out to make friends growing up- my parents pulled me out of public school after kindergarten and I didn’t go back until third grade. My family life was fucked up (parents separated, lived with my dad and his evil girlfriend who was rude and abusive- not an environment conducive to friendships).

When I went to college, I thought I found friends but they all disappeared shortly after they graduated. I went to veterinary school and thought I found friends. We were still friends briefly after graduation. Then my mom died within 5 months after my graduation and they all bailed. When I contacted one of them and tried to ask what happened, her response was she just couldn’t identify with my situation. Ouch.

It took a while but I met someone through an online vet support group when I was going through some career challenges and I was in a bad romantic relationship. I thought we were good friends for a while. We would call each other, have “movie dates” where we would simultaneously watch the same movie while being on the phone and chat about it, then 4 years into the friendship my health started to decline and she became more distant. Finally she called me up and said she didn’t want to be friends anymore and hung up. It took me a couple of years to trust again but then I started working in an exotics specialty practice. I was very lonely but guarded due to my previous experiences.

I met a couple of techs that I had become friends with and I had befriended a couple of vets. I also befriended one of our clients. I worked at this practice for 4 years but my boss was awful to me and I was constantly taken advantage of and abused (she told me I was too slow in surgery but I barely had surgery appointments scheduled to practice, she told me everything I did was wrong, called me an idiot to my face in front of everyone- that was really the last straw). I left the practice about a year and a half ago and moved out of state to work in a zoo and a wildlife center. I’ve yet to find anyone I’m comfortable being friends with here. My health has been horrible and I’ve tried to maintain contact with my friends but my texts often get ignored. I’ve had one of them say they have no time to talk to me. That same friend promised to help with a cleaning service for me since I’m strugglng to keep my house up but bailed. That’s not the first time I’ve been offered help and been stood up. I’m starting to think authentic people don’t exist.

I’m dealing with burning pain in my ear canal. I’ve been dealing with this pain for almost 4 years now and not a damn thing has helped me apart from spraying biofreeze in my ear canal or applying an ice pack. Even then, there are limitations. The more I use biofreeze, it actually contributes to the burning sensation. I’ve been to every doctor imaginable and multiples of the same specialties. After seeing 4 ENTs, 5 neurologists, and an oral surgeon, and at least a dozen MRIs of my head and neck later, all I can really confirm is 1) this is NOT a primary ear problem, 2) I do NOT have TMJD, and 3) I am dealing with some type of neuralgia, although it’s inconclusive as to what. I’ve had a few doctors suggest geniculate neuralgia, which somewhat makes sense due to the type of pain, but all they have to base it on is my symptoms. All my MRI scans show is arthritis in my neck on the left side (my left ear is the one that hurts). I’ve tried everything- neuropathic meds, opioids, physical therapy, radiation therapy, pot, topical lidocaine, topical ketamine (cannot afford infusions at $1000 a piece), even brain surgery at Mayo Clinic last December, which all that did was make my pain worse and give me burning pain in the back of my head that I didn’t have before. I went to see probably the 5th neurosurgeon I had seen since this started since my quack doctor from Mayo Clinic couldn’t answer any of my questions, and per this surgeon, if I actually have geniculate neuralgia, the doctor at Mayo took completely the wrong approach- he didn’t cut the nervous intermedius. This really angers me because I had begged the surgeon to do this preop and trusted him, and he failed to do what he should have done. Per the other surgeon I saw, in his words, I would literally have to go in and be their guinea pig in a lab experiment to see if going back in and attempting the correct procedure would even help me, and the chances of it working would be a lot lower now due to scar tissue. So- what the hell am I supposed to do? Live in agony? I’ve been to so many pain specialists and they’ve all blown me off since my case is apparently too hard for them. I scheduled with another neurologist per recommendation of a patient with a simlat issue. I wasted a $25 copay to have the pric not even let me get in 2 words. All he did was blabber on about how medications have side effects and he couldn’t help me. He wanted to refer me to yet another surgeon. No. I’m tired of this shit. Is modern medicine still so primitive that nobody can help someone with a burning, stabbing pain in their ear? I’m at the point where I’m considering euthanasia overseas because I can’t live like this and every single doctor I’ve seen has failed me. They all tell me theres nothing they can do and they give me no solutions. I just want to be put out of my misery. I’ve suffered enough. All I can say is fuck doctors. Fuck modern medicine. Fuck chronic pain. I hate them all.

I waited months to see Poppy perform, like a lot of people did. She got on the stage and they kicked her off because of the weather. I understand keeping people safe but they didn’t even let her come back, not even for a few songs. She looked as upset as her fans were. I would understand if she didn’t come back to Rockville ever again.

I don’t know how this happened. My pet was in a locked cage without any openings. But my baby ackie escaped sometime within the last 24 hours. I just don’t get how it happened because the cage was locked. I’m frantically trying to search the house for a little 6 inch lizard now.

I’m not sure really whom to talk to. I can call a law office but I don’t know what type of lawyer to call since they all deal with different things. I‘m self employed and had purchased a plan through a company called 1099workers.com. The company sells group insurance plans to self employed people but how they go about it is they have you sign a “new hire packet”, including an I9 form, they deduct money from your bank account, listing it as “payroll”. At the end of the year they issue a w2 form that says you earned $0. I bought the plan initially since I’m dealing with a lot of painful health issues and the marketplace plans were not great value in my area for the level of coverage I needed. The whole thing seemed kind of fishy from the beginning but I felt backed into a corner because of my complex conditions. Last May, they unexpectedly said they were terminating everyone plans since the company (BCBS of Texas) said they would not allow any members to keep their plans since most people didn’t reside in Texas. They gave us maybe 3 weeks notice of this and I was pissed, but they changed it to a PPO plan through a company called GMS connect that used the Cigna network, and it had similar coverage. They said since they changed plans in June last year, open enrollment would be in June this year. The plans were on the calendar year so the deductible reset in January. I assumed I would be allowed to keep my current plan- I was halfway to meeting my deductible. Then I got another notice, again, with maybe 3 weeks notice, saying they were changing the plans in May instead of June. Instead of letting people keep their plans, they wanted to switch to crappy Anthem Blue Cross plans that are bronze level with ridiculous out of pocket limits and only 50% coverage once the deductible is met. They wanted between $900 and 1200 per month for these plans. At that point I decided it wasn’t worth it to keep buying from these people so I wanted to go with a marketplace plan- not great coverage but better than these plans. 2 weeks ago I called the marketplace and they wanted a letter stating my loss of coverage. I called my insurance and they said 1099workers hadn’t even told them of the plan termination so they had to be the ones to write the letter. I called 1099workers multiple times and wrote multiple emails- all mostly unanswered. The one time someone got back to me she said she didn’t know where they were in the process but they would get back to me soon. This was last week. We were getting close to the end of the month so I emailed 1099workers demanding a letter now since I have significant medical needs and appointments set up. I got an email back saying I would get a certificate of loss of coverage from the insurance company on Monday. I didn’t get it until Tuesday and tomorrow is the last day of my coverage. I’m pretty upset because if I end up canceling on of my appointments, it may be months before I can get back in. This is really unacceptable and I just wanted to know what my rights are in this situation? Is 1099workers even a legal business? I feel like maybe they are switching companies mid year consistently to avoid getting caught and/or so they can get more money from people. I’m worried I’ll be without insurance for who knows how long. My life is already intolerable due to my pain so this is really infuriating.