Chronic Pain members - Welcome, please introduce yourself

@melissamc
I understand your pain and frustration completely. I'm also experiencing chronic pain that no doctor can address, which has been about 10 top surgeons in NY. Started with TLIFT Was on hydromorphone for years, tried all available biologics, PT and medical massages. Nothing has helped. Doctors say either a complete spinal fusion, SCS or nothing at all. No guarantee on outcomes. Currently trying LDN, Celebrex and arthritis strength Tylenol. Feel like I'm 90 but only 70. The frustration and depression is overwhelming at times. Hang in there. My mantra is 'things can always be worse'

Good morning. I'm 65. Postpartum depression at age 31 with loss of thyroid function
Lumbar stenosis with fusion L4L5S1S2 in 2016. Have been on Cymbalta 90mg per day for 25 years. During a medication change 2+ years ago experienced extreme anxiety and developed excruciating head neck and shoulder pain - no treatment helping past 1 or2 days. Finally saw my old pain clinic Dr who called me "a high functioning Fibromyalgia sufferer" in too good shape to be a pain clinic patient. Suggestions - aerobics 3x a week. Thanks
LDN - almost ready to begin 2nd month doubling of dose.
Went back to acupuncture after 15 years. 1st visit minimal relief. Last visit after a very painful needling and tearing of my scalp fascia and and brutal manual fascial release, I am 50% better still 4 days later. This is a minor breakthrough.I have been ignoring pain since at least 2008 so am still fully mobile. Tried Gabapentin 3600mg / day years ago. No relief no side effects. No medication helps the pain in any way so don't take analgesic.
Thank God for heat and cannibis. Judy 18

@lchop
I understand your pain and frustration completely. I'm also experiencing chronic pain that no doctor can address, which has been about 10 top surgeons in NY. Started with TLIFT Was on hydromorphone for years, tried all available biologics, PT and medical massages. Nothing has helped. Doctors say either a complete spinal fusion, SCS or nothing at all. No guarantee on outcomes. Currently trying LDN, Celebrex and arthritis strength Tylenol. Feel like I'm 90 but only 70. The frustration and depression is overwhelming at times. Hang in there. My mantra is 'things can always be worse'

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I am Shawn Smith. I have suffered from persistent facial pain and persistent headaches for approximately 25 years. I had a couple turbinate cauterization procedures and two invasive sinus surgeries approximately around 1999 to 2001. It seems like this began after those procedures. It has become debilitating to the point that I am on disability now. I am still trying to get it to go away. I recently requested an appointment at the Mayo Clinic but was rejected. I am basically a walking dead man. I am very confused at what to do. I am currently seeing doctors in Omaha Nebraska. I have taken about every medication imaginable many of them made things worse. I have a Reed Procedure neurostimulator implanted that helped with pain I had daily on areas of my head but it did not help the pain in my face. I had a nerve block done into what I believe is called the gasserion ganglion which stopped the pain completely for a couple days. I was then sent to a neurosurgeon that ordered a ct scan. He then diagnosed me with bilateral trigeminal neuralgia and scheduled a micro vascular decompression. But then upon seeing him at another appointment he said the pain location seemed to be more of what’s described as atypical or idiopathic facial pain. I’ve also heard doctors refer to this as type 2 trigeminal neuralgia. I ended up seeking an opinion at the Cleveland Clinic. They said at that time it did seem more like atypical facial pain due to the way the pain was presenting itself. I switched to a medication called lucosimine, but the pain ended becoming more severe and almost seems like it’s presenting itself as the form of trigeminal neuralgia where it hurts to even touch my face and head. They recommend a MRI and MRA be done. So I’m having the Reed Procedure neurostimulator removed because there are metal lead wires and a battery which are not compatible with being put into an MRI. The Cleveland Clinic has sent orders to a hospital in Omaha Nebraska to do the MRI and MRA after the neurostimulator is removed which will be about mid May. It will be interesting to see what this shows. I was hoping to have it done at the Mayo Clinic instead but my appointment request was rejected. I have an extremely complicated case that seems quite out of the ordinary so I’m not sure why my request was rejected so easily. I feel like this chronic pain needs to be addressed by the top doctors available. And I had read that with facial pain cases a 3 Tesla MRI is done with the correct protocol for my condition and that also the Mayo Clinic does use an advanced 7 Tesla MRI at times if they feel a more advanced level of imaging is necessary for difficult medical conditions which includes issues involving the trigeminal nerve. The Cleveland Clinic did say they believed there was a likelihood that the trigeminal nerve pain could possibly have been caused to the trigeminal nerve from endoscopic the endoscopic sinus surgeries. But I guess it won’t be known what is going on until the MRI and MRA are completed and I thought the Mayo Clinic probably would offer the best imaging available for this complicated debilitating facial pain I am experiencing. I was hoping getting medical attention and treatment from them would shed more light as to what is going on. The doctors I have seen at other clinics have discussed surgical procedures but it seems unclear as to what is actually going on and as to whether the surgeries would be beneficial or that there is a grim possibility that they would cause the pain to be worse. I’m desperate for help. I am in tears because there isn’t a clear answer about what to do. I see a local doctor in Omaha Monday to discuss the possibility of a pain pump. I’m not sure if this is good or bad. I guess I’m getting the MRI and MRA in Omaha and will see what is discovered from those images. Having these done is what was recommended by the Cleveland clinic. I guess I will be proceeding with this for now. I’m not sure what will happen. I’m wondering if I should have my neurologist write the Mayo Clinic and try to get them to examine my situation or possibly see if the other Mayo Clinic locations in Arizona or Florida would accept me as a patient. I’m living with a lot of fear that I will never have any kind of life again and have a fear of ending up living with financial hardship because the pain gets so debilitating I can’t work normally. This has caused enormous problems within my family. My sister has cut me out her life because of it. Many relatives and people I know make degrading remarks about me. I have been verbally and emotionally abused by people because of this and have been physically abused as well. I feel hopeless. I live in isolation and have lost so many friends. It almost seems like there isn’t much of a reason to be alive anymore. I’m hoping others can offer some advice and that the Mayo Clinic might possibly read this and agree to examine me to diagnose this correctly and possibly agreed to treat this accordingly.