Out of Options | Losing Hope

I’ll write more later but is someone experienced with the following. In 2012, after a dozen disastrous dental appointments I was diagnosed with trigeminal neuropathy, SUNCT, acute migraines or more. Over the next five years I endured 20 procedures, surgeries, close to 10,000 pills a year, $1 million in loss income and out-of-pocket medical expenses. I was declared fully disabled by Social Security. My doctor was a very prominent pain specialist who spent a lot of time stabilizing me. In the same five years I saw him over 75 times, plus another 125 other doctor appointments. I can’t even explain the hell. In late 2016 it was decided, by a team of doctors, that there was nothing left to try, I was wasting my time continuing looking for a miracle. I was not a candidate for either brain surgery. My spirit, soul and mind were in great need of repair and I should go learn to live the new normal. I opted to take so time off from doctors. I lost my career, home, friends and family. Broken, I decided to move 800 miles North of Los Angeles, on the Ocean, in the Redwood Forest, about 90 miles South of Oregon. Everything was set. Two months before I moved, out of nowhere, my doctor unexpectedly died, turning my life upside down. His associates got me ready. I had brain stem, cervical, 3D imaging and a million tests. My neurologist said all good. Four days later I had my upper left molar pulled under sedation by the Oral Surgeon who did five surgeries on me.

Now back up with me a second. In 2005 and 2009 I had a cervical MRI as a spur at C5 was bothering me. Soon after started my nightmare. During the five years of dental, tn and migraines, I complained often of pain in my left shoulder and neck. 100% of the time I was told it was just the pain from contorting my neck, tremors and my body dealing with pain. I also had pain from the bone spur often so I listened.

At no point in time, ever, during dozens of episodes the doctors and dentists never, ever protected my neck. Most of the treatments for SUNCT and TN actually hurt and wear down the cervical spine. About 3years ago, things started to change. I was falling, had no balance ( failed test), had a high-pitched ringing in my left ear 24/7 (failed hearing test), my vision was blurry, I couldn’t pick up things I dropped on the floor and I was having trouble controlling my bodily functions. My headaches were morphing into something, my left arm and dead were so weak I couldn’t lift a cup of coffee. The pain in my neck, behind ear and 1/2 my throat (I almost choked many times). With all of this, and my tremors and radiating pain from my shoulder blades and neck, never, ever, did anyone suggest a cervical MRI or take any protections. I saw over 30 doctors at the best places and not one person caught it. No one. Finally in 11/2016, preparing to leave I had a cervical and was told it was fine. It wasn’t for someone with TN, it wasn’t compared to the old ones and it took a little time for me to get copies. Four days after the MRI, the tooth cane out. This can be the equivalent pressure as whiplash.

Now I started do my own research. I realized I had Cervicogenic issues that were dismissed, even as I was screaming the exact symptoms I now know were cervical. After dozens of procedures, for the wrong pain, after the extraction my cervical spine said “enough.” This as I was preparing to move without my doctor. I believed chiropractic care, today, meditation and healing my cervical spine, might actually give me my life back. I left with hope, to a very rural area, even thought my neck and shoulder were screaming.

It was January 2017 and I was settling in. I could not find a local doctor to help with medications, and since my doctor passed away, I stopped cold after five years of 8 Percocet 10/325 a day. Let’s say the next two months I thought I would die. A new MRI after the extraction showed C5 shoved into my spinal column on both sides, encroaching my CSF, severe bilateral stenosis and a doubling of small herniations and bulges, in areas critical to trigeminal issues. I was so screwed. Very rare, but if you have TN and facial pain, plus cervical issues, when one flares, they both do, converging in the neck, causing an unlivable pain and seizures. I was alone, no doctor, no pain diagnosis and realized I was misdiagnosed, every week triggering the cervical spine. This started at the time, about two years into then, five years. I think it started, but unrelated, after my first Botox for migraines. I know I got injections at base of neck.

I have traveled three times to see an expert. I’m back on my meds. He kept most diagnosis, but added Cervicogenic headaches, previously undiagnosed. He said forget tests for now. Due to the year of constant pain, he said he could not move my neck, I was in constant spasm and my head was leaning so far forward, he was sure every foraminal was closed, and that I needed to work with an upper cervical PT, no chiro. He also suggested steroid neck epidural. Masking pain got me here. I saw the neurosurgeon who said the same thing. Back home they wanted to prep me for emergency neurosurgery.

The specialists agree I have a trigeminal/cervical convergence. There is nothing worse on earth. I have not left home in 11 months but doctors. I am told I need a University level team working all together, as I start year seven confused, scared, broke and in agonizing pain, unable to focus on or complete any task.

I don’t want shot in neck as they don’t know what it will do to TN. I am down for PT and posture. With these changes I can’t do anything I wanted. They seem to not grasp that the treatment for cervical severely inflames my face, and the treatment for my face, severely inflamed me the top of my head to my waist. I also have had a burning horrible blister, shingles-like infection on my scalp. Main sore dead center. Blisters in straight line above right eye to back of skull.

Someone. Anyone. Help me understand what happened and what to expect. I cannot have chiropractic care, until whatever happened is fixed.

rscottb, I wish I had answers to your questions. I don’t know anything about this topic but I am sending you warmest wishes for solutions. It truly sounds like you’ve been very strong so far and I am envisioning you carrying on strongly with the search for solutions. The sudden stop of Percocet (after your doctor passed away) sounds terribly harsh – if it was helping before, can a new doctor not prescribe this to you again? Would it be possible for you to seek out specialists outside your current area?

Sending you positive vibes and strength.

I know you do not want sympathy.
I am thankful that you have put that info out there.I believe compression in the neck can really cause problems.I had no idea how much.
You have been medically screwed around with.
My sister has those oozy blister things on her scalp.She sprays a bit of peroxide on them.She thinks she may have lupus-but again the medical profession does not agree-but they don’t give her any hope either.
Have you been put on prednisone at all?
And can you try medical marijuana?
I ended up with a straight line of blistery things across my chin-from the bad side to the good.
Would one of those Dr. Hos neck collars help a bit?You pump in as much air as comfortable.
I know I sound like a little kid trying to help someone with a problem that even the pros are scared to touch.
Mayo clinic-could they help?
The one on the good side is staying and I am being referred to a dermatology clinic to check for cancer,

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I’m one of the lucky ones that only has TN (that’s lucky?) and the meds work for the most part. I do have to ask you if you have tried a upper cervical chiropractor? They are truly miracle workers. Not just a chiropractor but an upper cervical chiro. You can find a list of them if you google them. I have one in Camarillo, CA. Wish you would have posted while you lived in LA but I’m sure you can find one near you. God bless and prayers to you.


I think I’ve probably answered before, but suppose I haven’t,
may not have.
I’m a physical therapist with an interest in TN. Had a patient today, seen her before several times, not actually my patient, but on further questioning looking at he history, migraines, ear ache and facial pain, no longer mentions these unless we ask because addressing her neck pain sorts these issues. To her they are secondary. I was surprised at these symptoms, still pervading , as she doesn’t mention them short of pressing her, hey she considers it to be her neck and to date she has been correct.

Not sure about your chiro who can’t treat you, but most physical therapists of any sort have options beyond the snap and crack, if that is what they were intending and refused.

Your chiro says they can’t, I say I wouldn’t have a job, short of patients with trauma, if they followed;
I’ll lose weight, excess weight increases inflammatory markers
I’ll eat fruit and veg, by the bucket load.
I’ll ensure my vitamin D levels are optimized.
I’ll keep alchohol to a minimum- very important,
I’ll drink enough water,
I’ll address anybody, my boss, girlfriend, wife, in laws, ‘friends’ who are giving me crap, albeit in a constructive manner.

Add addressing a decent gut bacteria balance, I reckon anyone would be doing their bast if they were ill, and I’d be out of a job. Fortunately?? few listen, crap it’s my fault, no way!! I’m ill in the past and my Doctor sorts me.

(Sure not always the case but a good starting point)

Ellen5 in response to your question/ mri, yep something you already suspect. Doesn’t mean it is.