I Have to Drive 6 Hours for Pain Care

By Bailey Parker, Guest Columnist

I feel so alone and isolated. There have been times I wanted to die, but my 5-year old son keeps me going. I get up every day for him.

About two years after he was born, I had a car wreck. I hit a coyote at 60 mph and ripped the radiator off my car. The doctors told me I had the spine of an 80-year old and needed a double level fusion in my neck.

I was 34 then and in tremendous amounts of pain. But after reading online stories in spine health forums, I was skeptical about the surgery. Everything told me to wait. So I did, for a year. I saw three surgeons and a neurologist. They all told me to have the surgery.

I live in a small city in southwest Colorado. When it comes to opioid pain medication, all the doctors here seem to have taken the stance, “We just don’t do that here.” The nearest city is Albuquerque, New Mexico, which means a 4-hour drive for me across state lines, or a 6-hour drive to Denver over mountain passes.

Before my surgery, one of the doctors of orthopedic medicine prescribed my pain medication. For two months, I was able to work again and was beginning to get back on my feet. I remember thinking at the time that I didn’t want to take medication for the rest of my life, but the fusion sounded worse.

The third month in I called for a refill of my medication. They told me no, but wouldn’t say why or give me a follow up exam with the doctor. He was too busy and couldn’t see me for a month. I waited one excruciating month and went to see him, asking what happened.

BAILEY PARKER

He had looked at my prescription records and saw a prescription for narcotics from another doctor for when I had cystic fibroids on my ovaries. It was not the same pain medication as what he prescribed me, and I didn’t even know they were the same type of medicine.  

Even though I had a broken neck, he did not feel comfortable prescribing to me anymore. His office then took 6 months to get my medical records sent to my primary care doctor. I had to physically go in and yell at them that I was about to have major surgery. This was the first time I felt treated like an addict, but not the last.

I went to my primary care physician and explained what happened with this other doctor. We have a very good relationship. She knows all of my medical history. She handled my pain medication before my surgery but was very clear that she would not do it for an extended period.

I never take more medication than prescribed. I am not an addict. I do everything they tell me. I was walking and doing yoga every day, just as the doctors recommended. I took my vitamins and a fruit shake every day.

After the fusion surgery, things just didn’t feel right. I was in tremendous pain again and this time there was more of it in different places. I told the physician’s assistant at my surgeon’s office and he told me to just get off all the drugs. He said it would help. He told me I would be fine. I wasn’t.

I struggled for another month before I demanded to see the surgeon. He told me I would benefit from OxyContin and gave me a week’s supply. For the first time since my accident, I was able to work and properly care for my son. My depression lifted. But when I called to tell them that I was doing good on the medication, they said it was time to go back to my primary care doctor and any further medication would have to be prescribed by her.

I went to see her, but she still did not feel comfortable handling my care and referred me to a pain clinic 6 hours away. I was in despair, thinking that I had crippled myself for life and would lose my job, my son and my husband. All of these relationships were strained at this point.

The pain clinic helped me get my life back. They are compassionate and good to the people that come through their doors. It’s a common misconception that pain patients want to take medication. We don’t. We just want some of our lives back and pain medication helps us have that.

A year after my fusion, the surgeon met me again. The fusion had failed, and he wanted to do a revision that would be more painful than the first. He also told me he thought my pain might be caused by fibromyalgia. I’ve never been so angry. I have pain because of my broken neck. Pompous arrogant doctor with no aftercare.

Here is my dilemma, I’ve gotten better care in a big city, where they do not treat me like an addict. I’ve gotten my life back. At first, I was able to go there every three months to get my medication, but with the laws changing, they now say I have to go every month. Driving 6 hours both ways with a 5-year-old and a broken neck is hard. But quality of life and pain are great motivators.

My experience has left me with so much anger towards doctors in my area. It seems their Hippocratic oath has been trumped by the opioid crisis and fear of administrative action. I do not tell people about the medication that helps my quality of life for fear of judgement and stigma. Unless they have been through chronic pain, they simply don’t understand.

I wouldn’t wish this on my worst enemy.

Bailey Parker lives in Colorado.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Doctors Won’t Treat My Chronic Pain

By Leanne Gooch, Guest Columnist

I have never been addicted to anything.

I feel the need to preface any conversation about my chronic pain with that statement. I have degeneration in my neck, arthritis, spinal stenosis, failed back surgery syndrome, and some other names that have been thrown into my medical charts. 

A layperson without chronic pain would wonder why I feel the need to document every boring detail of my health history. It’s because I’ve had to explain every minute detail to each and every provider I’ve seen. For 20 years!  

Initially, when my pain started, I had a good primary care doctor who tried hard to find and treat the cause. He prescribed pain medications and sent me to many specialists. But after injections, physical therapy, rehabilitation, etc., he became the first in a long line of doctors who would not treat me as a pain patient. 

I wasn’t considered “chronic” until the 10th year. I learned during that time that women are viewed by the medical profession as weak for reporting their pain. I have seen the faces of both men (doctors) and women (nurses) who judged my pain story as being overly dramatic and embellished.  

I was eventually sent to a hotshot, top-of-his-game neurosurgeon. He said I had degeneration in my spine that they would normally see in elderly patients, 60 or 70 years of age. I was told a surgery would fix me all up. They would cut, put some donor bone in, some screws to hold it all together, and that constant aching pain would be gone!

I signed on the dotted line. I was only 25 years old. Of course, now we know those surgeries are a very bad idea, especially for someone so young, because even if they’re effective in the short term, all that hardware eventually leads to further degeneration with age. 

I had a spinal fusion, was patted on the head and sent my way. In follow-up exams with the surgeon, I was told everything was perfect and that my pain would subside when I healed. “Go live your life,” he said.

LEANNE GOOCH

Yeah, not so much. I spent the next four years in even more pain and was dismissed by no less than six doctors, who claimed that because my x-rays showed everything was fine, I must be fine. I didn’t need further treatment. I didn’t need pain medication. There’s no way I could be in the pain I claimed to be in. 

Eventually, I got in with another hotshot surgeon, but this time it was at a hotshot hospital! They finally unearthed the fact that my fusion never did fuse. I had another surgery, but there were complications. They said my body rejected the donor bone. The bone would have to come from me, from my hip. They would need to cut the front and back of my neck, and my hip. They’d also put in more screws, metal plates and a metal bracket. 

The second surgery was not successful in ridding me of any pain. 

I was back on the merry-go-round of trying to find another doctor. In the interim, I’d gain and lose jobs due to whatever had taken up residence in my once amazingly functional body. I’d gain and lose medical insurance as well. Needless to say, I also went into deep and terrifying medical debt, while also being denied pain treatment. I was ineligible for individual policies because I had a pre-existing condition. 

I was forced into taking antidepressants when I didn’t need them. I wasn’t depressed, I was in pain. I was also forced to undergo counseling twice; both times I was dismissed after one visit because it wasn’t a mental issue I was dealing with. I was too embarrassed to properly express my pain levels. Forced to downplay how desperate I was for pain relief. 

I was even turned away by receptionists, who flatly and rudely said, “We don’t see or treat pain patients.”

That’s a short synopsis of why I am where I am 20 years later, essentially bedridden. The pain doesn’t allow for restful sleep. I can feel my health disappearing. I now have weight issues from hypothyroidism, no appetite most of the time, insomnia that doctors won’t treat, and very high blood pressure. 

After 18 years, I finally got to a pain clinic, as they call them now. The doctor has two physician assistants, one who believes everyone is a drug addict and one who wants to do a good job, but whose hands are tied by government guidelines and overreach. 

I am under-treated by a long shot, yet I am harassed by the pharmacist every single month. I use one pharmacy and one doctor, but still run into denial or delay getting a prescription filled. I had to explain and essentially beg the pharmacist to get a small script filled after my most recent invasive surgery for a spinal cord stimulator. 

Four months later, I’m still in tremendous pain and have a nearly constant tremor in my right arm. The stimulator seems to hit on a nerve and my muscles seize up, the pain rising to levels that I didn’t know a human could withstand. It’s awful. It’s painful. And I am under-medicated because of criminals I never had a thing to do with. 

I have been told that my pain will never get better and can never be cured. It will only get worse as the degeneration continues. Wishing for it to be over is a pervasive daily thought. I have to work diligently to chase those thoughts away, so as not to fall prey to giving up.

My doctors can’t or won’t treat me because my chronic pain contributed to all the addicts all over the world. I’ll admit that’s a ridiculous statement when they admit they’ve gone too far in denying me proper medical care. 

I am 43 years old.

Leanne Gooch lives in Missouri.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Living My Retirement in Pain

By Marleina Hampton, Guest Columnist

At the age of 66, I never thought I would be living my retirement life in pain.

At age 13 I was diagnosed with scoliosis, a curvature of the spine. The choice was made that I would wear a cast from my collarbone to my pelvis in order to "hold" the spine straight. Surgery was not an option.

During my late 20's, my back started to bother me and by the time my 30's arrived, I was in pain after standing or sitting. When I moved to California in 1990, I started looking for ways to treat this pain that was getting steadily worse. I did physical therapy, epidurals, prolotherapy and every other office procedure known to man, without success.

In 2003 when the pain was so bad I wanted to die, I had my first back surgery, which gave me some relief. But it wasn't long before I was suffering again.

Fast forward to 2012, I relented and had spinal fusion surgery at Cedars-Sinai Medical Center. My back is now fused from T10 to S1, with two titanium rods and 20 screws.

My doctor told me that I would be on some type of pain medication for the remainder of my life. I saw several pain management doctors and finally asked my primary care provider if he would take over my pain management.

MARLEINA HAMPTON

In 2015, my husband retired and we moved to Prescott, Arizona. Little did I know that my nightmare was just beginning! I couldn't find a doctor who would accept me as a patient!  Prescott has a high number of addiction recovery homes and the pain management doctors refuse to accept appointments without a referral.

I spent weeks trying to find a doctor and was told by medical professionals that they are not comfortable having me as a patient! Just recently, I drove almost 2 hours through rain, ice, and snow to see a pain management doctor in Phoenix. I thought I would receive a higher level of care in a larger city. But when he found out that I was not a candidate for epidurals, he said he wasn't comfortable having me as a patient. That his practice did not prescribe drugs!

In tears, I called my doctors in California and they too were appalled that I was being treated this way. Never in my life did I have a problem receiving medication.

I finally found a doctor who agreed to prescribe pain medication for me. Now I go in every month to pick up my prescriptions. I was told that my doctor continues to receive emails asking him to cut down on the number of opioid prescriptions he writes. He knows what my life would be like with pain medication and said he would fight for me.

If I should be denied pain medication, I will probably join the ranks of many before me who have taken their lives because they no longer can cope with the pain. Every month I wonder if this is the month that my doctor will get tired of the battle. This is not the retirement life I had imagined.

Marleina Hampton lives in Prescott, Arizona.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Wear, Tear & Care: Recovering from Spinal Surgery

By J.W. Kain, Columnist

For those of you playing the home game (i.e. following my blog), I’ve been recuperating from a cervical discectomy and fusion of C4-C5. That was February 19. I’ve been recovering in an amazing fashion, much faster than my first fusion of C5-C6.

Just north of a month later, I also had thoracic injections at T-11 through L-1. I was far more scared of this procedure than the fusion -- and I’ve had injections before, so it was nothing new. I knew exactly what was going to happen, but I didn’t know how my body would react. Why? Read on.

My Abbreviated Back Story

My injuries have followed a strange road. When my mom’s car was stopped in traffic in 2004, we were rear-ended at 65 miles per hour. I was seventeen. I broke my spine in four places: T-11 through L-1, but also a facet joint that wasn’t found until a year later when it had calcified over a cluster of nerves. That’s why every movement in my midsection causes pain.

Nine years later, my car was rear-ended again. This led to my cervical and lumbar issues, the two fusions, and a frightful double-injury to my thoracic region. We haven’t touched that area since before the second accident because every procedure known to man (shy of surgery) had been attempted, and they generally don’t do surgery there unless you can’t walk. Plus, my neck was being very loud, so I had to deal with that before opening another can of worms. My doc decided to start at my head and work our way down from there.

My pain management doctor is incredible, amazing. Sympathetic, and smart as hell. Even so, in this current political climate and with the CDC’s asinine new guidelines, I have become afraid of the medical system in which I am firmly entrenched. Let’s discuss why.

This was taken mid-February. We’ve come quite a long way in a short amount of time. Now the hair is basically a pixie cut instead of the Furiosa.

The CDC Is Actively Harming Chronic Pain Patients

Normally I don’t write about the government. I don’t write about controversial issues because I don’t like arguing with people in the comments section. I didn’t write about the CDC releasing its opioid guidelines and how they glossed over chronic pain patients like we don’t exist. Before I get back to my thoracic injection story, here’s a blurb about why the CDC is so far off the mark that it hurts my heart.

One of my readers and I have been corresponding. After ages of complaining to doctors about intense, all-consuming pain, they discovered she had a tethered spinal cord -- as in, her head is essentially falling off her neck, according to the MRI report. Not only that, but those MRIs she’d fought to get, that her pain management doctor had said were “unnecessary,” revealed a host of other problems that will likely all merit surgery at multiple levels of her spine. The level of pain in which she lives is unholy. And now she -- and we -- have to fight for pain medication? We know our bodies. We know what works. And sometimes we have no other options.

The CDC should not have the power to take away a method of pain control upon which so many people rely without providing appropriate alternatives. You can’t tell someone who’s had to rely on Percocet for 30 years, “Oh, well, we’re taking those away now. We’ll wean you off those, refer you to physical therapy, and really get you into meditation.”

Meditation is great. Mindfulness is great. Yoga is great. Those alternative medicines are great. I use them all. However, they are great as a complement to medication. Sometimes medication is all we can use in order to actually thrive in this world and not just sit in a chair all day, every day, watching television and not able to function. We don’t want to have to apply for SSDI. We want to live. We want to contribute to society.

We don’t take opioids to get high. We take opioids to feel normal.

Back to Spinal Injections

Anyway. Rant aside, the fact that I have been in two car accidents, have literally thousands of pages of medical history to back me up, and have countless doctors who can verify structural damage, I am still afraid of not being believed. Pain is subjective. People are prone to exaggeration. We have to fend for ourselves unless we find that one-in-a-million doctor who can help and is not afraid of prescribing legitimate medication.

Look at the California doctor who was recently convicted of murder for overprescribing painkillers for clients. She was actually reckless in her actions, but her conviction echoed throughout the medical community. Many other doctors will now prefer to be hands-off entirely, leaving patients in the lurch.

my C4-C6 fusion

Thankfully, I have found the best pain management doctor at Beth Israel Deaconess Medical Center in Boston. He understands that I am not just one big injury; I am a cluster of injuries at three different levels of my spine that were brought on by two separate car accidents. It doesn’t seem like it’d be difficult to grasp, but so many doctors didn’t believe that the second car accident -- much less drastic than the first -- could cause so much pain.

It wasn’t just the accident; it was the compounding of pain. I was already in pain and had been for nine years. This second accident created more pain. It’s a simple equation that many pain clinics somehow failed to grasp. Thankfully, my spine surgeon and my pain management doctor got me. They understood. They cared.

Which is why the thoracic injections were so horrifying. My brother was my designated ride, and after the procedure the nurses had to bring him back into the holding area because I was sobbing and on the brink of hysteria. (Naturally, in his haste he left my purse and coat in the waiting room, but he remembered all of his important stuff. Even in that state, I could see the humor of the situation.)

The pain of those thoracic injections -- an area that hasn’t been touched for probably eight years -- was so intense that I was literally screaming. These were diagnostic injections and a bit of steroid to see if the area was responsive after all this time. The doctormopoulos instructed the tech to give me a stress ball to squeeze and lots of tissues to drench. It took fewer than 10 minutes, but those 10 minutes were agony I have not felt before or since.

What if that had happened in front of a doctor I’d never met before? Somehow this was the same exact resident team that had done my lumbar injections a few months ago. Sometimes doctors switch up their accompanying residents, but nope -- we recognized one another. They saw the stark before-and-after versions of me.

What if that travesty were my first procedure? The new doctor would’ve stopped everything. We might not even have gotten to injections, because he might’ve glanced over my voluminous medical chart and said, “There’s nothing new to try, and they already did so much. This might be the best it gets for you.” And so many of us are told this!

Nobody sits you down after an accident and says, “You’re going to have chronic pain for the rest of your life.” It’s not like a cancer diagnosis when you only have so long to live. It’s always, “Well, at least you didn’t die!” We all think that we deserve to feel like we did before. We put our lives on hold because we think “I am going to get back to what I was. I’ll do the things I dreamed of doing... when I feel better.”

When I feel better. It’s always that thought in the back of our minds.

I finally realized that there might come a threshold where this is the best I get, and it won’t be close to what I used to be. Sometimes it’s not physically possible to be 100 percent again. If I can live a life that doesn’t just feel like “functioning,” like an automaton whirring my way through the day until I power down at night, then I will have succeeded. If I can do my job and contribute to society, I will have won. Then I think of all the patients who don’t have doctors they trust, who aren’t listened to, who aren’t taken seriously, and who aren’t believed.

In this new world of medical uncertainty, chronic illness patients need to form networks and advocacy groups. We need to share experiences with doctors. Was he understanding? Was she ready to help? Is their clinic’s position “deep breathing” instead of proper medication?

We need to participate, no matter how terrible we feel. In any capacity, in any way we can, we need to be our own advocates.

that's me. Makeup and non-pajamas for the first time in almost a month.

J. W. Kain is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents.

You can read more about J.W. on her blog, Wear, Tear, & Care.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Jumping from Fire into Work Comp Nightmare

By Ron Angel, Guest Columnist

I was injured on July 1, 2001 while fighting fire for the U.S. Forest Service in Tok, Alaska.

At the end of a long day, we were setting up camp and I was carrying heavy packs which weighed about 100 pounds.  While walking I felt pain radiating from my neck and through my shoulders. After a restless night, I woke up the next day with a stiff neck and more pain. 

Every day for the next two weeks it got steadily worse and spread down my right arm. At the end of the first week I went into a local clinic where the doctor knew right away that I had blown out a disc in my neck. He prescribed Percocet for my pain.

After I returned home, the pain continued to worsen and I ran out of Percocet; so I went to the ER in Sandpoint, Idaho. They refused to give me narcotics for pain and gave me Neurontin instead, which did nothing for pain relief.

The pain continued to increase and it was more than I could handle. It was an 11 on a 10 scale so I walked into my doctor’s office in tears and showed him I was unable to lift my arm. He set me up for an MRI, which showed I had a herniated disc and two bulging discs.

Ron Angel

I had submitted a claim to the Department of Labor’s Office of Workers’ Compensation (OWCP) immediately after returning from Alaska. I tried to get OWCP to help me, but was mostly unable to contact them. When I did get a hold of someone, they had no sympathy and were extremely adversarial. 

I consulted with a neurosurgeon and he said I needed surgery immediately. I called my health insurance, but they said it was work related so they would not cover it. I still had no response from federal OWCP. 

After not being able to sleep for nine days due to the pain, I could no longer take it. I got my pistol and had it on my lap. I called Blue Cross Blue Shield and told them that if they didn't help me I was going to kill myself immediately. They begged me not to and said they would cover the costs and deal with Federal OWCP. I had my lifesaving neck surgery on August 9, 2001.

I finally received a letter from OWCP dated Oct. 16, 2001 telling me they decided to accept my claim. I would have been dead had I not had the surgery to relieve my neck and arm pain. 

Federal OWCP does not accept back injuries, brain injuries or heart injuries for a settlement, but if an injury of one of them affects an accepted body part they will pay a settlement for the loss of use. Due to the loss of strength, mobility and the continuing pain, they rated my right arm a 23% loss.

During a follow up with the surgeon in 2004 he noticed that I had some movement of an adjacent disc that was causing me some discomfort. He said this is common with fusion patients and that we should just monitor it. If it started to cause me more problems he would have to go back in and fuse the next segment. This is called adjacent segment disease and it occurs in about 25 percent of fusion patients.

I am now retired and a couple of months ago I began to lose strength in my right arm, which I can't raise above my shoulder.  Pain is now radiating from my shoulder down to my elbow. I would rate my pain at a level of 4 today.  I contacted OWCP for authorization to get a new MRI, but they informed me that due to the lack of activity they had closed my case in 2013.

I explained they should have provided notification because my surgeon had said that eventually I would need another fusion. They told me that since they closed it, I will have to file another work comp claim for a re-occurrence of the injury. 

In order to re-open my claim, OWCP requires a narrative from the doctor that states the new symptoms are connected to my original injury in 2001. They also require all of my medical records since 2001, five other requirements for the doctor, and three pages of questions that I have to answer. 

My surgeon says the bulge in my disc is severe and another fusion is necessary, but he won’t provide a statement to OWCP because he is tired of dealing with them. He said he has another patient who has been trying for approximately two years to get his claim reopened, unsuccessfully. He doesn't have time to play their games. 

Since my doctor will not give me a statement, the only way I can get it fixed is if my health insurance will cover it. I'll be responsible for 20% of the cost!  This could have been avoided if OWCP had contacted me before arbitrarily closing my case. 

Now it looks like I get to go through the same trials to fight for my next fusion, which OWCP claims was not caused by the original injury. It looks like my bureaucratic nightmare with federal work comp is starting all over again.    

Ron Angel lives in Idaho.

Pain News Network invites other readers to share their stories with us.

Send them to:  editor@PainNewsNetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.