Treating Chronic Pain – A Success Story

Treating Chronic Pain – A Success Story

All through the month of April, I had been in more pain than usual. I was trying to build up my muscles against the day my back would no longer carry me. Six years ago, I had contracted MRSA in a dirty OR. It liquefied my back.

Originally, I am a “Mesh Sister”, one of the first women who was implanted with transvaginal mesh in 2002. Over the years it did terrible damage to my female organs, and I am a mess.

For the first decade after mesh, our doctors did not believe us. They scoffed at our pain, they called us liars, drug seekers. I went to one doctor who said if I could stand a pelvic, there was no reason I couldn’t have sex. Really? I cried for days.

Then lawsuits started popping up, and with them, closed groups on Facebook of thousands and thousands of women who had been injured. For me, that is where it all started.

In 2012, there were only 4 doctors in the US who could successfully remove mesh. Your tissue grows through it. It hardens inside you and poisons your tissues. Early in 2013, I was lucky enough to find my doctor in Atlanta, Dr. Miklos, who took excellent care of me, removed most of the mesh, and did some reconstruction. Yet, I did not get better.

By September, I knew something else was wrong; I had an MRI and required a spinal fusion. Within 2 weeks, I had HA-MRSA, “an acceptable risk of surgery” that very nearly killed me.

I battled the infection for a year, having more surgeries, but every time, the infection came back and then the little hospital I was in sent me home to die, and my family took me to Emory in Atlanta.

I was way too sick to remember much, but I do know they saved my life in 2014.

It would be so nice, if when you are sick, all you have to do is concentrate on getting better, but the Opiate Epidemic has made that impossible for pain patients. We all know this. Most of us still play the game though and we get cheated. I wasn’t a game player and I was very afraid I was going have to pay for that decision.

I knew there was a lot of damage done to my body from the mesh and the MRSA, and I would spend the rest of my life in pain. I knew they had put one last ditch effort to save my back, and I was no longer a candidate for surgery. In July, 2015, I lost my COBRA. It was a year after that I was finally awarded Disability benefits. Due to circumstances beyond my control, I had to taper myself off all my pain medications. I couldn’t go to a pain clinic without insurance.

I did see a pain doctor once, but he got a false positive for THC in my urine screen, and refused to see me after that. The $1600 lab test they did prove I had done nothing wrong, but I thought I was black balled.

I researched my options, found kratom and CBD and made do. As time went on, I became less trustful of the Medical Community and what was happening to pain patients. I have severe PTSD from the pain I suffered, and I have declined all medical care for the last 5 years.

I rarely leave my house. I am very active in the kratom community the Chronic Pain Communities and the Global Mesh Alliance. But I stay home. It hurts too much to go out.

The week before Easter, it had gotten to the point I could no longer walk. I felt it was important to go get an X ray just to see what might be wrong.

I told my doctor it took an act of God to get me in his office. Obviously, I wasn’t too far off. The rods holding my fusion were broken.

There is no way to make you understand the terror that went through my soul as I looked at my X-Ray. I thought about hospitals who no longer use opiates, I thought of the horror stories in my closed groups of people who had been refused proper treatment. I thought of Pain Clinics, the CDC, the FDA, the guide lines of 2016, the suicides, and now I had to go back into that hell. I had chosen kratom and CBD, not the mainstream medical care. How were my panic attacks ever going to let me deal with this but I had no choice!

I called the surgeon who had done my surgery 5 years before. I told Dr. Refai’s nurse what had happened. I was still in shock, still thinking it was a mistake. That was Tuesday before Easter.

On Thursday I was admitted to Emory, just like that. All the sudden, there was nothing left to worry about.

My doctor popped his head in, said not to worry about a thing, they had this covered. He would do tests over the weekend, he would do surgery to replace the rods on Monday, and rebuild the parts that did not fuse in the beginning. He went through my back on Monday, then through the front the next Thursday, even though all the scar tissue of the mesh. These were my 29th and 30th surgeries.

They of course took my history; knew I had not seen a doctor in 5 years.

They did not berate my decisions of kratom and CBD. There was not one person who I came in contact with at Emory who was not helpful and kind. Most importantly, I was always given proper pain control, I was always treated with respect, and even my panic attacks, which got really bad at on point, were taken seriously. I was treated the way every person should be treated while ill. It made me believe in healthcare again. The day after the first surgery, I was up walking around with no nerve pain!

Thursday was just a little harder, yet I was able to graduate from PT and IT on Friday. I got home yesterday and I just had to share with you.

Emory has a commercial on its channels that comments on the technology of healthcare today. We have more advances now than we ever have, but it’s going to be up to the hospitals to bring technology and care to the people. The Government is not going to do it, and we need to fix the Healthcare system. It’s going to be up to us. This is a true Easter miracle.

For past National Pain Report stories by Judie Plumley, click here.

Authored by: Judie Plumley

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Pauline

That’s rare, caring for you like a person deserves to be. My PCP could have treated my chronic pain years ago. I had to bring him records from my phycologist who prescribed me Xanax so he could cover his arse and continue to prescribe it. He weaned me down to 60 but it’s not working for me. I’ve always been a nervous type since I was a child. Anyways I went on a rampage and told anyone who would listen how my doctor isn’t treated me for my pain. I’ve had him for 8 years and he says it’s too late to start me on a pain contract now since he’s retiring. Now they want me to see a counselor and sign a contract saying that I’ll be nice or else I can’t be seen there anymore. The law says that you can fire your doctor, but he can’t abandon you. He can suggest another doctor for you that will fill my meds.
i have to wait 2 months to see my potential new PCP. I picked a woman this time. I have a pinched nerve in my neck and a very bad headache for 9 months. My insurance is going to provide me with physical therapy at my home which is a big help for me since I can’t drive bcuz my neck is stiff I can barely turn it. I went to the ER and they said that I should go back and see my PCP and gave me a bottle of muscle relaxers. I wanted an MRI but they refused that. Costs too much they said. Is that even legal? I’m living in pain 24/7 just like y’all here. I’m done with my Rhuematologist playing guinea pig with me with meds that are supposed to be for cancer. The side effects are horrible. I felt like I was a zombie and I walked around at night falling down crawling to the bathroom. I felt like I had the flu, it was hard to breathe. I’m all for going to see a Naturopath and maybe trying CBD oil. I will pray for everyone here. Prayer is powerful..

Wanda Hobbs

You are so fortunate to have been taken care of by such a caring medical team! Thanks for sharing your story.

Chrissy

My baby sister ended up with mesh and a MRSA infection in it. They removed the mesh, but did no reconstruction. It took 3 years to get rid of the MRSA. She died from all thr complications at 44. She had horrific pain and no one would believe her. I believed her, because I am an intractable pain patient. I am so glad you receives the proper care!

Alan Edwards

Cracks are appearing in the all-out war on pain patients. But laws are being passed and agents are still active in keeping the artificial crisis going

Your case is in the minority, Judy. Many of us are alone and have incurable conditions. I cannot be cured. My spine cannot take rods. My brain damage, pain, and anxiety respond to medications that still may be banned in the near future except for dying cancer patients. Even they are now being denied pain treatment.
Patients with anxiety are also being denied treatment with effective meds.

Antidepressants and buprenorphine have been the nightmare for years. Never mentioned by the elite, however..

Dear Sharon, I too suffer w/ interstitial cystitis. Here are some tips: sit in a very hot tub of water be careful BC this can cause bladder infection but helps with pain . safer option moist heat pad. Avoid acidic Foods / drinks. See if your urologists will write you a prescription for lidocaine and sodium bicarbonate to insert into the bladder. This calms down the burning. Also to save money you can heat cup of water dissolve baking soda let the water cool and catheterize. Heating the water kills bacteria, sanitizes the water. Doctor will not recommend sanitizing and using baking soda. Also being on an antacid can help. Also urologist can stretch your bladder. You may have hunters ulcers. Try holding your urine as long as possible. But if you work at a job where you have to hold your urine for long periods your bladder can become overstretched increase interstitial pain. This can actually damage your kidneys. Anxiety can make it worse. You probably been already told all this but you may not of so Best of luck to you. PS I’m amazed how many people have PTS from doctors, lost of trust, wanting 2 avoid doctors BC that’s exactly how I feel glad to know I’m not the only one. Sent my PCP portal message stating I thought I was having stroke symptoms and they never replied back to me. I have chronic migraines. A lot of other chronic pains as well but i am SOL! We’re all in same boat.

My pain is abdominal high end pain with severe pain spikes .What is the best Kratom to take and has anybody heard of buying Ketamine from the internet? I do not know much about either one of these products. I see the surgeon again on May 9th. I am going to talk to him about a last ditch effort to see if they can find the cause of my pain. I do not expect much. I cannot find a pain doctor and even my insurance company did not call me back with a referral for one who can help me. The pain doctor I did have abused me and then took my treatments from me. If I cannot find help soon from the medical community I need to find something to at least try to help me from other sources. I am down to the wire and am about to cross the line. At least if they call me a drug seeker they will be right for once. I will go as long as I can without crossing that line. My e-mail is sweetypie78@verizon.net I have no relief at all right now and I need help.

Denise Morris

Judie! I am so happy for you, and to hear this good news about a major medical center providing real care, as it should be. Thank you for making the great effort involved in writing this soon after a major procedure. The optimism is good for all of us and provides hope in America.

nana

I have traveled a similar path but I was not tested as badly as you.

I had my spine surgeries in Portland Oregon. As most know Oregon is hell on CPP. I have c2-t3 (laminectomy, rod and pedicle screws) and l5-6.Over 6 surgeries to get me going. But laminectomies are good for about 7 years and mine is almost 14.

I have also had digestive problems that doctors denied for 30 years (no, they said, it is not a heart attack- it is a hiatal hernia) to the point where I searched out a surgeon who did not do the “golden standard” surgery that destroys lives. I found a doctor with empathy that treated you like you knew what your body is going through. He dug in a year ago February. I had an esophageal valvuloplasity. My stomach was upside down in my chest. He had to rule out a heart attack first so I had pre-op in the Celebration Hospital prior to surgery in Florida. Surgery 2/5/18.

We had moved to Missouri in anticipation of that surgery. I could not lift anything for 8 weeks..

There are 2 hospital systems in this town. Both demand a referral but with over 1 year waiting periods I am still waiting. Only doctor I found is 4 hours away. She is wonderful but 2 days drive and back for appointments? I have not let myself get involved with doctors. I have no GI here a year after major digestive surgery. I have had had 3 referrals. I am too tired to chase a GI down. My surgeon isn’t happy. I flew to Florida for an repeat EGD.

My question: Will we be forced to travel for diseases in the future? I am not chasing pain meds. This fake crisis is turning doctors and systems stupid.

I need spine surgery again. I found a doctor in–Florida. Again. I have a consult the 30th. If I can get films for the surgeon.

Do I ignore it some more?

Sharon Schwager

I am so sorry for all you’ve gone through. I pray that you will be able to keep the pain relief medications that you so desperately need. I too am a chronic pain patient for the last 16yrs. I too was one of the unfortunate victims of the fake opioid epidemic. I suffer from interstitial cystitis. A chronic bladder disease that causes severely disabling pain. The pain is so horrendous & unbearable that I am currently researching “exit options”. I am very suicidal and I beg God every night to please not let me wake up in the morning, and am terribly disappointed when I open my eyes after the hour or two that I’ve been able to finally fall asleep. I also suffer from spinal stenosis among other conditions. I too am homebound and mostly bedbound since losing my medication, through no fault of my own a few years ago. I can no longer cook for myself, except to put oatmeal in the microwave & frozen dinners. I can’t shower but once a week, and I have to force myself to do that. It takes everything in me to do it and I can not move afterwards. Of course I can’t shop. I am dependant on my children for everything. It’s not supposed to be like that. They have families of their own. I of course have lost all my friends over the years. I also suffer from medical PTSD. I have one of those “invisible illness” diseases, so of course I’m a drug seeker or it’s all in my head. I’ve been verbally abused by a few doctors. One even said “you don’t need pain medicine, you need psychiatric medicine!” My illnesses, especially the interstitial cystitis, have taken EVERYTHING from me. My motherhood, my ability to be a grandmom, my ability to work, my freedom, my independence, my friendships, my marriage, my sex life, my ability to find companionship or date-I’ll be alone for the rest of my life, my ability to be self-sufficient, my trust in people-especially those in the medical field, and my joy and zest for life. I’m truly hopeless! God bless us all.

Wow. This is the first time I’ve read of anyone being treated decently by any hospital in ages. I have a friend who has to go in for exploratory surgery this month, & I’m absolutely terrified for her. I’ve been trying to get her to talk clearly about post-surgical pain control with her surgeon & to get it in writing, but without scaring her to death about the possible Hell she could face. I so wish she could travel most of the way across the country to Emory & this surgeon (we’re fabulously unlucky to live in Oregon, the anti-pain med, sadism capital of the country, or possibly the world).

It’s nice to hear there are still a FEW sane physicians left in the country. I wish that sanity was virulently contagious.

Stacie Wagner

I’m so glad to hear that you had an Easter miracle. Thank you for sharing your story. I am glad you are feeling better.

FormerPatriot

What a breath of fresh air to read a story that is NOT all doom and gloom in NPR.
(Don’t get me wrong, those stories MUST be told as well). Just got back yesterday from a hearing where Louisiana did NOT ban kratom and I am seeing a one or two chronic pain patients in facebook groups actually getting their meds back!

Thomas Wayne Kidd

I am rejoicing with you dear friend. God bless you and keep you in His care.

Jennifer Kassner

So wonderful to hear this story! I love that you were treated well and with respect. I too suffer from PTSD and panic attacks and terrors from the complete removal of my opiates with no taper due to CDC rules 3 years ago. I no longer trusted the medical community! I was finally referred to a very reliable and fair doctor who allows me a tiny dose of iPods, no more than 4 mg per day for my irretractable pain, but it’s a start. Thank you for sharing your story. It gives hope to all of us!

Wendy Paley

Wow, what An amazing journey. There are no words to describe the happiness I feel for you. You have been to hell and back and so deserve the relief you are finally getting! Good to know there are still some caring healthcare professionals.

Paula

So happy to hear that there might be some help for pain sufferers in the future. What a story! Thank you for sharing it Judie!

Rebecca Payne

Thanks for sharing,,so grateful for this slice of hope

r. p.

I was sitting here in severe pain and decided to go on here again to see the who, what and where in the pain community and bumped into your horrendous journey. Nothing pleased me more than to hear of your final triumph! Thanks for sharing!

Denise Bault

So happy you have relief now. What a miracle!

Cindy

Geez, what a story. Our gov’t officials need to HEAR people like you.

I live in FL and just found out about a Working Group assembled by the new state AG after the election, that issued a report about the opioid epidemic. All members are prosecutors of some sort, and the report only mentions pain patients in one sentence.

I want to write to them, but am afraid that they’ll zoom in on me and my pain manager. I’m on a forced taper, but it could be a lot worse.

I also had a false positive urine test for alcohol, and my prior pain manager dumped me and refused to allow me to speak to her or do another spontaneous test. Even though I’d seen her for years w/ no problem. I’m wondering if I tell that story to these people if that will also get me in trouble — that they wont’ believe it and will scrutinize my life.

I’m amazed you’re still alive. I would have committed suicide if I had to go what you went thru.

I spent a day considering suicide in Feb on Day 4 of a pain spike; I was afraid to take an extra percocet or 2 due to the forced taper. I finally overcame my hysteria and realized that until the pills were gone, it would make no sense to kill myself.

I don’t know how you had the courage and perserverence to continue. You are amazing.

And, my mother died in excruciating pain due to hernia mesh growing into her intestine. She was 87 and at the hospital they undermedicated her pain until finally when they put her on hospice. She was crying and begging to die. Yup, worrying that an 87 year old invalid will get addicted to opioids makes a lot of sense.

Submit

Best of health and recovery. You are one amazing person. Stay strong. The strength of you gives hundreds hope.
Thanks.

Laurie

Dear Judie,
My god! I have NEVER heard such a story! No wonder you stayed away from medical people. I’ve even thought of doing the same and I’m nowhere near where you are….(well, maybe a little).
I think I know why everyone was so good to you. You were a walking malpractice case! You probably still are and might want to talk to an attorney: broken rods, incomplete fusion, mesh, etc.
Sure they gave you Cadillac care….cheaper than a malpractice suit, eh?

I have been very harmed by all sorts of sloppy docs in our “best healthcare system on Earth!” (right) More like the Spanish Inquisition these days.

Anyway, I send thoughts of healing to you, blessings and love.

Good luck! I’m glad they finally treated you like human being

Sue

Amen; found myself in tears reading “ I was treated the way every person should be while ill. It made me believe in healthcare again. “ Yes! A true miracle & am so thankful for this woman!!

Danny

Wow! A very positive experience well described!

Gary Raymond

Hi, Judie. I assume you are talking about Emory University Hospital, Atlanta, Georgia. This news is great for you and for them!