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Ronna Edelstein

When my friend Madeline turned seventy, she celebrated in a big way: She walked a half-marathon; she hosted a cabaret for family and friends at which she sang and told stories; she traveled to China. Now, six years later, this dynamic woman has become a virtual prisoner in her apartment. She has undergone back surgery, suffered a nearly fatal intestinal infection and, after a fall, had bolts and screws placed in her hip. Her voice, which once broadcast her energy and joie de vivre, has dwindled to a whisper.

The thread that links all of these bodily assaults is pain. Chronic, intense pain has drained away my friend's energy and quality of life. No doctor has definitively diagnosed the source of her pain--or been able to find an antidote.

I feel a special sympathy for Madeline because, like her, I live a life in which pain plays a constant role.

My pain began ten years ago, in my left jaw. Initially, I thought it was just a bad toothache, but neither my dentist nor the root-canal specialist found anything wrong. I swallowed acetaminophen and used ice packs, feeling increasingly troubled by how hard the pain was making it to enjoy my life.

By 2008, pain was a full-time companion, and I finally consulted a maxillofacial surgeon. An MRI showed that the cartilage disc in my jaw joint was misaligned and perforated, so he removed the disc, leaving nothing in its place. I enjoyed several glorious weeks of comfort before the pain abruptly came back.

Eight months later, when it had once more become unbearable, the surgeon operated again, this time using tissue from my jaw to create a new disc.

Unfortunately, within a year I'd lost fifteen pounds from being unable to comfortably open and close my mouth to eat, so I consulted another maxillofacial expert at a different medical center. Since my own tissue wasn't working, he said, I needed a prosthetic device.

This was my third surgery. Again, after a few months of relief, my hopes for recovery were dashed by the pain's return.

In the spring of 2015, a CT scan showed that bone was overgrowing the device. That summer, I had a fourth operation: The excess bone was cut away, the device was removed, and a new one was put in, with transferred stomach fat to cushion it.

"This will do the trick," the surgeon assured me.

Now, almost a year later, the excess bone is growing back, and the pain is more constant and intense than ever. Beginning at the prosthesis site, it radiates out through my entire head--a fiery sensation like a lit match burning inside my skull. It often settles in my left eye, which throbs continually, destroying my concentration.

When I take adult lifelong-learning classes, the pain mocks me, interfering with my ability to focus on the teacher's words; when I teach writing to my college English students, the pain saps my energy. At the symphony, the pain adds a sour undertone to the melodious notes of the orchestra; at the theater, the pain unravels the threads of the performers' dialogue, leaving me lost in a maze of meaningless verbiage. Pain prevents my afternoon naps and wakes me up at night when I've inadvertently turned onto my left side. Pain deepens the lines and wrinkles on my sixty-eight-year-old face.

Nothing has helped--not acupuncture, not physical therapy, not Rolfing (a holistic approach that manipulates the soft tissue in my face), Botox injections, wet heat or ice, prayers or meditation. Getting through the day is a challenge; I turn to humor for comfort, but more often than not I end up crying and calling my two adult children for sympathy.

Sometimes I want to dig my fingers into my face, pull out the device and pretend that none of this had ever happened. But I know that it wouldn't help.

My surgeon says that I need a fifth surgery to temporarily remove the prosthesis, cut deeper into the bone and then replace the device, but so far I've refused it. After all, each operation has only heightened the pain. He blames my pain on the weather, saying that cold temperatures and humidity can exacerbate it. But I doubt that this is the cause; the pain is always there, rain or shine.

When I complain to my surgeon or my primary-care physician, they each send me away with a prescription for hydrocodone or oxycodone. I wish that they had healthier alternatives to offer, and I hope that they're not stereotyping me as an aging woman who uses pain to garner attention. They dismiss my fear of becoming an addict; they seem untroubled that I sometimes take more than the prescribed four pills per day. Yet if they ever stop giving me this pill cushion that sometimes takes the edge off the pain, what will I do?

In 2012, the National Health Interview Survey, administered by the National Institutes of Health, reported that 11.2 percent of Americans suffer from chronic pain, and that 17.6 percent of Americans endure severe levels of pain. I believe that many pain sufferers avoid seeking medical help. Some don't want their physicians to view them as hypochondriacs or whiners; others have no faith that the medical profession can help them. I share these concerns--while also worrying, paradoxically, that my insurance company will stop paying for my jaw-related medical appointments, medications and surgeries.

In January of this year, Risa, my sister-in-law and good friend, died from complications of Crohn's disease, having spent fifty of her seventy years grappling with pain caused by the disease. My first reaction to the news of her death was one of relief: At least she was finally free of her suffering.

Then I became angry--for Risa, for my friend Madeline, for myself, for everyone who suffers from chronic pain. Do only the dead deserve to be free of pain?

I recently spoke with a maxillofacial surgeon who told me that prosthetic devices like mine have a bad track record--that many surgeons now shy away from inserting them, and that other patients with these devices suffer as I do. His words brought no comfort. I'm angry that the device that promised so much may have made things worse, and that others suffer as much as I do. I'll be happy only when a physician finds a way to diminish my pain--and I'm beginning to wonder if it will take a miracle.

Until that happens, I can only swallow my pills and try to pretend that my quality of life isn't going downhill.

Neither of which cheers me up, or offers a path to a pain-free future.


About the author:

Ronna Edelstein is a part-time English Department faculty member at the University of Pittsburgh, where she is a Writing Center consultant and teaches a section of freshman programs. Her fiction and nonfiction works have appeared in Quality Women's Fiction (QWF); SLAB--Sound and Literary Art Book; The Roaring Muse; The First Line; the Scribes Valley Publishing anthologies; Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers;Tales of Our Lives; and in the Pittsburgh Post-Gazette. Ronna dedicates this story to her children, Ilana and Jonathan, and, in memory, to Mom and Dad.

Story editor:

Diane Guernsey

Comments   

# JOHN 2019-09-27 08:44
MY PROFESSOR MADE US READ THIS FOR A NURSING CLASS, HOPE YOU FEEL BETTER XOXOXO :*
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# Carol 2016-07-15 20:41
Hi Ronna,

Are you feeling any better and have you had any encouraging news since your post?

- Carol
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# Naimer SA 2016-06-15 09:16
wgh
Dear Ronna,

Fell on your piece completely by accident, though I believe all in life is divine.
Your escapades are painful and stressful but it is obvious you still muster the energy and power to fight your plight. I find it a complete embarrassment existing on level ground with Dr. Ron Banner as a colleague. |I find it only too often that the impotence of the few to provide comfort and alleviation rush to an artificial solution as stabbing the heart of mere life itself. We are not losers.
When the going gets tough , the tough get going. \
Keep writing and let the world know what you endure. Don't stop until you have found a palatable (excuse the pun) solution. It may be from self hypnosis to cannabis you still haven't tried it all. I can promise you the solution is out there it continues to be all of our joint challenge to see you best out of the brunt of suffering cycle.



All the best,
SA Naimer MD
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# Jan Mansfield 2016-06-07 10:06
Hi Ronna,
I happened upon this article and had to respond. I had jaw/facial reconstruction 25 years ago, that resulted in major complications including the inability to move my jaw anymore so I could chew, eat, talk, and of course, have had years of constant jaw/nerve pain, etc. There is no other pain like jaw/head pain since it involves our nutrition, eating, smiling, and talking, all of which other people take for granted. Please feel free to contact me through email if you want.
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# Ronna L. Edelstein 2016-06-08 08:35
Oh, Jan, your words profoundly resonate with me. You understand how I feel--just as I understand how you feel. I am so sorry for what you endure. I pray that one day someone will find a way to bring relief to both of us.

I wish you lived near me so we could meet and give each other a supportive hug.

ronna
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# Hanan 2016-06-05 21:55
Dear Ronna,

I am touched by your story. I've been a devoted volunteer at a local nursing home since middle school (I'm now a college student). There's one resident in particular who I ache for today. I remember, a few years ago, when she was dashing through the halls, eager to push other residents who were confined to wheelchair. Now she herself has become confined to one, and, even worse, has deteriorated precipitously with dementia. I saw her today, and her stare has become so empty (a complete foil to her past expression, which was so full and friendly). She used to have a big appetite (hard to come by at a nursing home), but I tried feeding her today, and she didn't open her mouth even once. I feel so sad for her, and I try to derive meaning, but it seems cruel and selfish to think that any virtue can stem from such suffering. Along with my aforementioned friend, I ache for you. I hope at least that you're surrounded by loved ones.

Sincerely,
Hanan
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# Ronna L. Edelstein 2016-06-06 08:09
Hanan, I wish you had been one of my beloved father's aides; you write from a heart filled with empathy and compassion. Suffering--ment al, emotional, physical--is a daily challenge. I am lucky to have my children (one lives in another state, the other lives in another country) and some friends, but I have learned that the friends tire of being around someone who complains. Thus, I paint a smile on my face and pretend all is well. My poor children get the brunt of my whines! Your kind words mean a lot to me.

Ronna
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# Hanan Rimawi 2016-06-06 18:02
Ronna, thank you for the sweet response. It's remarkable to have such a platform where strangers can transcend physical space to make exchanges like this. Glad to hear you have children, despite the distance separating you. Of course I can't speak for them, but as I often must remind my darling mother, who sometimes laments that she worries us (her children -- I'm one of four) too much, she once had to bear the brunt of our cries and tantrums so it's only just that we impart that same consideration and compassion to her when she needs it. I think your children must feel the same way. Sending you all the healing vibes I have, Ronna. Much love to you.
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# Yehudit R 2016-06-04 15:54
Your saga of life with chronic pain is truly horrific. Waking up every morning, knowing you have to deal with pain all day is something that people who have never had serious continuous pain do not understand. I hope you find a practitioner who can help you manage the pain in such a way that your can have a decent quality of life again.
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# Ronna L. Edelstein 2016-06-04 16:05
Dear Yehudit,

Thank you for your kind words. I pray that I will find someone to help me, but I admit that I am not optimistic about having success.

I wish you the best,
Ronna
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# Ron Banner MD 2016-06-04 13:58
Dear Rona

I have 3 suggestions:

To get at the root of your problem, ask around, from multiple sources, to find an imaginative, creative, analytical and intuitive practitioner.

You absolutely need a palliative care doctor with whom you feel safe, not a "shot jock", to explore with you all medications that could give you relief. Don't worry about addition.

It seems as if, try as hard as you can to enjoy life, the pain prohibits you from gaining any pleasure at all. There are several states where you can get help planning your death. Often, people do not use the medications given; just knowing that they have the option is of help.

But try the first 2 suggestions before going to # 3.
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# Ronna L. Edelstein 2016-06-04 16:07
Thank you, Dr. Banner, for your suggestions. I am not ready for the third option, but I do welcome the first two. I wish I had the name of the "perfect" physician to help me.

Ronna
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# Margaret Fleming 2016-06-04 12:38
As a Prolia patient who takes Gabapentin & others to sleep, I had to read the whole post. Thank you for exposing the whole medical fracas for us.

I vote with the comment that mentioned pain clinic "staffed by doctors, not surgeons." I give thanks for my doctors and magnificent info now on line.

I wish you something wonderful,
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# Ronna L. Edelstein 2016-06-04 12:52
Thank you, Margaret, for taking the time to read my essay and comment on it. I wish you the best as you deal with your own medical challenges.

Ronna Edelstein
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# Andrea 2016-06-03 23:47
Your story brought big, fat tears to roll down my face. I am lucky not to have physical pain yet the helplessness I feel as a nurse is a different kind of pain. Pain does cause suffering, suffering is not optional. And suffering can bring compassion and passion to act and sometimes be transformed in an unexpected way. I pray for you to have pain relief, now while alive and with the vibrancy you shared.
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# Ronna L. Edelstein 2016-06-04 08:50
Thank you, Andrea, for your kind words. All the best, Ronna
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# J. Mayer 2016-06-03 23:21
I see that you are in Pittsburgh. Sorry that I did not notice. Univ of Pittsburgh is very good in pain, and Univ of Pennsylvania (I know that Philly is not like a walk around the block) is superb--Hospita l of the UUniv of Pennsylvania. Two hours away, both Case and Cleveland Clinic have top notch clinics.

I agree that in the end relief of suffering is the endpoint--and chronic, or recurrent, or persistent pain entails psychological and "spiritual" suffering--to the core. Choose a *multidisciplin ary* pain clinic--not one just run by an anesthesiologis t and not a pill mill.
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# Ronna L. Edelstein 2016-06-04 08:51
Thank you for reading my essay and responding to it. The University of Pittsburgh Medical Center is a huge place, but it has not connected me with specialists in related fields.

Ronna
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# J. Mayer 2016-06-03 23:13
Please seek help at a university medical center. I suggest one that has a *multidisciplin ary* pain clinic that incorporates neurologists, dentists, psychologists, radiologists, anesthesiologis ts and others. This is one of my specialties. All of the data indicate that this is the approach with the best outcomes. There are 200 such clinics in the US and others elsewhere. What state are you in?
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# Gerald Edelstein 2016-06-03 22:01
The author, Rona Edelstein, (no relation to me) does not mention any medications that she has used other than mild analgesics (acetaminophen) , and the stronger opiate narcotics (oxycodone and hydrocodone). There are other drugs which can be tried for chronic nerve pain. One of the more commonly used medications is Gabapentin, which is the generic name for the drug Neurontin. If taken in a small daily dose initially, side effects should be minimal. The daily dose is then gradually increased until the the desired reduction in pain is achieved..
Ms. Edelstein should definitely be evaluated in a Pain Clinic, staffed by doctors, other than surgeons, who are trained to diagnose and treat chronic pain problems.
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# Ronna L. Edelstein 2016-06-04 08:53
I should have mentioned Neurontin. My experience with it was so bad that I think I blocked it from my memory.

All the best, Gerald.

Ronna
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# Henry Schneiderman 2016-06-03 21:38
To me as a palliative care clinician, some of the burning sounds like neuropathic pain. Often gabapentin or pregabalin (Lyrica) is exceptionally helpful with this. The eye involvement might also be deciphered by a headache specialist; it is reminiscent of cluster headache and that may be a clue to more insight about source and remedy, though beyond me to solve.
I realize that this comment is the dispensing of medical oadvice including to see a pain specialist. But palliatives see relief of suffering using the most creative and full repertoire at the epicenter of medicine. For you, procedures have afforded only transient relief. I wish you good luck and much strength of spirit.
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# Ronna L. Edelstein 2016-06-04 08:54
Thank you, Harry, for your kind words. I have taken Neurontin--with very bad results.

Be well.
Ronna
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# Henry Schneiderman 2016-06-04 11:13
Ronna, first, you are welcome. I agree with our colleagues that suggest a pain center that is HOLISTIC, for pain entails suffering as several including you have said so eloquently. If gabapentin was no good, please know that there are other medicines that sometimes afford relief without the side effects; pregabalin is one (Lyrica); it is horribly oversold on TV ads, but it has a real benefit for some people; so does duloxitene (Cymbalta) which is also over-advertised . And now I'll quit and apologize if I have stepped over the boundary from caring into badgering.
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# Mary Walker 2016-06-03 20:37
I also suffer from chronic pain. I suffered a stroke during an episode of sepsis from a serious infection. After three years of trial and error, and agony I finally was allowed to use morphine. I am still never pain free, but able to retain some semblance of sanity. I have never lost, had stolen, or required an early refill, or requested prescriptions from the ER or any doctor but my PCP. I am treated worse than any street addict by the medical profession. I wish they knew what chronic pain does to a person. It takes away everything. Your job, your relationships, your dignity, and security. I am so scared of this getting worse. How much more can I tolerate? Under the new FDA guidelines on opiates, will I lose what relief I do have? Somebody surely is out there with the intelligence to find an alternate treatment. Find a cure or a treatment, because with severe chronic pain, death does seem the only sure solution. I am sorry to hear how many truly suffer with chronic pain. it hurts!
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# Ronna L. Edelstein 2016-06-04 08:56
Mary, you have my sympathy; I truly understand your pain.

Ronna
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# Cordon Bittner 2016-06-03 18:44
I'm a Family Physician. I'm not convinced the pain originates from the jaw joint. It sounds like nerve pain. You don't mention other specialists like Neurology or Pain Doctors.
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# Ronna L. Edelstein 2016-06-04 08:57
Dr. Bittner, others have suggested that I have nerve damage. I tried Neurontin, but the side effects were hideous.

All the best,
Ronna
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# Elaine Whitman 2016-06-03 18:43
This sounds simply horrendous. I'm so sorry for everything you have gone through and are continuing to go through. It's shocking that the only thing your doctors can offer you is pain pills. I wish you all the best.
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# Ronna L. Edelstein 2016-06-04 08:58
Elaine, thank you for your kind words. I appreciate your support.

Ronna
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