And Then it All Came to a Stop

And Then it All Came to a Stop

By Kerry Smith.

There is much that I have thought and written about in my journey. Every bit of it seems exhausting. I am tired. Today, I am saddened and I am watching all of it change in front of my eyes. It is almost as if I am not even in my body. Three weeks ago I had a colonoscopy and an endoscopy. It turned out well. The next day the pain started. It has increased each day.

One week ago this past Thursday I visited my neurosurgeon because the pain just kept going on and on like the energizer bunny. He ordered X-rays to start with and I walked to his office. He came in, visited with Karen and came straight to me. He is a rather conservative doctor often stopping me from having surgeries I didn’t need. He did a couple of tests and then looked me in the eyes and said I am calling in a specialist. It looks as if your Scoliosis has progressed to the point where we will need to fuse you up into your rib cage. We will first need to get an MRI. He
then asked, what is going on with your neck. I told him that when I lay down on my left side, I wake up with extreme pain and numbness in my left arm. He then added that I want to see it as well so lets do an MRI on your neck as well. Karen cried and I sure wanted to. About a year ago he told me that he would need to do a fusion on my neck if it continued create issues. Both my lumbar and cervical spine are fused. Four levels in my lumbar spine, three in my cervical spine and whatever in the heck my neurosurgeon next proposes will not make one promise of pain relief.

Kerry Smith

There are two things to note here: Fusions more times than not do not stop with the last level that has been fused. This is called Adjacent segment disease when the segments either above or below the fused segment goes bad. The second thing is that lumbar fusions can cause scoliosis to progress as well. Oh, a third thing: Colonoscopies can cause herniated discs. I was shocked to read that this was actually a thing. I didn’t know it was a thing. It is. I was picked up and turned three times and I am not sure if the attendants in turning me caused what I found out this past Thursday and that is I have two discs herniated at my lumbar level directly above my lumbar fusion contributing to the crook in my spine and two herniated discs above the fusion in my cervical spine.

Tonight, there is not enough pain medicine anywhere to alleviate the pain I am in and I have no idea what I am going to do. I just don’t. If I am completely fused in my cervical area there will be no turning to the left and the right in my neck and only a little bit looking up or down. Then in my lumbar region, fusing me up into my rib cage will stop me from bending in many ways. Between the two fusions I will have some thoracic discs left and I am wondering why not go ahead and do a full length fusion, right?

I have no idea why or what I am writing right now. I am simply, as the author Fredrick Buechner writes, attempting to, “Simply sit down and open up a vein.” I am opening up a vein alright. This week I see my pain doctor who will propose doing nerve blocks and I will visit my neurosurgeon who will suggest a fusion of some sorts. It now has all come to a stop or a comma, a semicolon, or a period. Maybe one or the other or a combination of all. Tonight, I am tired.

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Authored by: Kerry Smith

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Sharon

I don’t have the words anymore to express my pain since most of you have pretty much said it all! I am saddened by all that you’re all going through! I understand completely every single pain and I pray for each of you along with all the people who have messed this whole situation up that they have no idea how to undo the damage they have done. May God bless you and have mercy on each of us🙏🙏

Amy Hartmann

I’m sorry Kerry – I wish there were some words I could offer or actions I could take to give you hope. Please know you will be in my thoughts as you climb this latest mountain placed in front of you.

Carolyn R.

Not gonna tell my story as it is basically the same as everybody else, just a different set of physical facts. What I’d like to know is what happened to the studies done several years ago that all but proved that a person in true pain can not become ADDICTED to pain medications. Dependent yes, without pain medication, a person in pain will hurt therefore they are dependent but not ADDICTED. So how does only under 90 mg MMED keep you from becoming ADDICTED? If anyone can find these studies (I’m not computer savy) please post a link and maybe start forwarding to the CDC and elected idiots. Oh, while I’m at it, how will only 7 days worth of an opiod script prevent (or cause a decline in) an overdose? It only takes one or two days worth taken at the same time to OD. Thats how people overdose, taking more than whats needed for the pain while chasing a high. Elected Idiots!!!

Tom harless…many of us have been politically involved for a long time…it hasn’t done a bit of good. No one is listening. No one cares. Yes, something legal needs to be done. Too bad there isn’t money to hire lawyers (an essential in this society) so a class action suit could be brought. Short of that, things just continue to get worse for pain patients.

Kerry, your story is so profoundly moving…. I will be praying for you everyday, several times a day. May someone/something intervene to help you. 🙏🌷

I am Tim Harless, a chronic pain patient since 2004 and am an Advocate for the ACPA, the American Chronic Pain Association, theacpa.org. I have read so many stories and spoken with many other chronic pain patients I am moved to just summarize what we all see to date. Our human rights are being tread on for the sake of politicization of opiate overdoses and by misreported data that somehow didn’t make the news when the CDC corrected their numbers,
( not 67,000+ opiate overdose but more like 17,000+ overdose deaths due to opiates. )

But there are some numbers which I find appalling….in 2015 a study by Dr. Charles Bankey showed a 25% increase in Dignity With Death on Oregonians living in uncontrolled pain. In addition to the pressure on the doctors by the DEA and HHS it is becoming harder to find a Pain Clinic that will see you much less prescribe any pain medication. People are confused and worried about what’s to become of us all when they have labeled us as addicts and take cognitive behavior classes.
If this doesn’t get you mad….well if you are than do something about it. Write a letter to your congressman or governor or local newspaper. Get politically involved. We may have to change some laws and try to undo some of the damage this insanity has caused. Stand up for yourself and for those who can’t voice their opinion anymore.

Alan

So sorry, I know what your going through. My pain dr just lowered my meds again but wants to give long acting meds but I keep telling him that the copayment is to high and then there’s the coverage gap that once I reach a certain amount I have to pay 55% of brand drugs and 45% on generic. Really don’t know what I’m going to do? This inhuman treatment is pushing all of us that take our meds. responsibly to make an early exit.

Notasheep

Your story took my breath away. I am very sorry this is happening to you. Y’all are in my prayers, ALL of us are.

I can’t believe the turn our existence has taken. As I sit/lean here, it is still in disbelief at our situation. Not just that we hurt, but now are being actively hurt on purpose by people whose only damn job is to take care of us. Their sacred duty is to US. Worse, we gave them the power to do so. Does this make me complicit in my own destruction? Dunno, but sure wish I had voted for anyone other than who I voted for. Sure couldn’t have done much worse looking from where my painful butt is sitting.

CLaws

I’m speechless. All I know to say is that if writing mays you feel better then write. People are reading and can empathize.

Nonya

Nerve blocks are a total joke?…as are facet, trigger point, and all the other”blocks” that they try to give you.. I’ve had more than my fair share of all of these things done over the last 20+ year’s, and didn’t get any relief whatsoever! I have many people I know who have tried the very same things, and I have yet to hear of any of them getting any kind of relief…

Valerie Hirschberg

Kerry I am so sorry. My daughter in law’s mom had the severe scoliosis like you that suddenly progressed and she saw a neurosurgeon in FL who fused what he able to but he also had her on a device that stimulated bone growth on the side of vertebrae that was most compressed to help level out the curve a bit. She had do it at a couple levels. It took some time but it definitely helped her. If you want me to get his name just post a reply here. Saying a prayer for you.

Cheri Furr

I’m so sorry for your struggle and your pain. I wish There was something I could for for you. I have CRPS and four ruptured discs. I also have arthritis in my neck and all the way down my spine. I’m going to avoid surgery as long as I can.

Deborah Shuck

Just be careful and research everything. I had two cervical fusions. One fusion was done a year after the first and was caused partly by my lifting a bike and kayaks. I had an incredible surgeon and when I came out of the surgery the pain was gone and I lost no movement at all. As for the pain injections in the lower back, they are real money makers for pain doctors. Please research and see what the efficacy is. You will be surprised. Good luck. I have a birth issue with no left leg and have had chronic pain since 1975. I can’t tell you how many surgeries I have declined. Research is everything

Jodawn

😢 praying for you.

Kris Aaron

This is why people give up – our bodies have given up on us. Doctors don’t have all the answers; all too often the don’t have any answers other than “more of the same”.
Something didn’t work the last time we tried it? Hey, let’s try it again!
Now that our government is determined to take over authorizing our medical care, opioids for pain are nearly impossible to obtain. Bureaucrats know far more than our doctors about what’s good for us — just ask them.
I’m so sorry this horror has happened to you. Nobody deserves a life with so much physical suffering.

Marie

I am so sorry.

Alex

Kerry, in the post I just sent I made an error that needs correcting. I said that I thought you should see a neurologist who specialized in chronic pain. Correct that to “SEE A SPECIALIST IN ANESTHEISIOLOGY WHO SPECIALIZES IN CHRONIC PAIN CARE”.
Sorry about that.

Alex

Kerry, what about a nerve block? My pain Doc has given me a few in the past due to herniated discs and lumbar spine damage that literally tore nerve roots off my spinal column – one being my siatic nerve. Talk about pain! CRPS has now spread to my entire body. He has given me nerve blocks to knock out the pain in my left leg so that I am able to walk. He uses a drug called depo methra (I think that’s how it’s spelled and pronounced) but it does wonders. I have a steroid allergy so he had me tested to see what ones I could tolerate and depo was it. It lasts anywhere from 10 days to 2 months and provides great relief.
Every one I know who has had spinal fusions and back operations had nothing but increased pain. It was recommended to me. They wanted to fuse L2,3,4,5 and I said no! I’m glad I did, the pain is relentless, but the occasional nerve block provides the relief I need to keep going.
My personal recommendation having not seen your x-rays or test results, and of course not being a doctor – I’m just a pain advocate – is to put off any surgeries, try nerve blocks and talk to a neurologist who specializes in chronic pain control. You may find the answers you really seek. The quest to end or reduce pain is a brutal road, we travel it with the help of others but the decisions remain our own.

Debbie G.

Oh Kerry. I truly feel for you, and I pray that your surgery is successful. I pray most of all for some relief from this awful pain you are suffering through. PLEASE TELL ME that they are giving you something for pain?!

May God bless you Kerry and hold you as tight as he can. Your story breaks my heart, it will be stored there permanently now along with so many others. I know what you mean by just needing to write to talk, not really knowing where you’re going but just to let it all out or try anyway. I went swimming with my eight year old niece Saturday. After being in the pool for 3 hours, that night there was not enough pain medicine on the planet. Both knees felt broken, one is. I have metal screws in my ankle, the only way I know to describe my feet are like bricks. I left two months ago to spend the night with my mother and I’m still here. Alzheimer’s has robbed her, my dad went into a nursing home, I am all my niece has, then more issues, all over night. I’ve not stopped, I can’t. My body is begging me to give it a break but I can’t for everywhere I turn there is so much to do. I certainly was not going to let the opioid crisis stop me from getting in the pool with my little niece. That night I wondered seriously about going swimming ever again. I thought is this what it’s come to? Seemingly the only thing I’ve done for myself in the last couple of months and it nearly killed me so it felt like. I realize compared to some, my issues are not as bad as others when it comes to physical causes of pain. With severe osteoarthritis in 9 locations of my body at least I know I’m not facing surgery. It still though scares me to pieces to picture what will happen if they take away my medicine or what’s going to happen to me as I continue to age. Will I to be left alone in a nursing home? I’m 53 and single. Dating quickly became a thing of the past. When you can’t sit in a restaurant for over an hour without being in excruciating pain no matter how hard you try to fake it the other person still wonders what on earth is wrong. Reading over what I’ve written, it looks like I needed to tell a story of my own, so I thank you Kerry for giving me the opportunity. The only thing I know to do is continue to take one day at a time, to tell myself that God indeed promised he would not put more on us than we could possibly bear even though it seems like it sometimes. My world is crashing in around me with seemingly no hope insight but I can’t look at that part. I’ve got to look at the other for their are lives that are counting on mine. Kerry I will keep you and your wife in my constant prayers as I do so many others. Please take care and may God bless you both.

Judie Plumley

Kerry,
My, I am so sorry. I have a fusion too. Its from L3 to S1. In 2015 when I last saw my neurosurgeon, he said my new symptoms sounded like I had a herniated disk above my fusion. Said I needed an MRI in case he needed to do surgery above my fusion. We said my insurance was about to expire. He suggested I go to work to get insurance because “Emory in Atlanta is not a charity hospital.”
Keep in mind when I had all these surgeries before,this same man said I was no longer a candidate for surgery because I had a MRSA infection that had taken a year and 5 surgeries to get over.
I never went back. Herniated disks can return to normal, but they need some help. With all that is going on with your back, you may want to find an orthopedic massage therapist first, before they fuse you completely.
I go every week. He loosens my muscles that all cramp up, breaks up scar tissue so I can move easier, and it really decreases my pain. I have been going since I got out of that last surgery, and I know that is why I can walk today.
You are in my prayers .

Alanna Wilgus

I had two years of agonizing pain after a colonoscopy. It set off a reaction in the facia which holds our organs in place. It felt like back pain, but was actually “referred” pain. Seek out a “Strain-Counter-Strain” practitioner BEFORE surgery.

Kris

Kerry thank you for sharing your journey with us. You’ll be in my thoughts.

Kerry Hart

Kerry, I’m so sorry. I am fighting with all the limited energy I have in every way I can to stop the nightmare none of us can wake up from– to reverse these policies and laws and provide as much powerful pain relief as we need. You need to have the highest dosages and I’m sure you’re not getting anything close. I wish I could do more for you, but one thing you can do is look into applying for palliative care, which does not always mean or imply end of life. It’s not a promise, but it can in some cases allow doctors to bypass all ‘guidelines’ and ‘suggestions’ and treat patients in pain to the fullest of their abilities. My thoughts and prayers are with you and your family, Kerry. How can they not be when we share a name? :0)

It’s too bad you didn’t learn about prolotherapy early on. But anyone else reading this that doctors are recommending these kinds of procedures should look into it. I have a video on http://www.doctorsofcourage.org about it. Conventional medical procedures don’t fix the causes of back problems, while prolo does. Fix the cause–fix the problem. Otherwise it just worsens.

I am so, so sorry. I sincerely hope something can be done that will relieve the pain and leave you with improved quality of life. It sounds devastating…you’re in my thoughts and prayers.

Rachel

Kerry, I am so sorry. How terrible. From what you describe I’m guessing you are in a trauma state ie frozen as this is too much to process. I would say don’t have surgery in this state as high levels of circulating cortisol ( also generated by high pain) will preven a good recovery.

Can you get a second opinion re surgery? Back surgery is the most common cause of chronic pain,ask your pain doctor. I have been banned from ever having surgery again because my high level of chronic pain means I will get more pain from any even minor surgery than anyone could cope with. My pain doctor is head of pain management and Anaesthesia for five London (England ) teaching hospitals.

Be careful.

Good luck,
Rachel