My Story: Hunting for a Pain Clinic and a Bear

My Story: Hunting for a Pain Clinic and a Bear

By Kerry Smith

We received an email from our friend Kerry Smith who has been writing for the National Pain Report for the past year or so. The email talked about his frustration with his pain clinic and his plans for the next month—they aren’t what you think. He is allowing us to share it with you.

I was called and told not to email the nurse practitioner again. So instead of them receiving both my phone call and email from my desperation in pain, I am called by the assistant and told to not email.

Needless to say, I am in between new pain clinics.

Last week, I had intense migraines starting the week and by the end of the week, the pain had moved to my neck and I will be a son of a b—- if I don’t have cervical spine issues.

Freaking Cervical Pain!!!

When I had my CT scan last November, it covered both my cervical and lumbar spine. The pain however has been in my lumbar spine until last week. I have had to beg to find someone to give me a nerve block and I am in such pain I can’t see through crap. So the CT scan was read on Tuesday by my neurosurgeon and what it showed was that my cervical discs above and below my two fusions have considerable deterioration and are breaking down. The migraines were a foretaste as to what was going on in my neck and today I am sitting here in a neck brace, a lumbar brace, and I am waiting for someone, anyone, to give me a nerve block and help me with my pain.

I am going to see if I can get some Jack Daniels.

So like many of you, I’ve been suffering.

However, that’s not all I’m doing.

In May I am going on a bear hunt. That’s right, a bear hunt. Not just any bear hunt mind you; an Alaskan Brown Bear hunt. That’s where the big ass bears grow like 9-10 feet tall. I am going to sit in a tree stand and overlook the migration paths where huge males are going from hibernation to the moose calving grounds. The number of moose are on a slow decline due to the number of Brown males that will kill a calf during birth, sometimes killing the mom as well.

Also the big males or boars as they are called, are looking to breed and given the opportunity, they will kill cubs in order to force the females into heat again so they can breed them. Damn nature is just tough. The state of Alaska works with an outfitter that I am hunting with and they have pinpointed this place as needing management because, well, you just can’t go up and negotiate with those big suckers. They don’t shake hands really well and agree to go find something else to attack. Some of these dudes are like 20 to 25 years old, and the natives are asking for help in reducing the numbers of the male brown bears.

So yeah, bear hunting. I think there is some double entendre that is going on; see I am trying to kill that which is gnawing on me like a bear which is found in the stuff of chronic pain. I am therefore hunting a bear which given the chance would gnaw on me like the bear of chronic pain. See it, double entendre?

Anyway, I leave May 18 and return June 3 if I can stay that long. It’s going be tough but I’ll give it my best.

Assuming I survive, I’ll let you know how it went when I return in June.

Editor’s Note: Kerry Smith is a former minister, a professional artist, and has suffered with chronic pain for 14 years. He has lectured and written on the topic of chronic pain for several years. Here’s a link to his art studio website.

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Authored by: Kerry Smith

There are 7 comments for this article
  1. Lisa Hess at 9:47 am

    Hello Kerry and Lillian. Both of your stories hit home like a baseball that was hit so far into the outfield we got a home run. Kerry I find your story interesting because I am just like you. The only thing I ever had on my Bucket List was to take a cruise to Alaska and finally 2 summers ago I did. It was the most amazing experience of my life. Physically, I was in so much pain, but I didn’t care. On the boat I was willing to try anything to get out of pain so I did the reflexology, Pedi’s, Mani’s, massage, even acupuncture, but nothing helped. But I knew I was going to do Alaska no matter what and I did and you should try and enjoy this trip as much as you can. And, I am also an artist but lately, it has become very hard to do my artwork because my quality of life has diminished so much over the past 4 months since Medicare no longer covers my name brand pain meds and I’m on generics now and there is a CAP by the DEA of how much I am allowed to be prescribed which is 1/2 of what I was on 1 year ago. Kerry, I hope the nerve blocks work for you but they never did for me. In fact, they made my neck much worse, and the nerves do grow back. A very brief story of me. In 1996 I was in a car accident that ruined my life forever (I was 34 at the time). In the ER they thought my neck was broken because the impact was so hard the seatbelt had snapped my body back so violently my head shook like a rag and my car had no airbags (it was a 1992 escort) . I wish it had broken my neck because I’d still be working and living a normal life. I’ve endured some 25+ procedures and 5 spine surgeries; 3 cervical and a lumbar stimulator implant and removal (because after 2 years it still didn’t relieve any pain unless I turned it up to full blast just to get the residual tingling from the inside to reach the outside of my legs and never got back relief.) I did acupuncture, PT for so many years and I think I’m the only person alive who failed PT and had to be excused because Medicare won’t cover sessions after 10 if I showed no improvement and my PT said that he didn’t think I would benefit at all anymore because my neck and muscles are too damaged Lillian, like you, I woke up one morning in February 2011 in excruciating lumbar and leg pain and had no reason as to why. All these years we figured it was the DDD that extended all the way down my spine and ended at L5/S1 which is why I tried the Stimulator. Your question about the CT was right on the nose. MRIs are much more extensive in showing soft tissue damage and if you can find somewhere that can put you on a payment plan, or find an advocate to work with your insurance as to the necessity of the MRI, you must get it. The damage I have in my body is severe and the list is long and I don’t like to say all of it because it is a boring thing to read, but I will tell you that my future is very bleak and I will probably be in a wheel chair eventually because the pain I endure 24/7/365 is getting worse as are my cervical and lumbar spine, arm and leg issues and Chronic Lyme Disease and Bartonella make me feel like I’m dying from the inside out. But, please keep in mind I do know what you are all going through and i fight every day to get something done and I want all of you to understand I know what I’m talking about. Unfortunately, there is no way to make my story short, however, Kerry, I hope nerve blocks work for you, but I must tell you, they never worked for me, infact, made me worse, and I’ve heard the same from many cervical pain patients. Possibly an Epidural or Facet Blocks too might help. I was told after my first surgery and second surgery that the degeneration in my neck wouldn’t get worse or “climb” down lower than C7. Well, guess what, it did. By 2006 I had to have my 3rd Cervical fusion (the artificial discs were not approved in the states yet) and I haven’t been able to work since because the pain not only remained, but got 10X+ worse and caused me to have Fibro Myalgia that I couldn’t work and am on SSD. I have been in Pain Management full time since and was put on Morphine and Percocet (for breakthrough pain). I’d been a patient with my PM since 2002 so my doctor knew of my issues and did most of the procedures (blocks, epidurals, and the implant). Well, 2 1/2 years ago, when the DEA was at it’s height of putting all PMs running scared, my PM told me so many lies as to why he had to cut down on my meds, and I believed him and his PA. He cut them in half over a period of 4 months and I lost all quality of life. The last time I saw him I was crying and begging him to bring me back up enough to allow me to move and get some sleep. I also had a challenged him because for years he told me that I was on more pain meds than a stage 4 cancer patient i.e., 60 mg Kadian and 3 10/325 percocet a day and by my last appointment with him I was barely able to walk, move my head or arms and hadn’t had a good night sleep in weeks. For years he told me that each 10 mg of Oxycodone was the equivalent of 6X the amount of morphine (i.e. each 10 mg = 60 mg of morphine) and I believed him until he said something so ridiculous it hit a cord. I started doing my own research online and asking questions to pharmacists and other doctors and found out the truth. Each 10 mg of Oxycodone was only 1.5 X the equivalent of morphone. That is what I told him and he was furious that I doubted his opinion and he was refusing to increase my medication so I could have some kind of life. He stuck with his “each 10 mg = 60 mg” and argued back and told me to get a second opinion, and I asked him if the second opinion confirmed what i said, will he treat me properly because we had such a long doctor/patient relationship I didn’t want a new doctor. All he said was “I’ll send him your records.” In other words, he released me after 14 years together. I was hysterical for days. I called, wrote, gathered all my records and sent them to every PM that was recommended to me and not a single one would take on my case. Finally, my Spine doctor found a PM for me (this took 7 months) of whom I’ve been with ever since and I love him dearly because he listens to me and loves the fact that I’m always ahead of the ball by doing all my own research of all my conditions and medications and trying to come up with other ways to relieve my pain. (Research was my occupation before becoming permanently disabled in 2006). Anyway, this doctor was able to increase my medication to a level where I could lead as normal a life as possible until this past January 1. The issue is the DEA thinks they know what I do or do not need to survive and now my quality of life has gone into the toilet. My PM’s his hands are tied, so fighting the DEA is now my mission, not just for me, but for all of us Pain sufferers because it isn’t fair and it isn’t right what they are doing to us, The REAL PAIN sufferers. When procedures don’t help, surgeries make us worse and all we have is medication that may last enough time that we can get done what we need to get done, something has to be done. Kerry, I hope you have an amazing trip that leaves you with memories to last a lifetime and Lillian, I hope you can get the MRI you so need and may the Angels follow you on your journeys.

  2. Michael Wagner at 11:07 am

    Lillian:

    The test are familiar, as it makes money for there over head I guess as they have been doing that for a long time and they do there procedure any way. I have been trying to get in for a large hernia operation I had a ct scan that showed nothing, I asked why as it is very large , she said that a ct scan hardly ever shows anything for a hernia and then I had a ultrasound and it showed nothing, well this is getting old, I still have a surgery date. 5-6000.00 in test that are worthless, yet we pay for it.
    it should be a crime to add every test you can think of that a insurance company will pay for.

  3. Jeremy Goodwin, MS, MD at 9:47 am

    I think it is about time that this publication focused a few articles on the issues regarding spinal fusion, especially at more than one level, that are simply not properly discussed with patients most of the time.

    Compare fusion surgery with motion preserving surgery ( artificial discs being the most obvious option here) but make it clear that even the best in the US and UK are 15-25 years behind the few specialty clinics in Germany—especially Pro-Spine in Bavaria under Rudolf Bertagnolli—where up to five (!) levels can be successfully achieved in selected patients even with severe osteoporosis. And where we have two or three products in the market they have about 20. I have sent at least 9-12 people there all of whom were ” untreatable here” and all have done marvellously at a third of the cost including the business class fare and hotel for a couple of weeks. By 2010 he had performed over 6000 of the procedures. I took my partner, an experienced nurse, who had torn four painful discs. The result was incredible. Sand with the others. Fusion may be necessary where there is no motion to preserve or where distortion of anatomy via scoliosis exists, but the approaches can be mixed, significantly diminishing the risk for post operative degeneration of spinal segments around the site of fusion. It is in its infancy here. The main disc used in the USA was refined by Bertagnoli and despite now being made in PA, the cost of each is 2.5 times that charged to Europeans.

    Recovery for 4 levels was 16 weeks compared to about 12-18 months for even a 2- level fusion here. And my patients have all regained 1-3 inches in height and have near full mobility. They also largely eliminated pain medication or drastically cut back.

  4. Kurt WG Matthies at 9:36 am

    Kerry, somedays you get the bear and somedays the bear gets you.

    Ask Ed for my email address or phone nember. I’d like to talk with you before you go to Alaska.

  5. MichaelL at 8:55 am

    What else can we do? As the continued torture of pain patients, the number of doctors, willing and able to control our pain, is diminishing , rapidly! Being a physician sanctioned for treating chronic pain patients, and now suffering from post-traumatic neuropathy, I can relate to both sides of the picture. I don’t have a very good opinion of my former colleagues, either.

  6. Lillian Trevino at 5:50 am

    I wish you well my friend I hope you can sit in that stand for a while but won’t the cold snow and cold air hurt your bones worse???….has the nerve blocker helped you and do your receive any help with your pain I am reading this going ok he was told not to email the NP any longer and this is what the ct scan showed Let me tell you what I was told by a spine doctor some years ago I was having the worse back pain ever now at this point I didn’t do anything to harm my back just woke up one day and couldn’t get out of bed dew to the pain and my legs would not work with out me screaming in pain so my husband rushed me to the ER at this point this is when they “actually believed” you was in pain so the ER doctor came in the room I was in so much pain once they wheeled me back to my room I couldn’t lay down I was sitting on the edge of the stretcher with my head pressed against My Husband the ER doctor came in we told him I woke up like that he he told me to lay down so he could examine me I screamed in horrible pain and he told the nurse 4 of diluted and a steroid shot stat she came in poped it in my hip 15 min later they came to get me for a ct scan as they was wheeling me on the stretcher to ct the nurse said wait a min wait she popped in another 4 of diluted off I went came back to the room she brought me 2 of diluted and in the hip it went so the ER doctor came back a hour later and said your l4 and l5 are out so I am sending you home with pain meds a mussel relaxers and a nsaid I want you to see the spine doctor who is a really good friend of mine I called got in all I had was my ct disk and report he came in and looked at everything and right away said I am sorry but you can not see the neck or spine on a ct scan and told me I needed a MRI and I didn’t have Insurance so he said I would go broke because it cost way to much money and he gave me a script for tramadol and told me to see a chiropractor he couldn’t help me with out a MRI so my question to you is how could they see what you have from a ct scan

  7. K. Rhoma at 4:20 am

    I’m hunting for bear too. My bear isn’t big and brown though. It lives within my leg. It tears at the flesh and knaws on my bones from shin to hip.
    I’m up a tree too, waiting for some help, cure, or the next best treatment to come by. I’m waiting…and waiting…

    I hope you get your big old bear – neck pain and all! Good luck. I’ll continue to hunt for mine!