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Old 05-02-2019, 08:36 PM
 
Location: Down the rabbit hole
854 posts, read 937,278 times
Reputation: 2678

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I have been diagnosed with both as well as myelopathy. It started just about a year ago and has only gotten worse as time progresses. It started with what I used to call my "pain tour". Sometimes the pain was in the base of my neck, other times it was behind my left ear. It's moved around to my shoulder and my upper back.......always on my left side. I've had 2 MRIs done (where the diagnosis came from) been on several different SSRIs and SNRIs, none of which helped or had such bad side effects, I couldn't continue them.

All the while, the pain kept increasing. Fast forward to today. In the past 2 months the pain has settled into my lower neck, left tricep and left trapezius muscle. My current medicine regimen is 1 10/325 oxycodone every 4 hours and usually 800 - 1000 mg Ibuprofen every 4 hours. I know this is probably destroying my kidneys and adding to my risk of stroke or heart attack. But, pain like this cannot be ignored. Today, my pain management doctor put me on 15 mg of Meloxicam and told me to stop any OTC NSAIDS.

An even bigger worry is the fact that I've added alcohol to my pain relief at night. I don't like alcohol and haven't drank anything in over 6 years but it adds the much needed boost to get the Oxycodone working. At no point during opioid therapy have I ever felt euphoria or whatever "feel good" things are supposed to follow these drugs. I get enough pain relief to keep me sane - that's it

So far, in addition to the drug therapy, I've done 2, 8 week rounds of physical therapy, which only increased the pain. I've also had a fluoroscopically guided epidural which yielded no results and during the follow up appointment with the attending orthopedic surgeon, he said "sorry, you're not a candidate for surgery and if the shot didn't help, there's nothing more I can do for you". I've since dumped him and now am leaving my fate to a spinal pain specialist who plans on a fluoroscopically guided steroid injection in 3 weeks.

Has anybody else run into these conditions? I'm getting desperate. The pain is absolutely incapacitating. I used to think I was a tough guy because I'd worked in construction for 20 years (probably the ultimate cause for my current condition) had a few broken bones, a few cuts requiring stitches which I fixed with duct tape until I could get to a Dr., suffered through a bout of painful kidney stones and worked for 6 months with a herniated disc which my ortho likened to a stepped on jelly donut.

All that previous pain has nothing on what I'm going through now. I think about suicide at least twice a day to escape the pain, but that is not an option. I have a disabled wife, an 86 year old father for whom I am the sole caregiver and a mother in law with aggressive Alzheimer's who isn't my sole responsibility but who's future I figure heavily in.

I guess this is more of a vent/rant but what I'd like to find is somebody who's been through this type of pain and found the other side. Somebody to say: hey......it's gonna be all right someday, they will fix this eventually and then you can deal with all that life throws at you again.
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Old 05-02-2019, 11:07 PM
 
270 posts, read 129,050 times
Reputation: 1076
I'm sorry for your pain -- and BTW, sometimes patients struggle with terrible pain, but the findings of the MRI are less impressive.

Let's discuss the terms. Spondylosis generally refers to degenerative changes in the spine, osteoarthritic deterioration. Everybody gets this to some extent as they age, and the degree that one becomes symptomatic varies widely.

Radiculopathy usually refers to a spinal nerve that is compressed or irritated (the layman's term is "pinched") where it passes through the foreman of the spinal column. If your symptoms are leftward (left lower neck, triceps, left trapezius), then you have cervical radiculopathy type symptoms. Does it radiate (hence the term radiculopathy) further down your left arm? Any numbness, tingling, or weakness in the left arm?

Myelopathy refes to injury to the spinal cord doe to compression resulting from trauma, congenital spinal stenosis, or disc disease (either degenerative and/or disc herniation.

The different kinds of pain management injections (ESI = epidural steroid injections; facet joint injections, etc.) are definitely a standard treatment in this field. They may or may not work. And it may take more than one injection.

The orthopedic surgeon says you are not a candidate for surgery. He may be being honest with you, and you would appreciate that. However that may be, you need to get a second opinion.

Since you have seen an orthopedic (spine) surgeon, it would be advisable to get a second opinion from a neurosurgeon. (Yes, I have worked for two different ones during my career as a physician assistant.) If he agrees that you are not a surgical candidate, then it is possible that both surgeons are being careful and simply do not see surgeon has providing you sufficiently pain relief.

Here is where I advise you to be careful. Say you get "two negative for surgery opinions." What then? If pain management hasn't brought you any relief, then you may be come desperate and keeping searching until you find a surgeon who is willing to operate on you. Evaluate such an offer very, very careful. I have seen cases where the surgeon tells the patient "there is only a 50% chance you will get better, and the patient feels like the situation is hopeless and they do the surgery, and guess what? They aren't better after the surgery -- they fell in the 50% group that didn't get pain relief. In some cases, they are actually worse at the surgery.

The neurosurgeon I worked for would never recommend surgery if he didn't think they have a good chance of obtaining pain relief. He was very skilled and very conscientious, and he really wanted his patients to do well. After I left his practice, I used to send him patients to him for a second opinion, and he often would conclude that the surgery the other guy proposed didn't have a high likelihood of success, and then my neurosurgeon friend would outline more conservative pain management options, etc.

Finally, mixing alcohol with Oxycodone is dangerous and an absolute "no-no." These two substances can combine to cause respiratory depression, which can be lethal. Please stop it.

To sum up, please get a second opinion from a good neurosurgeon. Do not despair -- and I know it is hard, but focus on what you can control and fight the pain. Yes, pain is real and it is bad, but we need to react to it, not overreact to it. I hope you are able to find some relief, my friend. You are still early in the evaluative and workup phase. Be cautiously optimistic.

Last edited by townshend; 05-02-2019 at 11:17 PM..
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Old 05-03-2019, 05:44 AM
 
Location: The Driftless Area, WI
2,769 posts, read 1,004,524 times
Reputation: 5921
Townshend is absolutely correct about combing narcotics & alcohol-- real good way to wake up dead.


You're taking 4-6 oxycodones a day, so you're probably habituated to them and getting no effect anymore. Discuss tapering doses with your doc--Don't just go cold turkey or you may suffer withdrawal....They're not working anyway, so why keep on using them?....Once you're off them, then they'll start working again if used occasionally. Don't fall back in the trap of over-use.


Your condition is inoperable for one of two reasons: either the supposed MRI findings can't account for your pain, or the problem area is located in too delicate a spot to risk surgery....


Your description of pain locations is consistent with the first reason: the painful areas are not connected by the neuroanatomy. It's more likely that some mechanical activity (repetitive work or exercise, sleeping or working position, etc) are causing fatigue & spasm of functionally connected muscle groups....It then becomes a vicious cycle-- spasm causes pain <--> pain causes spasm.


What you really may need is good therapeutic massage, not to mention analysis of your physical routines to see if a mechanical correction is possible/necessary.


Stop the pills & alcohol before it's too late!
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Old 05-03-2019, 08:40 AM
 
Location: Mostly in my head
19,793 posts, read 55,479,885 times
Reputation: 18943
Both of the above posters have given you excellent advice! Take it
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Old 05-03-2019, 11:46 AM
 
15,063 posts, read 30,849,250 times
Reputation: 18098
Quote:
Originally Posted by guidoLaMoto View Post
Townshend is absolutely correct about combing narcotics & alcohol-- real good way to wake up dead.


You're taking 4-6 oxycodones a day, so you're probably habituated to them and getting no effect anymore. Discuss tapering doses with your doc--Don't just go cold turkey or you may suffer withdrawal....They're not working anyway, so why keep on using them?....Once you're off them, then they'll start working again if used occasionally. Don't fall back in the trap of over-use.


Your condition is inoperable for one of two reasons: either the supposed MRI findings can't account for your pain, or the problem area is located in too delicate a spot to risk surgery....


Your description of pain locations is consistent with the first reason: the painful areas are not connected by the neuroanatomy. It's more likely that some mechanical activity (repetitive work or exercise, sleeping or working position, etc) are causing fatigue & spasm of functionally connected muscle groups....It then becomes a vicious cycle-- spasm causes pain <--> pain causes spasm.


What you really may need is good therapeutic massage, not to mention analysis of your physical routines to see if a mechanical correction is possible/necessary.


Stop the pills & alcohol before it's too late!
I agree with these posters. Let me add, that as a person myself who has many spinal issues and thought I would need surgery at one time, I have been able to manage things pretty well, and one thing that has really helped is that I see a myofascial release specialist once or twice a month. It is amazing what he can do to get things released. At this point, it would not hurt to possibly get a consultation.

It is not a quick fix type of thing, but results can be dramatic over time. You do want to see one who is well-qualified and has a lot of experience. You can Google it online to find articles giving more info. Good luck to you!

ETA: You may also not be sleeping on a proper mattress for your issues. I had a beautiful, expensive pillow top that was giving me additional aches and pains. I recently purchased a mattress by Purple, and it is amazing. It is firm foam topped with a silicone grid that gives spine support where it needs it but enough give to keep proper alignment. It is amazing how much difference this new mattress made for me.
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Old 05-05-2019, 09:54 AM
 
Location: Nantahala National Forest, NC
26,251 posts, read 5,479,221 times
Reputation: 29415
Agree....second opinion with neurosurgeon. Continue discussing your pain issues with pain management MD in the meantime.
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Old 05-13-2019, 08:49 PM
 
Location: Down the rabbit hole
854 posts, read 937,278 times
Reputation: 2678
I thank all for their input and apologize for being so delayed in my response. I did write up a long response but left it unfinished for a couple of days (without copying) and Win 10, in it's infinite wisdom, decided on one of it's random upgrades and reboots........and it was lost.

I just couldn't muster another response for a few days. This pain is affecting me on a psychological plane I never expected or encountered before. From 5 minutes after opening my eyes in the morning, until Morpheus takes me (with the assistance of 50 mg of Amitriptyline) at night, my life is pain. I was recently prescribed 15 mg of Meloxicam as an anti-inflammatory which I've given up after a 12 day trial period because it just wasn't as effective as 800 mg of Ibuprofen every 4-6 hours. That brings the non narcotic pill variations up to........6? Lyrica, Amitriptyline, Tramadol, Gabapentin, and 2 different strengths of Meloxicam. I have a feeling I'm forgetting one but damned if I can remember what it may have been.

As far as the Oxycodone goes, it isn't ineffective, just not as effective as it used to be. If it was ineffective, I certainly wouldn't be taking it any more. That's the only thing that takes the pain edge off but..........it's not lasting as long as it used to nor is it giving the same pain relief - hence the alcohol.

Now, when it comes to combining alcohol with narcotics, I am acutely aware of how dangerous it is. That was mentioned with me being fully aware of the warnings and admonitions that would follow such a declaration. And rightly so. It's a stupid, stupid thing to do, but it's born of desperation and that's what I hoped to convey, my desperation. I minimize the risks as much as I think are possible. Stop mixing at least 4 hours before bedtime, take no Oxycodone or alcohol during that period and drink a lot of water. It's not foolproof but it's the best I can do under the circumstances. Without the extra "push" I would not make it through most evenings without a trip to the emergency room begging for pain relief.

..............and therein lies the crux of the problem. The pharmaceutical companies and unscrupulous doctors (who created this problem) have made it so hard for genuine chronic pain sufferers to get relief because of all the abusers out there, I feel like a criminal asking anywhere for more pain relief and I feel like I'm being judged automatically as a pleasure seeker who accidentally fell into the opiate trap or worse, a junkie looking for a quick fix.

I will be going for a contrast guided/fluoroscopic steroid injection next week. If that doesn't work, I will really be desperate and will have to consider signing the pharmaceutical rider for the pain management clinic and asking for stronger narcotics. That's the last thing I wanted to do and at one time, vowed I wouldn't. I felt it gave them too much control over my life. Now, I feel that I have no choice. I cannot live with this kind of pain and function in any sort of "normal" capacity. I thought I knew pain, thought I could deal with anything after a lifetime of migraines and cluster headaches along with the various cuts and bruises that come with 20+ years of construction...................but this is so different. There's nothing I can compare this to aside from a rotten tooth with ice sitting on it 24/7 and no escape.

I have an 86 year old father who still lives on his own, and does a pretty good job of it with my help as well as a wife with treatment resistant depression who's also agoraphobic and in poor health. I try to take care of them both as best as I can but this pain is affecting me on a deep psychological level (something I never saw coming) and making it harder and harder to reach out and put on a smiley face to either. Neither needs to see my pain to add to their own problems but I'm finding it harder and harder to hide what I'm going through.

A thank you to whomever reads this and has offered advise (especially townshend) that gives me a bit of hope because as it stands right now, I see this as a death sentence
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Old 05-14-2019, 05:04 AM
 
19,966 posts, read 16,267,184 times
Reputation: 37438
Quote:
Originally Posted by Catdancer View Post
I have been diagnosed with both as well as myelopathy. It started just about a year ago and has only gotten worse as time progresses. It started with what I used to call my "pain tour". Sometimes the pain was in the base of my neck, other times it was behind my left ear. It's moved around to my shoulder and my upper back.......always on my left side. I've had 2 MRIs done (where the diagnosis came from) been on several different SSRIs and SNRIs, none of which helped or had such bad side effects, I couldn't continue them.

All the while, the pain kept increasing. Fast forward to today. In the past 2 months the pain has settled into my lower neck, left tricep and left trapezius muscle. My current medicine regimen is 1 10/325 oxycodone every 4 hours and usually 800 - 1000 mg Ibuprofen every 4 hours. I know this is probably destroying my kidneys and adding to my risk of stroke or heart attack. But, pain like this cannot be ignored. Today, my pain management doctor put me on 15 mg of Meloxicam and told me to stop any OTC NSAIDS.

An even bigger worry is the fact that I've added alcohol to my pain relief at night. I don't like alcohol and haven't drank anything in over 6 years but it adds the much needed boost to get the Oxycodone working. At no point during opioid therapy have I ever felt euphoria or whatever "feel good" things are supposed to follow these drugs. I get enough pain relief to keep me sane - that's it

So far, in addition to the drug therapy, I've done 2, 8 week rounds of physical therapy, which only increased the pain. I've also had a fluoroscopically guided epidural which yielded no results and during the follow up appointment with the attending orthopedic surgeon, he said "sorry, you're not a candidate for surgery and if the shot didn't help, there's nothing more I can do for you". I've since dumped him and now am leaving my fate to a spinal pain specialist who plans on a fluoroscopically guided steroid injection in 3 weeks.

Has anybody else run into these conditions? I'm getting desperate. The pain is absolutely incapacitating. I used to think I was a tough guy because I'd worked in construction for 20 years (probably the ultimate cause for my current condition) had a few broken bones, a few cuts requiring stitches which I fixed with duct tape until I could get to a Dr., suffered through a bout of painful kidney stones and worked for 6 months with a herniated disc which my ortho likened to a stepped on jelly donut.

All that previous pain has nothing on what I'm going through now. I think about suicide at least twice a day to escape the pain, but that is not an option. I have a disabled wife, an 86 year old father for whom I am the sole caregiver and a mother in law with aggressive Alzheimer's who isn't my sole responsibility but who's future I figure heavily in.

I guess this is more of a vent/rant but what I'd like to find is somebody who's been through this type of pain and found the other side. Somebody to say: hey......it's gonna be all right someday, they will fix this eventually and then you can deal with all that life throws at you again.
Why is the ortho saying youíre not a candidate for surgery? I did experience the kind of pain youíre going through with the same associated feelings. Iím so very very sorry youíre going through it. Mine was sciatica in my left leg due to her later discs and stenosis in my back. Once I had the surgery my pain ended. Maybe you need a second opinion on your surgery?
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Old Yesterday, 06:38 AM
 
15 posts, read 3,800 times
Reputation: 45
Iíve been where you are at after a failed 8 level fusion surgery about a decade ago. Something thatís helped me is a RFA-radiofrequency ablation or rhizotomy. I wonder if you would be a candidate? It has a 70-80% success rate in persons who have successful nerve blocks. Itís a non-surgical, minimally invasive procedure that uses heat to reduce and sometimes even stop the transmission of pain signals to the brain. RFA waves ablate or BURN the nerve thatís causing your pain. It can be used for many conditions including spondylosis. Ask your pain management doctor what he thinks about it. It isnít very painful and lasts me at least six months. Hope you feel better.
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Old Yesterday, 07:48 PM
 
Location: Down the rabbit hole
854 posts, read 937,278 times
Reputation: 2678
Quote:
Originally Posted by Iluvbeagles View Post
Iíve been where you are at after a failed 8 level fusion surgery about a decade ago. Something thatís helped me is a RFA-radiofrequency ablation or rhizotomy. I wonder if you would be a candidate? It has a 70-80% success rate in persons who have successful nerve blocks. Itís a non-surgical, minimally invasive procedure that uses heat to reduce and sometimes even stop the transmission of pain signals to the brain. RFA waves ablate or BURN the nerve thatís causing your pain. It can be used for many conditions including spondylosis. Ask your pain management doctor what he thinks about it. It isnít very painful and lasts me at least six months. Hope you feel better.
Thank you, that adds to my recent research in pain relief. My wife recently called my attention to nerve ablation and I am going to ask my doctor about it when I go in for my next appointment, which is supposed to be a fluoroscopic guided steroid injection. I have my doubts as to it's potential effectiveness. The two fluoroscopic guided epidurals I've received did nothing to help, but I'm desperate, so I'll give this a shot. Heck, if somebody reputable told me that mixing dried cow **** with dried roadkill squirrel intestines and Belladonna would work as a pain relief tea.....I'd try it.

Thanks for the word of hope Beagles, it's posts like yours that give me hope and help fight off feelings of total desperation. One of the big problems I have with our healthcare system is how long things take. It probably has to do with overburdened doctors and sometimes insurance restrictions, but when dealing with chronic pain issues, things just can't happen fast enough when it's out of control

I would like to hope that most doctors just don't understand how sanity threatening chronic pain can be, but I'm afraid apathy and fear slows their actions also. I don't know if I mentioned this in a previous post but my PCP (who I very much respect) once said to me: "pain can't kill you"

I think he meant that as a balm for my frustration, in an almost joking way. BUT, what that comment really says to me is: I'm afraid to get you on a higher dosage of opiates with my name on it, or, my practice doesn't allow me to prescribe higher doses. It also says to me that he has never experienced the level of pain I'm living with on a daily basis and I wonder what my recently elevated blood pressure does to my health. Used to be 120/80, now it's usually 150/ 120. THAT probably could kill me. The old saying of "I wouldn't wish this on my worst enemy" doesn't apply here. I would wish my pain on any doctor involved in my care for at least 8 - 12 hours.

Odds are, he (or she) would change their tune drastically after that.
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