Without question, this is a rant. I’m so angry I don’t even know what to do with myself. I’m ticked because I feel trapped and there’s nowhere to go and nothing I can do about it.

My wife had back surgery two years ago. It was a fusion, which is pretty hair stuff to be doing on a 24 year old. Normally people don’t develop back problems like she has until after 50. Still, her disk was pretty much disintegrated and there was nothing else she could do. During this surgery, a nerve was pinched meaning that she now has constant pain, and will have it for the rest of her life. Her pain management doctor put her on an array of drugs including Vocodin and Neurontin.

Another option was presented because taking these drugs for the rest of her life is not a good thing. This option was to put a nerve stimulator in her back. This is a battery driven device that they surgically implant into her back to constantly stimulate her nerves and trick the brain into thinking there is no pain. So she did this a few months back in hopes that it would cut down on the pain. She had a followup exam scheduled for two weeks after the surgery. Unfortunately, her job (already at risk due to the time she had taken off for surgery) gave her reason to believe they’d find a reason to let her go if she missed an important meeting that was scheduled on top of her follow up (a whole other rant). So she canceled and rescheduled, but the only time available was three weeks away. When that appointment came up, she was extremely sick (the bedridden, I can hardly walk kind) so she rescheduled again. This time they couldn’t schedule another appointment until over a month away. She was upset, but what could she do?

Because Neurontin is a BAD drug, she gradually weaned herself off of it, letting the stimulator pick up the slack. This was working well until her pain doctor started reducing her allotment of Vicodin. The doctor took her from five pills a day down to two, which was completely unreasonable. For a week my wife lived in abject pain trying to get through to the doctor to up her prescription. The doctor’s office was in the middle of a move, so they simply didn’t return her call. Finally she ran out of pain medicine and I had to sit there and watch her writhe in pain for a morning because she had no medicine. Finally we got through to them through repeated messages left with nurses that she had no medicine. The doctor called in an emergency prescription, but instructed my wife that the reason she didn’t have enough drugs was that she hadn’t come in for an appointment. It’s not like my wife was avoiding the appointment, though. It’s that the office can’t seem to schedule anything in a reasonable timeframe. The doctor grudgingly upped her prescription back up to 3 pills a day, but as we found out in the last two days that simply isn’t enough. She didn’t sleep at all today and I once again woke up to her crying in pain.

On top of all of this, the stimulator is cutting in and out so I fear they’ll have to go in and fix it, though I don’t know this for sure. Her doctor doesn’t know this, yet, though so she isn’t factoring it into the pain medication considerations. Two days ago my wife ran out of her muscle relaxer, which also helps to ease the pain. The doctor would not renew it because she hadn’t yet come in for her appointment.

We are traveling this weekend and I know there is no way my wife will be able to function on the allotment of medication the doctor has prescribed for her. She tried to call the doctor and explain this, but the nurse just explained she needed to come in first. My wife said she would go in right then, but they said they wouldn’t able to see her until Feb 8th. By this point I’m beside myself at the way she’s been treated- they have not returned her calls, blamed her for their overbooked schedule, and used reduction of pain medication as a punishment for someone whose life is dominated by pain.

I finally called the nurse and explained all this (not in a belligerent way, mind you. I’m generally calm even when I’m angry), but when I started explaining that all of this was driving my wife into depression she simply said “You are not my patient and I will not talk to you about this any more”.

The kicker is this- there’s no real option for us. This practice is pretty much the only game in town. There are other doctors, but they all are pretty much booked the same. I’d still like to change doctors on principle alone- I don’t feel like my wife is being cared for at all- but my wife is too tired to fight with them.

It hurts to see someone you love go through so much pain and watch those who are supposed to guide her through this show so much disregard for her. If I go to a restaurant and the waiter ignores me, 9 times out of 10 I don’t go back. My wife’s health is far more critical than a night out for dinner, but I suppose we just have to live with being ignored.

I’m sorry for this, but I just had to get it out somehow.

That is a horrible and outrageous story. It sounds like you really need to change doctors to someone who understands. Even if the office is overbooked, that's no excuse for not being available when they are moving their offices, or for reducing pain medication because of a missed appointment.

Have you tried showing up at your doctors office and saying you'll wait? Or asking for them to call you if they have an opening sooner?

If all else fails, begin looking into filing a formal complaint with the texas state board of medical examiners.

Best Wishes,
Matthew

I am truly sorry to hear this. I wish you and your wife all the best. This is a sad situation, and I do not have any real hope or recommendations to offer. Most doctors seem to be extremely afraid of pain management - the fear of being sued for too much or too little care. Best wishes to you both.

I would say, though, that her employer should be taken to court, or at least threatened with legal action. It does nothing to help you at this point, but perhaps they would be more responsive to a lawsuit or bad publicity.

Sorry to hear about your family's pain...

My father-in-law has terrible back pain and is also struggling with a medical system that seems unwilling and/or unable to properly deal with it. It can be very frustrating to say the least. He wears a TENS (Transcutaneous Electrical Nerve Stimulator) unit that does provide some comfort. He also has his back fused and has some metal rods inserted also. His pain levels go up and down. He'll have a stretch of a few bad weeks and then the pain will dissipate for a while. When the pain is bad though, it is very hard for him to deal with, without strong medication. His doctors have told him that advances are being made in this area and better solutions will be coming. He has been dealing with his pain for about 10 years now.

On a related back problem note, my dog (a daschund, and thus prone to back problems) woke up screaming in pain the day after Thanksgiving. It was diagnosed as a calcified disk, rubbing against a nerve, but not the spinal cord. She's been on steroids and a muscle relaxant since then, but we are now reducing her medication. Hopefully she can avoid surgery (so far so good) as the disk in question is located between her shoulder blades and very hard to get to.

I wish you and your family all the best.

Peter

Miami, FL USA

What a truely sad story. I'm very sorry to hear this and you and especially your wife have my sympathy.

I've had medical problems too in the last year, and, though they are absolutely not comparable to what your wife is going through, I feel I can sympathise somewhat.

My condition was/is that now and then I get terrible stomach cramps. But not just a little bit of cramps, but rather the HUGE, tears-rolling-from-your-eyes, rolling-up-like-a-foetus-from-the-pain-kind of cramps.

I've visited several doctors, and none could help me. Apparently, nothing turned up from the examinations, and all the doctors could tell me was that I was in perfect health. They always told me the same thing : "you have to learn to live with it". Trust me, that's the LAST thing you want to hear when you're in almost constant pain. I mean, it's easy for the doctors to say, but this thing was really killing me AND my social life. At one point I almost didn't leave the house anymore because I was too afraid I would get one if those "cramp-attacks". (the are very unpredictable, and I really can't predict when then will "strike")
Ok, so maybe the doctors told me that I was in perfect health, but what was wrong with me then ??? This started in october 2003, up to this day still lasts. And I still don't know what's wrong with me.
I pretty much gave up on traditional medicine. I was clear that they couldn't (and from what I had noticed : didn't care enough either) to help me.

Then one day (a couple of months ago) a collegue of mine referred me to an osteopath. This guy also did acupuncture. Why not give that a try ?
Now, normally, I would NEVER have even considered it (I'm a real down to earth guy, and all this stuff sounded way too weird and "dreamy" to me), but I was at that stage where I was desperate and ready to try anything.

And well whatddayaknow... it helped. Slowly but surely, I'm improving. I'm still not 100% cured yet, but for the first time in months I'm actually confident that one day, I will be.

I still don't know what has caused it, or what it is causing for that matter, but at least things are improving, albeit slowly. So there is hope.

Now, what do I mean to say with this post ? Basically : I've been let down by traditional medicine a couple of times too. Don't think of it as the only option. There are alternatives, like acupuncture. Contrary to what I thought myself up to last year it's not total BS. It really works, and maybe it can help your wife too? (ok, probably not to cure her condition, but maybe it can relieve her pain)

All I can advise you is : try it. I was hesitant at first too, but now I'm *so* glad I did.

Hope this helps a bit...

I have an OMRON E3 TENS machine, a relatively low cost beastie ($70?) about the size of a TV remote control that you should be able to buy online ( E4 and E3). I realise that she has an awful problem, but every little bit helps. TENS really does help (it is an external version of the stim), and is benign - it is used by pregnant women with lower back or abdominal pain.

Have you considered simply driving into the emergency department of the local hospital?

Do you have a district medical ombudsman or other independent official who you could submit a complaint to?

I know what back pain can do - grind you into the dust, and keeps on grinding. Tears are often insufficient: my support and best wishes to you both that you can get this resolved quickly, and satisfactorily in order that you can resume some normal semblence of life.

Good luck - if we can help, I'm sure you know you only have to ask, OK?

I'm very sorry for your wife's suffering. No one should have to go through that. I hope you can receive my love over the internet.

Do you have good health insurance? How about just making a trip to the emergency room? Also, around here there are lots of urgent care clinics that only take walk-ins. If your wife can handle the time in the car perhaps it's worth driving to a larger city to get immediate care.

Muscle relaxers like Soma are available over the internet but narcotics like Vicodin are controlled substances and I don't think you'll find anyplace claiming to sell them that isn't just going to rip you off.

One more thought, do you live in a state that allows marijuana for medicinal purposes? Clearly, going down that path isn't something to be taken lightly but I think I'd rather smoke dope every day to manage my pain then become dependent on a narcotic.

This guy also did acupuncture. Why not give that a try ?
Now, normally, I would NEVER have even considered it

I can add a second-hand anecdote here.

My son Fred is an accomplished bicycle racer. One time back in the '90s he was on a racing team stationed in (I think it was...) the Netherlands. He woke up one morning with such terrible back pain that he was unable to get out of bed unassisted. His coach took him to an acupuncturist who did not speak any language Fred knew how to speak.

Using sign language, Fred tried to convey to the acupuncturist that his back hurt, and became rather frustrated when the silly needle-poker started sticking pins into his feet. "No, it's my back, you dummy" or words to that effect were said.

Being thoroughly inculcated with Western medical concepts, Fred was fully aware that sticking needles in his feet wasn't going to fix his back -- so when the acupuncturist indicated to him to get up, the treatment was done, imagine Fred's amazement to find the pain was gone.

He was back on the bike that afternoon.

tanstaafl.

Jeff, these news saddened and angered me a lot. Accept my best wishes.

Perhaps trying with accupuncture is not a bad idea. Even partial improvement that would allow the dosage of painkillers to be lowered would be beneficial. Accupuncture seems to have actual physiological underpinnings (it is not a simple placebo, so for it to be effective it is not neccessary for the patient to put a lot of hope in it - as examples in the thread illustrate); it usually just alleviates symptoms, but that's what you need in this case.

My thoughts are with you. Good luck!

My wife had back surgury back in high school (before she was my wife, of course) with a year-long recovery time. She still has daily pain to this day (13 years later). I feel for you, man.

Let us know how things are going, OK?

My significant other has a very similar story (even down to the "Neurontin is a BAD drug" line!), and I really feel for you. Please let us all know how things work out for you and your wife: And they Will!

Well, here's an update (been out of town for the weekend). The doctor ended up calling us and really working hard to make things better. She had a long conversation with my wife about finding out exactly what her goals are, and then gave her the appropriate prescriptions. They also worked out a schedule so that my wife can see her sooner rather than later. Apparently the nurse who we had so much trouble with had gone to the doctor and explained everything, including (to my surprise) her own unacceptable treatment of my wife and I over the phone. She told the doctor she'd been having a bad week and had taken it out on us. It counts for a lot in my book that she did that- the doctor came to us apologizing before we even brought it up and told us the nurse had been reprimanded.

This still doesn't fix some of the issues like failure to return phone calls and "punishments" of reducing medication, but now we're on the right track and they seem to be trying to work with us.

My wife had a much better weekend and was very careful not to take meds unnecessarily. She was still in pain, but not unmanageable this time.

So all in all, we're finally making some progress. I wish it hadn't gotten to this point and there's still a long way to go, but at least we had a good weekend- and that counts for a lot.

Thanks everyone for the support. Reading down through this thread reminded me how much for granted I take my own health. With all of our medical advances, there's still so little we can do about many of these health issues.

You know, pain mgmt is a touchy subject of course- requiring a certain level of care from the doctors issuing it. Your doctor is practicing mad medicine in my opinion by treating the situation this way. find another Dr, it's apparent this one doesn't understand the effort this kind of speciality requires

/works at a hospital/

I'm glad things are better, but you might want to consider going to a regional pain manaement clinic...perhaps at one of the universities? Their only purpose is to come up with a viable management plan. I can also put in a plug for the TENS and for acupuncture, plus, when the muscles get involved, a shot of lidocaine into them seems to work wonders. Has she had any OT? That should be a part of any pain mangement regimen. Hope things continue to improve....!

Jeff,
Bringing up an older thread (although an issue you're still dealing with, to be sure); there was an article in today's NY Times, and from its exposition, your wife's experience sounds all-too-commonplace.

Link.


Best,
-Zeke

Thanks for posting this (I just got a chance to read through it).

I can definitely relate to the "getting chastised for not getting the doctor to take care of the pain properly" part. I had the pharmicist get on to me for my wife being without pain medication when I explained what was going on. He said I needed to be more comunicative with the doctor. I was doing my best of course, but often you get stuck between someone making you feel bad for taking so much medication and somone telling you you shouldn't be in pain and that you're not taking enough.

Probably the hardest thing about this for my wife is the stigma associated with pain killers. She can't go for anything beyond a few hours without taking Vicodin (or a comprable generic), and this makes her feel like a drug addict. Often she tries to second guess herself, wondering if she's somehow making up the pain to feed an adiction. The doctors don't help with this either- they are all paranoid that she's manipulating them into giving her drugs she doesn't need.

And then there's our friends, who I think are convicned she's a hypocondriac. She never wants anyone to know she's in pain because out of pride and not wanting people to think she a constant complainer.

I guess I'm just rambeling here, but it's amazing how complex a life can get when you have to deal with pain management. It's not just about being able to treat the pain, but all of the social implications that go along with itt.

HI.

I think, for what it's worth, that the opinions of others must take a low priority to effective pain relief. Chronic long-term pain can completely destroy your life if it's not dealt with properly, but many people don't understand this at all. Usually, of course, because they have had no personal experience with pain of that nature and can't relate to it.

11 years ago my mother was diagnosed with terminal cancer. She quite rapidly developed severe pain as a result of the tumor, pain which the chemo exacerbated. Our GP, who was a wonderful old guy, had the attitude that there was no excuse for someone to be in severe pain, when there were many very efficient methods for dealing with it in most cases, once you got over the idea that these methods were somehow wrong.

He had no hesitation in immediately prescribing diamorphine in low doses, along with a laxative to deal with the only real side effect. Although the tablets were as I recall only 5mg, his advice to her was to more or less take as many as were needed to make sure she was comfortable, mentioning only a safe upper limit per day (which was fairly considerable). The more she took the more likely constipation was, and over the long term a physiological dependency would occur, but as he said, these effects were readily dealt with if she recovered, and if she didn't, it wasn't a problem.

The effect of the morphine was so powerful compared to any other painkiller she had been given that it allowed her to live out 90% of the 8 months she ended up having pain-free and active, doing everything she felt she needed to before the end. Without it, she would have probably been bedridden or crippled to the point of inactivity, which would have added insult to injury.

The problem with opiates is really one of perception, equating use with abuse. They are, as a class, the most effective painkiller there is, and in most respects the safest. There are few side effects other than the shutting down of peristalsis in the gut, hence the constipation that often occurs. The physiological dependency that usually occurs with long-term use is dealt with by tailing of the usage slowly rather than abruptly stopping, and as far as I have been told in the vast majority of cases causes no problems. Addiction isn't really any more likely than with many other, often more common drugs such as tranquilizers. Considering how many people nowadays seem to be on Prozac, for instance, I'm surprised morphine is disencouraged like it is.

My old GPs attitude was unusual for an ordinary doctor, but I have met a number of pain specialists who said he was completely right. Pain can be dealt with in almost every case, and if a doctor can't help with it, you need to hunt around until you find one that can.

I guess one part of the problem is that there isn't any really objective way of measuring how much pain someone is actually experiencing. What might be acceptable to one person is unbearable to another, and if the first is doing the prescribing to the second, you may well end up with substandard results.

If your friends think your wife is complaining too much about pain, perhaps you should find another friend, one who hurts a lot and can sympathise

pca

I'm not sure if this technique will ever be applicable outside of an emergency/battlefield medicine setting, but maybe something similar will. It's at least nice to know there are doctors out there who give a damn about dealing with the pain while the rest of the doctors are playing against much steeper odds trying to fix the diseases that cause the pain.