Story Of Chiari Patient Who Battled Addiction To Pain Meds

!!WARNING: The following interview deals with mature subject matter including the use of street drugs, addiction, and physical withdrawal.

It seems like it's in the news every other week, another celebrity addicted to prescription medicine. The news media sounds the alarm about the alarming rates of addiction, the government threatens to crack down on doctors who prescribe too many pills. Then, pain management experts come out and say no, pain medicine is under prescribed, the government is creating an environment of fear. Eventually it all blows over until the next celebrity addiction surfaces.

Somewhere, buried beneath all the hype and rhetoric lie real people, in real pain, with real very problems. While most pain experts do agree that people in real pain can benefit from narcotics, those same experts also say that it is vital to accurately screen and monitor patients. For the reality is that people do become addicted to drugs like Oxycontin, and those people are then not only dealing with their initial medical problems and their chronic pain, but they are dealing with a new disease as well, the disease of addiction.

The subject of the following interview approached Chiari & Syringomyelia News because he wanted to share the story of his battle with Chiari, chronic pain, and addiction. Because of the wide reach and permanent nature of the internet, we have chosen to keep his identity a secret.

But with his courage and his help, we shine a Spotlight on the world of doctor shopping, overdosing, withdrawal, and eventually, recovery and redemption...

You have both Chiari and some slipped discs, when did your medical problems start?
In 1994, I fell off a 14 foot ladder and slipped 3 discs in my lower back.

Is that when you found out you had Chiari?
No, not at that point. Previously, I had had symptoms of Chiari since I was a kid, headaches from straining and things like that. But 1994 is when my lower back went out.

Is that when you started on pain medicine?
Yes, I spent about a week in the hospital and they gave me pain meds right away

Did the addiction happen slowly, or was something wrong almost immediately?
Well, it wasn't immediate. Prior to the accident, when I was a teenager, I had used alcohol and some street drugs, but then for about three years before the accident I hadn't used anything, except maybe a little bit of alcohol occasionally. What I understand now, in hindsight, is that this addiction was already there. It didn't start right away, but it didn't take long.

Were the doctors aware of your prior drug use?
Probably not. They never asked, and in all honesty, I never said anything. I didn't think it was a big deal. I thought it was just what teenagers did. I didn't associate it with addiction.

When was the Chiari discovered?
In 1997, I had a car accident. A box truck pulled out in front of me and I hit him about 40 miles per hour. My neck snapped back and I instantly had neck and head pain. Severe.

How was your back prior to that, was the pain manageable?
I was still taking pain medications. I had had back surgery in 1995.

What type of medicine were you taking?
Vicodin, muscle relaxants, Darvocet. Lower level narcotics.

And you were able to function on these medicines?
Yes, I was able to function, but prior to the car accident, it was getting to the point where it wasn't working anymore. I was building up a tolerance. Right before the car accident, [my use of] those medications were just starting to get out of hand.

So then after the car accident, things got much worse?
Absolutely. At that point, I saw the neurosurgeon I had seen for my back and he did an MRI and found the Chiari.

Did you have surgery for it?
No, he said it was Chiari II with a 12mm herniation. At that point he didn't recommend surgery, but we did discuss it. He is a very well respected neurosurgeon, and he said didn't want to do it until I started to lose function, but just for pain he wouldn't recommend it. And I went along with it.

So now you're in a situation where the pain is difficult to control?
Yes, very difficult.

Did he freely give you pain medicines?
Yes, absolutely.

So is that when the abuse got out of hand?
Yes. He had all my medical records and truly believed I was in the pain I said I was, so he didn't have any problems giving me pain medicine. He started me on Oxycontin. I started taking it and valium, plus Percocet for breakthrough pain. Once I got a taste of that, it really spun out of control.

What do you mean by that?
My pain level had increased so I did need stronger medicine to deal with it, but once I got the stronger ones, it really awakened the addiction that was in me already. I quickly built a tolerance and no matter how much pain medicine he gave me I couldn't control it.

Were you in a lot of pain no matter how much medicine you took?
I was in a lot of pain, but the real problem was the medication wouldn't last very long. It's supposed to last 12 hours, and it would only last 4-5 hours.

Did you tell the doctor that?
Yes, but he didn't really do anything about it. I think he might have already had suspicions it wasn't going to work. After I continued to complain to him, he started to increase the dose and frequency.

So what was the line between taking it because you needed it for the pain, and taking it because you were addicted?
After he started to increase it, my tolerance continued to increase and I started to take it all the time. I would tell him that a drug wasn't working, can we try something else. I would use up the drug, but would tell him I tried it and it didn't work. What began happening was I was trying to control my pain, but I began using it without being prudent about it. At some point, I began to use it for emotional pain as well. I started to lose some function, the ability to work well. I started having difficulty with my wife, so I started using these medications to pretty much stay in a state of numbness all the time, as much as I possibly could. After awhile, he [the surgeon] wasn't willing to participate anymore, which I understand. He sat me down and said this is out of control.

How long did it take for him to say that?
About a year and a half after the Chiari diagnosis.

How did you respond?
I was panicked. I wasn't upset with him. I think he was compassionate with me because he knew what I was going through. But there went my way of getting medication. So he sent me to detox.

What was that like?
Awful. The physical withdrawal was punishing. It was horrible. I went through 13 detoxes before I eventually got clean. But what would happen in detox was typical, the vomiting, the shakes, but the pain would be unbearable, crippling. What I found out was that the vomiting would cause my Chiari head pain to increase. That's when it started to become a real problem.

So you're trying to help yourself get off the drugs, but it is aggravating your Chiari?
In a bad way. I can't even describe it. I would end up curled up in a ball in agony.

What was your mental state like as this was going on?
Dismal. I was horribly depressed. I was anguished. My mind would scatter. I couldn't think straight. It was debilitating mentally.

After the first detox, was there counseling too?
They wanted me to go to counseling, but I was in so much physical pain I wasn't interested in anything but getting medication. So I walked out. I had no intention of staying clean.

How did you go about obtaining drugs then?
Some of it is a little blurry, but I went to several pain clinics. Over the next several years, basically I would go from pain clinic to pain clinic until they threw me out. I went to every pain clinic and pain doctor around. What would happen is I would go to a clinic, I'd bring them all my MRI's and medical records and they had no problem giving me drugs.

Did they even bother asking if you'd been on narcotics before?
I don't recall what they said. But it wouldn't have mattered. I said what I needed to to get the medicine, so I probably made some stories up.

But it was pretty easy for you to get the drugs?
It was very easy because I had all my medical records, so there was never a doctor that didn't believe me. And rightly so, because I was in pain. It's just that no one realized I was a drug addict, plus a chronic pain patient. But that's extremely difficult to differentiate. From my reading, I thought, well, I'm just building up a tolerance, that's what happens and I just didn't realize. I played the same game at every clinic I went to. I would suggest something by saying it had worked in the past. They would give it to me, then I'd say oh, this isn't working, can we try something else. I would do that a few times, then I'd say my medication was stolen or something else.

How long would you be able to use one clinic before you had to go somewhere else?
Usually not more than a few months. Then they would start to suspect something. They would give me the benefit of the doubt, but then the more they gave the more I took and they would get real uncomfortable.

So what was the impetus behind the detox attempts?
Well, when I would run out of medicine and a pain clinic would cut me off, there was always a period of time before I could get into to a new one. That takes time.

So this wasn't managed detox, this was you going through withdrawal?
Well I probably did that about 50 times, but I did go to 13 professional clinics. What would happen is I would get a prescription, say for a month, and I would use it in a week. I would ask for more and they would say no, but maybe they would give it to me a week early. So there was a period of a couple of weeks where I would go through withdrawal. Sometimes I would check myself into a hospital. The cycle just went on and on.

For how long?
From 1997 to 2003.

What was going on with your personal life during this time?
My wife of 12 years has stuck with me. Fortunately, I never lost her, but our marriage was horribly strained. For whatever reason she decided to stick with me, probably for the kids. But in the beginning I was able to still work, then I began to lose jobs, then in 2001 I wasn't able to work at all.

Did you ever consider having surgery for the Chiari, did you think that may help you?
Several times I did. I sent my information to a well known Chiari center and had an appointment, but before I left I started to go through a really bad withdrawal so I couldn't go. And I never followed up. The drug addiction and frequent withdrawal made it almost impossible for me to do anything. We're talking every week or two I was running out of medication, going through withdrawal and wake up having to find another doctor.

It was just dominating your life?
Yes. I would tell myself I'm going to try really hard this time, but it was like Jeckyll and Hyde. And one time in detox, someone there introduced me to [a street drug], which I had never intended on using. But I had been so sick and I couldn't keep up with the doctors so I started to use it.

Did you ever try counseling or support groups?
No. I knew I had a problem, but I was convinced because of my chronic pain that there was no way out of it. So I tried to manage my medicines for years. I tried all kinds of things.

At some point you must have hit bottom?
After years and years it was June 24th, 2003. I got to the point where I had run out of resources. I was alienated from my family. I hadn't worked for two years. I had gone through three detox clinics in a week. I was really trying, but I would leave after a day. I had no money. I was horribly sick. I had overdosed four times and had to be revived. I had had double pneumonia three times. Nothing was working. I was so sick. I couldn't get the meds anymore. I was blacklisted at every medical center. I was through. My wife said if you don't go to treatment your family is going to be gone. So, I didn't have a choice and I went.

I went through detox as usual, but then I went to a treatment center about an hour and a half away, so it wasn't as easy for me to get home that time. So I stayed and I got through withdrawal and I went to my first Narcotics Anonymous meeting. That's when something changed. I saw a roomful of addicts who were clean and recovered and found out that there was a possibility that I could do this too.

It gave you some hope?
Right. I was very concerned about what was going to happen with my pain, but I knew I had to get off the drugs. I went to meetings, got out and got real involved in Narcotics Anonymous. I still didn't work for about six months, all I did was slept and went to meetings. A lot of pain, a lot of stress. But I had hope and that's when my recovery started.

Once I was finally clean, the pain wasn't as bad. The drug abuse had made my pain a lot worse. Once all the medication was out of me, I found out I had a pain level that was somewhat bearable. I just started to learn how to live with the pain I had.

How do you cope now?
Through the Narcotics Anonymous program, I started to become spiritual and that's what I rely on. Prayer, meditation, I go to Church and I go to meetings.

Have you repaired the relationship with you family?
Oh yes, absolutely. It's going wonderful.

Are you going to consider surgery?
Not at this point. I realized that I can't afford to get back into the cycle of drugs and at this point I'm able to live with the pain. I've had to change my lifestyle a lot. I need to take naps, I need to take days off. But I learned to do that as best as I can. There's still a lot of pain.

And you're working?
Yes. I can do a lot of things now that I'm clean. The drugs would give me a tremendous amount of relief for a short period of time, but in the end it wasn't worth it. Now, I'm able to manage the pain and live with it.

Why did you want to do this interview?
I wanted to let people know. I know that people with Chiari suffer from a lot of chronic pain. I know not everyone's an addict, and don't go through this, but some people do. I meet them at Narcotics Anonymous. Addiction is a disease. And if you're an addict, it doesn't matter if you're in pain or not. I wanted to let people know that if they are stuck in a cycle of abusing medication, there is hope. There is hope. It doesn't have to be that way.

Do you think people reading this will judge you?
It doesn't bother me at all. The help you can provide is worth more than worrying about judgment. I work with a lot of people in addiction now and the help I give is worth more than worrying about anything. It doesn't concern me.

How do you think pain doctors can strike a balance between giving people much needed medicine and watching out for cases like your own?
There's a clear difference between medications that cause dependence and tolerance, and addiction. For the normal person, dependence does not mean addiction. An addict is an addict, someone who's not, isn't. I don't how doctors can do better except maybe spend more time with it. I firmly believe that people who need the medication should get it. People should get adequate pain control. I don't think medicine should be withheld because of fear of addiction. I think doctors need to spend more time on the issue. Spend some time looking into the background of people; spend some time talking with them and maybe find out if there are some abuse and addiction issues. Try to take a more careful approach. But definitely not deprive people who don't have those issues.

Do you feel let down at all by the healthcare system?
No, they're overwhelmed. There's no way they can keep up with it at this point. They don't have the training. Most doctors are not that familiar with addiction. Today, as part of my program, I've spoken at Medical Schools and I've tried to educate my own physicians. We need to educate the doctors or somebody in the office who can be designated to deal with this. But we shouldn't just cut people off because some are addicts. Like terminally ill people, they should get whatever they want. Don't ever withhold something from a terminally ill person. That's just wrong. People in chronic pain, without abuse problems, should not have proper medicine withheld from them. People who are addicts, whether they have chronic pain or not, need to be dealt with. It's not just going to go away. It needs to be treated.

Are you bitter or angry?
No, I'm not bitter or angry. No. I'm happy to be alive. I faced death several times and ever since then things are different. It's given me a new perspective. I feel like I've been given a second chance. That's why I'm willing to live with the pain. I've dealt with a lot of my issues spiritually. I live a more calm, serene life now.

Ed. Note: In addition to continuing to help people through Narcotics Anonymous, the subject of this interview is studying the ministry and hopes to deal with addiction and urban issues in his work. A short time after the interview he contacted me again because he wanted to make sure that people didn't think he advocated withholding pain medicine from people. He restated that he strongly believes that people should be given the medicine they need to help manage pain.

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