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Old 03-15-2015, 10:32 AM   #1
FlaBill1957
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Location: Seminole, Fl
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Hi everyone! I am brand new to these boards. My name is Bill. I live in Seminole, Fl. I just wanted to introduce myself and share my story. Maybe it can help someone with similar troubles.

I was injured in a MVA in 2000. I had compression fractures of two cervical vertebra with no disc displacement, but quickly developed spinal stenosis from bone spurring. I was on oral opiate pain meds from 2000 to 2005, until my 22 year old son overdosed on some Methadone that was left over from past months Rx's. After his death, I had trouble taking an aspirin, let alone any real pain meds. I started to see a psychiatrist for pill phobia, severe depression and panic attacks. My Pain Management doc recommended a pain pump as an alternative to all of the pain meds I was taking every day. I had a trial pump in for 4 days with outstanding results, but my insurance denied the permanent pump (Approved the trial pump, but denied the permenant pump? You figure!). A year later, there was a clinical trial available for a new pain pump. It did the same as all the other pumps, it was just a new model. We went ahead with the placement, again with excellent results. However, during the 'tweaking' period, while trying to find the correct dosage, I began having bad side effects: Legs swollen to twice their size and complete numbness in left anterior thigh and left foot. We reduced the daily volume by 4mg and swelling disappeared but numbness continued. Was getting about 50% relief at this level so put up with it for next 8 years, with some, but minimal, pain meds for the 'break-through' pain.

I was very conscious of the danger of infection from poor technique in the refill process. My PM doc had an excellent PA who did a wonderful job refilling with the upmost care in sterile technique until her leaving the practice two years ago. The I started having the doctor refill the pump from then on. His careless and cavalier attitude scared the hell out of me. He would insist on refilling the pump in street clothes with just exam gloves on and without any prep or drape and would occasionally touch the refill needle on something or drag it across his lap (We would refill the pump while sitting facing each other). When I called him on it, he became belligerent and argued that he was the doctor and knew what was best for me. I kept waiting for the symptoms of infection to appear. I was positive that I would begin seeing the signs for meningitis at any time. My worries eventually turned into a phobia that I had to address with my psychiatrist and therapist. We are still working on that one.

I was finally able to convinced the PM doctor to start to wean the volume down to 0 over about 8 months. I had to increase oral meds again as the pump effectiveness decreased. Now there is only saline in the pump and it is set at a tiny flow rate daily to keep catheter open. He keeps asking me when can he take the pump out. He wants to remove the pump but leave the catheter in. In all my years in surgery I've never heard of such a thing! But his uncaring attitude as to my health concerns and his aging since the insertion has me very hesitant to let him touch me surgically. BTW, his much younger and very well trained partner did the insertion. (He has also since left the practice)

Now I have a pain pump doing nothing, sitting under my abdominal skin (As I improved mentally and physically I've lost 120 lbs and it's very visible now, even through clothes and has become a 'shelf' for everything as I heard mention elsewhere in this forum) At present time, I'm looking for a neurosurgeon who will evaluate me and agree to remove the pump. When I was hurt, I was told by a neurosurgeon friend of mine that with my symptoms and age that surgery was not an option. There was a very real possibility of making things much worse rather than helping my pain and symptoms. But it's been 15 years since then and surgery might be a viable option now.

As far as my oral meds go, I had to increase them up to a point above what I was on before. I was basically in a coma from the meds. Bedridden, could not do anything or go out by myself, stopped eating (the main reason for my weight loss) my depression worsened and I isolated myself from everything and everyone, including my family. So, over the past 1 1/2 year I've been able to reduce the amount of pain meds, mostly morphine and dilaudid from 850mg daily to 90 mg daily, where I am at now. To be fair, my psychiatrist did offer to help with the reduction of the meds, but he wanted me to take another drug to replace the opiates, then wean down off of them. I really didn't feel comfortable just switching drugs only to have to wean away from them also. It seemed like a heroin addict taking Methadone. He has been wonderful in his support of what I've accomplished so far and I don't think I could have done it without his help, even if it was just moral support.

I am in pain constantly, fighting an addiction to morphine, facing a divorce, do not have a doctor who is at least even understanding of my predicament but, and it's a big but, I can function again, drive, make my own meals, take care of myself hygienically once again and am looking forward to getting off the meds 100% soon and also looking at a much better life.

The pain? Well, I've learned that a person can withstand much higher levels of pain than most of us think. And I also believe that when I reduced the opiate meds down it somehow 'reset' the pain receptors in my spine to where they were originally before the opiates destroyed their ability to correctly interpret pain levels. I've recently learned about something called, "OIP: Opioid Induced Pain" and can't help but wonder if the drugs actually made the pain worse rather than better. I just have to find a doctor who can understand what's been happening to me in the last 15 years to get some good, honest advice about everything.

I sometimes feel like an alcoholic who has just stopped drinking, or someone who has been in a coma for 15 years and has only recently woke up. The last 15 years has been like a fog to me. What I remember is very little. But now, at least, I have a sense of control again that I had slowly given up as my dependence on the drugs progressed. Now I can make my own good, logical decisions again.
Wish me luck...

Last edited by Administrator; 03-16-2015 at 08:12 PM.

 
The following 4 users give hugs of support to: FlaBill1957
firemom31 (05-09-2015),gmak (03-23-2015),momzworkin (03-18-2015),tortoisegirl (03-18-2015)
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