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Old 06-24-2007, 12:26 PM   #1
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camw HB User
Help! Meds no longer work and pain is getting worse...

Hello all,

First, I would like to thank everyone out there who participates on this board. I just found this board and think it is great that there are so many people out there willing to help. Thank you.

I was involved in a terrible car accident in 2001. It left me in pretty bad shape. Ultimately I had several herniated disks, a ruptured disk, and various other minor injuries.

The pain I experienced after the accident was debilitating. I had terrible low back pain, and some bilateral leg pain. The pain in the low back was constant and acute. It ached, throbbed, and I would experience a sharp stabbing pain no matter how I moved. It was awful. The leg pain was minimal at first, and has grown substantially over time. My leg pain initially consisted of patchy, aching/throbbing all over. It was random however, and this seemed to confuse my doctors. I would feel it on my left thigh, and right calf area at one time, and my left calf, and right foot another. Shortly after the accident I had also began experiencing some loss of feeling in my legs.

I have since had 3 low back surgeries (L5/S1). The first was a lami. Unfortunately the disk ruptured immediately after surgery. The second was a fusion at L5/S1, BAK cages and my bone material. I felt decent after the second surgery -- for about 4 or 5 months postop. The back pain diminished some, however the leg pain persisted and continued to get worse. Then my health declined - I crashed. The back pain came back worse than ever. I was back to where I was at earlier - but the pain was getting worse. It turned out that I had psudoarthrosis - my fusion didn't take. My third surgery was a reconstructive surgery at L5/S1. A new surgeon went in and corrected the problem. This time synthetic bone material was used, as was more metal. This time the L5/S1 fusion took. The back pain deminished again, however the legs continued to cause me much pain.

I continued looking for someone to help with the problems in my legs. I went to George Washington Univ Hosp, Cleveland Clinic, The Mayo Clinic, and Johns Hopkins. I got a lot of opinions and found a great surgeon at Johns Hopkins. He was confused as to why I was still experiencing leg pain, and if I was, was convinced that it was permanent. He did however did full imaging of my spine, something that was never done. I had always had low back pain (so that is where they focused imaging), but he wanted to have a closer look at my entire spine. He found that a syrinx had developed and had caused the shape of my spine to change. They were very concerned about the syrinx, and performed cervical surgery within a few days. It was never to help or correct the problems in my legs, but was necessary, as the continued growth of the syrinx would continue to cause the spine to misalign.

Now, several years, my leg pain has progressed into full bilateral pain, no longer a patchy pain. The leg pain starts up top and is constant and consistent to the toe. I now experience 3 different types of leg pain. The first is a dull overall achy feeling. It is now constant, and never lets up. I also experience a throbbing feeling - like a headache. And the third, a new symptom, a shocking pain in my arms and legs. It can last for 5 minutes, or 4 days. It is terrible. I cannot function when I experience this pain. I also have continued frequent loss of feeling bilaterally, which is getting worse.

At this time my back pain has returned, and I have developed an acute stabbing pain in the right hip area. I have received trigger point injections to help it, nut they donít seem to help much anymore. The hip pain gets so bad that if I put weight on my leg it causes the pain, and I cannot walk.

I have seen pain management doctors throughout this ordeal, and most have been helpful. My current pain doc is a neurologist, who specializes in pm. He works out of DC, and Hopkins. He has been great about my meds, however I have gotten to the point where I am on such high doses, and they don't seem to be doing the job they did 2 years ago. We rotate meds some, which used to help, but not anymore.

At this time I am currently taking: Methadone 10mg 5xday, Mophine 30mg 6xday, Fentora 400mcg 2-3xday, Fentanyl patch 100mcg/hr every 72hrs, Seroquel 50mg per day, Tizanidine 4mg 3xday, Cymbalta 60mg 2xday, and a sleep aid.

With everything that I am taking, the pain is still there. I know to expect that it is just going to take the edge off, but it's getting to the point where I feel as though I am not taking any meds.

Does anyone else experience this? Can anyone offer any suggestions as to meds that I can ask my doc to try? Trust me when I say I don't want more, I want to cut it down some. I was hoping there might be something that I haven't tried that may help me. I have tried most of the normal meds such as vicodin, oxycontin, dilaudid, roxicodone, but it has been a while since I have taken them.

Any help would be appreciated. As most of you already know, this condition has completely changed my life. My wife and I are at our wits end. We just don't know what to do anymore. It seems like I spend my life in bed because itís the only place I am comfortable.

Thanks for listening.

 
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Old 06-24-2007, 11:36 PM   #2
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Join Date: Jan 2007
Location: Hawthorne, California, USA
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kkmom HB User
Re: Help! Meds no longer work and pain is getting worse...

Camw, first I want to welcome you to the boards, I am pretty new to the pain group, but have found everyone extremly helpful. I am so sorrt for what you are going through and for all of the pain that you are in. I am a back pt. myself wih leg pain and I know how horrible that could feel. I too have a hard time with pain meds, I have been on everything and just was referred to pm, I see them next week. I am currently on fentanyl 100 mcg every 72 hr and norco every 4 hours as needed for breakthrough pain, and some other stuff. The question I wanted to ask you was are you on any meds for your leg pain, it sound like sciatica pain and reg pain meds dont touch it. I have been on 3 with no success, but maybe you can ask your doc about that.

I am praying that you start to feel better soon. Take care
Rachel

 
Old 06-25-2007, 12:43 AM   #3
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camw HB User
Re: Help! Meds no longer work and pain is getting worse...

KKMom, Thank you for your kind reply.

My PM doc has had me on Cymbalta for the leg pain, and it helped initially by dulling the achy/throbbing pain, but nothing touches the electrical pains. I just feel like I am plugged into the wall sometimes, and nothing seems to help.

Can you give me some idea as to what you suggest, or what you take for the leg pain. I know in the past I have been on Neurontin, and recently Lyrica, but the lyrica made me feel wierd. Are those the types of meds you mean? If there is anything else you can suggest, I would love to hear.

Thanks again for your kind words.
Cam

 
Old 06-25-2007, 06:35 AM   #4
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Location: Fredericksburg, Virginia
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lostmary HB User
Re: Help! Meds no longer work and pain is getting worse...

Cam,
I don't know if anyone has mentioned RSD (Reflex Sympathic Dystrophy). You could check the board here for it. One of the main signs is a burning/electrical feeling most of the time. Also, pain that doesn't go away, or is worse that it should be. there are many different symptoms for it. I have it in my foot, and my PM (he's in Woodbridge), put me on Neurontin. It is used a lot for the burning pain. It is an anti-sizzure. Another one used is Lyrica. both are great. I love my neurontin. the buring/electric pain is almost gone. Not sure how it works, but after abt 2 wks, I started to feel like a human. Haven't felt that way in over 4 years. It's just a thought, but check us out here on the healthboards.
Mary

 
Old 06-28-2007, 08:42 PM   #5
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Boxerluver HB UserBoxerluver HB UserBoxerluver HB UserBoxerluver HB UserBoxerluver HB UserBoxerluver HB UserBoxerluver HB UserBoxerluver HB User
Re: Help! Meds no longer work and pain is getting worse...

Camw,

Has your PM ever mentioned the pain pump? With what you have tried, I'm not sure there any other stronger drugs out there. I know for some people it has given them their lives back. Anyway, just a thought.

Take care
Melissa

 
Old 06-29-2007, 06:59 AM   #6
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ejreiss HB User
Re: Help! Meds no longer work and pain is getting worse...

I don't know about rsd or any other problems but I do know that the nerve damage that may be present from all the surgery and pinched nerve problems may be causing the shocking sensations you are feeling. I have had three lower back surgeries and several other procedures and a emg test showed I still had nerve damage. For a long time I had several symptoms but I also had the one you are describing which felt like you were getting a electrical shock from a wall outlet. The first time it happened it scared the hell out of me because I didn't know what was going on. They were pretty severe for a while but they got better over time. I still get them 4 years later but it dosn't even phase me any more. I am so use to it and there is nothing I can do about it. I think you'll find they happen less often and less severe over time. Hope you get some relief.

 
Old 06-29-2007, 12:51 PM   #7
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mindmltn HB User
Re: Help! Meds no longer work and pain is getting worse...

I know exactly how you feel.
I have had Sciatica for 3 years now and it is terrible,
I can't walk without a limp and sometimes I can't walk at all.
Anyways I have been taking Noritriptiline for the nerve pain and it helps immensely. I didnít notice it working at first but after taking it for 4 months I ran out and the nerve pain in my leg was so bad I couldnít walk.
My PM Doc said it is a nerve medication but I havenít done a lot of research on it so you might want to look it up on the web.
I hope that you get the relief you need.

 
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