9 replies to this topic

[LesleyH-Y]

I was wondering how many para and quads suffer chronic Spinal Cord Injury nerve pain, what you have done with it, how you have found relief and if there are any fantastic doctors in the area that have helped. We just spent another evening wasted at Mt. Sinai and received minimal relief t...hrough a couple shots of morphine. Basically another pat on the head, offer of percocets, treated like a junkie again and scooted out the door. His pain management doctor seems to be at a loss as to what to do with him. He is a T-12 incomplete paraplegic who suffers terrible flares every 6 weeks or so where his normal pain meds won't alleviate it. He takes the max dose of gabapentin and 30 mg 4x a day oxycontin, but still suffers breakthrough pain that can only be brought under control by 2 shots of dilaudid. He has had referrals to Neurologists, but either they don't accept Vista or are not taking new patients. I hate hate hate Medicaid. You have to have referrals to go to the bathroom, it seems! We are getting married in about 6 weeks, which means- judging by history- that he will be in a flare about that time and we will be out of town. I am concerned about dependency/addiction to the pain medications. He does run out on a regular basis, and medicaid won't cover the increased dosage that his pain Dr has written. He can't have a pain pump or stimulator implanted because of the hardware in his back. His doctor has flat out said he would have no idea where to do a nerve block, because it seems that the pain he suffers isn't controlled by the femoral nerve. His main complaint when the pain hits is that it feels like lightning strikes in the bottom of his left foot, but it radiates down the front of his leg alongside his shin. Also, his right leg (the one with the least sensation) and ankle flares, but not as regularly as his left. I read on another site someone describing almost identical pain sensations, and they were told it may be a screw causing it. I am wondering if the fusion and hardware hasn't shifted some in his back. No one can seem to answer that.
I know I have rambled here, but thanks for reading and any responses/advice would be gladly appreciated. You can email me here or at Lesley.Hilton@live.com with responses. I am at wits end, it hurts me so much to watch him suffer and not be able to ease this for him. I love him so much and all I want to do is be able to "kiss it away" and make it all better, but I know that won't happen. I am his biggest fan and advocate, but he is a stubborn SOB and I love him for it, so I still want to do all I can to help him. Thanks, ya'lL!!

[edlee]

I can only say that I feel for you guys, I'm fighting a similar battle. All you can do is keep fighting. If I find something that helps me, I'll post it, but since I can't get appointments more oftewn than once a month or so,, it will take time.
ed

[LesleyH-Y]

Thanks, Ed...

It is a constant battle with the ER every time we go. I wound up getting JHACO involved at one point, the time that the doc threw 2 percocets at him with security at his back and told him "there's your pills, you need to leave now." Granted there was some aggravating circumstances going on, like his brother stalking the halls and bugging everyone to help my fiancee, which they didn't. My issue, aside from the way they treated him, was the fact that he was there 2 hours before they put an ID bracelet on him and had been taken for xrays and scans without proper patient identification protocols. So of course, now there is a flag in his chart that they are not allowed to treat him without first contacting his PM doc- which is fine, but they still do minimal treatment possible, even with authorization from his PM, but on the upside, the ER visits are much faster- they want him in and out of there (and me too...LOL).
Today we followed up with his PM Doc and thankfully they upped his oral pain meds to 8 mg dilaudid and finally Medicaid approved the lyrica- been fighting that for a few months. BUT- the best news was that the pain doc FINALLY contacted a neuro-surgeon and he came to the PM office and did a consult, since he doesn't accept his HMO version of the medicaid yet. Turns out he is the head of the Neurosurgery Dept for the hospital and is very intrigued by this case. Considering his injury, he is lucky to be alive, much less a partial para with some movement, even the Neurosurgeon was like "wow" when he told his story. He was crushed (folded) by a car... he had a salvage yard in Hawaii and was pulling a gas tank out of a car and the lift gave way and crushed him. When I said he was hard headed and stubborn in my earlier post, I meant it! He didn't even have a concussion!! ha ha ha. He had a fantastic surgeon who flew from Oahu to Maui to handle his case 5 years ago, and the Neuro today said that the guy did an amazing job to restore what little function he has to his left leg. He is going for an MRI soon and the Neuro will be involved in the readings to see if there is a disk issue, shifting of hardware or what may be going on.
Considering his injury, he is on very few medications. He doesn't take Baclofen, no need- he is on the Max dose of Gabapentin, and now tapering off that some since they are starting him on 300 mg of lyrica. Other than that and the pain meds (30 mg roxycodone 3x a day, prn and now the dilaudid to knock the nerve shocks down), thats it for meds. Aside from atrophy in his legs and the fact that he can't gain weight, he is skinny as a rail, he is in great overall health and mental health as well. Hopefully the lyrica will help him to put on a few pounds. He says he is 150 lbs, but he hasn't been properly weighed in quite a while. I think more realistically he is about 125.
Anyways- just rambling at this point and thankful to have a place where I can do that now.

[SSG.Bridges]

Hi I am sorry you guys are going through this to I have similar pain that nothing touches for the pump and stimulator that's bs I have both in place with my hard ware a good nuro surgeon should be able to place either one or at least do a trial. I agree with ed keep fighting that's all we can do I am looking at the drez procedure and hoping that works it maybe worth looking into. I will let you know if I find anything else that might help... Again I am truly sorry to hear he is in such pain it makes things very difficult... Best of luck to you and congratulations on your up coming wedding.

Edited by SSG.Bridges, 19 August 2010 - 05:57 AM.

[Ragersilver]

Hi I am also on most of the meds you have mentioned and was wondering does he take the antidepressant drug AMITRIPTYLINE?,this drug works with Gabbapentin to give a lot more relief,just a thought.I take one does of 50mg before bedtime and found without it the Gabbapentin is far less effective......................

[tyvin]

Boy do you guys need a good pain management program. 30mg of Oxycontin? Are you sure it's not oxycodone? Oxycontin comes in even doses (10, 20, 40, 80) and is the extended relief one where as oxycodone works for only 4 hrs and is usually prescribed for break-thru pain with Oxycontin. Anyway 30mg is a low dose for his type of chronic pain. He should be on Oxycontin for round the clock relief and have oxycodone for break-thru pain. Also there are anti-depressants that are prescribed for pain management as well. Along with a host of other things. Oxycodone comes in uneven doses and is not intended as a long acting pain med.

Do not fall victim to the junkie thing. He is a chronic pain patient and needs the stuff. There is a difference between drug dependent and drug addicted. Of course he will be dependent on them but not for non-medical reasons. It truly is a double edged sword. There are those that say they can take it and don't need meds. I am of the sort that I will not tolerate pain if there's something out there that can relieve my anguish and to bleep with what other people think.

You need a doc that will be an advocate for you people. He is not getting the rellief he needs with only 30mg of oxycodone a day. 4 times a day that means he is not covered for 8 of those hours because the pain med only last 4hrs if that depending on the pain and how it eats the med meaning sometimes they don't last as long as they should.

Check it out. Oxycontin does not come in a 30mg dose. Find a doc that will work with you and him on pain management.

[mellowgator]

tyvin,

please check this site. 30mg oxycontin does exist.

www.rxlist.com/oxycontin-drug.htm



mellowgator

Edited by mellowgator, 31 August 2010 - 03:44 AM.

[Snakeye]

skip it

Edited by Snakeye, 10 September 2010 - 12:20 AM.

[tyvin]

mellowgator, on 31 August 2010 - 03:26 AM, said:

tyvin,

please check this site. 30mg oxycontin does exist.

www.rxlist.com/oxycontin-drug.htm



mellowgator

Hey mellow thanks a bunch for providing me with this info. Circumstances related to my accident kept me out of the loop for a couple years. Pain management is one of my specialties and I was so shocked to read about how oxy has changed. Well it's for the better as there are more options now with Oxycontin.

Purdue who makes the stuff was involved in many lawsuits one of which they threw a fit when their Oxycontin patent expired and many other pharm companies jumped in and started producing it. Long story short there are generics out there now (though I looked up the pricing and it doesn't seem to be effected as it should) anyway these multiple doses are fairly new as before it was only sold in even doses. I see they brought back the 160mg as well (there was a large fuss on that one and Purdue caved and stopped making it for awhile but it's back).

Thanks for having my back as I venture out and re-discover the world.

[LesleyH-Y]

Hey ya'll- thanks for the replies. Life has been hectic with the wedding, honeymoon and funeral so we have been busy. They finally changed his meds this week and he is now on the patch, something which has brought him tremendous releif in the past.
The Doc wants us to take a look at other options- one being implanting a Spinal Cord Stimulator and the other is possibly replacing the actual hardware in his back with something smaller and sturdier. The first is supposed to be minimally invasive, and the 2nd as kind of a last resort.

Any thoughts?