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  • Shoreline I need some advice

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    Old 10-07-2004, 12:13 PM   #16
    Snails
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    Re: Shoreline I need some advice

    Wow, Amy, I did not realize your pain resulted from getting your wisdom teeth removed. That is exactly what happened to me, and I can completely understand your feelings of being too young to spend your life on opiates (that seems to be my future, and I'm 22 ). From what you said, you obviously have TMJ problems but there also seems to be some nerve damage causing numbness. With these kind of post-surgical facial pain cases, the usual treatments for classical trigeminal neuralgia (anti-convulsants, tricyclic antidepressants, gamma knife, MVD surgery, glycerol/alcohol injections, etc.) are usually ineffective. I also tried just about everything before receiving opiates from my facial pain doc who specializes in TMJ. He referred me on to another facial pain specialist with more experience in nerve damage, who has a lot more experience with opiates and understands the importance of long-acting meds. My TMJ doc (I don't have any TMJ problems, but he's a wonderful doctor and the only one around who specializes in facial pain) was very well-meaning and wanted to keep me comfortable, but saw nothing wrong with long-term Percocet use. Like you, I had stomach upset and concerns about organ damage from all the Tylenol, and my new doc now gives me Oxycontin and Oxy IR (Percocet without Tylenol) which have none of the bad GI side effects. If you are going to need long-term opiate treatment, it's stupid and dangerous for you to take any meds with APAP or any short acting meds in general. You will get much better coverage from a long acting med with some short acting BT meds if needed, but most OS's don't know enough about long-term opiate treatment to realize this.

    Anyway, my point here, besides being surprised and sad to see another person suffering permanent pain at the hands of a butcher OS, who lies and tells everyone that comes in that they need their wisdom teeth out just to make money, is that if you're getting turned down for PM because your pain is from TMJ, you should consider taking Shoreline's advice and billing your pain as post-surgical facial nerve damage. This is what my pain is classified as, and I've had no trouble finding facial pain specialists to take my case seriously and do whatever they can to keep me comfortable. It does sound like Virginia has a particularly hardline attitude against opiates (maybe it's a Southern thing, with all the headlines about Oxy in Kentucky), but if you're not getting help because you have TMJ, it sounds like it's time to start focusing on the nerve damage aspect of your pain. It's worth a shot--I agree that facial pain in general is very poorly understood, but maybe your neuropathic pain will be taken more seriously than your TMJ pain. Good luck!

     
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    Old 10-07-2004, 12:27 PM   #17
    atibbert
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    Re: Shoreline I need some advice

    I forgot to mention before, I have gone the nuerontin route already. It did nothing for the pain and I blew up like a blow fish. They had me up to 300 3 times a day before I gave up on it because of the extreme weight gain. Its not that I am all that vain, but it was water retention (I was told) and it was all in my stomach and chest area. I was told this is unhealthy and can lead to heart problems. (Don't know if this is true or not). Anyways, it did not help my pain nor did it make me tired. Unfortunately, as a recovering junkie, my tolerance for pain meds goes up rather quickly. Being a junkie changes your body chemistry forever. I am afraid this will work against me too with any pain docs. I have been clean and sober 15 plus years without any relapses and my husband has been clean 21 years. We both take our sobriety very seriously. But I know this has affected my relationship with my GP doc who treats me like a drug seeking junkie. He absolutely refuses to give me any medication, except an antidepressant (which by the way can cause bruxism, which adds to my condition). He has made several comments about my parenting too. I have 3 happy healthy little boys who could not be more well adjusted and normal. Because I do not agree with all his suggestions about parenting, he thinks I am a bad mother. Just like not every med works for every patient, not every parenting style works for every kid. But some docs think, once a junkie, always a junkie (which is true, but clean junkies change their behaviors). He treats me like scum. We are like normal people, live in a nice house, have nice kids, have normal jobs, have normal friends. Thanks for all the time and info.
    Amy

     
    Old 10-07-2004, 01:53 PM   #18
    howard a
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    Re: Shoreline I need some advice

    Quote:
    Originally Posted by Shoreline
    The way pain management was presented to me and the use of opiates combined with other modalities is that it's the end of the line for now. There isn't another surgery to roll the dice on, you haven't responded to splints, mouth guards, PT , the basic nerve pain meds that "tooth docs" docs have learned to use from PM docs.

    Excepting there isn't a present solution doesn't mean you have to except this is it for the rest of your life. Pain management 10 years ago was what I called Voodoo medicine. My first PM doc believed that evany pain could be managed by the right antidepressant "prozac was her favorite, the right relaxation technique like self hypnosis or guided imagery and she also believed in acupressure and would have you lie on a table and drive her elbow into the most painful spasm you had to push the blood out of the contracted muscle. This may work for some people, but that won't fly on a cancer ward or on every non cancer pain you can name. But that's what was offered 10 years ago and that was the standard of care.

    Obviously things have changed. Even with my back, In 99 when that fusion failed, I saw 3 docs that all said 3 surgeries have failed why would you think a 4th would work. So I accepted for the time being there wasn't a surgical solution, continued to work with various M docs until I found what worked for me. More than a dozen PM docs in all over 11 years.

    I happened to be reading at a ste specific for spines and noticed an article on long fusions. It's incredibly radical and would take more than 10k character to describe but the next day when I saw the doc that was to implant my intrathecal pump, he actually suggested trying that surgery I had read about. This doc had great credentials, Me school at Duke, Internship at Beth Isreal and the hospital for special surgeries and a fellowship at the Einstein Institute.

    What was not available or hadn't even been thought of in 99 is now an option. Mechanically it makes sense, But I have to be ready for another 12 hour surgery and a very long recovery which emotionally I'm just not ready to roll the dice again. If this method becomes the standard to repair long fusion's maybe someday. The same goes for you or any condition, maybe one day there will be a minimally invasive way to correct your problem. But until then you can't just curl up and spend years in bed. Aside from the psyche damage that would do, the physical atrophy and ability to recover would b lost. So for now we manage the pain, with the goal to achieve the most function possible and not obe overmedicated. Once the meds turn you into a zombie on the couch and you have no desire to get up, although that may manage your pain, it's not functioning.

    You have kids that need you and with the right PM you could do most of the things you want. There will be some things that you can't or may hurt but ou don't have to be a zombie to be getting pain relief. Nobody I meet could ever tell I have a continuos flow of morphine into my spine? PM is more about function than relieving all pain. Even the goal they shoot for with the pump isn't only 50% reduction in pain. But But a 50% reduction can mean the difference between bed ridden and able to cook, clean, shop and take care of your kids.

    So open the field of search, realize treating facial pain is no different than other pain and the tooth docs aren't capable or aware of all the modalities to manage your pain.
    yes nerve pain is harder to treat. Pain that has a mechanical dysfunction component is harder to treat, But not impossible.

    I have a tremendous amount of mechanical problems with my back, failed bone growth, broken hardware, toggling screws, nerve damage and few other treats that go along with all chronic pain. But your case isn't so unique only a tooth PM doc can manage your pain. If you can even find such a tooth doc.
    Good luck, Dave

    PS, I hope you were able to get the info on the CPM in portsmouth. They will treat you and keep working until they find what works. I have no doubt.

     
    Old 10-10-2004, 08:51 PM   #19
    Snails
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    Re: Shoreline I need some advice

    Wow, Amy, I can't believe your GP thinks he has the right to judge you! If anything he should respect the way you've turned your life around and devoted yourself to being a great mother and wife. I can't stand people who refuse to accept that people can change and forever look down on anyone who ever made any mistakes...and which of us hasn't made mistakes, especially in our younger days?? I guess this is just yet another reason to find a doc who will appreciate the severity of your situation. GPs probably can't comprehend how complicated and excrutiating facial pain can be, and neurologists just want to throw Neurontin at you, or if that has horrible side effects, one other anti-convulsant after another. My facial pain doc finally put a stop to that, flat out telling neurologists I consulted with that three different anti-convulsants ALL had terrible side effects and didn't relieve my pain so PLEASE don't try to prescribe any more!! Anyway, it sounds to me like you might want to find a more compassionate, less judgmental and reactionary GP along with a caring facial pain specialist. I know that's easier said than done in your neck of the woods, but good luck !

     
    Old 10-11-2004, 03:58 AM   #20
    atibbert
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    Re: Shoreline I need some advice

    Thanks Snails

    You know there are always gonna people who judge you. It is usually something in their background that makes them do this. I know he thinks he is doing me a favor by not re-addicting me. There is a fine line between addiction and dependency and I am well aware of it believe me. My GP is a nice guy with my kids but I was a bit upset with him when I took my 3 year old to him twice for bad bloody noses and he did nothing. Finally I took him to an ENT (thank god I don't need referrals from this guy to see specialists) They ended up cauterizing my son's nose because his blood vessels were very close to the surface and everytime he got bumped it would bleed. I know I need to find a new one, I am just sick of the doc shopping. I have been trying to get into see a pain doc without luck so far. I am seeing a new oral surgeon this Thursday, one who specializes in TMJ. My hope is that he will be able to help me and won't continually undertreat my pain. If it was these docs in daily pain, they would want to be treated too! I really think they do not understand what it is like to walk a mile in our shoes. This past weekend was the 1 year anniversary of my wisdom tooth removal and the start of my TMJ, so it has been one year of continual pain. I think in that one year I have had maybe a dozen days, if that, where I have felt reasonably good. I have to call my current OS today for one more refill and I know he not going to be happy. I took an extra half a pill because I had alot of pain this weekend due to the incredible stress I have been under. My grandfather is dying and I am just waiting to get the "call", my father has cancer and underwent a level 3 neck dissection surgery last week and we are waiting for the pathology reports on that. I live 600 miles away from them. He finally did up my medication to norco 10/325. I was taking vicodin 7.5/750 and was concerned about the tylenol amount I was taking. But even the Norco is really not knocking out the pain and I am still spending alot of time on the heating pad.
    Anyways now I am rambling.
    Amy

     
    Old 10-11-2004, 04:42 PM   #21
    Snails
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    Re: Shoreline I need some advice

    Hi Amy,

    I'm really sorry that you're going through so much right now--I can only hope things improve at least somewhat before long. It's been a little over a year since my wisdom teeth were removed, and now every day when I wake up I get electrocuted along my face to remind me what a bad decision it was to have that unnecessary surgery. They made it out to seem so benign--if I had known there was even a possibility I'd still (probably forever) be suffering with constant horrible pain, I would never have agreed to the extraction. And obviously I'm not the only one who would reconsider having the surgery; I'm really sorry the same thing has happened to you and especially sorry that you haven't found a compassionate, caring doctor.

    I don't know how I could survive if I had to fight just to get a script for Vicodin every month! Even the Norco is dangerous in terms of Tylenol, and even the stupidest doctor should know that those are short-acting meds not suitable for use with chronic pain patients, who require a long-acting opiate to get smooth coverage. I really wish you could find a facial pain doc close to your home--I wouldn't make it without my two FP specialists, but it sounds like Virginia has an unusually stingy attitude toward opiates. But like Shoreline said, pain management is meant for people like you--I don't know how any doctor can not see how severe and excrutiating your situation is. I actually met another woman with terrible TMJ pain from Virginia on a facial pain board, who couldn't find good treatment locally and is now flying out to MN to see my two docs. I'm crossing my fingers that they can help--it seems like even travelling across the country is preferable to continuing on with uncaring doctors who don't take you seriously. I wish I could find a way to help, but maybe it helps a little to know that someone else is suffering the same way from such a "routine" operation (it does help me a bit to know that you're in the same boat, though of course I'd love to see your pain disappear or at least be properly treated.)

    Take care,
    Stacy

     
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