Shoreline

Hi XL, I imagine part of the problem is that your young and docs don't want to be responsable for making you opiate dependent for the rest of your life or untill they have the technology to deal with failed back surgery, post laminectomy syndrome and failed fusions.

You shouldn't have the leg pain if they decompressed the nerves unless you did major damage to the nerve root prior to surgery.

Are you taking any of the anti seizure meds for nerve pain. They usually work through the diferent meds like Neurontin, Topamax, Dilantin, Lamyctyl etc.Untill they find what works best with the leqast amount of side effects.

The anti seizures are supposed to disrupt the nerve transmision of the pain signal. Anti seizure meds have been used for the last 5-6 years for neuropothy but heir use for nerve pain is still considered off label, meaning using the drug for something it wasn't deigned for.

The med Lamyctyl is also supposed to speed the procces of nerve regeneration. IT's pretty normal to just have one side involved, In fact it confuses docs even more when you have Bilateral neruopothy or radiculopothy. Normally a disc bulge or stenosis or what ever is causing the nerve pain is dominant on one side.

If you can find a "dermatone map", which would be easy on the net you can actually follow the nerve path directly to the problem and figure out what level the pain is coming from.

I was fused from L1-S1 and during the 11 hours on the table nobody considered moving my legs or hips to prevent positioning damage to the nerves from my hips to my knees. It's believed that nerve tissue will regenerate at about 1cm per month. meaning they can masure from the problem area of your spine to the end of the neuropothy and give you an idea of how long it will take to regenerate.However it's been almost 5 years since my last surgery and I'm still as numb as the day I woke from surgery. At least the burning leg pain was relieved with each surgery.

The newest antiseizure med Lamyictyl is believed to have added nerve regeneration properties. Nerve pain is the hardest to treat and opiates alone will rarely relieve the bulk of nerve pain. The antiseizure meds have been a life saver for many and a source of annoying side effects for many others. But with Lamyctil hopoefully this med will speed up the process of nerve regeneration. TAlk to your doc about it.

I would also point out why should the pain of a 25 year old be taken any less serrious as the pain of a 40 year old or a 50 year old. When you point out the obvious discrimination against young people and the lack of effort being made to treat your pain it may snap your doc back into reality.

Learning to talk to your doc in terms he understands is important too. Just teling him your pain is a level 8 or 9 really doesn't give him anything to compare it too. Everyones 8 is different and the use of high numbers doesn't neccesarrily explain what your experiencing. describing what the pain does, how it effects your life, what it prevents you from from doing are all better ways to describe your pain than assigning a simple number to your individual level of pain.

It's not unusual that your fiance doesn't understand what your going through. It's hard to describe pain to someone that hasn't experienced life altering pain.

As far as telling your doc your suicidal without the meds, It really isn't the greatest idea, because in the same breath your asking him to supply potent opiates that you could take you life with. Describing it as suicidal levels of pain that's becoming harder and harder to deal with doesn't exactly suggest you are suicidal but gets the point across.

Comunication is the key to obtaining proper pain relief. Also understanding that you may never be pain free again is something you may have to except. If a PM doc can reduce your level of pain from a suicidal level in the 8-9 range down to bearable in the 5-6 range is the most PM docs usually shoot for.

Having unrealistic expectations of pain relief from medication, like wanting 0 pain just isn't realistic in many cases.

When they do intrathecal morphine pump trials they call a 50% reduction in pain a success and grounds to continue on with the actual implant. Would you be satisfied with a 50% reduction. Being younger makes it harder to except that you can no longer do some of the things you were used to.

It doesn't mean your life is over, just changing into something you hadn't really planned. But then again, who's life really turns out exactly the way they planned. The doc neeeds to know that your expectations are reasonable and your not shooting for 0 pain but trying to function to the best of your ability with the help of modern medicine.

Your own expectations of pain relief have as much to do with obtaining pain relief as the docs attitude about prescribing these meds.

Physical dependnece is inevatable but managable if your expectations are realistic. Expecting to be pain free following invasive back surgery with implanted devices isn't a realistic expectation.The only way to maintain 0 pai is to constantly increase opiates to the point of not being abler to function. When the side effects and nagative aspects of these meds outweigh the benefit, it's very hard to justify continued use of the meds.

When the meds are doing more good than harm then the risks involved are exceptable and hoping for enough pain relief to be able to function and care for yourself is a reasonable expectation. I would be sure both you and your doc are on the same pageas far as what you expect from these meds. Some tolerance is inevatable, But many people also go for years without needing an increase in meds once they reach a level of relief that allows them to continue to work on their recovery and function at exceptable levels.


There are other methods to relieve your pain aside from opiates and being open to trying them has alot to do with whether you will succesfully find something that actually works. Chemical removal of scar tisue like prolo therapy has as many negative downfalls as possible curative properties. How do you get a chemical to only destroy scar tissue and not damage healthy muscle and tendons and tisue you don't want removed by a chemical.

Nerve blocks can be done to relieve the leg pain however nerve blocks only last 6 months. Even if you test well with a trial block you would still be facing a lifetime of continued nerve blocks should things not continue to heal. Opiates are truly the least invasive method to manage pain, Physical dependence doesn't mean addiction.

Addiction is a combination of negative and destructive behavior regardless of the outcome. Doctor shopping that could land you in jail. Use of meds that costs you your job, and relatioships and actually hinder more than help is a sign that your crsoing from dependence into addiction. But statistically, when pain meds are used solely for pain and there is no other emotional reason for the use of these meds, the lielylihood of becoming actually adicted is roughly in the 2-5% range.

Few true pain patients actually become addicted to their meds where the meds are causing more problems then they cure. Realistic expectatin is a big part of succesful management of pain with opiates. There will be people that won't understand your meed for pain meds and honestly the meds you take don't need tobe public knowledge. OxyC has such a high street demand and value telling friends and aqauintances your on it can lead to theft, robbery or worse.

Unfortunately CP truly tests any relationship. If your fiance is already having troubles with excepting that you have limitations and that there will be days that regardless of what you take for pain, traveling or doing things you guys are used to is no longer reasonable. Honestly, better to find that this person isn't a better or poworse kind of person prior to marriage is better than marrrying someone only to be belittled for the meds you take and your inability to function fully they way someone is used to. I'm not saying it's a huge character flaw, being faced with marriage to a disabled person takes a very special and understanding person.

IF you are already getting grief over what you can't do, how will this person react to the days when he truly sees the full extent of what this surgery has done.

Disc replacement is experimental and very few harware devices implanted in the back actually have FDA aproval for use in the spine. Pedicale screwsw are used often but only have aproval for use in the Femur or long bones of the leg. At last the two sets of hardware I have had implanted and then broke were both not approved for use in the back. We get to be the guinea pigs in hopes that some day they will better know how to deal with some of the problems we have.

Welcome to the forum, and remeber there is no such thing as a dumb question. education is your best weapon and tool for finding pain relief. The folks her do experience the kind of pain you do and understand what your going through. Although we all all somewhat internet strangers you won't find a group of people that understand any better than the folks here that are dealing with the same issues. Welcome and take care.
Shore