Lidocaine Infusion via IV over 6 hours - Anyone ever heard of such a thing?
I have RSD in both my right elbow (I had an ulnar nerve transposition that went bad) and occiptal headaches (from hitting my head in July '04). We have tried everything and NOTHING is working.
So, next week we are going to do a lidocaine injection via IV that will take 6 hours to do. Then if that works, every week I would need to come in for a 2 hours appointment for upkeep of the pain management level.
Has anyone ever tried this? I am a little nervous about the whole thing. Does is make basically EVERYTHING numb? Like I could injure another part of my body and never know it?
The final option, which they are trying to convince the hospital, because they have other patients that they would like to use this one, is placing me in a coma for 2 days while they inject a drug along the lines of special K(a drug being used at raves or something). Then they wake you up and the body has then learned to disconnect those pain receptors, stopping the RSD and the pain. Sounds good in practice, but 2 weeks ago I almost died due to too much Ativan (which was a small dose by hospital standards). They actually had a crash team in my room because my respirations were down to 3 per hour. My luck is I would go into the coma and never come out. I couldn't do that to my children.
I was just wondering about the Lidocaine thing...Anyone?
Re: Lidocaine Puch via IV over 6 hours - Anyone ever heard of such a thing?
Hey Lisa, My doc dos lido and robaxin infusions and has succs with some people just as some people get relief from ESI or nerve blocks. Pan mangement isn't limited to what one or two or 10 docs have to offer, I spent 7 years going from PM doc to clinic to doc , non of which used opiates and all of which eventually told me I would simply have to live with it. a dozen docs all wrong because of their misbeliefes regardng opiates.
The bottom line fr me is that addiction is destructiv and physical dependence is just a natural response to using opiates on a regualr basis. I';ve never read of any addict that truly believed his addiction improved the quality of their life, and that's where the difference is. Improved function and improved quality of life directly oposes all notions of addition. Why some docs don't understand is too much to get into, but I have had over a dozen docs in the first 7 years tell me the sam BS. If this doesn't work you simply have to lve with it. That's not true at all. The only limits on your options are your docs mental limits. If your not alergic to opiates and your pain reponds to opiates, It is an option, It may not be with your present group of docs, but the have a belief engraned that your n going to change, so you try what's offered, hope for the best , and realize, no doc has all the answers.
The idea of using ketamine, or special K as it';s nn on the streets in it's cut and corupted versins have given this med a bad name. But it was PCP that ld to the discovery of the NMDA receptor. Have you heard storieds of peole high on PCP taking brutal batings, gun shot wounds and still needing 4 cops to subdue, That's because PCP virtally blocks all NMDA recptors creatng a state of incrediable tolerance to pain. Many other drugs like dextromathorphan, methadone, and nemanda also have this sdame ability. Not nearly as strong as ketamnine but have heard of it's use to break the cycle of severe chronic pain. It's fairly new so there isn't a lot of published data on the long term effects but the benefit of ketamine isn't something docs aren't aware of. any topicals are compounded with ketamine, lidocaine and an anti inflamatory .
As far as lido infusions, No the can't numb you entirely, It would cause collapse of your breathing abilty, But it can give relief to certan types of neruopathic pain and is done in a controlled setting with safe doses. You won't be numb and unable to function. Hopeful you will simply get greater pain relief with this specific modaility. Your not at the end of the line if either of these options don't work. You may be at the end of your docs abilty to hlp, but it doesn't mean thereisn't a doc down the street that understands the benefit of opiates and has some other tricks up his sleeve. You are rgight, you do have children so checking out is not an option, all you can do is continue to search for what works for you. try everything you can, use what works and move on untill you find a level of relief that works for you.
being labaeled an addict or drug seeker was pretty much par for the course for anyone that requested apain meds more than 3 months post op prior tothe whole OxyContin boom and the nw understanding of piates and the difference between addiction and dependnece. I've yet to hear how anynes addiction hs led to increased quality of life and increased function, where you can read about these experiences every day from the patients of docs who do belive in the benefit of using opiates when other methods have been tried and failed. People teling yo opiates are evil and addicting and will be the beginning of the road to ruin are simply misinformed, under educated and may simply be afraid of anyone questioning their prescribing practices. But from what I have read, your hardly at the end of the line. Yes a solid DX would be nice, but it's not mandatory to have a solid DX to treat your pain.
I imagine your back surgeriies will give your doc the diagnosis he needs to treat you without worrying about an investagtaion. Post lamnectomy syndrome, Failed fusion syndrome, spondy, RA and some of your other problems are all real DX's that deserve the same degree of treatment that someone with strep throat deserves.
I saw a dozen different docs, went to 3 different PM linics and tried everything I can imagine before I was refered to a doc that used opiates to treat the owrst cases. I had been bed ridden for 9 months and was a wreck,,but I have cme so far, that checking out would have been very foolish, I also have a doughter I couldn't do that too that gives me strength on bad days and takes away that ption of just giving up. basicaly your doc is wrong to think yu only have 2 options at this point. I hope you haven't bought nto the same rediclous beliefs about opiates as you docs have.
Bottom line is you do have options, you may have used up your present docs bag of tricks but there is another doc out there that carries an entirely different bag.
Re: Lidocaine Puch via IV over 6 hours - Anyone ever heard of such a thing?
I am just sure where to go at this point. My doc at Mayo recommends their pain management clinic - but I have heard nothing but nad things because they put you in a group and assume you all should be treated in the same fashion, which is so wrong.
I am at least seeing a neuro - he was the one who suggested this ketamine/amtyriplyn cream. It is not working for my arm and when used on my head, just makes the headaches worse. It will interesting to talk with them again on Monday. He told me when I was in the hospital 3 weeks ago, that I need to do more streching techniques for my head and take up yoga or something relaxing to try to reduce the pain. Never mind I have been trying stuff like that for 7 months now. They are telling me that part of it is that the muscles in my neck will not relax to allow the pressure against my occiptal nerve to go away and reduce the pain. My internal med doc wants to try Botox injections into my neck/shoulder area, but my insurance refuses to pay for it and it is really expensive, which I can't afford. My doc swears it would work. He is going to try to get some samples to give it ago to make a point to my insurance co. The pain in my head is causing HUGE issues right now. With the POTS that I have, I already have issues with just getting enough blood to my head, then add pain which settles at the base of my head and behind my right eye. I have been so nauseated, to the point it wakes me up at night.
I am currently on Methadone, Lamictal and Bextra to try to reduce the pain and inflammation (I have tried a zillion other drugs too - too many to list here). I am on many other drugs as well, but these are the ones being used for pain management. I am not sure if the prednisone I am on is supposed to help with any of this, but it is helping with the Addison's.
I just have so many health issues at this point, I think that it is hard for any one doc to get a grip over it all. But trying to see indivual docs, who don't talk to each other, other than reading each other's notes, is not working. I wish I could get them all to sit in one room so we could all talk about what is going on and try to find the best treatment, without every doc trying to add additional meds.
At age 31, this is tough - I have too much of my life ahead, but I really can't live like this. My boys and husband are my life. I hate constantly complaining to my husband - I am sure he is tired of hearing it too. I just wish he could live one day in my body to understand what I am dealing with. My oldest son (6) is having major problems with all this right now too. We just received 2 calls from a socoal worker at his school who we are now trying to work with. They are seeing anxiety and the start of a little depression - at 6! Look what I am doing to my children!
I am willing to take any advice as to what to ask about, etc. I feel like I have tried everything, and am lost as to what to do next.
Re: Lidocaine Puch via IV over 6 hours - Anyone ever heard of such a thing?
Hey Lisa, Sorry about typing errors yesterday, I was miserable and trying to get out of the seated position but also wanted to reply. I hope you were able to get what I was trying to say.
Basically, Everything your trying now and want to try in the future is neccesarry to rule out as treatment options. I know being in pain 7 months and trying methods that haven't worked is frustrating, but nothing moves as quickly as we want. I spent 7 years having 3 surgeries and going from Pm doc to pm doc and clinic after clinic and round after round of PT. After the last surgery, I had gone through 3 12 week PT programs, lots of fighting with my insurance before a new PT asked why nobody had ever done any type of scar management.
Because that PT technique hadn't been tried yet, it was aproved and after 10 weeks of myofacial release and scar release techniques, my skin finally came unglued from the fascia. It wasn't an amazing cure all but it did help. I'm not saying the other 3 rounds of PT were useless, but even when it comes to PT, there is more than one technique and method to be tried. Take what has been useful from each experience or each method learned or tried and move on, use what works and forget the rest once you have ruled out a methods innefectiveness.
It's great your NS is aware of Ketamnine and Botox, but he is surgeon, not a PM doc, Surgeons don't usually carry patients for life and manage their pain, even when they implant IT morphine pumps, they still refer you to a PM doc for maintaining the thing.
I've seen everything from cases like mine where people spent years or decades looking for relief, to absurd cases where a surgeon is ready to implant a morphine pump because the patient is complaining of pain 6 months post op. It's a bit extreme to jump from surgery to a morphine pump without trying everything else first but it is profitable to implant pumps and then refer patients off for lifetime management to someone else.
I learned self hypnosis, bio-feedback, guided imagry, yoga, have a TENs unit, tried TINS, chiropractic, acupuncture, nerve blocks, trigger point injections, epidurals, and that's just off the top of my head. After having tried all these things, I eventually was referred to a pm clinic about 45 minutes away, It wasn't in network, I needed special aproval but I eventually got it aproved by being able to say I had already been to the other 3 clinics and 12 docs in this area and they weren't able to help me.
They did use opiates on patients at this last clinic that had tried everything else and were willing to try anything they suggested and I eventually got the hospital bed out of my den.
I would expect to have to go to a pain clinic if your in pain, they do start out treating everyone the same, specially if you haven't tried their techniques yet. Everyone may learn self hypnosis or bio feedback, but that doesn't mean it's not part of the road to finding what actually works. As they rule out one method after another you are getting closer to finding relief. When they find things that do help, your care does become more customized to your stuation and you get treated less and less like everyone else.
A short cut would be nice but if everyone took a short cut, everyone would go straight to opiates because they know they relieve pain. But passing out potent opiates before you try other methods to mange the pain isn't good medicne.
What if botox is the answer and worth fighting for, if you give up on fighting for what you need because you can get by with opiates your the person that's getting short changed, not by being denied opiates, but by being denied the oportunity to manage pain without opiates. There were patients at the last PM clinic that only wanted the meds, wouldn't participate in PT, wouldn't participate in trigger pont injections or the relaxation techniques they tought.
These people just short changed themselves and got nothing out of the program. No techniques to help manage the pain and no meds they wanted. I don't doubt the pain they were in. But someone refusing to try a PM clinic because they don't think it will work, doesn't make them a great candidate for long acting pain meds.
Your doing the right things, document everything you try, who, what, where and when. Even if Mayo's clinic doesn't offer you relief, it doesn't mean another clinic may not have the answer or have the pylosophy that works for you. I have seen phylosophy changes at clinics I have gone to at each change of the new program director. The last one wouldn't prescribe a vicodin to a cancer patient because they thought all pain could be managed with the right relaxation technique and Prozac. Then the next clinic director comes through and thinks the anti siezure meds and trigger point injections are the answer to all pain, when that guy laves a new doc comes in and takes his turn at the wheel and uses his phylosophy.
Mayo isn't the answer for everyone, They don't have a higher success rate than everyone else, but the name carrries some weight with some docs, Other docs don't give a hoot if you went to mayo or a sweat lodge in montana, they know everyone responds to different methods, but you have to keep tryng methods untill you find what works for you. Or basically run out of methods to try before someone declares your pain is intractable, won't respond to other modalities and X,Y and Z are your only options.But jumping throug the hoops and trying A-W may be necessarry to get to X Y or Z.
If you had been injured 15 years ago, Before the invention of OxyContin, Kadian, Avinza, before Duaragesic was aproved for non cancer pain. Opiates wouldn't even be an option, the strongest med available to you would have been 5mg percocet, and people aren't hurting anymore now than they were 15 years ago, the only ting that has changed is there are new options and new phylosophies. Hang in there and don't give up, The answer may not be at mayo, but you may have to jump through mayo's hoops to find what does work. I bet Mayo knows every condition that insurance companies will authorize Botox for where a surgeon isn't used to having to fight for the ability to operate. PM docs and clinics should be very aware of what insurance companies want as far as diagnostic codes to aprove specifc treatment options.
Now we have much stronger meds, an entirely different phylospohy about opiates and docs willng to treat patients with these meds when other methods have failed, but that's the catch, when other methods have failed. Why use morphine if Ultram and Neurontin work? That's what your doing now, trying every other method before a doc can justify prescribing something more agressive like opiates or justifying to your insurance that you need Botox.
I'm not suggesting everyone should be forced to learn 4 different relaxation techniques or have a dozen nerve blocks before being offered real pain relelief, but 7 months isn't a long time in the grand scheme of things. It's tough to get a needed surgery done in 7 months, why cut if some other method would work or a patient may mprove with time. The same goes for the use of opiates that will cause physical dependnece and that's a heck of a price if something with a lower price to pay could have worked.
Few people go right from a failed surgery to Long acting opiates because their are so many options to try. Botox works very well for some people. My wife Has several degenerative conditions and was in a car accident about 6 months ago, They had always been treatng her for neck and shoulder pain, Her shoulder muscles were in such a constant state of rigor she looked like the incrediable hulk flexing. Botox worked very well for the headaches caused by the neck and shoulder muscle spacticity and resulting facial numbness and other problems she was having.
She had done round after round of trigger point and Ocipital blcks when the doc suggested botox. The insurance denied it at first but with the right diagnostic codes it can be covered. The doc and his office stafff need to know the diagnostic codes needed to get the botox aporoved. It took 3 months just to get it aproval but they did, so they did 2 rounds of Botox, trigger point injections and OC blocks over 6 weeks and she's doing much better. The botox can be extremely effective on spastic muscles.
The difference in getting it aprovd may be something as simple as the difference between calling your muscle problem in your neck spacticity Vs spasm. They may cover Botox for one and not the other. This is where a PM doc and group need to know their procedure codes for PM and know what has to be said and diagnosed to get you the treatment you need.
You can help your next doc or clinic by putting together a concise list of what you have had surgery wise, where who and when, what you have tried PM wise, where when , who and the the results. Thsis can help prevent having to learn a useless tchnique or try a useless technique 3 times before someone realizes that hypnosis or trigger point injections don't work for you. I made a list of everything I have had done and tried and the info to verify it it on 2 pages the clinic could insert right into my perment record, It sows the docs what you have tried, your willingness to try anything and allows docs to justify their treatment and allows docs to get procedures aproved like Botox by havng all that info right in the front of your chart.
If you don't like what you have heard about mayo, find another PM clinic or doc, Have your surgeon keep fighting for botox aproval or have the new doc fight for it. But when you haven't tried many of the more conventional methods tought at PM clinics or by PM docs it will be hard to find a doc or get your insurance to to cover some of the less conventional options.