I, like the rest of you, have gone thru hell the last few years. Sorry, but this is going to be long. Please bear with me. I think the history here is important. What appeared to be a simple neck and shoulder injury from a car accident, has turned into a nightmare with several misdiagnosed conditions. In order to alleviate acute pain in my upper back that radiates out into my shoulder blade and down my ribs along my side and also up into my neck, I have gone thru the following.
*8 weeks of PT with minimal pain management (Ibu, Celebrex, Soma)
*ACDF surgery at c4-c6 with a pretty titanium plate and mild PM care (norco)
This unsuccessfull surgery and comments from my surgeon that my pain was a function of my addiction to narcotics (1-2 Norco qh6) led me to seek my own PM doc who put me on 10mg Oxycontin BID, 10mg Norco every 6 hours for BT, Soma.
*PM doc sent me to shoulder specialist who suspected rotator cuff injury (upper back pain??? OK) and he went in and scoped it, looked perfect, but did Acromioplasty because of bone spurs. Surgery was useless.
*8 More weeks of PT, no help, strenthening activities actually made it worse. Awesome Physical Therapist hooked me up with great GP and sent very detailed notes and called this GP with thoughts on my injury.
So, 2 months ago I switched GP's and he upped my meds to 20mg Oxycontin TID, 1-2 10 mg Norco every 6hrs, Soma, Cymbalta.
He then sent me to a "specialist" who specializes in cases like this. This new "specialist" is a PM doc but is very well versed in Nuerology and Orthopedics. Well beyond any other docs I had seen before.
This specialist took a novel and thought provoking approach. Instead of looking everywhere on my body that doesnt hurt for a problem that could be refering pain to where I hurt, he said, "lets look at where it hurts" Wow!!
So, another round of MRI's and Nerve Conduction studies show that I have 2 moderately buldging disks at t6-t8 and a poor conducting Serratus Nerve and Long Thorasic Never. He also noticed that my right shoulder blade is "winging" and doesnt glide on on my rib cage when I move my arm. It kinda skips. Keep in mind that I can feel this happening when I move my arm and ALL previous docs denied it was happening. So he sent me off to a facility that does Epidural Steroid Injection, Facet joint blocks and is even starting to use Botox in muscles that are causing problems. I am awaiting to hear from them for an appointment. I did have a consult with them last week and they concured with my "specialists" diagnosis. So that is great news, right?
Well, one would think so. With all this in mind, everyday is a major challenge for me. By the time I get up and take a shower and get dressed I am done for the day. I have to go lay down for 2 hours to take a load off my neck and back because I am in so much pain. After that, I cant get up and move around for an hour and then its back to bed. So, basically, for the last year (the pain has steadily gotten worse) I am living a very limited life. All my hobbies are gone. I can go out to visit friends. I cant have them over for more that a few hours. I cant drive more than a mile or so as steering and shifting kills me. It really really sucks. I used to be VERY active. Played golf 3-4 times a week. Went hiking often. Waterskiing...you get the picture. I tried to pick up on an old interest of mine, Photography, and I cant even carry around a 1.5lb camera in my own back yard for more than 15 minutes. After I set up my ****** and camera and get my gear out, before I have taken one shot, I am in so much pain that I cant enjoy it and have to head to bed and pray my med time is coming soon. Pathetic and really really sad. I am sooo depressed and bored at this point.
So, this bried (lol) history leads me to my questions. Sorry it so long despite my attempts to make it short. I see my GP on Thursday and will be discussing all the recent findings and plan of attack (injections). I really like to verbally all be on the same page. At this time I am planning to really lay it on the line about my pain meds. I believe that I am severly undermedicated. I suffer after doing the most basic things (showering) and this just doesnt seem right. I have never abused what meds I have been prescribed. I never took more than was alloted and I never needed a early refill. Trust me, there are many many times where I wanted to take more, but I didnt. I know where that would lead. I do not suffer from any strange side effects from what I am taking now. I had blood work done and my liver and kidney functions are fine. I dont get high or goofy from them much. They do take some of the pain away but not nearly enough. Now, I know that they cant take it all away but 20mg of Oxy is a LOW dosage so I know I have room to grow here.
So, based on my current meds, 20mg Oxycontin TID, 1-2 Norco q6h, Soma, Cybalta and the fact that I really only get a 10-20% reduction of pain at times (often less), what should we be looking at dosage wise.
Side note: The specialist that discovered my buldging disks is a PM doc but my appt with him was only a consultation and he wasnt asked to pick up prescibing my meds. He did make some comments on them. He likes a 80% LA to 20% BT med ratio. Im am way off that ratio. He also doesnt like Norco used as a breakthru med with Oxycontin. He says that they sould be from the same derivative and I should be taking Oxycodone with Oxycontin. Make sense? He also doesnt like Soma in use with narcotics.
So, when I see my GP and tell him flat out that I cant go on like this and explain what my life is like, what kind of dosing step up makes sense? I know they do not make a 30mg Oxycontin and I am not sure an extra 10mg TID is going to be all that effective. Im thinking more like 40mg. How would the 80mg of Norco I take a day convert into Oxycontin? The Norco is for BT but since the breakthru is all the time I take the up to the limit of the script. With that conversion what would be a logical step up to give me some relief. Also, the worst pain and discomfort I have is at night. I cannot sleep and often only sleep 3-4 hours in weired, spread out blocks. I feel I need a bump up for nightime. Is 60mg too much going from 20mg? Or should we be looking at just 40mg TID and an appropriate BT med for nite and maybe a sleep aid. Would 40mg TID be right considering the Norco conversion? Should it be more? For sleep, in the past I have used ambien but everyone freaks out over long term use. I guess its really a short term med designed to reset your sleep cycle. In addition, my insurance company is not fond of it because of the cost.
I hope all this makes sense. I dont want you to think that I am going to go in and ream my GP. We have a great rapport and I can be frank with him. Please help me sort this out.
Re: Really need help, long post but urgent, need info
I’m sure someone will come in to help you with the conversion info. I just wanted to say that when I increased my doses of Oxycontin I never skipped a step. It was 20 then 40 then 80. It may be different with the Narco . . .not sure. (I have never been on it) I just know that is how I was stepped up and moved over.
I’m glad you got to the root of your problem. You should be able to have some of your life restored. I can’t do a lot of things I used to but with the pain relief it doesn’t feel so limited. I wish you the best of luck.
Re: Really need help, long post but urgent, need info
Hey Bilbo, PM is truly trial and error, A doc can't look at an MRI and say you neeed 60 mgsTID or 20 mgs tid. We can't guess what it takes either other than your BT med apears way out of proportion to your base med, but he may have his own theory about that.
You do need to try the ESI's and nerves blocks in order for the doc to justify and diagnose that your pain is intractable, meaning all other methods have been tried and failed and your only option is pain control with opiates. But pain control may mean many different things aside or in conjunction with opiates.
You doc that's prescribing the large amount of BT and low LA med may believe these modalities "blocks,ESI's and botox" will relieve some if not all of your pain. It would be easier to get an idea of how much pain you have reduced by looking at the reduction in BT meds. If you only had 2 doses of BT meds a day and the low dose of LA med, which dose would you give up first if you found a modality that relieved a significant portion of your pain, the LA or the SA. More likely the SA because removing a dose of Oxy is going to cause some problems with abstinence syndrome. Using other modalities to reduce you BT use may be a good test of how effective each method was. If these methds are effective, which you don't know yet, it doesn't make sense to jack your dose up prior to trying them.
Yes there is room if these modalities don't help or improve your condition, But Increasing the base dose and limiting the BT meds wouldn't give you much room to see what you can reduce without spiking your pain by sending you int withdrawal from a rapid decrease in LA meds. Make sense?
I posted a definition of intractable pain which a doc needs to justify simply using opiates, basically all other methods must be tried and fail before he can prescribe withut fear of investigation. It does take time get through all the hoops and all the trial and error of other modalities. From what you posted, aside from surgery, the only PM you have recieved is PT. As great as your PT was, there is more than one method of PT, Did they do myofacial release, have they done scar management? Strength and range of motion is basic stuff stuff that any PT can do, but some have continued their educatin so they can do chiro type manipulations, specialize in techniques, so one or two rounds of Pt doesn't really cover every available form of PT.
My wfe has gotten relief from nerve blocks and from botox and from Robaxin infusions. She has been able to reduce her opiate intake by 1/3 and discontinued several other meds by using alternative methods to treat her pain.Trigger point injections, Ocipital blocks and several other methods have made this easier and their ar even more out tere if those fail. So there is alot to try before a doc deems that opiates are the only way to relieve you pain. HE rally can't say that at this moment. It's what would work today, but offers no more relief today than it will tomorrow, where some of the interventional procdures can permananetly reduce your pain or reduce it untill the specific modality wears off and needs to be repeated.
Persoanlly I don't agree that you have to stick to the same opiate for BT as your base, Different opiates from different classes bind to different opiate receptors and sub types of receptors. So using more than one opiate covers a broader range of opiate receptors and will likely offer more relief than a single opiate. Also usng the same BT med simply increase your tolerance to your base med to the point that you only get relief when you have the max amount of that specific med in your system all the time. Obviously there are diffeent phylosophies regarding the use of opiates and BT meds and dosages and when opiates should be used.
They are working with you and making the right sugestions, It would be nice if you could get through all the hoops in a matter of a few months but it just doesn't work that way. I do understand your frustration, but you have to understand the position your doc is in when other methods haven't been exhausted. Get them scheduled, give them a try and hopefully you will see the results by a decrease in your need for meds.
If you had a doc that only used LA meds as many do, seeing that decrease may be difficult if your only option to reduce your pain meds was to remove one of 3 40 mg doses. So there is some logic to what your prescribing doc is doing. It's not the standard idea of use of opiates but they haven't ruled out other ptions, sent you to a PM clinics or tried many of the available non opiate modalities.
To answer your question, if they combined all your meds into la meds your hydro would convert to 60 mgs of oxy, plus the present 60 your take which would total 40mgs TID, But that's not cutting it anyway, so your talking about an even larger dose when you haven't tried other methods to manage your pain. You just don't see many high dose patienmts that haven't tried everything else first. I certainly wouldn't let one or two docs condemn you to a life of pain that you have to learn to live with, when there are so many different methods to try to relieve or reduce you pain.
That's just my perspective,
Good luck and hang in there, any of the methods he has mentioned may prove much more effective and longer lasting than opiates without the heavy price of physical dependence. Some docs may be unwillng to even try other methos untill they detox you so they can properly gage the result of the modality thaey try. If they see you as unwilling to try anything but opiates some docs will jump to conclusions simply by readng your med and procedure history. Obviously your not unwilling if these options are just now being offered. So get some alternative history in there to show folks your willing to try anything and everything and your not simply looking for a higher dose of meds.
Take care, Dave
Re: Really need help, long post but urgent, need info
Thanks Shore, as always you make awesome points and help put things into perspective. I want to clarify that I am excited about the recent discoveries about what is going on with me and that I am very looking forward to the injections. If I could have them start today, heck last week when I found out about the plan, I would have jumped on the table and said lets go.
With that being in mind, it appears that the whole process is slow. I was supposed to recieve a call Monday for scheduling my 1st injection. Didnt happen and I understand, these things happen. It took me 3 weeks to get an appt with the guy so I have a feeling that the 1st injection may be a while off. I am not sure tho.
I do know that its time to refill my Oxy and since my GP likes to see me every other tine he refills it we are due to see him this time. I at least want to switch to the 80/20 conversion and pleade for a bump in dosage to offset the recent higher pain level. I guees I was a little tempered and shy about insisting on more pain relief prior to getting the results of my tests. Now that I have known conditions (bad disks and injured nerves) I feel a little validated and feel the bump in meds in warranted. I was starting to worry a bit that I was looking like a schmuck because of the failed previous surgeries. I hope that makes sense.
I know that they will not radically bump my pain management up in one step and that is ok and makes sense, so what ever they do offer me for more pain relief may e just enough to help me deal with the increased acute pain but not enough to mask or for better words, not let me tell what is actually relieving the pain, the meds or the injections.
Your comments have at least tempered what my stance will be with my GP. I am going to just tell him where I am at and putt all my cards on the table and let him make the call. I have bought into the injections 100% because like I said in my 1st post, this is the 1st time they have actually examined the area that hurts and low and behold. My pain complaints were ignored so many times in the past by docs that wanted to look at peripheral issues that could be refering pain. I understand this as the #1 cause for this type of pain is a cervical injury. That being said, to ignore my subsequent complaints after the cervical issues were addressed and failed is madening. Especially a Nuerosurgeon that does one surgery and the turns all my subsequent pain complaints into a cry for narcotics. God forbid he be wrong in his diagnoses and that what he did was the end all be all in what could be done.
Thanks for your help and conversions. Im going to talk with my GP about cutting back the BT meds and converting them to LA meds along with something that I can use long term for sleep. We shall see how that goes.
If it requires me to lay around and do nothing for another month while I await my 1st injection, so be it. I have waited this long. I can wait some more.
I just got so frustrated that I really tried to enhance my life to renewing a pretty sedentary hobbie such as Digital Photography and I couldnt even enjoy it because of the pain levels.
Once again, thanks for your help. Drewtn, thanks for your kind words too. You both helped me in this. I guess maybe I just needed to vent a bit too.
Re: Really need help, long post but urgent, need info
Chronic pain is one of the most frustrating things I have faced in my life. Venting is good. It is so hard to see through the constant and debilitating pain.
Instead of Soma I have tried Zanaflex and Baclofen. Those might be an option. The Zanaflex at night would probably really help you sleep. It sure made me tired!
Re: Really need help, long post but urgent, need info
Quote:
Originally Posted by Drewtn
Chronic pain is one of the most frustrating things I have faced in my life. Venting is good. It is so hard to see through the constant and debilitating pain.
Instead of Soma I have tried Zanaflex and Baclofen. Those might be an option. The Zanaflex at night would probably really help you sleep. It sure made me tired!
Again good luck and keep us updated!
Thanks Drew.
I have tried every muscle relaxer made and the only one that works that I can tolerate is Soma. Zanaflex did absolutely nothing for me. Flexiril gave me horrible nightmares on a consistant basis and made me sleep for hours and hours just from one dose. I couldnt imagine what would have happened if I took them as prescribed. I dont remeber the name baclofen. Is there another name for it? Maybe I will bring that up with my Dr.
I do have an oitment topical rub that has lidocane and baclofen in it. The Dr. that is doing the injections just gave it to me. I didnt see any relief from it because my issues are so deep in my back/spine that, because its topical, didnt get down into me far enough.
Re: Really need help, long post but urgent, need info
Bilbo I'm glad to see that they are finally zeroing on what is wrong with you. I sure hope you can get your meds to a level that helps you better. Being on the sidelines of life and not being able to participate much really sucks. Good luck and do let us know how you make out.
Marcy
Re: Really need help, long post but urgent, need info
Thanks Twisten,
As always, kind and thoughtfull words. I wish I had the gumption some of you folks have to hang out here and continuously help people work thru their issues and most of all, just listen. You Twisten, Shore and everyone else here who is helping people are a godsend.
I try to answer a question or two here and there and I try to give words of encouragement here and there but I get so depressed seeing so many people in situations like myself, many of them MUCH MUCH WORSE. Pain sucks, doesnt it?
Shore, I wanted to add a bit to my reply from earlier. I was half asleep when I responded. I have a much deeper history than I presented but cut 70% of it to save youre guy's eyes. It would have been 5 pages long. I am a windbag so I have to fight that off. I play on many forums on the net and people make fun of me for writting books.
Anyway, anytime I get the slightest glint that a Dr. thinks that I am in it just for the meds, I pull out my little "History" book that shows a dozen accupuncture appts, double that in message therapy appts, several Rolfing tries, an expensive gym membership just for hot tub use, and hundreds of dollars in devices, supports, braces to aid me in healing and recovery......all out of my own pocket. I then show them the last 2 W2's I got and then the Long Term Disability amount I now get. I loose a lot of money every month I am not working. I work in the Mortgage industry and lets just say that I was on a 5 year run of great success when this happened. Now dont get me wrong. I know this could or may sound snooty. My only point is that I have nothing to gain by being at home, curled up in a ball on my bed with a body pillow. Trust me, that got old after day 4.
The good news is that my ESI is set for the 20th of this month with a 2nd one 2 weeks later!! They wanted to do it on the 15th but that day is special. Its tax day and my birthday so I wear all black and mourn as I mail my taxes and a fat check to the IRS and State on my Bday. Doesnt seem right. I thought you are supposed to recieve gifts on your bday, not send them.
Anyway, what would be the conversion to make what I am currently taking into an 80/20 ratio? Im thinking 40/20/40 and then 1 10mg hydrocodone every 6 hours?? That would work best for me since I hurt most at night and the 2nd worst is the morning. I can manage during the day with message, heat, ice and my TENS unit. Would 40/20/40 and 40 (4x10 hydro) work? Im not sure how to convert hydrocodone into Oxy. Is it a straight conversion? I am just taking a stab at it. Im getting to the point that I hate taking so many pills.
Thanks, and guys, I was super extremely serious, you folks are amazing.
Re: Really need help, long post but urgent, need info
I guess the brand name for Baclofen is Lioresal.
I found the Zanaflex made me much more tired than the baclofen. The first time I tried it the dose was too low. Then they changed it to 4mg 3x’s a day. (I'm sure that is low compared to your dose.) Do you remember what dose you were on?? They are both pretty mild I think. I have taken Flexeril also and can only take it at night. I don’t remember nightmares on it though.
Have you had any type of psychological therapy?? I was amazed at what I learned about myself. It reduced my stress and depression just talking to someone who understood and could shed some light on my feelings.
Re: Really need help, long post but urgent, need info
Just got back from my GP. He changed my meds to 40mg Oxy TID and 1-2 5mg hydrocodone q6h. Sounds good to me. Seems to be a good conversion and an safe and adequate bump. He also changed me from Soma to baclofen. Never tried it so I am hoping that its better than Soma.
I have my 1st injection on the 20th. Yeah! Well, maybe not Yeah! because they are not fun but at least I am on the right road.
Re: Really need help, long post but urgent, need info
Quote:
Originally Posted by trowftd3
Just wanted to chime in with a good luck and continued success in figuring out what's going on and maintaining a quality of life. ~Mush
Thank you so much. It looks like after two years of many Doctors "practicing" medicine on me, I finally found one that has a clue and can look at the whole perspective and not just get locked into their overly defined discipline.
I appreciate your kind words. I will let you all know how my 1st injection goes next week.
Re: Really need help, long post but urgent, need info
Hey Bilbo, I'm just as guilty aabout lenghty replies, I can't even count how many times I have exceeded 10,000 characters on this forum, that's the max if you never reached it in a psost.
Knowing the right conversion for a dose that's not presently working will only help so much. A conversion table that errors way on the safe side is what docs usually use and why it's hard to simply hop from one med to the other without a few adjustments. Hydro is about the same strenght as morphine and oxy is about 50% stronger than morphine is what I use.
But a conversion chart should never replace patient reporting, if they did, most of us would never each 50% relief. You can safely double your dose of oxy but trippling it would be to big of a step t do overnight. But there is no reasn a a new doc can't see you weekly untill you pain is managed and under control to their best ability.
I may have nailed it when I thought your doc considered the BT meds as the easiest to discontinue rathaer than cutting you LA med back before knowing how much relief you may or may not get from a procedure or modality. You also have to consider that your doc being a GP he's not well versed in PM he may simply not be informed about standards of prescribing to CP paitients, we are a unique breed that the usual doses are no longer effective on.
It's great for your own peace of mind that have tried many other methods to relieve you pain, at least you know you didn't skip something that may have worked. But when you hook up with a true PM doc he is ging to want to try the more conventional methods, like ESI regardlss of what the reported succes rate is from these injections. The Burton report slammed the usefullness of ESI's but the doc that wrote the report said in spite of iffy conclusions he would still recomaned patients try them as the possible benefit outwiehghs the actual risks.
The 80/20 split the consult suggested is more in line with what most PM docs use, but every person and condition is unique. I certainly unerstand needing more at night, My pump is set to dleliver 20% more than it does during the day and I still use BT meds in the evening when needed.
The next logical step would be to use OC 40mg, from their it's still just trial and error and I would still expect adjustement. There is nothing wrong with 40-40- 60 or 60-40 -80, Most manufactures do mention rescue meds and suggest if you neeed BT meds more than twice a day than your base med is too low. Obvously that's the case but when there are still hoops to jump through, it is tough for a doc to say that opiates are the only thing that will work and prescribe without fear when he doesn't have some of the standard methods like ESI's, nerve blocks and some of the relaxation techniques documented that are normally tought at PM clinics, which is usually a much cheaper way to learn them .
A PM clinic would be covered as a medical benefit with lower copays where most coverage on psych benefits really do stink and range around 50% copays. It would bascally be much more expensive to have private pain psychologist teach you bio feedback or self hypnsosis than it would be to learn them at a clinic. 5 days , 8 hours a day isn't an impossible program and if that 's what it takes to get you pain manged properly, than certainly condonsider participating if it's offered.
Some of the methods do work well for BT pain if you able to get away and find a quiet place, the only negative thing I could say about most of the relaxation technique is that you can't live in that zone of self hypnosis or relaxed state. When the kids start wacking each other with sticks, you tend to loose most of what you may have acompished during a 30 minute sesion of self hypnosis or bio feedback. But it is one more non opiate method tried and documented which gets you loser to finding true relief.
Hopefully that wll be much sooner than later.
When I explain the process or all the hoops the docs need to have documented that you have jumped through it's not that I'm saying everyone has to try each and every method before opiates should be used, It's just the reality of the pressure the DEA is putting on docs to document other efforst so that they can prescribe without fear of investigation.
This new "must be seen every 30 days thing, is not a law," But when the DEA tells a PM doc if you don't do this we will shut you down, it no longer matters whether it's a law or a threat or a new interpretation of an old law. It is what it is, pretty much extortion by a govt agency. Oops, I sound like a conspiracy theroy nut. But when the DEA can enforce any policy they deem fit without a law backing their actions, it certainly makes me think they have way to much power and influence over our medical care.
But there is no law that says each and every patient on opiates must be reevaluated monthly to determine if the treatment plan is apropriate, They don't retest cancer patients every month to see if they still have cancer, they don't do it with HIV or any malignant conditon. They don't yank back the sheets to see if an amputated leg has grown back, so yanking down the sheet monthly on patients with DXs that only continue to worsen but require opiate medcation is no different in my mind.
Heck cops don't even have to tell the truth. If a DEA officer thinks he needs to tell a doc that they have already had several pharmacist report their over prescribing practices to enforce their new policy it sends a shiver down the docs back whether it's true or not. This type of scare tactic is very common in law ebforcement and perfectly legal.
That constitutional right to face our acuser gets stomped on by the DEA in order to justify a budget and target easy people to squeeze rather than actually do something about the falling price of heroin and cocaine and the increasing purity because they can't stop that flow of drugs and already lost that war, but they can certainly police the heck out of our docs and drive them out of buisness with very little effort. I'm such a radical. LOL
I didn't mean to imply you haven't been through enough to have your pain treated, But docs do need to be able to practice within some kind of boundary in whch they know if they do X Y and Z and cross every T they won't be investigated simply becuse they manage pain with opiates. Big brother is definitely watching whether you want to believe it or not.
Anyway, I'm glad you got your first Injection scheduled, Expect a little increase in pain from the pressure that loading the epidural space with cort causes but hopefully after a few days you wll start to get some relief.
Take care, Dave
Re: Really need help, long post but urgent, need info
Bilbo, I haven't posted much here because I feel like most of you all know more than I do! I have to agree with Dave's last reply. I happen to live in Arkansas where the head of our State Medical Board is a "Retired State Police" (sorry don't remember what rank ) Tell me how much this man knows about PM !!!! Here it has gotten so bad that our PM docs won't fill a pain pump!! Why you ask, well He wants you to get the med for the pump at the Drug Store then take it to your DR and ask him to put it in!!! Talk about way too much room for abuse and contamation! Then the PM isn't willing to do the injection because he is liable for anything that goes wrong!!! Most of our PM here are moveing out of state because of all the hoops they have to jump through. Not just us. I've had to try and deal with my pain for 15 years now and it only gets harder . The Docs are scared to death to even give lorcet unless you have cancer!! or are close to dying! I have been through all the meds,inj. you name it I've tried it. Even went into detox because my system had built to a toxic level of the meds I was on. So after detox I had to go with NOTHING for 6 months I was unable to do ANYTHING because of the pain before being given even lorcet, btw I was takeing 12 mg of meth. with 5 other meds. before so I went through H#LL for over 9 months. The PCG and PM want to do the pain pump but our regs. are stopping us dead in our tracks . I have to say I feel lucky to get what pain meds I do,even though I never abused or took more than alloted as you said you do. So I ran on but I need to get the word out about Arkansas both my Docs and their patients that arent too afraid are writing the State Med Booard and DEA trying to get some lea way for us true pain suffers not for the 5% that abuse them, their time would be better spent busting the meth labs here more than anything else. Have had 3 meth bust with in my neighborhood within a month and mine is a middle class neighbor hood! Sorry again to rant and rave but it sure has helped.
Hope your day is bearable,
wolfrider
Re: Really need help, long post but urgent, need info
Dear B. Cameron,
My name is Dianne and I had my ACDF (C5-6) on 2/28 secondary to severe shoulder and left arm pain for the past two years. Now the arm pain is completely resolved but the shoulder pain has remained and my orthopedic surgeon just put me on oral steroids and said to "give it time". I have wasted 2 years of my life trying everything under the sun also and I have no more time to give.
You mentioned that your shoulder "winged" and that is the point of origin for you discomfort. Are they calling it suprascapular nerve entrapment? That is what I think I may have and wanted to know if you had heard of it and what the treatment entailed?
Re: Really need help, long post but urgent, need info
Dianne,
Please call me Bill or Bilbo (nickname since 1978 when I was a kid and facinated with Tolkein).
We talked about Suprascapular Nerve Entrapment in the past with my Dr's but, from my experience with the numerous Dr's I have seen, that condition is sometimes treated or delt with like Chronic Fatigue of Fibromyalgia. Many of mt Dr's just didnt see it as being a legitamate "condition". Keep in mind that I dont live in what could be called a bastion of medical care. Im in way northern California in a town of 70K people. I did see a few doctors at University California, Davis and they have a great rep but ironically they led me down a path that had me convinced I had a rotator cuff tear. Nope! Another wasted surgery.
Sounds like our paths are very similar even down to the surgeries and timeframe. Thats spooky.
What we did find out is that I have a couple of "bad" disks at T4-T6 and a few "injured" nerves. My Serratus and Long Thoracic nerves showed "problems" during a EMG or Nerve Conduction Study. What I was told about suprascapular nerve entrapment in relation to me is that they would have seen a much more dramatic deteriorated nerve "signal" on more nerves than the ones that showed up "injured" on mine. I use these generic terms like "bad" and "injured" purposely because my current Dr's are very unwilling to speak technical with me. Not sure why as, because of the reasearch I have done, I am able to have a somewhat two way conversation about my conditions. I just go along with it now after learning that some Dr's feel "challenged" or "threatened" when you speak the speak. Dont get me wrong, Im not a Dr. and they could easily start taking way over my head.
Have they done a nerve conduction study? Its a handy tool in this area but its not the end all be all. Some of my research has shown that not everyone with my symptoms have positve studies. My own Dr. didnt know that until I printed the study out and gave it to him. But, I would feel that one would be a good idea.
I also think you should insist on a thoracic MRI. I got down on my knees with my Nuerosurgeon who did my neck fusion. He laughed and declined and said there was no basis for one to be done and told me that my "pain" was a "function of my addiction to narcotics"..that is a exact quote. Hahahaha. I was taking 1-2 10mg Norco (hydrocodone) at the time. Hardly anything to freak out about. I switched Dr's and convinced them to do the MRI and there you have it, 2 bad disks. Oh, and the 1st EMG I had missed the misfiring Serratus and Thoracic nerves. Once the new Dr really honed in on the problem he used his noggen to extrapolate which nerves would cause my symptoms and did a complete study on just those nerves. With a more complete study on these nerves he was able to see the problem. The 1st study I had was a broad scope study that examined every nerve in my back, neck, shoulder and arms. Too much time spent on everything and not enough on the ones that correlate with my symptoms.
Bottom line and really the point I am trying to make is that sometimes Dr's can just "go thru the motions" or even have blinders on. I know thats what mywas going on with my neck surgeon. He couldnt see past my neck. He fixed my neck so there should be no problems, right? lol. I would have a conversation with your Dr. about how you and he may have gone down a single path of treatment and may not have seen the side roads of other options. (Sorry for all the metaphors and anologies. Its easier for me to think that way.) He may be willing to back up and make a turn on to another path or he may tell you, like my Dr did, that the road you are on is the only road. If that turns out to be the case, seek a second opinion.
Have you been diagnosed with NES? Have they done any other treatments or studies? What kind of pain do you have? What makes it get worse? What makes it feel better? Im just curious to see if the answers are close to mine.
Feel free to ask as many questions as you like. I have asked for so much help here and many fine folks have helped me out tremendously.
Take care and hope to talk to you soon.
Quote:
Originally Posted by 987mom
Dear B. Cameron,
My name is Dianne and I had my ACDF (C5-6) on 2/28 secondary to severe shoulder and left arm pain for the past two years. Now the arm pain is completely resolved but the shoulder pain has remained and my orthopedic surgeon just put me on oral steroids and said to "give it time". I have wasted 2 years of my life trying everything under the sun also and I have no more time to give.
You mentioned that your shoulder "winged" and that is the point of origin for you discomfort. Are they calling it suprascapular nerve entrapment? That is what I think I may have and wanted to know if you had heard of it and what the treatment entailed?
Re: Really need help, long post but urgent, need info
Hello everyone,
Just wanted to update you all on what is happenin in my medical world.
The recent med(s) change has been absolutely wonderfull and by far the single most helpfull remedy to date. I cant believe what it feels like to have only a little pain. I can get up and do things. I can wash my own hair. I can shave more than once a week!!! No noticable side effects that I wasnt already having. I am batteling a bit of constapation and Im not sure if its the increased OC or the Androgel testosterone replacement. Oh, and the Androgel has helped too. Part of my depression and lack of energy was caused by a low testosterone level and this gel has boosted it up and I feel like a new man. Long term opiate use in males can cause a drop in testosterone and can lead to Osteoperosis. I just hope that I dont fail my Major League Baseball drug tests for steroids. With the testosterone replacent and the "steroid" injections (see below) I will surely not be able to play. Hahaha. I now have some humor back too....although it may be corny at times.
Today I had my 1st Epidural Steroid Injection. Pretty uneventful. They did undermedicate me IMO. The last time I had one (1992) the "cocktail" they gave me really made me float to the ceiling while still being fully concious. This time it was almost non existant. It surely didnt help the pain and uncomfortable feeling of having a needle shoved into your spine. I had to ask them for more as I could feel everything and I was quite uncomfortable.
What was kinda funny is that half way thru the procedure, the Dr realised that he need a much longer needle to get into my disk. Im a big guy at 6'5" and 275lbs. Im not that overweight, just big. He had problems getting thru the muscles was kind of cursing about it. Guess he thought I was out of it but I heard everything. It was funny. Once he got the larger needle it went quickly but was pretty painfull. Afterwards he made a comment to my Wife about me being a "big boy" and that I wasnt a "cheap date" because of the extra meds I needed during the procedure. It was cool because we had never seen ANY sense of humor from this guy.
So, here we are 10 hours later and I feel really really good. Now I know that its most likely the local anesthesia (lidocaine and xylocaine) injected with the Kenalog (steroid) that is given me some relief but that is great news in itself as it identifies and localizes the problem. We shall see how I feel tomorow!!!
Have round two in two weeks. So far so good. Thanks for all the support. You guys are awesome!!
Re: Really need help, long post but urgent, need info
Dear Bilbo,
Thank you so much for responding to my request for info. I am just lost right now and trying to figure out which path to take.
OK, here is my story...I am a 36 year old RN, a nursing administrator at an ambulatory surgical center. Happily married with two small boys, 5 and 9. Life in general is full of blessings...my one cross to carry...chronic upper left quadrant back pain.
Beginning 2 years ago, I began having left shoulder, neck and arm pain. It would come and go, but gradually it became worse each time. I got to the point that by the end of my shifts, I couldn't wait to lay on ice and take an Ultracet. Night time was the worse. I just couldn't sleep. My primary care physician referred me for an MRI. It showed a 6mm herniation at C5-6. She referred me to a physical medicine doc that for 18 months told me I was "too stressed and if I could only relax, my pain would go away". My one nerve conduction study showed no problems. He injected lidocaine/steroids into what he referred to as trigger points, stating that my rhomboids were the real problem. He encouraged me to change jobs, go on vacations, etc. We tried PT and Valium 2mg at night for muscle relaxation. He gave me a limited amount of Ultracet to take on the bad days, but mostly I was to use the Vioxx daily to control the discomfort. In the meantime, when none of this was working, I went back to my PCP for a sore throat and she added...she really thought most of my pain was from depression. She started me on Zoloft and Elavil. Guess what? I am not and have never been depressed. Although, someone telling me my pain was all in my head really ticked me off. I took the pills to see if they would help, but they really only made me very sleepy.
Back in October 2004, I had the worst flare-up ever and called to see my physical medicine doc, but he was not on my new insurance plan, so I was referred to a new doctor who is an orthopedic surgeon. He reviewed the MRI and listened to my history....he said the pain was all from the herniated disc. My second MRI showed the same measurements, but now spinal root compression. Also, the MRI was limited to the neck, but it did pick up one thoracic herniation. (Is this what you were talking about?...I will have to look up where the report said it was...it must have been high since it was picked up on the neck study) Since I had tried PT twice in the past year without success, I went straight to ESI. After two without any relief in symptoms, I was relieved when he suggested the cervical discectomy and fusion.
So I underwent that procedure on 2/28/05. For about 4 weeks, things seemed to be better. I tried to stop the meds after 2 weeks (because I had to go back to work) but my doc freaked out. He said I atleast had to stay on the muscle relaxers while I was in the collar. The area about 2 inches to the left of my spinal column and about 4 inches down from my neck has never let up. It is a deep aching, burning pain the radiates up and to the left at times. The pain meds dull it but they don't make it go away like they do with muscle pain etc. The neck and arm pain have truely resolved, but the shoulder pain escalated with a vengence this last week and much to my dissapointment, I am back on Norco and Skelaxin again. Actually laying on ice at the moment. This stinks. My doc put me on a steroid dose pack and told me not to over-react, that set backs were expected. To be honest, the worst of my pain pre-operatively was the shoulder pain, not the neck or arm pain. I just now wonder if I went through this surgery for nothing and that is depressing.
Anyway, my wonderful husband and my two boys are very supportive...I am blessed to have that. I am just a very busy and active nurse, wife and mom and I have to get past this. I frankly will go nuts if this doesn't let up.
Thank you for listening. If you have any thoughts, I would love to hear them. Also, do you think 8 weeks post-op it is a good idea to get a second opinion from a neurosurgeon? My husband just wants this fixed ASAP so that our whole family can return to life as it should be...
Re: Really need help, long post but urgent, need info
Hi Dianne
I am 34 and have had 4 back surgeries (lumbar ) a fusion with hardware last summer and was back at work in 4 weeks. I have had a lot of other probs. But then had exploratory surgery in January with a lami/foram at 2 levels and back at work the monday after the Wed after i had it. Anyway just saying I have a pretty high pain tolerance., but when problems start showing up ... 8 weeks is still VERY early to start to panic You have not had anywhere near enough time to heal. It sounds like you started feeling good and tried to go back to "normal" like I did. Just be patient and try to take it easy and try not to worry to much. Have you had any x-rays yet? I have learned as much as I have tried that pushing it to be fixed ASAP only backfires.
Most neuros at this point will not do anything at 8 weeks post op you are not even out of your 6 month global period . and just started the fusing process.
Be patient and take care of yourself and your family. shelley
Hahaha. I now have some humor back too....although it may be corny at times.
Hi Dianne
shelley
