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Need some help deciding

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Old 06-01-2006, 10:38 PM   #1
Wonderful Life
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PM needed or just different meds?

Hi, my name is Michael and I am a 26yr old paraplegic(t-11/12).
I have had left side/flank pain for three years now, it started after my accident. I started on oxcontin then hydrocodone then neurontin then gabatril then elavil then duragesic patch then oxyIR then percocet then lyrica then etc....

I have pretty much been taking hydrocodone or percocet non-stop for 3 years with the others thrown in to try and help.
So far nothing has worked except the pain meds, but I am getting tired of the constant rollercoaster of oxycodone.
The pain is pretty much always present. It feels like the muscles starting at the base of my rib cabe are always tense and stressed and typically feels hard. Also have scoliosis and some back pain, but that is off and on.

My question is do I need to see a pain management specialist at this time or how do I approach my doctor about changing meds. I want to go to a long lasting med like oxycontin or something else that lasts. My doctors have never offered me a pain specialist but I have tried 15-20 meds and getting tired of being a guini pig.

My doctors office seems to be tight when it comes to the pain meds, if I run out a week early they say I have to wait and that week is a nightmare. My last doc was opposite giving me way more presciptions than i needed but lacked competency (after watching me get out of my wheelchair he numbed my toe before removing ingrown toe nail, he laughed but i was worried)

Last edited by Wonderful Life; 06-01-2006 at 10:49 PM.

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Old 06-01-2006, 11:31 PM   #2
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Re: Need some help deciding

Hello sir- Sorry about the accident first and foremost.

You said you were on Oxycontin...which doctor prescribed this for you? If it was the Dr. you are at now, I would think it would be easy to ask for it again.

If it was another Dr., is there any way you can get back to him/her?

I think a pain management specialist might be someone to consult with, at the very least, about your concerns if your doctor doesn't feel comfortable prescribing medication that helps you.

Old 06-02-2006, 12:10 AM   #3
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Re: Need some help deciding

Welcome to the boards!

Yes, you should see a PM specialist. I think anytime that you will be taking pain meds for a long period of time (chronic), you should see someone that specializes in that field.

You mentioned OxyContin, which is a long acting form of Oxycodone. You also mentioned duragesic which is a long acting and actually the stongest pain med you can get. Of course everyone is different and responds to meds differently.

You may want to consider something like Kadian or Avinza which are both Morphine long acting (24 hours). Or Methadone works very well for some people and is pretty inexpensive. And then maybe a short-acting med like Oxy IR or Hydrocodone for break through pain.

I can tell this though, running out of meds early is frowned upon by a doc. Many PM clinics will kick you out for that. Make sure that when you see a doc, you discuss your daily need for meds and come to an understanding with that doc. PM docs are watched very closely and many PM clinics will audit your meds. So just make sure you are taking them as prescribed.

Hope you find a good doc, sorry to hear about your injuries.

Take Care

Old 06-02-2006, 07:30 AM   #4
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Re: Need some help deciding

sorry about your accident and what you are having to deal with now.are you complete or incomplete?so just what does your pain really feel like(all the symptoms)any burning involved or just strictly the muscular issues you mentioned?botox may be of some help with the muscle contracture that sounds like what may be going on in your back.i know I have contmplated it for my leg spasticity I now have as a result of a direct spinal cord injury due to a surgery done on the inside of it.from what my physiatrist told me,I would not make a real good candidate for botox for my particular type of spasticty as he said it worked much better on the more contracted type of muscles,the release is much better I guess when the mucles are more severely hardened or in constant contracture as yours kinda sounds like it is.just a thought.

going to a good pain clinic really would be a very good idea.they can just offer you sooo many different therepys(including the botox option in most cases) and the ability to try many different types of meds,both non and narcotic types that you just realistically cannot actually get with any other type of specialist out there.

if your pain is more structural/mechanical and not actually neuropathic in nature,i really do think that any long acting med such as the contins both MS and oxy would both be really great choices for your specific type of pain.did they work at all when you at least tried the oxycontin in the past?

arranger is very right about the running out of meds early while under the care of a pain management doc,this is why it is vital that you be totally honest about the level of pain you are having and getting the appropriate dosing of any meds you are on.being undermedicated at the outset when starting with pain management will only lead to problems down the road when you feel soo much pain and start thinking,"well if I can just take one more..".once you go past that line its kind of downhill from there and you may end up without the help of this vital type of will also need to sign an opiate contract that spells out what the rules and regs are within that clinic.we all have to do that too.its not that bad,you just follow your docs orders and you will be fine.i really do think tho that a good pain clinic will help you alot in managing and steying on top of your pain.

do you have any other types or areas of pain other than the areas you already mentioned?are you experiencing any other neuro crap?I kow that once the spinalcord is injured,just about anything is possible as far as neuro nightmares just popping in from time to time and then some decide to actually take up residence inside your body really does suck.

by the way,welcome to the boards.I certainly hope that we can at least offer you some help and guidance here.I would most definitely ask one of your docs for that referral to a pain management doc.I really didn't obtain any real good relief til I started seeing my current pain doc.he really made things much easier to handle for me,hopefully your new PM will be able to do that for you too.good luck,and please keep us posted on how things go.marcia
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

Old 06-02-2006, 08:22 PM   #5
Wonderful Life
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Re: Need some help deciding

First, thank you all for your responces. To be honest I have somewhat ran from medical issues over the past years. I didn't like reading about my injury or discussing with others, except my doctor. I have avoided forums such as this and also local spinal groups just because I was in some form of denial and it just made me more depressed to talk about it. Now I think I have started to accept it and going to try and find out as much information as I can to hopefully make my life more enjoyable.

Yes I have a complete injury. All of my doctors agree that the flank/side pain is due to nerve damage but they can't seem to find a solution. My neurologist has given many nerve medications and this last visit he said we might try cortizone injections into my back near the break. I have rods and tons of screws so they think maybe a nerve is being affected by the instruments, but not sure. Also due to my scoliosis they are worried about additional shifting in my spine even with the rods. They monitor it closely and have talked about sending me to a specialist who works with spinal deformities.
The side pain is literally there 24 hours a day, but the intensity fluctuates. It just feels like the muscles are constantly flexing as hard as they can, its hard to explain.

Other than that I do have some back pain right where the rods end at the lower part of the back, it can get bad. The oxycontin/duragesic patch both helped greatly, but they said duagesic wasn't good long term, dunno why.
The worst pain I have is what feels like electricty shooting from my groin area to my inner thigh, it lasts about 2 seconds each time but usually happens several times when it starts. Litterally it can cause me to jerk or nash my teeth, but I have no clue what causes it and it only happens maybe a few times a week. I have never talked to my doctor about this since that is below my injury level and I shouldn't feel anything. I have heard of phantom pains but don't know alot about it, mostly I didn't want to sound crazy to my doctor. I mean how do you tell him I have pain in an area I can't feel....

So right now I have one doctor who wants cortozone injections or more nerve meds. One just suggests pain meds. And my third suggest pain meds but did mention botox. I just get confused and frustrated.

Last edited by Wonderful Life; 06-02-2006 at 08:29 PM. Reason: make shorter

Old 06-03-2006, 07:32 AM   #6
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Re: Need some help deciding

first of all,i do understand the running away from this and the denial that just comesalong with something that just totally and completely changes your life,like in a heartbeat.its alot to have to take in all at one time.I do think your response would be considered very very normal given the life changed completely the second they opened up my spinal cord,and life as I knew it before pretty much ceased to exist anymore.

you DO go thru a certain level of grieving.just because of the enormity of your are grieving for the life you once had and it is a very devistating thing to have to deal with,espescially when its there,in your face,24/7 and you just cannot 'get away' from it.believe me,i do understand that part of what you are going thru,only my damage is not to the point of yours,but I have had to totally give up anything and everything that once gave me any real joy in my life or a sense of really does just suck.

you sound like you have passed thru the denial the major grief(although,it still will surface) and have moved onto more of the acceptance stage,and thats good,now its time to kick its ***.you are the one in control now,do not ever forget DO have some power here over what is and isn't done.and always remeber,your docs work for YOU and not the other way around,K?

first of all,i really do think that despite the fact that you are technically "complete" you still do have some attacthment there to at least some of the sensory fibers somewhere.this is very common with completes.tho the films will show what appears to be a total complet seperation,despite that,you CAN still have some sort of attacvhment left there.If you do any in depth research on spinal cord injuries,they mention this alot,and fromthe different SCI forums I have popped onto,you are definitely not alone with having sensation,or mostly pain and other wierd neuro crap technically,below the level of injury.

for this type of thing,the anti siezures and the tricyclic meds seem to work the best.although I still feel that the other pain you mentioned still would be best treated by some sort of long acting narcotic,which you have stated did work for you?

I would really consider at least giving that botox a shot,really.from what I have read on it and what my physiatrist told me ,like I stated above,the type of more rigid spasticty like you are currently having,responds much better to botox than like the lessor type that i now have.

as far as what docs orders to follow,first,I think you really do need to narrow down the docs.this would help alleviate some of the frustration and confusion for you,do you really feel any of your current docs have your best interest at heart?is there any particular one that you have a really good connection with?

tho i have many different docs,my pain doc handles the majority of my meds,definitely all of my pain meds.but I do have other docs I see from time to time just because of the many different medical problems I am dealing with.I still keep my physiatrist tho I have not really seen him in over a year,but he is there if i feel something needs his attention.I still have to see my neurosurgeon but only definitely once a year for a follow up along with the yearly MRI.i only see him now tho for anything else if I should have a big change in my neuro status or a problem with my c spine or my aneurysm.other wise my PM really IS my biggest appt taker upper.

if i were you,i would just really sit down and evaluate which doc you really do feel is giving you the best advice and treatment right now and possibly go with this person above the others for your "main' source of treatment including your pain management can still keep the others but you really DO need to just have that one main doc for the most and biggest part of your ongoing can always take the info from what your other docs have reccomended and just sit down and discuss all of it with the one doc and see what you two can come up with that YOU feel would be worth a try.researching any treatment possibilitys before actually consenting to them is always a really really great idea.this is what I do before actually doing anything.just because a certain doc reccomends something doesn't mean you have to actually do it,remember,you are the one who is in charge of your own healthcare.evaluate things on your own time on your terms to really see what you feel is the best way to go.

i do hope things will get better for you.hopefully just getting it down to one main doc will help a ton with feeling so overwhelmed and just already have more than enough crap to deal with,why make it even harder on your self ya know?Please let me know how things are going for ya,K?take care WL,Marcia
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

Old 06-04-2006, 06:36 AM   #7
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Re: Need some help deciding

Hey WL, a thought just crossed my mindhere while i was doing some more research on my central pain problems.i am rather curious about that area where you have those really hard muscles?have someone try doing a very deep,hard push,straight down into the muscle and hold it there for several minutes and see if there is any actual feeling of relief at all.

actual friction will make it worse,you know,the 'usual 'type of massage?but that deep pressure will actually fatigue the muscle and damp the spindle which in turn brings it in more paralell to the rest of the muscle fibers.this actually "stretches" the muscle spindle in a way that nothing else really can.

if do actually feel any real relief,you 'could' have whats termed "gamma pain'.it is pain caused by the motor unit that affects the muscle spindles.I do have this component as part of my central pain syndrome and this works when I do it on a 'muscle/pain flare"?this is very different from my normal buring from hell that i have in my arm from the central is just one other component of it,i am really wondering if this may be just a possibility for what may be causing the muscle pain you are having.just a thought.if you can just try that little experiemnt and let me know how it goes?if you have an intact motor unit,this is just one possibility.hope things are going okay for you today WL,marcia
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

Old 06-05-2006, 08:21 AM   #8
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Re: Need some help deciding

Hi WL, UNforunately most everyone with chronic pain has to play the guinea pig because there is no one med that fits all or one modality that works for everyone. Many peole with intracatble pain or spinal cord inuries or even progressive diseases like MS need a multi faceted aproach to PM. NOt every PM doc or clinic will offer the same form of treatment so it may take a lot of trial and error. Intrathecal baclofen is one of the treatments of choice for severe spasticity caused by MS or spasticity caused by SCI's. There is an oral version of baclofen but it's nowhere near as effective as having it delivered directly to your spine. The same goes with pain meds.

Nerve blocks or nerve ablation procedures may help because as Marcia pointed out severing the cord doesn't neccesarrily mean you have severed all the nerves particlualrly the medial branch nerves that connect each vertabrea. If you respond well to a medial branch block then chemical or radio fequency ablation procedures may bring longer lasting relief.

Pump implant and management, stims, Infusion therapies, Interventional procedures aren't usually offered by every PM doc or specialist in prvate practice. You would need to find a PM practice or clinic that offers a multi Disciplinary aproach with an anesthesiologist, neurologist,psychiatrist,osteopath and physical medecine doc on staff is more likely going to be able to offer something that may help.

There really isn't a single specialty that has the market cornered on the best pain management techniques. Any doc can write a script for narcotics or antiseizure meds but that doesn't make them a knowledgable PM doc. If that's all they can offer, they will only be able to help a small portion of patients that have to live with chronic pain.

Good luck, Dave

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