Advice please!

[Mouseyhurts]

Hello all!

I just want to tell my story and see if anyone has any advice for me.

February of last year I was involved in a single car accident.  My truck slid down my ice covered driveway, across the road, and down an approximately 20 ft cliff on the other side.  Since then I have been in near-constant pain in my neck radiating through my shoulder blades which has not responded to any treatment.

Diagnostic:
2 CT scans
More x-rays than I can count
MRI (which showed a pinched nerve at c4 or c5, I can't remember which)

Treatment:
PT (which made things worse)
2 different chiropractors
2 sets of epidural injections (which haven't helped at all)
A TENS unit
Inversion table

I've seen my primary, a spinal surgeon, 2 interventional spine specialists, and a pain management doctor.  The PM doc dismissed me from his practice when I asked him repeatedly to change my meds because they were making me incredibly sick.

I have taken:
Gralise 1800mg (which is the medicine that made me sooooo sick)
Diclofenac (patches and pills)
Flexaril
Zanaflex
Skelaxin
Robaxin
Mobic
Ibuprofen
Naproxen
Metaxalone
Methocarbamol
Volteran
Dexamethasone
Percocet
And probably more that I can't think of at the moment

Before the accident, I was a vibrant, outgoing, outdoorsy young woman (I'm 28).  I loved riding our motorcycle with my husband, running and playing with our dog, and gardening.  But for the past year my typical day (when I'm not doing anything I can just to get through a workday) I'm glued to the couch just trying not to cry.  I have had to cut my work schedule down to 3 days a week so that I can recover between shifts.  There isn't a day that goes by that I'm not literally crying in pain.  My husband tells me that I cry in my sleep, when I can sleep at all.  It has been ages since my husband and I have had sex.  I can't remember the last time we even went out to dinner!    I have even contemplated suicide more than once just to escape this never ending pain.

I'm so incredibly frustrated because every doctor I have seen insists that because of my age, despite the pinched nerve, I should not be in pain.  I've been called a drug seeker and told that I am faking (despite my BP being 200+ due to the amount of pain I'm in) and I've had 2 different doctors tell me not to call their office again, that I would not be given another appointment.

My primary doctor referred me to the original PM doc recommending that I be prescribed a long-acting narcotic, yet the first thing the PM doc told me was that there was "no way in hell you're getting narcotics out of me"  He then prescribed the Gralize with a starter pack which, once I reached the 1800mg, caused me to vomit for 4 days straight.  I called his office several times only to be told that I needed to keep taking it.  I finally told them that I would not be taking it again and that I needed something different.  Their response?  "well if you're not going to follow doctors orders then you won't be permitted to make another appointment and you will be dismissed"

The last interventional spine specialist referred me to a new pain management specialist, who I see this week.  I'm worried about how my being dismissed from a previous PM practice will effect my treatment.

I can't keep living like this, I don't understand how these people can look at me hobbling into their office fighting back tears because of the drive over, and insist that I'm fine.

As an RN, I was taught that patients have the right to have their pain managed, yet I have simply been passed around like a football with everyone refusing to help me.

Thank you for taking the time to read this whole thing!  I'm sorry for such a long post, does anyone have any advice about how to proceed or any treatments you think may help?  I don't want to be on narcotics all my life, but at this point I would just about kill my own mother just to be free from this prison pain has put me in.

[Veteran37]

I went through what your going through for 3 YEARS! I was sitting in my car in front of a telephone pole ready to end it. I was in tears, I could not take the pain anymore. My kids, my spouse, nor my family were on my mind. I just wanted to the pain to STOP.

After my M.D. talked me off the route, I was sent to a NEURO Surgeon. I was basically seeing the wrong types of specialists. (Always wanting to experiment, I might add)

Look, they don't believe anyone anymore. Due to the DEA and the FDA and god only knows who. They just think your interest is to get a prescription.

You WILL be made to feel like your a "junky" before all is said and done.

I don't want to suggest this, but the ONLY way I got help. Was by taking a discogram. I was litteraly blind folded, had dye or some sort of medication? inserted into my spine or nerves, (I honestly don't know, I was blindfolded and was willing to try anything), while someone was yelling in my ear, "what do you feel" where is your pain"

It hurt so much I could not speak, although my husband said, the entire waiting room and him, could here me screaming in pain.

I had TO PROVE I was in pain. So. I endured that test/procedure. The outcome was "yes, she is in the pain she states". And I am not being sarcastic. That's what it said. Basically, I was not a liar! Was it worth it? Yes, was it necessary? NO. But what are we to do? the DEA is so far up the Dr's and Pharmacist's A&^ess, there was no other way around it.

When I walked into the neurologists office, he took one look at my MRI and said, "what to you so long to come see me"? that, ended in tears too. After three years of torment, emergency room visits, etc. This specialist right off the top said you need surgery!

I had the surgeries. Two. I am not completely back to doing cart wheels, I am on pain management (and still feel like a junky due to the stigma the DEA has created). But now its managed. I Can't do the things I use to. No white water rafting, no dirt biking... :(  But I am not in bed ALL DAY and night crying because I can't move. I have not been in my car thinking about running into a pole. One time shot... (very selfish, I know, but if your in that kind of pain with no hope, what else is your option? suffer? I did, for 3 years)

I hope that helped a little. Try the discogram. Be careful of the surgeries, because as they take a disc, the ones below weaken, then your in a domino effect.

BUT, It was either take the discs, or I am taking my life.

Good Luck.

Find the right person in the field YOU need, not to where they think you need. See them all, get 3 opinions, before they cut. (If your on work comp, then your going to have a battle ahead, because they will keep denying the surgery due to your age. and money, money, money. Or I should say, they will use your age as an excuse to save money... Sad but a fact. Work Comp is as bad as the DEA situation..

The medical community is in the hands of the Government, not the Doctors. Because of that, Dr's have forgotten their oath... Their hands are tied by the DEA, work comp denials and every other entity, and there is nothing we can do about it, except sign petitions that are ignored...

One Dr. said, when I brought up the oath that has been forgotten. "Look at our Attorney's Bills you would forget too"

[mopar1]

depending on what State you are in pain management can be difficult the best thing you can do is be honest with your Dr. I have been falsely accused of abusing my pain medications as well but fortunately I was able to prove they were wrong and received an apology. A proper diagnosis is what you need before a treatment plan can be done you do not need a new MRI as long as the film is readable. you do need to see a Pain Management Dr. he is the one to help.  Do your research  good luck  

[12thManbeastmode]

From my own personal experience get an updated MRI and a nerve conductive study, when I first hurt my neck I was sent to Physical Therapy with deep tissue massage this was before any testing, everytime I left Physical therapy I was in even more pain, thankfully my Doc listened to me and it wasn't about needing medications it was knowing sonething was going on. Well we did an MRI and realized my c-3 area disc was out of its normal spot and laying against my spinal cord...the physical therapy was actually making it worse. I ended up with a neurosurgeon and han no time to research I was in surgery that next week. So pleade get a

[remar]

If you re read her post you will see that those are the meds her Dr has tried her on. That doesn't mean she took them all at one time. She also said that she is currently not taking any pain medication because her Dr refuses to help her any more.
I do agree that getting natural treatment along with conventional treatment can do wonders.
When you're in as much pain as this poster is you're not able to smile, to sleep, to do anything but feel this pain. That's why I said it would be a good idea to get her pain under some kind of control, get a diagnosis in the mean time and yes, she can also be getting holistic treatment at the same time.
Just my opinion, but if she gets her pain under some kind of control she will be able to go and get more testing, do stretching exercises, meditate and many other things that may help.
My own daughter is young but she has arthritis. Yes, she could take medication for it but she is able to manage her pain through meditation, yoga and a natural organic diet. Unlike this poster, she was not in an accident. If my daughter were in this much pain after an accident I would be pushing for pain relief first, a diagnosis and then move on to other treatments. The main thing here is for this poster to get a diagnosis so they can find out how to treat her.  

[eatsleepexercise]

Hey there...why are all drs assuming you are a drug seeker? Have the next person really look at you and make sure they do muscle testing. I'll always push for the holistic approach. I'm  medical massage therapist so I  can  tell when people are lying.-to tell the truth the md/do might not know how to test you appropriately.  I'm still  very curious about the med thing. Also, make sure you see charts-it sounds like someone put a NOT SO NICE COMMENT.

[jerry_all19]

Hi, sorry about my earlier post -- I probably wasn't clear, it didn't occur to me that "holistic doctor" was a bit too vague. I would definitely *NOT* be interested in being "adjusted," etc., until I am 100%.... no.... 110%! sure that no injury would happen with manipulation. In fact, right now, I wouldn't want anybody yanking my body around, at all :-)

By holistic doctor, I mean.... (I'm forcing myself to be 'clear' here.... very difficult).. I mean a doctor that looks at the body "as a whole," and has TRUST that your body is intelligent, sentient, and can fix itself "with a little help."

The first thing I did was look at that HUGE med list of your's. You either have a doctor that is gung-ho on pushing all kinds of pills, or, your doctor is very compassionate and is trying his/her best to throw all kinds of meds at each of your symptoms.

Here is what stood out to me. Note that it is interesting that each respondant will have a different perspective. You know that story about the 3 blind people and an elephant. To one blind person, the elephant is an animal with a long snake like appendage. To the 2nd blind person, an elephant is an animal shaped like a couch. And, to the 3rd blind person, the elephant is shaped like a tree trunk.... or something like that. I digress.

Anyway, here is what stood out to me:

"I'm glued to the couch just trying not to cry."

If I were your doctor, my goal would be to
#1. Get you off the couch
#2. Get you smiling

I believe ALL those meds are messing with "the real you."

At least with pain, you can smile, laugh, cry, scream, giggle, and BE YOURSELF. However, with Pain PLUS all those meds, your "self" is hidden in a fog.... just an overwhelming despair, loss of reality, a "dimming" of the proverbial "light at the end of the tunnel."

Yes, I'm rambling... but there ARE bits of wisdom scattered in this post of mine.

Here's something to consider. (Watch everybody jump all over me here LOL). How about getting off ALL meds, and ONLY take codeine (as in Tylenol 3).

Each and every one of those dozens of meds you are taking is to make your pain stop, mask the pain, and make your body stop being inflamed.

If you go to a holistic doctor, they can lay out a "detox" program, nourishing food, anti-inflammatory foods, "feel-good" types of foods, and a series of mild exercises to bring back motion, in a non-harmful way.

I'm talking "the gentle approach."

And, don't "poo-poo" the codeine, either. What's the strongest narcotic on earth? Heroin! ONLY legally used in Britain for the most severe of severe pain. How does heroin work? It doesn't! What happens is the body *converts* heroin into Morphine, the prototype of all opiate pain relievers, the "mother narcotic," so to speak. How about codeine? How does codeine work? It doesn't! What happens is the body *converts" codeine into.... you guessed it! Morphine! But in a much milder, softer, more natural way. And without all the addictiveness of Percocet, and the 'fancy' opiates. Because codeine makes your BODY feel better, doesn't mess with mind like Hydrocodone, Oxycodone, and all the scary stuff you read about on these forums.

Anyway, before everybody jumps on me that I don't know what I'm talking about, please consider ALL the meds you are on, ALL the shots you have been having, ALL the treatments you have been having, and what's the result? You are on the couch, trying not to cry.

So, logically, a different avenue might be considered. A holistic, natural doctor, with natural treatments, and, if you absolutely need an opiate, maybe Tylenol 3.

What do you think?

Again, I'm not a doctor, this isn't meant to be advice; rather, I am intentionally rambling, because I'm hoping there is a sentence or two I've written where you will go, "hmm... I didn't think of that."

REMAR is right about MRIs. I would get my whole body examined with a fine-toothed comb, so to speak. But I would consider having a holistic/spiritual side to my treatment plan -- so the "real you" the one that laughs, cries, has hopes, has dreams, doesn't get buried in all kinds of medication and your entire day isn't spent on one form or another of pharmaceutical or medical procedure.

Best wishes. God bless.

[remar]

The problem with get adjusted and having other holistic treatments is this. If by chance the MRI missed something having these procedures done can cause more problems.
It really is best to get a diagnosis first to see what you can safely have done by a chiropractor or holistic Dr.
I do agree with the above poster, Jerry, that getting holistic treatment can do wonders. This can be done on top of seeing other Drs for treatment.
You've already seen 2 chiropractors with no relief at all. Usually if your back and or neck is out you will get adjusted and feel much better, unless there is more going on.
I'll recommend this again. Go back to your Dr and talk about a combo of medications, a long acting and a short acting for break through pain. In the mean time, push for more testing.
I take it they did the MRI only on your neck, or was it all the way down in to the thorax region? If it was only on your neck as to have that test repeated and also ask to have the thorax region tested.
You've got to keep this pain under some kind of control until they can find out for sure what's causing it.
I hope you do come back here to MH to read what we've written. Oh, and I did ask about your medications in my earlier post. The only one I know of for sure that's a pain med is Percocet. If they had you on a very small dose only once or twice a day it was most likely to little.  

[jerry_all19]

Round peg into square hole.

I can't give advice (I'm not a doctor), but a friend of mine that had the *exact same experience* as you, who had the *exact same treatment* and medications as you came to me. The following is what I told her:

Do a "180" and take a completely different route, and I mean *completely.*

Use Google and type in:
ratings holistic doctors Seattle

Then I told her to do a TON of research. Because she's home-bound (glued to the couch), she has time to search from her computer, and read rating after rating, because she is going to find the VERY BEST most kind, compassionate holistic "natural" doctor in her city. One that has been practicing for 20 - 30 years.

One that is not interested in pushing different meds like Gralise down people's throats. Rather, one who is such a good doctor, they know from first-hand-knowledge: Body, Mind, and Spirit.

One that is so radically different that as soon as you walk into their office and meet them, you will feel cared for and feel like "everything is going to be all right."

You can do all that other stuff, jump thru' hoops, pills, shots, etc., while you are on a quest for an excellent holistic doctor, because when you find one, your life will have a fresh new start.

[remar]

I'm so sorry you're going through this. There is no doubt something is going on to be causing this much pain.
When you see the new Dr carefully go over everything, every test you've had and all of your medications. You will most likely be required to do this any way. You need a diagnosis. This is so very important so you know what kind of treatment you need, surgery, more PT, what kind of medication. Until you get your diagnosis you may want to talk to your knew Dr about being on 2 meds. One long acting and other for break through pain. I'm fairly new to chronic pain myself so I'm still learning about medications. I do see you've tried a long list of them but the only one I know for sure is a pain med is Percocet. Can you say what does you were on and how many you were allowed to take per day? This can be a good pain medication for many of us but you have to be on the right dose. If it's too low and you're not taking the proper amount for you then it's not really going to help much. Please don't give up. I truly know how you feel because I've been at this point many times myself. It might be a good idea to ask for another MRI from a different Dr and at a different facility. I'm so sorry you were let go from pain management only because you were not getting any help from the medications they gave you. It's not uncommon to have to try patients on different meds at different doses to get it right. I really hope your appointment goes well with this new Dr. Did you already get a release from from your current pain Dr? If not, I think you may have to do that before you can get any treatment from the new Dr. Maybe one of our other wonderful members here can let you know how that all works. Do let them know you're doing everything possible to get a correct diagnosis but in the mean time you have to have something that works for you. Like I said before, it may be a combination of pain medications. Please keep us up to date on how everything is going. All of us here understand what you're going through and we will be here to support you through all of this.

[Mouseyhurts]

As of right now I am not taking any prescription medications, all of my doctors have refused to prescribe anything more than what I have already tried.