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MRI's and need help finding a path to functionality

neofatenneofate Posts: 2
edited 12/04/2014 - 6:13 PM in Pain Management
Hi.. I'm new to these forums.

I have studied medicine for over a decade,.. a little at university and the rest on my own.. it was originally a passion of mine and ironically has become combined with my own medical/pain issues causing me to be hyper focused on studying the pharmacology, neurology, anatomy, etc of what may be my own condition/cause/root of chronic pain.

I am currently 35. I had two head on collisions in my 20's (about a year apart) one at 50mph and one at 40mph.. both totaled the cars and knocked me out (with airbag deployment).

Aside from severe cases of long lasting whiplash and back soreness I recovered at the time.. and was "fine".

Fast forward a few years. I started to get some pain in my neck and lower back.. Fast forward to about 2006-2007 -- The pain had progressed to a chronic nature at this point.. and I was not realizing it as much at the time.. but looking back I had already started cutting back sharply on social activities (going out with friends, etc) -- Cutting back on work.. and well.. LIFE! All because of the pain I knew I had.. but I had no proof and didn't link any "cause" to it.

Now fast forward to present. It took till December of 2013 to get my first MRI ordered. And that was only of my cervical region. (You know how that goes..)

The results:

C3-4 - No significant stenosis is seen.

C4-5 - There is uncovertebral and facet hypertrophy causing moderate right neural foraminal stenosis.

C5-6 There is uncovertebral and facet hypertrophy causing moderate Bilateral neural foraminal stenosis.

C6-7 - No significant stenosis is seen.

Impression: Moderate degenerative changes within the cervical spine.

Now I'm not asking anyone to interpret this for me. (mods please don't remove / close this :) ).

It's straight forward on paper.. I have narrowing (due to growth in uncovertebral and facet areas/joints) which in C4-5 is on the right side of the nerve exit,.. and in C5-6 is on both sides.

My pain is hard to just one sentence out to a doctor or anyone. Best way I can say it is my whole spine hurts.. all the time, 24/7/365. But that's very unspecific.

I have particular areas that are more prominent -- and a few that are sharp, and agonizing that can cause me to double over in pain everyday with certain movements.

Briefly -- my neck is stiff ALL the time.. never stops, is VERY stiff in the morning.. and pops crackles and snaps with any movement (luckily most of that crepitus is not that painful) -- the neck is quite painful though.. but has taken a back seat to my back now.

Another bad spot is between my right shoulder blade/scapula and the spine.. when I breath in it hurts sharply. When I don't breath it hurts all the time. It flares up I'd say 5 days out of 7.. where I'm in my inversion table.. using a massager.. doing light resistance rhomboid, teres, lower trapezius exercises.. using two tennis balls in a sock on the wall.. ( you know the things we do..) -- and while driving I can hardly focus in these times.

The other MAJOR spot is around my SI Joint. This is one that causes the "sharpest" pain - and the one that can cause me to nearly fall to the floor many days. Hate getting out of bed in the morning and that first step is agony! I'm sure you guys can relate.

I'm constantly modifying the way I walk, figuring out ways to bend to pick something up, and so on to just try and make that area not feel like a sword being jabbed into the Sacro illiac area.

The pain examples can go on.. but no one wants to read that.. just giving an idea of it.

This chronic pain has caused me.. (to my shame) .. be back in with my parents.. work from home (I'm in IT professionally) and make a very meager living.. limited to the pain -- and more to the point of this post -- limited to how many days I have some medication that literally allows me to function.

We all know this kind of pain never goes away (I can't remember what it felt like not to be in pain anymore) -- but I can accept having the level lowered and power through it .. it's the cards I've been dealt.

Well.. I'm on Hydrocodone and a few Tramadol.. have been for years..

Problem is the tramadol helps, but it's weak for this kind of pain (in my case) -- and the Hydrocodone actually works enough that I can operate/function on it. But, I get enough for about 9-10 days a month of functioning.. the other 2/3rds of the month I'm lucky to get a few hours of work in.

So I've had it.. Knowing I'm doing everything I can on my own to help the pain (I do a lot of exercises for it on my own.. inversion, diet to help inflammation, etc ) -- I must get on with my life. 10 days a month doesn't cut it.. I need to have pain levels lowered for the whole month.

So I finally get brave enough to tell my doctor (he is a smart doctor, and the 3rd one in the last 10 years.. first one I've actually been impressed with his knowledge.)

But I finally decided enough is enough.. and go in and have printed out diagrams the body/spine.. and the musculature of the back. I marked properly where my pain is exactly. I wrote out two pages of how the pain is effecting my function.. from the sleepless nights, to work, to school (I'm back finishing a degree).. to social life, and so on. All 100% the truth, and my entire family wanted to GO with me to this appointment because they can't stand to see me live like this anymore.

I tell them thanks, but I'm a 35 year old man.. and I think this is best if I just do it alone.

Well today at the doctor -- I didn't tell him .. hey doc,.. I need XYZ medication.

I handed him my MRI hard copy (that he never had.. he just heard the phone call from the imaging center last year) -- and mentioned the papers and he just grabbed them (I meant to explain them to him) -- but oh well, he started skimming it all.

I then said, The hydrocodone works well,.. but it only provides X amount of relief per month. So, do you have any ideas for replacing the tramadol with something that will give me more time of the day and month to be functional?

He says..

"Yes, I can think of a thousand. but we aren't going there."

I said something.. being courteous .. but trying to get my point across .

He says: "Your MRI shows nothing. I could go have one and it would show something."

I say a few more things..

He says "Do I believe you have SEVERE pain?.... Yes!" .. "Do I believe your pain is chronic and persistent? Yes, absolutely." "Do I believe you have done everything you can to help that pain? meeehhhh" (Sort of a no sound..)

He then says "You need more MRI's to go that route." (I'm sure he means getting a medication that is an extended release medication so I can have pain relief for more than just X days a month or X hour a day)

I respond "Dr. xxxxx, I have asked you 5 times this year for MRI's of the Thoracic and one of the Lower back,.. but you have told me each time that I don't need them. That I wasn't going to have surgery,.. so they are not needed."

He says "Well, you need More scans,.. and unless a scan shows something we aren't going there with the medication."

I respond" Fair enough."

He just walks out..

I was mad and amazed at the same time. This is a NICE guy.. nicest doctor I've ever been to. But he acted super short, and just didn't give me a chance I feel this time. He also said right to my face he knows and believes I'm in Severe chronic persistent pain but yet he can't / won't help me with the relief to control it for a reasonable amount of time.

So.. what do you guys think?

I know my MRI , I guess,.. is completely normal.. But it is just of the neck,.. and how can any one be 100% sure that the stenosis shown isn't causing any of my upper back/neck pain? Or arm weakness?

Am I wrong here? Is it that black and white?

I hope at the same time my Mid and lower back MRI's (when I have them this month) show some problems.. but also I don't WANT major problems. I just want enough pain relief to live my life. This is no kid trying to get high,.. I'm doing everything by the book.. I see him every month.. always have,.. never miss appointments, never call in about medicine, I get drug tested randomly,.. and on and on.

So.. I need to figure out a way to get the pain relief I need. But I just don't know what to do. I'd be lieing if I said the near decade of living like this hasn't had the thought of ending it all at times.. but I don't want that -- I just want to not be disabled to the degree I am.. especially when there is help out there to be had.

Can anyone relate?

Can anyone, perhaps, offer some ideas on how to go about finding a physician who will help?

What would you do?

Thanks for taking the time to read this,..

Take care,
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Comments

  • LizLiz Posts: 7,904

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • What a roller coaster for you. Don't feel ashamed about living back at home, you need their love & support especially when your dr seems dismissive about the cause of your pain. I think it's a great idea to have the other mri's. At least they will show or not show the cause. Although I don't wish they show anything, it may be a relief for you if they do. I know I felt better mentally knowing my MRI showed something rather than nothing.

    I don't really have any advice to offer or relate too. I was lucky enough to see a dr who quite happily sent me off for tests and prescribed me medication. I think our health system in Australia is easy to navigate compared to others in the world. Although I paid privately for my mri's (I've had 4 in the last 12 months) I think around $400 each was worth my peace of mind.

    I really hope you find a dr who is caring and not dismissive of your pain, and some answers to the cause of your pain,
    Veronica
    Microdiscectomy L5S1 January 2014
    Microdiscectomy L5S1 March 2014
    Fusion L5S1 11th August 2014
  • Owie_999 said:
    What a roller coaster for you. Don't feel ashamed about living back at home, you need their love & support especially when your dr seems dismissive about the cause of your pain.
    Thanks. It's tough though. I feel ashamed, like a failure as a person, as a man, pride hurt, etc. But, this has beat me down over the years to where my goal is solely to solve this with whatever it takes.

    As for the doctor being dismissive. Maybe he was having a really bad day.. I don't know,.. I really like this doctor,.. he's always been so nice, knowledgeable.. and unlike other docs.. has spent 30-45minutes discussing things with me in the past.
    The appointment I come super prepared to have the most serious discussion about health I ever have.. he seemed like he didn't have any time for me .. and said my MRI was normal.. that he could go get one (he has no pain) and insinuated his would probably look just as bad.

    I've since read and studied quite a bit that indicates that even moderate stenosis can genuinely be the cause of some serious chronic pain issues and the weakness I have in my arms when I hold them up. (After X seconds I have a hard time continuing holding my arms in the air.) -- IE: Hairdrying my hair.. I have to stop a few times to rest my arms/shoulders. Which baffles me.

    Anyhow -- He's told me a few times he believes me completely. Even in this last visit that did not go well at all -- He said : I believe you are in Severe pain! I believe your pain is chronic and persistent. He offered that.. I didn't ask. Which just leaves me scratching my head,.. I can only figure that since the medications to treat this are so tightly regulated.. and deemed "evil" in some way by the media, and other sources that he knows I'm suffering immensely but isn't willing to cross the bridge to help me to the degree that I need to be.


    I think it's a great idea to have the other mri's. At least they will show or not show the cause. Although I don't wish they show anything, it may be a relief for you if they do. I know I felt better mentally knowing my MRI showed something rather than nothing.
    The first consult/visit I had with him a year ago -- He spent close to an hour with me. One of the first things I said / asked before any medications, etc.. was Doctor ,.. would you be willing to request an MRI of a section of my spine (as I know they have to be done in sections due to insurance purposes) and I think it would be wise to start this process as soon as possible. He agreed to order one,.. turned out to be the cervical. Which as you saw showed moderate stenosis .. on the right side in one area.. and bilaterally in another.. But the neck is just a small portion of our spines.. there is much more to look at, especially when my pain exists in every one of them.

    At one point I absolutely did NOT want anything to show up on my MRI's because I know the low rate of long term success with many back surgeries. However, now after some time/years.. the condition I am in,.. the pain,.. the inability to function, be independent etc etc..

    Yes.. I would rather my Scans start to show something that the Dr's just can't and won't ignore or brush off.. So I can get treatment and finally lower my pain levels on a consistent basis and start to move on with my life as best as I can. I have realistic expectations. I know my pain will never go away.. I realize this is going to be with me for life (started at 25.. now 35yrs old).. I don't have expectations that my pain be "cured". etc..


    I don't really have any advice to offer or relate too. I was lucky enough to see a dr who quite happily sent me off for tests and prescribed me medication. I think our health system in Australia is easy to navigate compared to others in the world. Although I paid privately for my mri's (I've had 4 in the last 12 months) I think around $400 each was worth my peace of mind.

    My insurance is quite expensive. Before Obamacare.. in 2013 my insurance was $140 a month.. When 2014 hit.. it moved from $140 to $280 a month for lesser coverage.

    In 2015 it is moving to $320 a month. It's mind blowing to me.

    Anyhow.. MRI's with my insurance is either $250 or $350 per scan co-pay. I think it was $250 before obamacare and now is $100 more at $350 per scan. That is still a LOT better than having to pay for one w ithout insurance. here.. if you don't have insurance.. you will pay many thousands of dollars for an MRI scan.

    I don't know which section he will choose next. Someone is supposed to call me to let me know about scheduling. If it hasn't happened by next week. I will be sure to call his office back to get it going.

    I really hope you find a dr who is caring and not dismissive of your pain, and some answers to the cause of your pain,
    Veronica
    Thank you for the well wishes.

    This must happen. My life depends on it.. If this doctor ultimately won't help after all my scans.. I will have to move on elsewhere.. not sure where. Again,.. he believes my pain is exactly as I say it is.. it's not that he doubts me, and thinks I'm just after pain meds or something.. and I hear him talking to other patients who have migraines, or other much less chronic pain who are getting medication that would benefit me. IE: Oxycodone ER.. patients who don't have scans to prpove anything who get the common regimen of an ER medicine with a breakthrough IR medicine -- So I don't quite get his reaction.

    I'm more than willing to sign a pain contract, (I'm already randomly drug tested),.. have pill counts.. whatever he needs to protect himself. I already do quite a bit of alternative therapies for my pain.. but am willing to do any PT, etc that he suggests. I am literally the "model" patient here..

    So no one has any advice? I know even my cervical MRI isn't completely normal.. and I've been asking for more scans for the last year,.. and he has responded that what is the point? If I'm not going to get surgery then there isn't any point,.. etc. Then the last appointment he asked why I hadn't had any more scans. While I'm like.. I've asked you at least 4 separate times this year I want to get to the root of the pathology/cause to better be able to treat this situation. I am not , and I hate that so many of us even have to justify ourselves this way,.. a person who goes in asks for pain medication and that's that.. and happily walk out. I'm interested in why,.. what else can be done,.. other options,.. etc.

    I know I probably sound like I'm just complaining and whining. I'm sorry if that seems to be the case.

    It's just so frustrating to do everything by the book.. do years of research on the condition and know all the major proper protocols and treatments yet essentially be under treated vastly because the doctor is afraid the dea/government is going to take his license if there isn't XYZ on a MRI scan. He didn't even mention what exactly he is looking for.

    Perhaps, the next visit (hopefully this month after a scan) will go much better.. and he will realize he was short that day and have a much more normal reaction and mood toward my situation. He kept papers I had typed explaining the whole situation from start to present.. and exactly how it was effecting my life from sleep, to work, to college, to social activity, to exercise, etc. I explained the truth -- the dosage of hydrocodone (only medication I am prescribed) that was effective in 2005 for pain relief.. and that it is the exact same dosage 10 years later and still effective for pain relief. Indicating that this should logically indicate I should have no need to continually up my dosage due to tolerance issues.

    I never mentioned any specific medication,.. simply asked if he had any ideas of ways to help alleviate the pain for a longer portion of the day. After that was said,.. it was like I had just asked for the moon. So strange.

    Thanks for your reply,... it is appreciated -- and again, I am glad you got immediate help and relief. That is how it should be. A disease needs to be treated.. And I would think chronic severe pain ranks up there with diseases in need of active treatment. But maybe just suffering is expected? Surely not.

    Be well everyone,
  • dilaurodilauro ConnecticutPosts: 10,059
    edited 12/05/2014 - 5:16 PM
    After reading your post several times, the message that I am seeing is that you are very down and discouraged about the medical field, doctors and your situation.
    You seem to be coming across as being very negative and not trying to look at the positive sides.
    I could be wrong, but after reading thousands of posts over the years, this is what I see.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • EnglishGirlEEnglishGirl Posts: 1,825
    edited 12/13/2014 - 5:13 PM
    In the current environment it's hard. Even with MRIs clearly showing very painful generators there are PM docs who will not prescribe narcotic medications & many others who under prescribe. Even typically anti-narcotic publications & political speeches are starting to recognize that the war on prescription drugs is effecting patient care. Throw in a few basic studies that claim long term use of narcotics causes all kind of problems, including increased pain & it's not surprising that docs aren't as willing to write prescriptions for narcotics as they were in the past. Only time will tell what the right approach is for prescribing narcotics.

    I don't know what kind of PM your is. I know a PM in my area that automatically increases narcotic meds for a new patient! Is your doc independent? I had a doc who was not allowed to prescribe continual use narcotics by the company that owns that chain of clinics. I've met a PM who is completely against narcotics & will NEVER prescribe them.

    If you honestly believe you are doing everything you can to manage your pain & you think only ER narcotics will allow you to function acceptably you need to find out what your docs views are. Results of your diagnostics could clear that up. If he won't or can't prescribe for you all you can do is get some 2nd opinions. In my experience GP's know which PMs do & don't prescribe. You could start there for recommendations. Without clear diagnosis with diagnostics to back it up it's going to be very hard to find a doc that will 'step-up' your meds I think.

    I'm sorry that you're suffering like this. I can understand why you're so frustrated. :-(
    Osteoarthritis & DDD.
  • EMS GuyEEMS Guy Posts: 926
    edited 12/14/2014 - 5:48 AM
    Your medical knowledge is a double edge sword. On one hand, you know what's going on and what's been found to work on others. On the other hand, your doctor may be thinking that because you know your medication and have done some research that you may be trying to plus up on stronger meds.

    I've been in the medical field a long time but one thing I do when I see my PM is tell them what's going on with my pain and let them make suggestions for treatment. I may think I know what's best for me, but on more than one occasion, they have gone a different route than I expected. I'm actually good with that. They practice PM for a living. They see MUCH more than I ever care to feel or pretend to know about the nervous system. I may not agree sometimes with something they say, but typically after further review, it's because I may not have done such a good job explaining what's going on with me.

    Knowledge about what's out there and what might help is great to have. But, don't forget to see their side of things as well. Our society has done true pain sufferer's no favors at all! It has made doctor's and their staff practice on a very thin line (along with health insurance). You may want to look at alternative therapies to see if it helps. Massage, aqua and some Eastern alternative medicine has been found to help quite a bit. Just keep an open mind while moving forward.

    Best of luck!
    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
  • or your primary doctor. If you are, why have you not consulted with a board certified spine surgeon , first, for a proper diagnosis and examination of all of the areas of your spine, and secondly for a treatment plan. Seeing a surgeon is not always about having surgery, although it may be that something turns up that could be repaired surgically, eliminating the need for pain medications.
    If you are showing signs of nerve involvement, then relieving the compression or impingement would be a fix to the problem, instead of masking the symptoms. There are also risks associated with trying to avoid surgery, when there are signs of nerve involvement that can lead to more problems down the road. o
    Doctors, no matter who they are or what their specialties are, are looking for evidence of the problem, before they will be willing to go to the opiate route, and then only when the other options have failed. Many doctors are starting to insist that if there is a structural issue that can be repaired, that that route be taken , rather than mask the symptoms with opiates.

    http://www.spine-health.com/forum/pain/chronic-pain/chronic-pain-treatment-step-step
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