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Black and White

LLLevisLLLLevis Posts: 8
edited 06/11/2012 - 8:00 AM in Chronic Pain
Saw the surgeon yesterday, for the first time after my MRI/X-Rays. He told me he was a black and white doctor and I wasn't a black and white patient. Then told me he couldn't do anything for me.
Now, I have been dealing with DDD for years with sciatica in both legs every now and then. Five months ago I woke up with the back of a bull rider. I haven't had one day without 10+ pain. Yes, I am on pain meds but refuse to let them rule my life.
Surgeon's first statement was "I am a surgeon, what do you want me to do?" "Fix me."
MRI results (that he didn't know I had) are as follows:
1. Right Paracentral disc protrusion at T12-L1 without nerve root compromise
2. L1-L2 degenerative disc disease with a mild broad-based disc bulge not compromising the nerve structures.
3. L1-L2 disc space is narrowed. Disc material is impinging upon the inferior foramina without compromising the exiting nerve root
4. Facet arthrosis at L2-L3, L3-L4 and L4-L5 without canal or foraminal compromise
5. L4-L5 and L2-L3 there are small far left lateral annual tear
6. Mild lumbar dextroscoliosis is present
7. Bilateral renal cysts

Now, I am not a doctor, don't play one online or TV but it looks like something is wrong and the pain is debilitating. I am a Warrior in pink, been to hell and back but this is just too much to handle. If I have to live this way, for the rest of my life, I don't think I can do it and I don't know what to do...
I did call my insurance this am to see if I could get a second opinion and was told there aren't that many Dr's that take Medicare (disability) and that I was probably a risky case. Okay and ???
Thank you for listening or reading. :)
(I do try to see a lighter side on the pages of our lives but it's getting really heavy to carry)

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Comments

  • Almost every dr takes medicare and you dont have to call to get aproved to get another opinion, Unless you ment to say medicaid, Medicaid i am not sure if dr,s will take or not,

    Many times dr,s dont see mri as being bad enough for surgery, thats nothing new,

    Are you at least seeing a pain specialist who can do further testing to find the cause that pain dr might be able to refer you back for surgery if needed if he cant help?
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • No, I meant Medicare, I guess it's because I have very little income I also have a secondary that requires a referral. Worked all my life only to be in the "below poverty" class.
    Thank you for info about the MRI's. I was so blown away by his response to everything it was like I didn't matter. I know most white coats are very busy planning their next "tour de Palms Springs" in a few weeks but I do matter and this pain is very real. Oh to have one wish, that couldn't be used for my benefit, I would wish they walked in my shoes and felt what I felt in one day. I would like a month but I don't want to kill them.
    I will try to refrain myself from spilling my guts in moments of despair but thank you for being there.
  • LLLevis- sorry to hear you're having such a hard time. Doctors can be so frustrating at times, trust me, I know....not only am I a patient, but I'm also a nurse. First off, based on your MRI results, it does say that there is no nerve impingement at most of the levels. (which is good) That's probably what the surgeon was looking at. He didn't see anything that he could "cut" and "fix" therefore, he sorta blew you off. It happens. I'm not a doctor, but I suspect that the majority of your pain is coming from your L5 region where the MRI says you have an annular tear. That means that the outer layer of the disk has a tear in it which can ultimately allow the disk material to spill out. (a herniation) The thing is though, the tear itself can cause a lot of pain because that area is innervated...meaning it has nerves. A lot of these kinds of problems can eventually heal up on their own and the body can reabsorb disk material. Problem is, it could take years and in the meantime, you're in pain.

    I would get a second opinion for sure. Surgeons can be a narcissistic lot and there are some who won't take on what they consider to be the "smaller cases." You might just need a simple laminectomy and maybe he felt like that wasn't worth his time. Anyway, you never know until you speak with someone else.

    Best of luck to you!
  • Thank you so much for your time and kind words. The good thing, if there is one, I have the DVD with my scans on it, so I won't have to do that again. I was so blown away by his casualness (?) and really didn't want to be there. If he would have taken a few mins and said what you just said I wouldn't have been so upset. It's nice to think that there might be hope for a pain free day. I never got that far.

    Again, thank you for your time.
  • LLLevis said:
    Thank you so much for your time and kind words. The good thing, if there is one, I have the DVD with my scans on it, so I won't have to do that again. I was so blown away by his casualness (?) and really didn't want to be there. If he would have taken a few mins and said what you just said I wouldn't have been so upset. It's nice to think that there might be hope for a pain free day. I never got that far.

    Again, thank you for your time.
    I forgot to also tell you that the dextroscoliosis is when you're spine curves to the right. (you may have already googled this) I've got the levo which simply means that mine curves to the left. It can seem like a scary word at first, but seeing that on MRI isn't necessarily a bad thing because muscle spasms can also cause this. When your muscles are really tight from pain, they can literally pull your spine into one direction or another. I think mine probably pulls to the left because that's where the majority of my pain is all the time. That's why doctors don't often even talk about scoliosis on MRI unless it's for sure a pathological thing and not just caused by spasms.
  • Trust me you not the only 1 that run across a dr that while you telling him you ready to pass out from the nerve pain the dr is looking at the screen at the mri talking to himself about how good everything looks on the computer screen,

    While you are ready to take the laptop from him and hit him over the head with it to get his attention, Oops sorry i was having a flashback of my last dr appointment,

    Get a referal to a pain specialist, he might want to do a discogram to check the disc in question see how bad the tear is,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • I just wanted to take a minute to say hi and let you know that you are not alone...something I tell myself every day. I am just starting this journey of MRI's and EMG's and am so lost in pain and frustration most of the time, I can not see the light. I have found a little peace and some giggles on this site and find just knowing that someone understands that pain changes who you are takes a little of the edge off. I have had two epidural injections in 2 weeks, not sure if they are working as I am still on my pain meds..I am a Medical patient (single mom of 2 little ones) always have worked...I am working from home now, from my bed...cant lift my baby and my 7 year old play mama and feels like she is responsible for me. I still don't understand my test results just know I am always in pain. These are my results:

    Grade 1 lytic spondylolistheses at L5-S1

    Grade 1 degenerative spondylolisthesis at L4-L5

    Left paracentral disc bulge at L2-L3 with left foraminal narrowing

    Broad basded disc bulge at L3-L4 with moderate central stenosis and bilateral foraminal narrowing

    Central disc bulge at L4-L5, no significant stenosis

    Bilateral pars defects at L5

    L5-S1 there is a broad based disc bulge with left foraminal narrowing

    Thats not even my thoracic!

    I wish you luck in your journey....keep talking!

    Ellen
    3 level fusion L3-S1 July 23, 2012
  • Ellen, has your doctor not spoken to you regarding your MRI results? If not, I would put a call into him/her and ask for some answers. Based on what I see, I would bet that you ARE a surgical candidate, but again, I'm not a doctor. I can definitely see why you're hurting so much.

    Hope you get some answers soon and some relief!
  • Finally got a smile out of me. My curve is a real one (not a bikini curve) that my PC saw in his office about 3 months ago. Probably how I went from 5'9" to 5'6". Always wanted to be short (that's what tall girls wanted back then) and now that I was loving the "tall girl" 6' in heels, I lost the 3". Probably went around my waist and I just can't see it.

    All of you have been so kind, you have no idea how much and needed your words are. Leaving the surgeon's office yesterday, I am sobbing, my GF pulled the car over and said, crying, "I know you don't want to live like this and I don't blame you. I've never seen someone so brave as you, that goes through so much every day and yet still has the time to make me laugh, lift my spirits and makes me look forward to talking with you cause I never know what is going to come out of your mouth. I am only going to say this once, if I can get the words out. I know how much pain you are in, I see it, I feel it and if you need me to make your final wishes come to life I will. You need to get your ducks in a row, do what you need to do, say what you need to say and I love you enough to help anyway I can." Then I cried more and someone honked their horn and brought us back to the real world. Then there was silence until we got to my place. She helped me out of the car, I can barely walk because of the pain, she got me into the house and I called my insurance caseworker who talked me off the ledge.
    All this is horrible and unnecessary. It makes me angry with my State and all the things they are cutting. Quit worrying about the illegal's coming into AZ and worry more about us. Quit cutting resources, medicine and procedures. Uh, sorry about that, lights my fire.
    Anyway, thank you all again and if someone can tell me how to do my profile, what/how I can do to help others or anything else anyone needs, within reason, I am here :)
  • Looks like we are all going to hang in there and help each other. I am so sorry to hear about not being able to lift your baby. Sounds like you have a real trooper in your other daughter. I can't pick up my coffee cup. Maybe we should start a reality show called "pickups" where we can challenge others to see who can pick up the heaviest things. Start with a thimble and go from there.

    Hang in there and I hope everyone has a peaceful day.

    Skyelan
  • I have yet to have anyone sit down and go through the results with any real explanation. I paid cash for a neurosurgeon friend of family to look at MRI...he said no surgery (yet) do the epidural..that my pain was coming fromt he L3- L4...that the only step was epidural...i will never be his patient, because of my insurance. The neurologist that did the EMG said a lot going on at many different levels most on L5-S1...he doesnt stay with me either so that is all I know. PM doctor(not the best bedside) which is fine, pretty much says come in,lie down, gives me the shot and sends me out...honestly a 10 minute appointment...I have excruciating pain after the procedure..not from the injection sight...in my hips and down leg, bottom of my foot, calf has electrical twitching...seems to lesson up in a few days. I am having a horribly hard time...thank you for responding, I feel like I am going nuts here! I just found out today I do have a follow up coming at the Spine Institute that ordered the EMG....I dont know when but my insurance should authorize today...maybe I will get some more answers then. I think maybe I need to stop being such a "good" patient...and demand some answers...I just want to get back to work and play with my kids...get off these darn meds...I dont want to feel this bad anymore.

    Surgery is a last resort for me. I have 2 little ones...I so wanted the epidurals to be my ticket back to life...maybe.
    3 level fusion L3-S1 July 23, 2012
  • Pretty name...keep cracking jokes! Thanks, Im in tears and laughing at the same time...Pickups..I like it..oh and to put it persepctive...my "baby is a little over 2 and pushing 35-40 pounds...haha...he hasnt missed out on much...he is kind of like Mastiff dog that wants to sit in your lap...have a peaceful day as well.
    3 level fusion L3-S1 July 23, 2012
  • LLLevis said:
    Looks like we are all going to hang in there and help each other. I am so sorry to hear about not being able to lift your baby. Sounds like you have a real trooper in your other daughter. I can't pick up my coffee cup. Maybe we should start a reality show called "pickups" where we can challenge others to see who can pick up the heaviest things. Start with a thimble and go from there.

    Hang in there and I hope everyone has a peaceful day.

    Skyelan
    I would even go one further with the reality show and call it "Gimps" and it would showcase all the damn concessions we have to make just to make it through the day. It could show what happens when we move too fast and get that sudden and intense pain that makes you scream out loud and almost pass out before you can stop it. It could show all the clock watching for when it's time to take pain meds again because the pain always comes back sooner than the next dose of pain relief is due. It could show all the things that we're willing to undergo to get relief. (i.e. heat, cold, massage, acupuncture, injections of every kind in almost every place, numerous pills, pumps, procedures, tubs, tables, TENs, etc) It could show how many pillows that GIMPS keep on their beds to prop up every body part. (I have 8) It could show that we only wear sensible shoes and comfortable clothes. And it could show how we continue to get out of bed every single morning and try to make it through one more day.

    What do y'all think?
  • You can count me in. I could show trying to go to the store, dropping something (always) and looking at the floor to see if I think I can make it down, back up or thinking how bad do I want/need that. They could come in my house that looks like Hansel and Gretel were there by the path through the house of items dropped. If they were bread crumbs, like in the story, my little dogs would eat them but through no fault of my own, they just won't pick up the remote, phone or hairbrush. I could show them my perfect landing skills when falling, tripping over a line or how I can fake being drunk because I can't walk straight. They could see what a planner I am by keeping groceries, not perishables, in the back of my SUV because I can't pick them up to make it into the house. I am still in Girl Scout mode I think, always prepared. Charcoal, lighter fluid, potatoes, six 12 packs of soda, (different brands of course) chips, cookies, pillows and blankets. So if ya ever wanna get lost I am the one to get lost with as long as I am driving. Which I don't do if I have taken meds which of course I have taken. LOL
    But you can count me in !!
    Skyelan :)
  • Skyelan I can SO relate! I hate it when I drop something and I do the same thing....look at it a minute and think "Do I really need to get it?" If the answer is yes, then I do my best to squat using my legs so that I don't have to bend. But then it is difficult to get back up. My daughter has learned to just say "I got it mom" if she happens to be with me when I drop something.

    Oh and the falling...yep been there done that too. In fact, just a month or so ago, I sent a message to my neurosurgeon after yet another fall and asked if my frequent falls was anything to be concerned about.

    But ya know....at least I'm not peeing on myself anymore!! WOOHOO! That was terrible before my first surgery. You don't realize how nice it is to have dry underwear all day until you go through the incontinence thing for awhile.

    Do you ever feel like you have a pager in your shoe? Like your foot is buzzing or something? I get that whenever I walk very far and then it usually just goes numb completely.
  • needing to get something down off a shelf that is above your head. I stand there debating how bad do I want that for a minute or so, then I have to look down at the ground while reaching up, grip the item and yeah I got it ( very proud of myself) then half way to the counter it slips right through my fingers to the floor where the cycle begins again about how bad do I want that.
  • Oh yeah, I have the pager feeling in both of my feet and if I am barefoot I get little zaps with each step. If there is any distance involved I feel like I am being electrocuted and then it goes numb. The thing I am finding now is that I can't get any air when I am either laying down or sitting at an angle. When I have pressure on my lower back, with sitting or even bending, I start coughing and try to get air. The "Cutter's" PA told me yesterday not to worry about it and they wouldn't until I had surgery, guess she wasn't up to the game plan of sending me out the door. Speaking of peeing, LOL, I can't sit on the seat, so I have to do a white knuckle squat and hope for the best. LOL I have been told that if I report that I have fallen the dr will have to report it and they will take my license away, so I just trip, over a hair on the carpet. :)
    You made so much sense with the "cutter" reference. So, do I now look for an ortho doc that works with backs but doesn't cut? I'm not sure where to turn and what do I ask BEFORE I make the appt.
    We all sound like a very interesting group made up of our own kind. :)
    BTW, How do you post your pic?
  • I can relate. LOL I have coffee in a large tuperware type tub above my sink. So, I do the finger reach, try and get it to come forward enough for me to give it one good flick and down it comes. Works great unless I didn't put the stupid lid on tight enough. I laughed so hard I almost p**ed myself as I stood there with coffee all over me and my dogs. They stand there with a "seriously?" look on their face. Oh to have a camera at times. :)
    I wish us all a good night that includes sleep.
    Skyelan :)
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