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Angry and Frustrated

misterkatamarimmisterkatamari Posts: 51
edited 06/11/2012 - 8:50 AM in Lower Back Pain

Well I waited almost a month and I finally got to my appointment with a neurosurgeon. Drove an hour and a half to get there, felt like crap the whole way, and had to have other people drive me. All this to hear the same old lines and get the same lackluster treatment.

My lower back pain has been severe and debilitating for about two months now. I've lost my job and I've pulled out of Spring semester classes at my school. If I was on my own I'd be screwed, but I am lucky that I still live with my father who can support me. I can hardly do anything on my own now and the pain medications I am on take only the very edge off.

My primary doctor said there was nothing he could do as he wasn't specialized in this area, and so he sent me to a neurosurgeon. The neurosurgeon then proceeded to act like my original doctor was stupid for his recommendation and then proceeded to tell me things I already knew. I told him my thigh and groin was numb and he told me I definetly had nerve dysfunction...but then also stated that I shouldn't put faith in an MRI. The whole reason I went to this doctor was to more easily get an MRI or test to see what changes if any have taken place in my spine.

When I mentioned the report my doctor read to me about degeneration of the discs in my lower back and bulging that had gotten worse in 2007, this neurosurgeon acted like the doctor was stupid and that MRIs are unreliable and often give incorrect reports. It also deeply angered me that he stated that I was 'too young' and so the abnormalities on the MRI were unlikely. He said that MRIs can show false positives on people with healthy backs, and my point is--I didn't say this--but that I obviously DO NOT have a healthy back. I am in severe PAIN. So obviously something is wrong, and if I have nerve 'dysfunction' why wouldn't he want a test to see what is up.

So instead he wants me to come back and have an EMG or something like that, where they poke you with needles and shock to test your nerve function in extremities. Which I think sounds sort of redundant. He just came off as very dismissive of me and sort of cocky.

I'm so tired of being told I am young, and therefore somehow that means I can't in any way have this problem. I obviously have the pain so why run around in circles instead of trying to figure out WHY I have this pain. This doctor didn't even mention the medication I am on, and if I should keep taking it or if I could try something else. Do they not understand that my entire LIFE is on hold right now? That I am in pain all the time? I'm so done with being afraid of whining, and I am so passed feeling bad about this. Now I'm just angry and depressed.

I made a doctor's appointment with my primary doctor for the 1st. I guess I am just supposed to sit around and wait for all this. I'm glad everyone just assumes I have all the time in the world...


  • Nothing worse than having a doctor not validate your pain. Some don't like it when a patient suggests a test be done such as an MRI. My rhueumatologist is this way. In order for me to communicate with him, I have to word my requests in a different way so that it seems he was the one to come up with the idea.

    I certainly empathize with you. I know how exhausting it is to be in constant pain, wait for a doctor's visit, get there and be so disappointed. I would suggest finding another spine specialist if your next visit doesn't go well.

    Best wishes,

  • Thank you Marianne.

    The thing is, I didn't even 'suggest' an MRI. My doctor did. My insurance declined it so my doctor sent me to a specialist because he thought it would be easier for the specialist to get one.

    Plus the neurosurgeon read the doctor's name that I had seen before and said 'oh you saw a nurse practitioner' like he was talking the guy down or that it somehow meant that the referral was stupid.

    It wasn't even that the doctor didn't validate something, it is that he just simply seemed disinterested and dismissive. I have to deal with this every day and the most he can tell me is I have some kind of nerve dysfunction and that I shouldn't count on an MRI to tell me anything. Well I certainly can't count on one if I never get one!!

  • I can relate exactly to what you are going through. I went from Dr to specialist for over 2 years. My suggestion to you is to go to a Spine Center and see a Orthapedic surgeon. I had mRIs that didnt show anything and finally had a discogram that showed 3 torn discs.
    Dont get frustrated. I was on high doses of narcotics for the pain. I kept going till I got some answers.
    I had a Dr that sounded exacatly like your neuro. He asked me why I was there, that there was nothing to operate on...I was so mad..
    Try to find a Spine Center in a larger city, and see if they can find your problem. Good Luck! PM me if you want any names of where I went and finally got help.
  • That nerve test is what led my doctor to my spine as the source of the pain and weakness in my leg - I never had any really bad back pain so we were looking at other things as the cause of my neuropathy - the EMG led the neurologist right to the nerves that were being impinged in spine.
  • Well that's good.

    I'll pass it on to my general doctor and see what he says about it. I'm going toe keep my appointment, I just wish the neuro wasn't so weird. lol!

    Thanks everyone. I hope I can figure this out...
  • :DI'm soooo sorry to hear of your experience. The guy sounds like an idiot. No one is too young to have back problems. The 16-year-old son of one of the people Board has back problems, and a friend of a friend of mine has a 14-year-old granddaughter who recently underwent a fusion due to scoliosis accompanied by pain. If I was in your shoes I'd find another NS. Best wishes and try to keep your chin up; each and every one of us can relate to what you're going through. Love, Essmoe
  • The i6-year-old son of one of the people ON THIS Board (My fingers were faster than my brain).
  • Thanks Essmoe.

    I would LOVE my back problems to just be muscular pain caused by the imbalance of my scoliosis, and I would love to be told that I can just exercise that pain away. The fact is, however, that I have been told that already and I've done everything I've been told to do...and I've only gotten worse. So then I finally have a doctor read my health chart and it feels like I might get some help, only to have every other doctor act like the report is stupid because I am 'too young'.

    Plus, I don't understand why they think I am too young to begin with. They act like seeing DDD and bulging is common on MRIs of 'healthy' people, but I wonder just how many of those people were 18-22. I doubt there's very many. I just feel like I'm getting the run around. Ugh. lol
  • If you read my sig lines ( below ) my 28 yr old daughter could write almost the same sig line ( minus the knee ). She has been like this for 5 yrs now - so "too young" I think not :(

    She had DDD, severe arthritis, herniations, bone spurs, etc etc...
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • Thanks Ms.,

    So sorry to hear about you and your daughter. I hope you both get some good care. :)
  • Isn't it awful to be dismissed by a dr. like that, when you've placed so much hope in getting that appointment. I am waiting to see an orthopedic surgeon myself and my own doctor has been useless. She even told me that the specialist won't be able to do anything anyway. I avoid even going in to see her because she hates to write me a prescription for anything but has no other suggestions for treatment. Her assistant actually told me that after one of my appointments she threw her hands in the air and stated 'I don't know what to do with this woman'... what kind of doctor is that? I had to call and ask her to give me a referral to the pain management clinic - she couldn't even come up with that on her own. I hope my surgeon appointment goes better than yours did but I have little faith in the medical profession right now. I hope you are able to find help and get the treatment you need. Age should not be a factor and 'false positive' results should still be looked into, what if its not false; you can't just assume that or what's the point of doing the test in the first place. Best of luck to you.
  • Thanks, Pain.

    I completely agree. Just because it COULD be a false result, I see no reason to completely disregard it. I'm still keeping my appointment with the doctor, and doing the test he has scheduled for me. My hopes are low, so if he actually turns out to be understanding perhaps it'll be to my pleasant surprise.

    Your doctor sounds like an awful match for you. If she has no option available to you besides medication, then she certainly can't groan when you need that medication filled! Do you have no other doctors that you can see? Really hope so, or that you get good treatment. :)

  • Unfortunately I live in an area where there is a shortage of doctors. I have my name on a list for a new one but it could take years. My hope is that the surgeon or pain management clinic will be able to help me somehow. I am also looking into seeing a naturopath or homeopath physician... trying to expand my options and hopefully hit on someone/something that will help.

    Tonight I can't sit up for more than 10 minutes and even that is painful. I have already taken 100 mg Lyrica and a Tylenol 3 and I'm lying on a heating pad. Hoping to be able to get up and visit the neighbors across the hall soon... even for 1/2 hr would be nice.
  • So sorry for your pain and the difficulty in finding some good doctors. My area has few also, and my insurance limits me to doctors within my state even though I live close to other states and cities that have better doctors.

    I've been mostly reclining since all this began. Sitting up hurts, especially sitting up straight like if one had good posture. Lying down isn't much better, so I get most of the relief from being in my recliner. lol!
  • As preese said, don't dismiss the EMG. An EMG can actually tell the doc more specifically where your problem is and identify it whereas a standard MRI has the chance of missing it. An EMG http://www.spine-health.com/treatment/diagnostic-tests/electromyography-emg is a very valuable diagnostic tool. If you read through this article and some of the related ones, you might get a better idea of what it's all about.

    I have gone to some first time appointments with the hopes and expectation of leaving there with a better idea of what is wrong and a solid treatment plan in hand, only to be bitterly disappointed. It wasn't that the doc didn't do his job and try to figure things out for me, it was just that reality and expectations didn't cross on the same playing field that day. What did happen is the doc began the process which eventually lead to a better understanding and a solid treatment plan in hand. I still felt like someone had knocked all the wind out of my sails that first day, but I was glad to see things were actually coming together by the very next appointment.

  • C is a zillion percent correct. I've had EMG's which then later validated the need for an MRI, and visa-versa. If done correctly, the EMG can pretty well zero in on where the problem is coming from.

    Also keep in mind, we don't get along with "all" doctors, so maybe getting another Neurologist, or other spine specialist might be a way to go as well. You also might want to keep a "pain log", so you can show your doctor what your going through, what makes the pain worse, when is it worse, what triggers more pain etc. Please keep us posted. Good luck, and don't give up!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Thanks everyone.

    I'm definitely keeping my appointment to get the EMG on the 3rd. I actually found the article that you linked to, Haglandc, and read it before I logged on here today. I think the biggest problem was that he, as a doctor, could have probably explained to me better what an EMG was. He literally told me 'it's a test where we stick you with some needles and shock you a bit'. Doesn't really tell me a whole lot about it.

    Luckily, the EMG is in his office so no need for me to go somewhere else to get it done. So yeah, I'm sticking with him now--especially after reading what the whole 'sticking you with needles and shocking you' thing actually can do.

    With that said, I still feel like the neurosurgeon has a sort of weird attitude. I'm not sure whether he thinks *I* have one, but I have no idea why he would think that. I never even suggested anything to him or said anything that could have come across as being ignorant or pushy. But some people are just a certain way, and it doesn't mean that he can't actually end up helping me in the end.

    Regardless, I made an appointment with my general doctor for the day before I see the neurosurgeon. I haven't seen him in awhile so I'm going to give him the run down and ask for his opinion. Hopefully I can put together all this.

    Thanks again everyone!
  • I started with my chronic pain issues when I was in my early 20s, and I am now 51 (OMG...how did that happen?!). I have come across several doctors who reacted as your specialist did, and even had a NS who told me to "stretch every day, go back to work and just forget about the pain". Gee....if only I'd known it could be that easy! (Insert sarcasm!)

    I can tell you are driven, so keep your chin up and stay that way. It could be a long road, but go with the tests that are offered and if you aren't satisfied, then see if you can get another opinion.

    Do you have anyone who could attend appointments with you? I found that very helpful in many ways. Just a thought.

    Take care, and good luck. Hopefully you start making some progress soon.

  • Thanks so much Tracy.

    I was hesitant to take someone in to my appointments before, but I think I am going to start doing that. I'm not sure if I need to sign something beforehand, but I'll ask.

    The main thing for me is that I need to figure out what is wrong with me, what my health will be like in the future, and what I can do to treat it. I can't plan ahead for anything unless I have some idea of what to expect.
  • Make sure you make a list of your questions and concerns. Start one now, and keep adding to it; you probably won't get answers to everything, but if there are specific things you want to know that the doc doesn't address, just ask him. Hopefully your specialist will be open to you bringing someone else in with you; I just found that it helped me remember answers that were given to me, and sometimes my husband or friend would think of something to ask that I had NOT thought of. In some cases, too, the doctor is a little better behaved....

    I know how frustrating it is to have to wait endlessly for all this to happen, and I think most of us here can relate to that. I saw four or five different rheumatologists before I finally found one who actually took the time to consider the big picture and everything that had gone on with me for a period of almost 20 years!

    I saw one neurosurgeon who walked into the office, looked at me, looked at my MRI, said "there's nothing I can do; you have too many issues" and walked out of the office. (All this after my husband took a day off work, we drove four hours to get there, my appointment was cancelled and rescheduled for the next day, so we had to get a hotel for the night, and hubby had to take another day off.)

    Try to be patient - I know it's easier said than done, but eventually you will get some answers.


  • I had problems with anger in the past, sometimes I feel like someone hitting the head of a disrespectful remark. It feels so good to let go of the accumulated anger, launching a massive nuclear attack. Of course, the consequences would be enormous, I lose my job, and God help me in this state of weakness if I could find the will to find another.
  • Yeah, I know what you mean Danial.

    I never really lash out at other people, I don't have that kind of personality. Instead it all gets filed away to bother me daily. I've been trying to talk and be open with my frustration, though, so it doesn't bother me quite as much. :P
  • I don't know if I should make a different thread for this, but I'm supposed to get this EMG on the 3rd. For those of you who've had one, are the results like read immediately or is it like other tests that they have someone else read it and then give to your doctor.

  • As soon as the test ended, the doctor told me I had a pinched nerve, but with another doctor the timing could be different. You could call his/her office beforehand and ask. I did that two weeks before an appointment I had for an eye disease, since I was anxious as to whether I'd have to wait until my next appointment to find out what would need to be done. Best wishes on the 3rd!
  • Thanks Essmoe.

    If he can't tell me when I go on the 3rd immediately after the test, I guess I'll just wait. lol! It's just nice sometimes to know what to expect.
  • My neurologist actually conducted the final part of the test himself and so he told me immediately that I had pinched nerves in my back causing my leg problems and that I needed to see a neurosurgeon.

    I will note that this was my SECOND neurologist because I had asked for a new referral from my PCP because the first neurologist just basically told me I had neuropathy and to live with it - while the pain and weakness kept getting worse and worse.

    Good luck with the EMG - it is uncomfortable but not really painful.

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