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Just When I Thought The Specialists Couldn't Get Any Worse...

dharvellddharvell Posts: 98
edited 06/11/2012 - 8:27 AM in Neck Pain: Cervical
For those who aren't familiar with my story, I've been to 3 different specialists - 2 that have sent me out of their office because, according to them, I am "too young" to be having the problems that the MRI says that I have (explain THAT one...). The 3rd specialist, a NS, showed promise on the first visit. The NS actually mentioned surgery as an option!

Today was my follow-up visit. It was a disaster.

It started with me driving 2 hours (one way) to even GET to the appointment, as the city this doctor practices in is half-way across the state from where I live. When I arrived, I found out that, even though the MRI we were going to discuss was taken more than 1 1/2 months ago, he didn't bother getting the disc containing the MRI as we agreed he would do in our previous appointment. He, instead, based the appointment on the report. A report that seems to contain different information, depending on who reads it.

The person who read me the report, over the phone, said that the MRI shows that the arthritis in the C5-C7 region has notable change between March 2008 and December 2008 (the date the new MRI was taken). According to today's visit, the NS said that there is absolutely no change. Which is it???

To top the day off, the NS decided that he would not do surgery (because I AM TOO YOUNG!!!), but rather, I should do physical therapy. Something that I attempted to explain to him that I tried before with horrible results. PT actually aggravates the problem. However, he would not listen.

I also attempted to explain changes in symptoms and NEW symptoms to the NS, but he didn't appear to have time to listen to them. Never mind the fact that I seem to be losing the use of my arms at least 5 or 6 times a day. Never mind the fact that I wake up in the middle of the night with absolutely no idea where my legs are until I actually FEEL my legs with my hands. Never mind the fact that I get terrible headaches on a daily basis, now, with the root of the headache at the neck.

I have officially exhausted all of my options that are available to me in the state of Michigan.

I've attempted to work with the symptoms I have, but failed. It seems that after even 90 minutes of work, my body rebels. Because of this, I've been unemployed for most of 1 1/2 years. I am about to lose my house over my health. And my doctors won't even give me an ear, because I am "too young" to have these problems.

Anybody know if I have a legal case against these doctors? I am at the end of my rope...

... sorry to vent...

+dharvell
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13

Comments

  • This is so awful. I feel bad reading about your experiences. Can I ask, are you in your 20's or 30's? I was in my early thirties when I had my first back surgery. I believe that if there is a problem, that it should be addressed. If the pain is impeding on your quality of life, something should be done, or you should be referred to a pain specialist where it can be treated aggressively. I have read so many stories here about people being refused treatment just because of their age and it's so unfair. Is there a possibility that you can see another neurosurgeon that isn't so far away? I'm sorry you drove all that way to have your time wasted. I know something must be done for you.
  • MEYDEY321 - First, thanks for lending an ear (or an eye, in this case?). I have actually seen a NS and a Neurologist that practice in the same town that I live in (or near it). Both turned me away based on my age. The only other NS in the state that would take my insurance was the one that I saw, just today. A total bust.

    I am 34. The problems started at age 30. It started as intense neck pain (I couldn't turn my head an inch either direction). After X-rays and MRIs, it was determined that I have DDD in the C5-C7 along with OA, stenosis, bone spurs, and spondylosis (spelling?). Over the past 2 years, I've started noticing lower back pain with some resulting side effects noticed in the legs (numbness, loss of sensation, etc). My doctors have flat out refused to hear about my lower back problems, as the want to "work on the neck, first". But yet, they DON'T work on my neck, because of my age. It's like a bad dream I can't wake up from.
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  • I hope you can find someone who will listen to you. I have read that others found help at teaching hospitals, is there one in your area?
    I have been told that I am too young at 41 for the lumbar problems and that my ortho did not want to do surgery. But I have done all the other options and now we are looking at surgery.
    I had cervical C5/6 ACDF last March. With a good outcome. I hope you keep looking for the doctor that is going to help you, dont give up, the right person is out there.
    Keep us updated.
    Take Care.
  • POOLLADY - The nearest teaching hospital is U of M in Ann Arbor. I was supposed to go there, but was unable to, due to insurance limitations. The NS I saw today was the "plan B", since I was unable to go to the U of M hospital.

    I have an appointment with my PCP, tomorrow to lay it all on the line, for him. Basically, it's going to be a meeting where I tell him to do something, or I am replacing my entire medical care team with one who cares to do the job. No more playing! Time for business!
  • IMO you should be counting your blessings that some surgeon hasn't jumped at the chance to operate.

    Im aware that I'll win no popularity contests here,but that isn't my purpose so...to answer your question though.I don't think you would have a case against any of these Drs for not wanting to operate at this point.The Drs know that your pain is going to get worse with time,and that you are likely to need more surgery later in life if you start now.

    DDD,bone spurs,and even bulging discs are not uncommon at all,and in and of themselves are not a reason to operate.I have all of that and more,and have done extensive research to be sure that I was making the right decision in NOT having surgery.

    When you go to these Drs are you going in with the expectation of hearing surgery as your only answer? If so,that might be why you are feeling that it can't get any worse.There are other conservative treatments to discuss with the Dr besides PT (if that is too painful).

    I do understand frustration,and pain...but getting frustrated with Drs generally won't get you the help that you desire.On another note-you should take in the CD of your MRI and all other films that you can gather for your next appt.,it shows them that you are being responsible and proactive on your own behalf-besides,you saw what happened when you left it up to them.

    Do you have a Dr that you see on a regular basis that can treat you without surgery?
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  • At the time I started my first post there was only your post there...so I missed some things as I was posting.Oftentimes I start posting and get delayed with a phone call or something.This time I missed a LOT.Sorry bout that.
  • I agree that increasing pain, alone, may not be reason to seek surgery. But, as I stated above, I am slowly losing functionality in my arms and legs as a result of these issues. If THAT isn't reason to seek surgery, then I don't know what is.

    My doctor has been fumbling through almost every "conservative" treatment in the book. They either are ineffective or make matters worse.

    What frustrates me is that they aren't LISTENING to what I tell them. You know... the "I'm the professional, here" attitude.

    It doesn't matter to me how many years they went to school to study their field, or how many years they have practiced. When they stop listening to the patient is when it's time to move on.

    If I don't get frustrated and jump down their throats, sideways, I will never get heard. And that is unacceptable.
  • ROBIN - Don't worry about it. I have satellite Internet (supposed to be faster than dial-up, but not really). I end up missing a lot, even though I'm always connected! heh heh
  • Sorry to hear your docs are being less than professional. Been there myself. I started pursuing my pain issue at 21. The docs were comfortable with all the conservative treatments, PT, chiro, etc. but didn't want to consider surgery. I was too young, the pain must all be in my head. Pain never went away despite 6+ PT attempts, 5+ chiropractors, etc.
    Unfortunately, docs aren't required to treat anyone. i don't think you could pursue anything legally. any chance that your primary care has "blacklisted" you so to speak?
    I got better results when I researched and found my own docs instead of leaning on my primary care. although sounds like your options are limited in MI, sorry bout that.
    I agree with Robin, I keep a copy of all my xray, ctscans, mri, bone scan films and reports. I carry them all when going to a new doc or all surgeon appts. it's come in handy many times.
    Curious, do they do discograms in the C5-C7 section? If so, if it tested positive, you would have more concrete evidence of pain that is more credible than your MRI's. Just a thought.
    Good luck. Don't give up. You are your own best advocate. It might take some time to find the right doc.
  • CT HIKER - I really should have known better to trust that doctor I saw, today, to follow through. I usually carry a "trust no one" motto, but for some reason, I totally expected this doctor to follow through. The agreement was that he would order the MRIs and have the films (or disc) and the report sent directly to his desk, since he is so far away. That way, he could review them before I came back for the follow-up. Sadly, it didn't go that way.

    As for the discograms, I'm not sure. I've never even heard of this, until today. I might have to do a little research on the topic and see if it's something to recommend to my doctor.

    The pain has been FAIRLY well controlled using medications, except for the increasing headaches I'm getting. What is beginning to bother me are the relatively new symptoms I'm getting (the twitching, the sudden jerking motion when I feel like I have a hot, metal blade being shoved into my spine, and the loss of sensation in the extremities, among other symptoms). It's just really irritating that, just as you experienced, they believe that just because you're young, there is no way the problem can exist... even when you have radiological proof that THEY diagnosed. It's just mind boggling. I guess one just needs a medical degree to understand that logic... ;)
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