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Need advice and support

kraykkray Posts: 4
edited 06/11/2012 - 8:46 AM in Neck Pain: Cervical
Hello, I am new here and sorry this is so long it is just my story and would greatly appreciate any advice, support anything as I feel confused and lost. This journey began about 3yrs ago when I noticed pain along with numbness and tingling in my arms my pcp sd he would recommend a MRI at this time I had no insurance so I left it alone. Then about 1 yr later I got insurance and seen a dr. who basically SD I was crazy and sent me to a psychiatrist after a mo. And no progress I went back to him and he sd if I do not agree with his diagnoses go to the ER. I did just that (dr. then told me I was an unruly patient and he could no longer treat me) the ER referred me to an orthopedic specialist who ordered my first MRI but this specialist did not deal with spine so he wld have the MRI read and refer me to another ortho surgeon whose main focus is spine when he saw the results they were normal and did not want to refer me on I begged him to and he did thank goodness. Now this is where I get confused. The spine specialist believed I had issues.. What he did not say he put me on pain meds and muscle relaxers and PT all of which provided some relief just not permanent. So next came the cervical injections which helped the first day afterward but then on the 2nd day was so painful I completed 3 of these treatments and nothing it has been 8 mos. At this point with this dr. and I feel there is no progress finally he orders another MRI and I think the results he found shocked us both there is no curve in my cervical spine so he orders a disco gram and refers me to PM dr. finally I feel my pain is validated. The disco gram was the most painful thing he tested c3-c7 and it was horrific. Normally they just give valium but I was in so much pain he gave me morphine to help. Dr. sd it was bad wanted to know what I done to cause all this damage? Nothing that’s what gets me I’m 32 otherwise healthy 2 kids been in a few fender benders back in the day but nothing major? I am certain they will recommend surgery just not sure what to do I am still young with 2 kids and in the middle of school. Any advice or support would be great.



  • HI Kray,

    First let me say welcome to spine-health. Have a look around and you will find many whom have had or are going through what you are. While none of us here are doctors we have lots of experience between us to go around. We all can certainly appreciate the pain your in and what your going through.

    Have they discussed doing a emg study with you at this point and time. It is small needles that they place in the arm and check to see how the nerves are responding. Some doctors use them and some don't. They are not the tell all of diagnoses but they are just another step in the diagnoses is all. Not having a curve in your spine is somewhat common in cervical spine issues. Do you know what the results where they found in the new MRI? If you don't have copies of the reports you can ask the facility that did the test for copies of the report. They are just sometimes helpful so you understand as well as to what is going on.

    On your next appointment I would have a list of questions ready to discuss with the surgeon. I would make one list as if you were having surgery and one list as if you were not having surgery. If you look in the FAQ section at the top of the page about 3/4's of the way down you will see 38 questions to ask a spine surgeon.

    To help ease your mind, not that I am saying you are having surgery, but I would suspect they are doing a ACDF if surgery is on the table. ACDF=anterior cervical discectomy and fusion. If that is the route you will want to talk to them about what type of bone grafting material they will be using and what type of hardware will be used. Also the number of levels for fusion. Fusion basically means they will take out the disc and place a bone graft in and let the bones grow together in that area. Of course no knowing your individual situation I can't say if that is even on the table. You might also want to check out the video section here as there is animated video's of different types of cervical spine surgeries. So nothing gory to watch, but it also may help you learn more about the spine. I might also suggest that you look at a dermatone map and see if any of those pain patterns sound familiar to you.

    Keep in mind we are always here and understand how you feel, so don't be afraid to ask any questions. We will do our best to answer them, but also check out the articles here that are doctor written and peer reviewed. While some of them have older dates on them the information is just as good as the day they were written.

    I myself have been through the cervical fusion process so am very familiar with it. If I can ever be of any help don't hesitate to pm me. Once again welcome to spine health and keep us posted as your progress with your treatments and options.
  • Kray,

    Welcome to Spine Health!!! I too have 'no curve' (loss of cervical lordosis). The loading on your cervical spine is going to be different as it was 'designed' to have that curve. Some folks have straight necks and never have problems, others have symptoms - we are all wired differently!! :)

    Please let us know what the surgeon tells you. Of course if he/she recommends surgery, there is NO harm in seeking a second opinion. Take care!!! :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I guess that is also why i am confused my first mri and i did have a emg showed nothing. The OS did some exrays at first then ordered all the treatment i have done the second mri i do not have the results of (i didnt think to ask for them) he just said he believes i am in pain he noticed how straight my neck was and also stated that c4,5,6 looked bad and ordered the discogram.
    So why is it the first mri and emg showed everything normal?
  • Who knows why? Get used to that answer as you deal with your spine. Sad but true.

    I would call the office and get a copy of that second MRI and the discogram. You are entitled to them and it would be good for you to read them yourself. I have had MRIs where the doctor didn't tell me everything that was on the report.

    Tamtam is right about making notes. You have enough history that you should go back and write down everything you can remember from the first doctor up until now. It get's confusing when you see so many doctors and build a history. Maybe make a notebook with all of your doctors notes and test results. That's my project for the next month.

    Another thought is to have the first MRI re-read. I did this and it answered alot of questions.

    You should also keep a pain log. Doctors should only be fixing what is causing pain or something that might cause serious future problems. Any doctor who wants to do other areas is just surgery happy. SO the pain log would help you confirm what the surgeon may want to operate on.

    I'm getting the feeling from your posts that you feel confused and rushed by the doctors. Sometimes it helps to take a step back and/or a mini-vacation from doctors and treatments. This lets you settle your thoughts and look at the whole picture.
  • Thanks so much for the comments and Suggestions.

    Kris i believe it is true that im confused because i feel it is all rushed mayb i should take a step back and let it all sink in. I feel like i went from being told it was all in my head which i started to believe because dr's have always said i was to young. To all of a sudden this is your problem and surgery is the answer and i am really scared of surgery.

    I have an appt 8/17 with ortho surgeon i will post results and i will ask for a copy of mri and discogram reports
  • Well I went to see my os and recieved the results of my discogram.

    The diagnoses: Herniated nucleus pulposus
    He stated that even though c2-3 were painful it was rare for them to be the culprit of my pain. c4-6 were what he believed to be the problem.

    The solution: surgery fuse the two levels.
    My problem is that im not sure what to do he stated that he could not make me 100% he could help ease the pain and take less medication. which sounds wonderful to me. Im just hesitant to jump into surgery. Im currently in school to become an rn im wondering what this surgery or lack of may do to my future??

    Any advice will be greatly appreciated..
  • Kray,

    Howdy!! I will probably having to decide in the near future concerning my C2/3 level. I am very uncomfy about it as well, and too now having pain from it, headaches etc., on top of that, revision on my present mess plus adding C7/8 (T1). C2/3 short of trauma is one of the very rare levels to do. That is part of the scary to me - but there have been others on here that have had that level done.

    The only thing I can tell you is you will have to start weighing the pros and cons as to whether to have surgery. Pain, nerve issues, lifestyle, success rate, trust of your surgeon, recovery etc. If you need surgery, you will know when you need it. I wish I could have given more precise advice, but surgery such as ours are difficult decisions to make. Please keep us posted. *HUG*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I'm glad he didn't say he'd fix you right up, I always shiver when people say their doctors say that! No surgery has a 100% success rate!

    No advice for you, just commiseration. Although I know the day mine happened, it doesn't actually make any of it any easier. Dumb old spine. :p
  • Well, first off I want to say that I have never gone to a doctor for my chronic pain I have had. Mainly, it was lower back pain, but I had neck pain as well.

    I don't believe I have suffered as much as you, and I have gotten all my neck pain to disappear. It seems to me like you've done so much running around and not finding a clear answer.... so I wanted to throw out to you what got rid of my neck pain. I have no health insurance so I have to clue as to how my spine or neck looked, all I know is I would turn my head and have sharp pains and could not move until they subsided. Okay.

    Please, don't think I'm crazy but before surgery please put some thought into "trigger points." They are basically muscle knots that once massaged out, (which is painful, tedious, and can take days to weeks of work) allow your muscles to move properly and does not constrain them. The website "xxx" does a great job of easily giving suggestions and a first hand account of how getting rid of these knots can get rid of pain. Read a little. I hate the thought of surgery as well... I hope you can avoid it. I would send a message to the woman who writes the blog. I'm sure she can give you better suggestions as to what you can do to maybe help.

    Massage may sound like a crazy solution ... but trigger points could be the cause. I don't know... but good luck! Worth a try in my mind. oxoxox

    Post Edited, Links to a`site selling products is not permitted.

    Dave, Spine-Health Authority 08/18/10
  • Spam above??? Sounds fishy to me...

    Sorry you have been through so much. I was 17 when this whole journey began and at the time I was told it was in my head and I was too young. Boy were they wrong!!! It sounds like you are at least getting down to the nitty gritty. We can't tell you whether or not to have surgery but we can give suggestions on ways to help make your decision. Surgery is definately not for everyone or every situation. I've had multiple lumbar surgeries and I wouldn't change doing that. Others have had surgery and regretted it. Make a pros and cons list it might help sort out your thoughts. Also ask your doctor, "What will happen if I don't have surgery?". One thing to consider is whether or not it could cause permanent damage if you don't do the surgery or wait awhile to do it. My doc did an EMG test to see if I would be worse off in waiting to be fused. Consider your quality of life can you go on like you are now?? That was always deciding factor for me. I know it's a hard decision but like someone said you'll figure out if it's right for you or not. I wish you the best in your search, keep us posted!!
  • no I promise! Not spam, it's just one thing that helped me so when Kray got such the run around, I felt compelled to post. I don't have near the same medical history... but I feel people have surgery when they really don't have to. For many things!

    It's just that blog is what really helped me and helped relieve me of so much pain. I'm a believer in massage therapy... most people prob think it's crazy. It's just someone else to validate how it helped. I didn't tell anyone to buy anything! I don't understand how you'd think it's spam.

    I'm new here... so maybe I don't know proper forum etiquette?

    ...just trying to be helpful and honest. But thanks for ruining my post.
  • salunzo said:
    no I promise! Not spam, it's just one thing that helped me so when Kray got such the run around, I felt compelled to post. I don't have near the same medical history... but I feel people have surgery when they really don't have to. For many things!

    ...just trying to be helpful and honest. But thanks for ruining my post.

    I highly doubt the intent was to ruin your post. On here most folks don't have just tight or knotted muscles, we have ruptured, herniated disks, torn disks, nerve damage etc., AND have been to many, many doctors (you stated you haven't even been to a doctor for your pain?). I am sure you mean well, but your posts (4 now) are all pushing not only the 'trigger point' techniques, but posting a website. On here, we see that as a SPAM alert.

    We're all happy that you have no physical issues that can't be treated with massage and such, that is great. :) Most of us, do not have the luxury, have been in chronic pain for years, and therefore will stay in chronic pain - due to - spine alignments, disk issues, spasms (triggers could help here?), scoliosis etc. Sorry, but that is another reason people are probably looking at the posts as spam. I hope you can forever stay pain free. Take care.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Sorry for sidetracking and hijacking your thread. I hope you're feeling better tonight. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Sorry normally when we see things like that it's spam, just sounded fishy to me....didn't mean to offend you.
  • okay, I got it. Thanks.

    Good luck kray.
  • The site that you are pushing has a nice blog. Unfortunately, they are also selling products on their site. That is a forum violation to publish a link to another site advertising and selling products. There is nothing wrong posting about your success and relaying the information privately through PM's. You need to edit your profile to enable the ability to PM.

  • Hi Kray,

    While I am sure that is not the news that you wanted to hear yesterday, at least you have answers. Your doctor is in the same belief as mine with the C2-c3 region. I as well have that area herniated but my surgeon even in this last go around felt that doing surgery in that area the risk out weighted the benefits of the surgery. They were already going in to add a level into my fusion and fix a hardware issue, but he still didn't feel comfortable fusing that level, not because of his inability to do it. But rather it was not what was causing most of my issues. Of course they can never say for sure that it is not a trouble maker, so that is why he wouldn't add it in at a 100%. When we look at the spine more is not always better as far as having surgery. You have to accept the fact they are going to fuse and change the way the spine functions so the more levels fused the more range of motion you loose. While it doesn't seem like a big deal it is, as you don't realize how much you turn your head.

    As far as doing surgery and what will happen is anyone's guess. There have been members come here do three level fusions and are off and out living life and doing great. Then of course there is a one level fusion person whom is still having issues. My surgeon in particular will give me odds on what he can do. The difference is I have already suffered permanent nerve damage and we are well over 4 years with it so that is not likely to change at this point and time. But then again I like to think none of us know what the future is going to hold. So while i understand you want to continue your dreams and education don't let this be a hindrance but yet another hurdle in life you need to jump a little higher to get over. There is just noway anyone can give you any guarantee as to what is going to be your outcome. You could end up being surprised and all the pain is gone and your on your way. I think you have to have reasonable expectations but also a positive outlook and understand yes you will go through some post operative healing and it can take up to a year to heal from the surgery. During that year as you re adjust to doing things some find it hard and some find it easy. But just know there is ups and downs with the healing. Keep us posted on what you decide to do. Take care.
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