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i'm in so much pain, now i really could do with some help :(

KayaKKaya Posts: 2
edited 06/11/2012 - 8:54 AM in Neck Pain: Cervical

Hello i'm new here, i've been searching on google to see where i could go for some help,

Just over 3 years ago i had a prolapsed disc at C6/7, after a year i had an operation to help it, after the op, i did feel much better, butabout 8 months later had a bad fall, after this fall i kept going to my GP because of the pqain i was in, my GP's sent me to the hospital 3 times asking them to do an MRI on my neck, each time they refused because i had metal in my neck :/ so i was sent to physio, they wouldn't touch me and they then sent me to the local hospital asking for them to scan me, they still wouldn't. After a year, of keep trying to be scanned, my GP sent me to see an orthopedic doctor, i told him how much pain i was in, and he booked an appointment for an MRI scan, the appointment came through with a qustionaire, i filled it, but rang them because it said on teh form, they will not scan if the patient has any metalwork :( i rang them and begged them to scan me, then told them to ring the hospital where i had my op, they done this, i took a couple of weeks, and then a month or so to actually get me there for the scan...............finally! :)

The results came back, got them about 2 months later :/ anyway, they came back that i have prolapses in C4/5 C5/6 C6/7, with one of them pressing upon the spinal cord, i also have one in teh uper thoric area (forgotten what one) but its sends real bad pains to my shoulder blades, the orthopedic doctor refered me to a neurosurgeon, a couple of months later, i finally got to see one, i was so happy that they had found out why i was in so much pain, so was very excited to see the neurosurgeon, i didn't particulary want anymore surgery, but at least the would be able to point me in the right direction for help,........... nope! they put up a scan picture on the computer and i said straight away, ''that isn't my scan'' they insisted it was, but i was 100% sure it wasn't, then they turned round and told me they can see absolutely nothing wrong with my neck :O waht? even i could see at my local hospital there were problems, i came home, all deflated, so very down, i went to my GP and told them, and they said ''well if the neuro says there is nothing wrong, then there isn't'' :( i told them i didn't want surgery but i also didn't expect it to be ignored neither, i asked for another opinion, and another doctor up the same hospital said the same, absolutely nothing wrong, but i know they were lokking at the wrong scan. the doctor showed me the scan and now i have more proof, my local hospital say they are standing by their decision, where about 4 other professionals all agreed, that i had 4 prolapsed discs, and they made me a copy of the disc, even i, being an untrained eye can see there is problems there :) even the one they operated on, i think that is the one pressing on my cord.

I recebtly asked my GP to refef me to pain managment, and he too was going along with the neuro and not my local hospital :( he said i just have alot of nerve damage.

Why is everyone listening to the neuro's? i've said all along, they were looking at a different scan, but no one will listen, :( now i just don't know what to do :( i'm getting so down over it all, i'm in so much pain :( can anyone please give me advice on what else i can do? anything will be much appreciated, its been 2 very, very long years of being in pain, but what else can i do?

Is there anywhere on the net where i could load a picture of my scan and someone tell me what they think? i think my only option is to go private, but i just can't afford it :(

so please any advice will be great, and thanks for listening :)



  • I'm sorry you have been in pain for so long and can't get anyone to agree on your diagnosis. Where do you live? Can you get another opinion from a neurologist or spine specialist?

    When I had my first MRI done at the ER, a copy was sent to my neurologist. After speaking with him in person, he told me that there was nothing he could do for me since my problem as not "neurological". I believed him until I spoke with other neurosurgeons, chiropractors and orthopedics. All the other doctors agreed that my condition was neurological. So not all neurologists know how to read an MRI and you must get at least 2 opinions from spine specialists. Most doctors who are not spine specialists will not be able to provide you with an accurate reading.

    Please see if you can get another opinion without going private. I know the frustration you must be going through. Let us know what happens!
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • Do you have a copy of the written report and the MRI CD? Like Lili said, some of the Neurologists and surgeons aren't good at reading MRI's for some reason. My Neurologist goes by the written report, and even though I bring a copy of the CD with me, he tells me "No, I don't need that, that is for the surgeon!"

    My present Neurosurgeon reads the report, but he goes over the MRI CD with a fine tooth comb as they say. He's found plenty that is missed on the written report! I would try and get referred to another spine specialist.

    So sorry to hear you are going through all this. Please keep us posted on how it all goes. *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I'm going to send you a PM ok?

  • hello Lili_Inu, Aviatrix36440 and Robin :)

    Thankyou all so much for your advice, i've just realised this morning, that i have stumbled onto an American site :/ i am posting from England, but it's the only site i have posted on about my problem, so i'm going to stay if thats ok? ;)

    Over here to get a second opinion from a neurosurgeon, is a very long process, i will have to make another GP appointment, wait for a refereal to my local hospital to see the same orthopedic doctor who diagnosed me with the 4 prolapses, and i doubt very much he will bother to scan me again, he has already said he is sticking by he's diagnoses :( and then he will have to refere me to another specialist hospital, all this will probably take a good 8 months, oh no maybe shorter because i doubt i'll have another MRI :/

    Before i saw the neurosurgeon that told me nothing was wrong, i was being treated by my GP and my work as having 4 prolapsed disc's, and the pain down both my arms is just as bad as the pain i get from my neck, but now both have been told there is nothing wrong, they are going with that diagnoses now, i'm not sure how long i can keep working, i am being made to lift heavy stock, where as i was excused before, my GP took me off the painkillers i was on, so all i can take now is Paracetamol, and they don't even touch the pain :(

    My life is so miserable at the moment, and i've found i've become very unsociable too, i am getting so down over it all, oh plus i'm not sleeping too good neither due to the pain, i can't afford to lose my job, but i'm honestly not doing too good there anyway, there is so much i can't do, i try but its not worth all the pain.

    I guess i'll have to go through the whole system again, i think thats the only way, i will get results, i just don't think i have the energy anymore :( all i need is for someone else to look at my scan, thats all i want.

    Crikey, i sound so miserable, and thankyou you all so very much, i finally felt as if someone out there actually listened to me, :) and you really don't know what an imapct that had, bless you all, you answered my post and made me feel as if there is light at the end of the tunnel :) be very proud of yourselves :)

    Thankyou X
  • "so i'm going to stay if thats ok?"

    Kaya, we are more than happy for you to stay! Yes this site is on America, but you will see as you read others posts, we are from all over!! :) Thank you very much for educating me a bit more on the medical (scheduling) limitations you face. Over here if you have preferred medical, we can dump one surgeon and go straight away to another.

    When we see situations such as yours, we all want to be able to wave a wand and fix it, but instead, we can only offer options and support. :)

    Is there a way that you can go back to the hospital (to the doctor who diagnosed the prolapses?) and get a new Neurosurgeon referral? Does your health care system allow that? Also too, to confirm the proper report was sent forward? I just find it odd that you go from prolapses to "normal" ??

    You need to stay an advocate for your health (and you seem to be doing that despite the obstacles), and you need to keep doing that. The orthopedic you saw with the first scan doesn't necessarily need to scan you again, just see if he can write a statement of your status (prolapsed disks) so you have a physical diagnosis in hand. This way if the wrong report was sent to your surgeon, you can counter this 'normal' report. Again...if your system allows it, get a copy of YOUR written report and CD of the MRI scans.

    I know it is depressing and frustrating, but please, try not to give up, or feel you aren't being listened too. We are here, and will keep tossing ideas out, and hopefully one will stick and help!! Big support *HUGZ* to ya!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Kaya, I had been in pain for almost a year myself before the surgery. I understand the part about being "unsocial". I stopped meeting my friends for dinners and spent most of my time on the couch. It was not a good time, but I stayed on top of finding the right doctor to help me. Like Brenda said, you have to be your own advocate! We are here to support you! >:D<
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
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