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Dudley's MamaDDudley's Mama Posts: 1
edited 03/29/2015 - 4:38 PM in Chronic Pain
I am new to this site, and not really sure how much info to share.... or not share.... So, I guess I will start from the very beginning...

When I was 13 years old, back in 1975 (you can do the math to see how MANY years ago that was) I had back surgery for scoliosis, (a curved spine). I have an 18 in Harrington Rod in my back.... For the past 10+ years I have suffered with chronic pain in my neck. I retired from doing daycare after 30+ years, because I was in so much pain by the end of the day that I wanted to cry. At that point, I was also suffering from pain/stiffness and discomfort in nearly ALL of my joints... I went from Doctor to Doctor, trying to get an answer... My primary sent me to an Endocrinologist... She sent me to a Rheumatologist... He sent me to a Neurologist for an EMG and then back to the Rheumatologist.... The Neurologist wanted me to have an MRI to try and get to the bottom of things... I was all ready and prepped for the procedure, IV started and all.... And I made mention of the Harrington Rod that was in my back. The brakes were instantly put on that procedure. Apparently the material that the rod was made of back 1975 is different from what it is made of now. I was informed that I could NEVER have an MRI as it could be life threatening!!! That was a little too close for comfort.... Instead I had X-rays done, with a follow up appointment with the Rheumatologist. Sitting in his office he told me that I had severe bilatteral carpal tunnel.... I was like What???? I didn't know how that was possible because I had surgery 3 years ago to "release the tendons" in both of my wrists..... Wierd??? Interesting to say the least.... He went on to bring up three x-rays of my neck. He looked at me and said, "Your neck is a MESS"!!! I wanted to jump up and down and start singing.... His words were like music to my ears!!! "Your neck is a MESS".... Finally someone was telling me what I already knew.... I was bone on bone in 4 different places... I had bone spurs on the front of the neckbone and my neck was inverted.... He referred me to the Spine Clinic. My appointment was two days ago, and I have felt like crap ever since!!! The person who saw me, (I was assuming she was a Doctor, and did not find out she was an APRN until looking at my paperwork after getting back home) was almost cruel... She basically told me to "suck it up". She didn't actually use those words, but she might as well, She told me that a lot of people get thinning of the lining between the bones as they grow older... She told me that I needed to "work through the pain".... After reading my paperwork I have what is called cervical spondylosis. I can appreciate that she sees MANY people over the course of her work week, and has probably heard how much pain people say they are in, that she is almost immuned to it.. At least that is how I felt. I hurt so badly by the time I go to bed that I could lay there and cry... If I sit for too long.... If I stand for too long my neck and joints SCREAM.... I feel at a disadvantage because I can't have an MRI... I think that would make her see things through different eyes.... I am not the kind of person that says I am in pain, if I am not.... I have tried to get on disability, but... that has been a nightmare too....

On top of the chronic pain I have in my neck and joints.... I have SEVERE restless leg syndrome... I have taken mirapex for years.... then my primary added trazodone to that... and now she has added gabapentin to the mix as well.... Believe it or not, even with all of those medications you would think I would be out like a light and sleep like a baby. That is not the case. It is beyond frustrating!!!

Over the counter meds do NOTHING.... massage feels good, but only as long as there are hands on my neck... I can never go to a chiropractor because of the rod in my back that was fused with bone done my spine... accupuncture feels amazing but that only lasts for 3 - 4 days...

Every person is not the same.... Their bodies consist of the same amount of bones but those bones are not all configured the way they are supposed to be..... I feel like the APRN that I saw from the Spine Clinic was putting me in a category with so many others before me.... What might work for some... doesn't work for all...

I am not looking to get any sympathy votes, just maybe some silent support...

Welcome to Spine-Health

It would be very helpful if you could provide us with more details. So many times we read about members who have different tests and they all come back negative. The more clues and information you provide, the better chances in finding out what is wrong,

Here are some questions that you should answer:

  • - When did this first start?
    - Was it the result of an accident or trauma?
    - What doctors have you seen? (Orthopedic, Neurosurgeon, Spine Specialist, etc)
    - What Conservative treatments have you had? Which ones?
    - What diagnostic tests have you had? And their results (MRI, CTScan, XRay, EMG, etc)
    - What medications are you currently using? (details, dosage, frequency, etc)
    - Has surgery been discussed as an option? (If so, what kind)
    - Is there any nerve pain/damage associated?
    - What is your doctor’s action plan for treating you?

Providing answers to questions like this will give the member community here a better understanding
of your situation and make it easier to respond.

Please take a look at our forum rules: Forum Rules

Please remember that no one at Spine-Health is a formally trained medical professional.
Everything that is posted here is based on personal experiences and perhaps additional research.
As such, no member is permitted to provide

  • - Analysis or interpretation of any diagnostic test (ie MRI, CTscan, Xray, etc)
    - Medical advice of any kind
    - Recommendations in terms of Medications, Treatments, Exercises, etc

What could be good for someone could spell disaster for another.
You should also consult your doctor to better understand your condition and the do’s and don’t’s.

It is very important that new members (or even seasoned members) provide others with details about their condition(s). It is virtually impossible to help another member when all the details we have are
I’ve had this for years, it hurts, I cant move my shoulder – what could this be, what treatment should I get?

Diagnosing spinal problems can be very difficult. In many ways its like a game of clue. Especially, when the diagnostic tests come back negative – no trouble found! Then its up to the patient and the doctor to start digging deeper. The doctor is like a detective. They need clues to help them move along. So, you as the patient need to provide the doctor with all sorts of clues. That is like it is here. Without having information about a condition, its impossible for anyone here to try to help.

Specific comments :
Reading your thread, I did not see any formal diagnosis based on formal testings. What has this been? There should be something more than the doctor just telling you YOUR NECK IS A MESS.

Personal Opinion, not medical advice :

--- Ron DiLauro, Spine-Health System Moderator : 03/29/15 22:36 est


  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    What I can BEST relate to is when a doc says, "Your neck, back, knee, whatever.. is really a mess"! Yes it sounds like validation from the heavens but we seldom get a reward! I just started with the Pain Clinic and all the spine Validation this past July 2014 but MY initial injury was in 1974 when I was 8 and took a bad dive into a 3 foot swimming pool. For YEARS I heard, "Growing pains", "Drug seeking", "hypochondriac"... and now, "Wow, that must hurt!" but unfortunately what they often say after that is, "If we had only seen you when you were 8!" Well, most of them were not alive when I was 8 and I'm not that old but they are babies (handsome babies but babies nonetheless!)

    But I am very thankful that these docs are doing all they can to treat what they can treat. (It took about a year of fuddling to find doctors I liked.) They help with pain meds, Physical therapy, listening to my kvetching (with good humor), and the hope that they will learn something that will work. Before I met this crew I had no hope and we all know that hope is so important.

    I'm sorry you have a magnetic back. I have a titanium knee but I can still have MRIs. I just thought of all kinds of horror movies with scenes of people who had back surgeries with hardware and then going into MRIs.
    But mostly I can say, hold onto that hope. There are newer medications for RLS so talk to your docs.

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
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