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Everyone may have an opinion, but

baffledbbaffled Posts: 375
edited 06/11/2012 - 7:31 AM in Neck Pain: Cervical
I am looking for opinions regarding my situtation. I have had my last PT, 2 close friends in the medical field (nurses), even a client of mine that works for my present doctor's department....encourage me to get another opinion. I have one friend, also medical (occupational therapist) say what would be the point of another opinion?!

I am at a crossroads....i have had pain for over 2 years from the base of my head to the bottom of my shoulder blades with a distinct point of a knife thru me right bw the shoulder blades. Horrible muscles (the worst my pt had seen), in constant contraction, very limit head rotation, flex, extension and so on. Pain into my fingers, thumb, middle and ring. Lots of elbow and shoulder pain. MRI 1/08 states herniation and bone spur complex at c56, emg came back normal (though the guy testing it said i still have carpel tunnel - though I do not at all have the same pain in my hands as i did before i had the surgeries).

Do I try to see a Nuerologist or a Rhometory (sp) arthritis doc. My present Phy rehab guys, said there is arthritis in my neck, but not the diabling kind (???).

I honestly hope to get some improvement in my situation...but do not want to doctor shop, but do I need to do this to be my own advocate. I truely have had only my GP, one orhto (did a thoracic mri - which said unremarkable who had me go to the pain magt department) and that is where I presently am. I have had 3 doctors within the department, due to retirement and the state of my muscles (sent to phy rehab - muscle are really a mess).

Question for your opinions, do I seek out a nuerologist or an arthritis doc - or just except what i have and try to live with it. Presently, I am waiting for the results of a cpk blood test. and will see my doc in July.
thank you patti
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Comments

  • Since it is your cervical spine and there's multiple issues, I would see a neurosurgeon and neurologist. Ortho's tend to be more structural repair and don't look much past that or think past that.

    It took a combination of my neurologist, PM doc and neurosurgeon to help me out with my c-spine issue.

    Don't give up, I know how bad it feels and you need to find someone to help you!

    "C"
  • Yes, why not see both like Paul said? You might even want to try and see a spine specialist. Your pain is too substantial to not try absolutely every avenue out there.

    I'm glad you're being your own advocate - see some more docs. Especially neuro and spinal docs. I know it's hard, but you really have to have 100% confidence in your doc and treatment. It's imperative. In fact, if you were in Denver, I'd come get you and take you!

    Take care of yourself and let us know what you decide and how things go. We're here for you and really want you to be comfortable in your decision and care. Being at least relatively pain-free is out there somewhere.

    Hugs,
    Cath
  • where my EMG came back slightly carpal tunnel in my right hand, but the nerve study came back C5/6 nerve damage matching my MRI which shows a moderate bulge at C5/6, with a bone spur into the spinal cord and with nerve roots compressed at several levels on one side or the other. My neurologist said there was nothing to do except surgery, so I'm still waiting for my GP to get the referral done to another neurosurgeon rather than the one that did my lumbar fusion and revision surgeries. I'm also going to see an ortho surgeon for a consult too and pick which one I like the best and which one I feel is going to do the best. The neurologist actually said he prefered an ortho surgeon for this, but it was his own personal opinion. I thought that was interesting since he was in the field of nerves. He wasn't the typical neurologist though, from the other stories that I've heard about God-complexes with them. LOL

    Good luck. Let us know what happens.
    Lisa
  • Thanks again for giving me your opinions...and I wasn't certain, what would follow my question. I would imagine you have all been in my place one time or another. The time, money and so on spent on my neck and back....heck, I should be a 36D and have no more wrinkles on my face!!!

    I am going to make some appointments - a neurologist was referred to me by a good friend, who's husband see's him. And I am going to see about getting a referral from my GP for a Arthritis doc.

    Thanks for your input....I never even thought about both docs - I just assumed to go to one or the other....

    Your opinions mean alot to me - and I was prepared to hear different answers then what I got, may still get them....but it has helped to make a decision for me.
    patti
  • It pays to get opinions from the various medicos, as medicine is not an exact science, and opinions, experiences, beliefs and treatments vary a lot between them.
    You really need to be a part of the decision making process, and never just blindly follow a doctor's advice without sense-checking it. Always be ready to question their diagnosis.
    My diagnosis was DDD and cervical arthritis, with my GP saying my neck was just worn out and nothing would fix it.
    Pain killers for years, then when that wasn't enough, facet steroid injections-9 sets over 3 years. Some relief, but variable. I now have less bone density, which may be linked to the steroids.(By then I'd seen 2 GPs, a rheumatologist, a rehabiliation specialist, numerous physios and massagers, and finally a pain doctor).
    That pain Dr retired so I have a new one.
    His aim is to get away from drugs as much as possible, and look for other ways to heal.
    He was the only one of many doctors consulted who actually gave me a physical.
    He said my neck muscles were extremely tense, my arthritis didn't seem to be causing nerve problems, and so my chronic neck, head and shoulder pain was probably muscular in origin.
    He was spot on, as its turned out.
    I now have remedial massage weekly, and do stretches and light exercise daily.
    My headaches have stopped. General pain level is now very manageable.
    My shoulder blades were the main culprit with knots and tight muscles, and as these go up the neck they were causing my headaches.
    It's been a battle to sort these muscles out but it's been done.
    Sounds like you may have very similar problems.
    Do you use the computer a lot?
    I've had these pains for 20 years or so, brought on by intense office and computer work.
    While I knew that I had muscle tension problems, and had treatment for it, until now no-one has really addressed the cause of the problem.
    So that is why I suggest you get further opinions, and sense check them yourself.
    I could have been cured 20 years ago with the right treatment.
    My new clinical physio says that his program of stretches and exercise, coupled with remedial massage, is the very latest technique for treating chronic pain.
    Unbelievable results, so I urge you to see if it will help you as well.
  • Thank you peter for taking the time to share your story. I am glad to hear that you are finding relief for yourself...sounds like it was a long journey.

    I agree, my muscles are a mess - but I have gone thru 4 different sessions of PT (some PT therapies better than others) - the last was the best hands on for over 2 months, 2 times a week...and I received the massage, traction, ultrasound, heat, stretches, exercises and so on. But my muscles are not responding to any of it. I have had the injections, radiofrequency, botox, trigger point and so on, with no response from my body.

    I do spend time on the computer (hence I am at this web site) - but it is mostly personal. I do conduct my billing and such for my company with the computer, but it is a minimal time stretches and small compared to the rest of my activities.

    In my opinion I think it is a componation of things from 5 car accidents in my history (one really bad one - where I almost went thru the windshield - and was an idiot at the hospital and wouldn't let them treat me! - @18 years ago) and what I do for a living. I have made some dumb choice, lifting a rotor tiller in and out of my truck, by myself and so on. But truely I think this is about the body positioning I am in @ 6 hours a day - my head is tilted backwards. I could be swatting on my toes and leaning forward, but the head is tilted back, I could be bending at the waist and my head is tilted back, I could be standing and my head is tilted back. I garden 6-8 hours a day with my business and if you are in your own gardens, pay attention to your neck positioning and it is tilted back 90% of the time.

    I think i have an egg, and the chicken situation, what came first the messed up muscles or a structural problem? I am hoping it can be unraveled, and I am not a pusher for surgery, but at this point, just like every other proceedure they have had me do it was always said "Hey this may work".

    patti
  • have an appt with a nuerologist on the 10th of June...wish me luck. He was recommended to me by some friends who share a similiar personal history and found him to be very helpful in their journeys.

    will update after the appt.

    thank you all for your input and encouragement
    patti
  • Good news.
    Hope it is productive-you certainly have a history!
    Can I suggest that you take notes of what you have had done, and the symptoms you have, and perhaps even what you want him to do.
    Have a good discussion and don't let him put you off.
    If you are like me you can go blank and forget even obvious and well known things.
    After you leave, they come back.
  • I am soooo guilt of what you discribed. And why is that? Is it that they are a doctor and I am just a lowly mortal (not speaking bad of doctors, just my own nervousness) - is because I want them to help me and I am frightened to make them mad at me?

    Generally in life I am self assertive, but put a lab coat on and put DR in front of your name - and I am a puddle.

    My last visit with my Physio doc, was the first time that I felt proud of myself - I stood up for myself without being mean, but I was able to convey to hime the seriousness of my pain. I may not have gotten what I had hoped for (hence the second opinion) but He did rethink some things he had started the appt, with.

    thanks again for the suggestions
    patti

    I hope I can keep that trend going.
  • that is why it is a very good plan to take a long your lists, especially of questions, and run through them.
    Just make sure it is not too long, as that annoys them a bit.
    Medicine is still a mystery in lots of ways, from diagnosis to treatment.
    Everybody is different, doctors are different, the way you describe symptoms may not be good, your memory of symptoms may let you down, the doctor may be distracted by other things or may not be at his best, the doctors experience with your sort of illness may not be broad, and so on.
    Lots of variables, and medicine is not an exact science by any means.
    So think it through about what you really want to say, and what you really want him to do, then write these down.
    I have found that doctors appreciate this attention to detail is it makes their job much easier.
    It can be very difficult to get a patient to explain clearly just what the problems are.
  • thanks to both Peter and Bubblegum.

    And yes, I have heard great things about myofascial release therapy. My last PT did try this - and no movement from my muscles. I don't know if this is normal for a person with cervical issues and pain between the shoulder blades...but while she was having me do some stretches laying on my stomach, and to pull my shoulder blades together....I could not move them on my own. She had to guide them up - again, she was amazed or appalled (whichever the case my be) that I literaly was unable to move my shoulder blades together at all.

    from the base of my skull to the bottom of my shoulder blades - I am a mess, I am just coming down from a very large lump on the left side of my neck that started Mon. - it is half the size now. My husband, who hates when I ask him, can you see this? - was amazed at it and even he could see the lump (muscle knot I assume) -

    Oh God, all I want is some real relief - the meds don't give it to me, sleeping isn't any real reprive and I am just tired some days....fighting off the pain, keeping up with my life and family and trying to work - Chronic pain is exhausting somedays!

    thanks again - patti
  • Patti,
    I empathize with your pain. I am a Healthcare professional who specializes in the spine and the spine can be difficult to treat. Here is what I can tell you #1) Surgeons see the world through surgical glasses as compared to non surgical spine specialists. So you are going to want to exhaust non surgical methods first as long as you are not having nerve damage. As nerve damage can be irreversible this is a surgial correction that needs to be made. However, we (the healthcare world) know that neck and lowback surgery are not very successful and more often than not require a second surgery and a significant level of impairment. These surgeries are fantastic at removing the arm pain, but you can assure that you will most likely have some level of neck pain for the rest of your life. Very rarely are people cured from their pain from spinal surgery. In fact, on this site their is a study recently that was conducted comparing the superiority of surgical vs nonsurgical intervention for spinal pain, and they determined that they were about equal in their effectiveness. #2) Their are ways to treat disk herniations and radiculopathies(radiating arm pain & numbness) without surgery. In fact I will send you by email(if you so choose to give me your email) a recent research study that they performed in association with University of Washington and their local major hospital that included (DPT's, Chiropractors, and Pain Management and Rehabilitation Docs-PM&R). In this study they took either 150 or 200 patients that were prepared to go surgical for symptoms similar to yours. They performed certain nonsurgical techniques and treatments that not many professional perform including a technique called neural mobilizations. 70% of the patients in the study ended up not having surgery and after 3-4 wks had 50 reduction in their major complaint symptom. Now I am not saying that this is the holy grail or cure for your situation. Everyone differs when it comes to healing and pain perception. Finally, what I am saying is that their are treatments out their that may help your condition. However, most surgeons won't tell you about it because they don't know about it. Remember, they see your condition and they say what surgery can I perform to help this condition. Their intentions are in the right place, they want to help. Unless you are having severe unrelenting pain that is affecting your psyche and quality of life, or you are having nerve denervation(or damage) try to give yourself the opportunity heal by going to a someone who knows how to deal with your type of difficult situation. This is not an endorsement for any medical center or doctor. I know of a guy who deals with conditions exactly like yours. He is who I would send my mother to if she was in your condition. So send me your email me if you are intersted.. Good Luck Cheers
  • I will look into both Myofascial Release for Neck Pain and the technique called neural mobilizations.

    thank you... I need more info about cervical arthritis and would recomend a Rheumatory (sp) and I will be going to see one also...
  • thank you for the info rcrosby - but it reads a little salesman like. Not discrediting the information you submitted, and certainly food for thought...but too much of a sales pitch.

    patti
  • baffled said:
    I am looking for opinions regarding my situtation. I have had my last PT, 2 close friends in the medical field (nurses), even a client of mine that works for my present doctor's department....encourage me to get another opinion. I have one friend, also medical (occupational therapist) say what would be the point of another opinion?!

    I am at a crossroads....i have had pain for over 2 years from the base of my head to the bottom of my shoulder blades with a distinct point of a knife thru me right bw the shoulder blades. Horrible muscles (the worst my pt had seen), in constant contraction, very limit head rotation, flex, extension and so on. Pain into my fingers, thumb, middle and ring. Lots of elbow and shoulder pain. MRI 1/08 states herniation and bone spur complex at c56, emg came back normal (though the guy testing it said i still have carpel tunnel - though I do not at all have the same pain in my hands as i did before i had the surgeries).

    Do I try to see a Nuerologist or a Rhometory (sp) arthritis doc. My present Phy rehab guys, said there is arthritis in my neck, but not the diabling kind (???).

    I honestly hope to get some improvement in my situation...but do not want to doctor shop, but do I need to do this to be my own advocate. I truely have had only my GP, one orhto (did a thoracic mri - which said unremarkable who had me go to the pain magt department) and that is where I presently am. I have had 3 doctors within the department, due to retirement and the state of my muscles (sent to phy rehab - muscle are really a mess).

    Question for your opinions, do I seek out a nuerologist or an arthritis doc - or just except what i have and try to live with it. Presently, I am waiting for the results of a cpk blood test. and will see my doc in July.
    thank you patti
    Why didn't they do a cervical mri also? Thats a waste. I would go to a orthopedic doctor thats who has done all my operations. While your waiting find a swimming pool and get the water past the point of the pain and exercise under the water and take anti inflammatories until your diagnoses. Both things i mentioned will reduce inflammation and then that will reduce the pain.
    2005-ACDF with Corpectomy at C3-C-5.
    2006-L4-L5 diskectomy.
    2009-Cervical laminectomy at C3.
    Steroid injections series x 4.
  • Disc herniations and bulges don't always mean that's the cause. I was shown to have a bulge but no one thought that matched my pain at all. A LOT of people have disc bulges and never ever know.

    My pain seems to be muscular in origin too, but with nerve symptoms. I have many of the same symptoms you describe and I just saw a chiropractor and in one visit he helped my pain better than years of PT has.

    Mind you a lot of people seem to think Chiropractors are quacks and make things worse. If your issue is the disc, they possibly could. However I've had a long and painful journey just trying to find out what the problem is, so I'm willing to take any opinions now.

    I mean people told me not to go to a Chiro, but my only other option is surgery, and what if it doesn't relieve the symptoms? It could even get worse! This way, if the Chiro can't fix me I know I've tried most everything.
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