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Frustration is an understatement

sgalvin07ssgalvin07 Posts: 3
edited 06/11/2012 - 8:57 AM in Neck Pain: Cervical
It's been so long that most of the story now seems fuzzy.
In 2001 I was kicked in the forehead, blacked out, and landed on my head during a soccer game. Dx with a concussion, had slight amnesia for a few hours, and then started the neck pain. It is a constant burning,aching on both sides of my spine from the top of my shoulders to the base of my skull. The pain isn't always the same constant burning feeling. There are times that it gets worse, but never times that it gets better. Occasionally I have noticed that my left hand goes numb (the 1 million pin pricks kind of numb) when doing everyday things (riding my motorcycle, typing, anything that requires using my hands alot). I have to stop and shake them out and it goes away. Whenever I engage in physical activity from running, to going up the stairs too fast I become very dizzy as if I'm extremely out of shape but 10 times worse.

I went through all of the conventional routes beginning with my PCP in 2001. I went through Xrays, MRI's, CAT scans. I went to a chiropractor, accupuncture, massage therapist, neurologist. I even went to an ENT to see if it was my ears causing the dizziness. However, none of them were ever able to find anything "wrong". I did 2 sets of cortisone injections. The first I had about a month's worth of slight relief, the second I got zero relief. I took NSAID's for a while, and they told me to take aleve daily, other than that no meds. I'm not a HUGE fan of pain killers, can't take them and work so they were out of the question.

In 2004 I gave up trying to go to the doctors to get relief as they all came back scratching their heads, unsure of what was causing the pain. I am constantly trying to crack my neck in search of relief, and at times I get that one good pop and feel good for a minute or two, but then it's right back to the pain (and trying to pop it again). A few months ago I had a friend who had an occipital artery aneurysm that they attributed to forcefully cracking his neck. This brought me back to the desire to seek help again, as I surely do not want to suffer that fate from constantly cracking my neck.

I have a new PCP, who at one point specialized in neurology. When I first met with him I explained my history and gave him my chart to look over and set up a second appt. so he had time to review all my documentation. Last Oct. I hurt my shoulder and while they were taking xrays I had them take one of my neck (I actually work in the operating room at a hospital so it was a little perk). Upon meeting with the PCP the second time he said that he was kind of in the dark about the whole situation as well, and that I did all of the "normal" therapies that he would have suggested. He set me up for an MRI, saying that hopefully after 10 years maybe whatever is causing the pain is bad enough that they will be able to spot it.

I'm so lost and depressed over the situation. It's hard to enjoy myself anymore because of the constant nagging neck pain. I still engage in my sports and what not, I just know going in that I will be extremely dizzy, have a massive headache the next day, and tremendous amounts of neck pain the next day. My fear is that my MRI will again show nothing tomorrow, and I'll be left where I was 10 years ago.

Not sure if anyone here can give me any advice or direction, I more or less just needed an outlet to vent some frustration. For once in my life I pray that the test tomorrow actually shows something wrong with me, so that there might be a light at the end of this horrific tunnel.


  • Welcome to spine health. You have been searching for answers for such a long time! While none of us wish for doctors to find anything terribly wrong with us, when we know how bad we feel, and search for reasons why, it is always good to have that pain validated and receive a diagnosis.

    How did your MRI go? When will you get your results if you haven't already?

    Wishing you all the best in your journey, and again, welcome aboard.

    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • MRI was friday. They said results should have been at my PCP by Tuesday at the latest. Still haven't heard from them. Unfortunately as you said, while I truly don't want anything to be horribly wrong wiht me, I'm ready for someone to validate my pain. Whether it's psychogenic pain from where I really hurt myself and now my mind hasn't forgotten the pain, whether it's a fracture disc problem, nerve problem. At this point I just want them to come up with something so that we can move forward to relieve the pain. Even if it's simply a muscle injury where the muscle is so tight now from the past injury. ANY news at this point is better than no news. Sadly the longer I wait to hear from the PCP regarding the results, the more I feel like they didn't find anything and he's trying to come up with options before we meet again. Trying to stay optimistic, but it's easier said than done at this point.

    Not being able to participate in my sports without being dizzy and having horrible neck pain, not being able to sleep at night because I'm constantly trying to pop my neck to find a small moment of comfort, not being able to live life like I want is starting to take it's toll. Im only 27, but feel like my body is making me act like I'm 87.
  • Please let us know how the tests turn out. I spent years with spasms and pain, was misdiagnosed with fibromyalgia,and told it was in my head. Years later with recurring pain flare ups, and trigger point spasms, chiros, massage therapists, natural healers, acupuncture, positive affirmation books, new age healers telling me I was suppressing feelings , or not using my voice..to color/crystal therapy, subliminal tapes, meditation/visualization.Finally found out it was degenrative disc issues. I cried when I was validated , it was ike a huge weight was lifted. So I understand your frustration. In my case I think it was the slow process of bone spurs actually growing into the nerve, and the breakdown of the discs, which caused the pain. I've had a fusion at one level and I am still continuing in pain , however I am better able to manage. This site has been very validating. So I hope you visit ,,you are not alone.
  • Well the saga continues, and I believe comes to an end in the same day. As the frustration has mounted and the answers just don't seem to be there.

    The MRI results came back and were negative (10/18/11). While that is a great thing (no tumors, no herniations, etc..) It left me at square one. How can they read my MRI and tell me that my cervical neck looks absolutely perfect, nothing wrong with it at all.....And while they tell me this I sit here in pain. It has to come from somewhere, no?

    They set me up with what my PCP called a pain management doctor. He is actually a physical medicine and rehab doctor, deals mostly with chronic back pain patients. So I met with him this morning (10/21/11). As he walked in the door my gut feelings kicked in and I got a sense of uneasyness. Hard to explain, guess it's the healthcare background in me (I actually work in the operating room at one of the hospitals here in ohio). He began asking me what happened and how I hurt my neck. He did some tests mostly focusing on my cognitive ability and muscle strength/reflexes..All of which I passed just fine. I have no problem with muscle strength, no reflex issues, my mind is all here and intact.... but I understand the reasoning for the tests.

    So he leaves the room and comes back with a "summary" of his thoughts. Basically he diagnoses me with what he called " post-concussion syndrome" and said that the reason that I have pain is because I returned to playing soccer too soon after the injury (which I never told him when I started playing soccer again after the injury, it could have been a week or it could have been 5 years....he never asked). He told me that since I have had pain for 10 years, that I will most likely never be pain free, it will always be there, there has simply been too much time that has passed to reverse all of the pain.
    He also said I have "cervical myofascial pain syndrome". This one I actually get, and can totally grasp. He explained it like this. If you hold a bucket of sand with an out stretched hand, eventually the bucket will fatigue the muscle to the point that you have to drop it. The muscle will be extemely sore and hurt... Basically he described that most likely happened with my neck. My head sensed the pain and kept telling my neck muscles to tighten in order to hold my head steady. The muscles have become fatigued and pushed past their limit. This one seems legit, and totally plausible.

    What I didn't get (this coming from the healthcare background) I attempted to tell the doctor that in the past I had three things that gave me a sense of "relief" (albeit short duration). I told him that in physical therapy I did traction and it left me feeling good for 15-20 minutes, he just said, "yes because it stretched your muscles out" and then went on. The sencond, I told him that I had a round of cortisone shots in a set group of trigger points and recieved about a month and a half of comfort (to which he didn't even acknowledge). Finally I told him that I had been through massage and felt great following them for a short amount of time, his reply "I'd never say that massage has a therapeutic use, I wouldn't waste my money on it"........ THREE times, and you completely dismiss things that I share that provided some relief???? Shouldn't that be taken into consideration at some point?!?

    Short story made long (I get long winded, sorry). He prescribed me Amitriptyline 10mg nightly, as well as Maloxicam (anti-inflammatory) and left it at that.. What kills me about this guy, I asked him if there would be any affect between my adderall and amitriptyline (since ones a "stimulant" and ones a "depressant" and I don't wanna feel like I'm on a rollercoaster everyday) he responded, go home and research it a little, you'll find the answers...... WOW!

    Needless to say, the scheduled follow up with this Doctor (word used loosely) will not be attended by me. I'm done with him. I'm going to try the amitriptyline, it seems that some people get good response from it and some people don't (or can't tolerate the side effects). And I've also decided that I'm on my own agenda now. Since I work in the operating room I know quite a few of the anesthesiologists that work in the pain clinic (dealing with chronic pain pts.). My next steps are to try the amitriptyline out and see how it does while I wait for the ANES. that I like to work again. I'm going to present my case to him and see if he has any input or direction. I'm also going to pursue a place that does sports massage, explain to them my areas of muscle pain and see if a few rounds of massages does anything for me (I'd rather spend $60 on a massage to feel good for 15 minutes, then waste another $45 co-pay to see this doctor again, so money well spent).

    Needless to say today has been a very depressing day for me. I went into this appointment with hopes of getting answers, getting some good feedback, moving on to step 2. I came out feeling like the doctor said to me "you did this to yourself, it's never going away, and there's nothing that can be done". So I'm sorry for the long post, but I needed a little venting room.
    No one I come in daily contact with seems to understand the frustration of having neck pain with unknown causes and the physical and mental strain it puts on a person. I'm so glad I found this site where people actually understand where I am coming from and can relate.Even if the doctors can't validate my pain, this forum most definitely has validated that something is wrong and something needs to be done, and somehow I'll find it. EVEN if the pain never goes away, atleast to get it to a daily managable level will satisfy me after so long
  • Sgalvin,
    Glad you found yer way back and vented. Just wanted to let you know some of us take time to read ..and definitely send our prayers to you and all who share in this forum. Since I discovered Spine -Health I have walked through my diagnosis, had C5/6 surgery and now I am back with new Cervical disc issues and my old friend pain. I appreciate what you wrote, and understand exactly the frustrations. I use this forum as my support group. I get to read others stories, share my hurts, and learn ways people are living with pain. Otherwise, left in my own head i would sink into the quagmire. Somehow it helps to take my mind off me even for a momen to focus on you ..it works, on a spiritual level.
    Lately I learned about micro-current therapy and infrared light ..I am going to find out more and possibly post a new topic to see if anyone has used these therapies...Keep the faith..
  • Sorry you had such a disappointing visit with the doc. Glad you were able to vent it where it's totally understood. One thing I was told by one of my doc friends, is that too many health care professionals have gotten into the habit of trying to appease patients by telling them they have XYZ syndrome. Giving them some long name for something that really means undetermined source of discomfort in XYZ region. It's sad because it clouds things when someone really does have a legitimate issue. I can totally relate to neck pain and I think that unless someone has experienced more than a stiff neck, they really don't understand how wearing and tiring neck pain can be. Even low grade neck pain can have a huge impact on the way a person feels.

    Don't give up on getting someone to help you. Especially if you know some of the anesthesia docs.

    Find a doc that believes in you and believes in finding you a solution or a way to manage your pain. Until you find that doc, don't give up looking.


  • I so understand how a medical appointment can leave you feeling depressed and that you are just where you were before the appointment.

    I too have had appointments like that. I am looking forward to getting some answers, but come away feeling tearful and very fed up that I still don't know for sure what is going on with me.

    They do various tests, but never quite test enough to get conclusive answers. I am told that I definately have neurological things going on but they aren't sure where they are coming from. They say it could be from anywhere between my brain and the bottom of my spine!

    My latest appointment, my registrar said he was recommending a 2 level ACDF to halt the myelopathy that was starting (brisk reflexes) He went to talk to the consultant, but came back and said he had advised that we should hold off as long as possible.
    Now they have said they will see me in 6 months to see how things have progressed.

    Meanwhile I wait!!

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