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demoralized

AnonymousUserAAnonymousUser Posts: 49,900
edited 06/11/2012 - 8:25 AM in Neck Pain: Cervical
I'm so frustrated and demoralized from managing disabling cervical spine and head pain. Its been over 4 years ago that I had 4 craniotomies which lead to chronic head pain and now nearly 2 years that my neck flared up to an all time new level that I could no longer just ignore that area of my body.

I've tried all kinds of therapies. I've seen numerous specialists. My primary care physician placed me on long acting pain meds that lead to dependence and severe weight loss. Now I'm tapering off the meds and don't know how I'm going to handle the daily pain going forward. The trouble is, if I don't control the head pain its like smoldering embers that can easily initiate a much larger "fire" or headache that leads to hospitalization.

The last surgeon I saw just a couple weeks ago viewed my images and because the spinal canal is large and its difficult to calculate where it hurts and because of past histroy of complications from craniotomy---no one wants to touch me. They look for reasons not to help me. In otherwords, they do not see me as worth the risk. This experience is diminishing and demoralizing. Being zombied out from meds is too. going through a huge cascade of problems after the cranial surgeries to now have to continue to live in this very small world is the continuation of a long nightmare. This doctor and another doctor say they are doing me a big favor in not helping me,

I feel like I am worth helping. I fought hard to come back from all the complications from the cranial surgeries. I've contributed much and have much more to contribute. These doctors don't even know me and reject me without taking any time to seek answers. Sure, superficially their advise seems prudent. But I'm watching everything I've worked for disappear. Not just materials but my spirit, relationships, everything. Who wants to be treated like a "curse" or broken when in fact you simply need a diagnosis and specific management.

Anyone, gotten to this point and if so, what was your next move?

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Comments

  • I'm really sorry to hear about how you are having to deal with insensitive doctors. Please hang on there has to be someone out there willing to help. You just have to keep pushing to get the help you desperately need. Can I ask why the craniotomies?
  • RangerRRanger on da rangePosts: 805
    Wow, I must ask also, why so many craniotomies? I honestly feel for you.
    As Tonya said, you must keep pushing and be aggressive to find the relief you need. You also have to look at it from other Dr's eye's, they don't want to assume a problem that was created by another Dr. I am not trying to be mean to you, just put yourself in their shoes. You wouldn't want to be blamed for something you did not do when your intentions were honorable.
    There is someone out there that has the answers and the relief you so well deserve, you just have to be positive and seek that Dr(s) out.
    Take care and keep us posted as to what you find. There are a lot of caring, interested people on this site like me that really do care.
    Best of luck to you.
    Ranger
  • Craniotomies:
    1. Inner ear problem
    2. Infection
    3. Infection
    4. Infection

    None of the above have anything to do w/my neck. Separate issues but both cause pain. I've been seeing lots of doctors. I did not ask the doctor I recently visited to help w/my head, just the neck. Simply put, I have head pain due to scarring. I've been gracious and empathetic towards the doctors risk management issues. I appreciate not only is my "story" a burden for myself. OK if they don't want to operate, I simply want efforts towards getting diagnosed like anyone else. Instead I get treated like I'm cursed. I keep reading about how first you try conservative management: injections, PT, acupuncture, chiropratics etc. I've done all the above three fold or more. Now I'm pressed to go back to work. We own our own business and have had to downsize to keep going. I'd been able to work from home but now I can't do so. Besides it looks like my poor husband was having a rough time trying to keep things together and the folks he had were "cherry picking" their work areas to make matter worse on top of this economy. I really can't afford to "go along" with the doctors brushing me off and doing me big favors by not helping me.

    Thanks for your empathy

  • What kind of specialists have you been to? I'm thinking that, if you haven't already, that you try a neurologist. They have experience with both head and neck, back and nerve problems and have proven, to me anyway, to be excellent diagnosticians. Because they are not surgeons they have nothing to "lose" in diagnosing your cervical problems.

    The next specialist I would try is a pain management doc. I have no experience with them but know that if you can find the right one, in this case someone with a heart and an open mind, that you may find help there as well.

    I feel for you and hope that you can get help. It has to be horrible to be treated as you have just because you have previous and unrelated problems.

    Please let us know what's going on with you.

    Griff
  • Yes, I've been to an othopaedic surgeon, neurosurgeons, pain management, physiatrist, neurologists, ent, chiropractor, PT, massage therapist, accupuncture, primary care/internist #:S

    I'm exasperated. As you know, pain is wearing. The neurosurgeon who performed all my previous surgeries is my likely only option. But he's 400 miles away. After runnning into complicatons w/my initial craniotomy I know what a nightmare it is to travel for care under the circumstances. I didn't have much of an option back then either. Still, it scares me to have to go this route. If you run into trouble, your toast. At least he treats me like a whole person and not like I'm broken.
  • I hope you find relief, you are a very strong person and I see a person who cannot and will not accept defeat, not without a fight. keep that wonderful chin down, hands up, and keep swinging. You deserve relief, as a person of dignity honor and worth,accept nothing less, I admire your spirit and determination, you are an absolute inspiration to me,and to others. your right in demanding your patient rights, if you can find another doctor who will listen and treat you as a person.
    There is so much more to you than you mention in your post, I see a wonderful person who needs relief, I pray that it will come for you very soon. Keep us in your thoughts I'll be keeping you in my prayer list!
    Dont give up
    Dont give in
    change happens, and I hope a good turn of the tides is coming for you!
  • It's good to know you are still coming here to SH. Know that we are all here for you to lend an ear. God bless you, and keep fighting.--Mazy
  • Thanks everyone for lifting me up. It has helped. I think what I'm going through, at least emotionally right now is getting into a space where I can reposture and decide what's next and how much risk am I willing to take on. I guess I want to decide this for myself, what I'm willing to do to increase the quality of my life. I want to be fully informed so I can make the best decisions.

    About three weeks ago, just after I visited this last neurosurgeon and had also seen a headache specialist, neither of whom where encouraging, I went on a little hike w/my husband. We hiked to a place where there was this huge granite mountain looming in front of us going straight up. We sat down on this granite slab on the base of this monolith in front of us to eat lunch. There was blue sky and sunshine above the mountain. I felt so overwhelmed and small in comparison. At the time I'd been trying out a new medication that seemed to make me weepy. Anyway I cried. I was angry mostly. It seemed here I am, I've been climbing these impossible mountains and going through these hurdles in a more weakened state and here are these doctors being lazy towards me and not willing to challenge themselves. I know each has "good reasons" but I can be disappointed. I'm getting to a point I don't want to run around anymore trying different doctors obviously not willing to explore or be challenged.

    Again I do appreciate the encouragement. Ranchhand, the notion you will pray for me and visa versa I take to heart. I do know there are lots of folks much worse off then my state of affairs. I'll try to be more grateful and positive and not let this pain get to me.
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