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black cloud over my head...

Muzz37MMuzz37 Posts: 1
edited 06/11/2012 - 8:55 AM in Chronic Pain
I doubt that my problems are the worst, but right now i would trade almost anyone or anything. It all Started Jan. 2010 with really bad headaches/migraines. Then one day in Aug 2010 I woke up and couldn't open my mouth wide enough to put one finger between my teeth. Since then I've seen 15 plus medical professionals, acupuncture, acoustical healing,2 physical therapy, 2 different pain managements, 3 or 4 neurologists, 1 neurosurgeon, 2 oral surgeons, 3 reg drs i think, um.. 1 psychologist, 1 psychiatrist, 2 tmj specialists and i probably missed some in there. Anyway Im Zach, 25yrs old expecting my first child in about 5 weeks (terrified with the state i'm in). I haven't been able to work since jan 13 2011 and missed a lot of work before that. I worked for my father at a small family business with no disability insurance, and disability still hasn't made a decision to help me or not nor job and family services. i'm sorry i haven't gotten to the point. 4 weeks ago i had spinal surgery on my c2 vertebrae to remove a tumor they thought (after an mri and c/t) was only a cm in diameter and it ended up being the size off 2 lima beans side by side. The surgery consisted of a vertical incisions on my neck then moving the pulling/moving the muscles to the side and cutting out a bone. Then cutting the legion off my spinal cord in hopes to relieve some of the catastrophic pain i've been going through for so long. Im sorry if i'm all over the place i've never done this before and im crying while typing. ok so painwise.. I wake up and go to bed everyday with a migraine if im lucky it is a bad headache. even before surgery all of this was the same. my back, neck, spine, shoulder, and chest all in chronic pain with trigger points and never ending knots that destroy me. sometimes shooting pains that drop me to my knees. i also have tmj if you didn't catch on. so my jaw is constantly in pain and i am very limited in what i can eat and how i can sleep and talking hurts etc..if you know about tmj. pre surgery my legs where always in pain and weak i would fall every once in a while. post surgery i've fallen 5 times and im numb (like when your hands/legs/feet fall asleep, needle feeling) from my waist down and my hands. i cant feel my privates and have had issues with using the bathroom. my source of income is zero. i've been reling on family donations and i'm draining them. my mind is shredded from all this stress. idk now why i wrote this maybe to get stuff off my chest. maybe someone here will have help or advice. i don't know where to go now. the surgery was at cleveland clinic...and i cannot tell you how terrible my experience there was. the messed up all of my normal meds i take my anxiety and depression and even my pain meds and everything. idk sorry its so long im new.


  • First off, what kind of pain meds are you prescribed? Also, do you take any other meds for other reasons?

    As far as physical therapy goes, I am in it right now & it seems my condition is getting worse (more pain) than when I first started. How about you, what kind of physical therapy did they have you go threw & for how long? Lets starts with these questions first.
  • Hi Zach,
    First off, congrats on soon becoming a dad! See, there's always some good, along with the bad...
    Welcome to spine health...lots of really great people on this site...for info, whining, or any other thing you need help with!
    I read your post, and when you mentioned the muscles, and mainly the trigger points...I'm pondering the idea of you could have one good case of fibromyalgia. The horrible muscle knots, pain, weakness, locking of TMJ, all sounds comparable to after my first 3 disc surgeries. I ended up at a rhumetologist, who said that was what I had..we started some meds, and to this day, it is mostly under control. You could have this "issue" for years, and trauma can trigger it to "turn on"... It seems like you've seen enough medical people so far, so this is just what I am thinking...maybe a rhuemetologist???
    Anyway, hope you can find some answers soon, and hope your wife is holding up!! Feel better!
  • HI Zach,

    First let me say welcome to spine-health. First off one thing is all of us here understand what you are going through and understand the pain. Your doing fine explaining yourself and what you are feeling. From your post it sounds as though your surgery was 5 weeks ago, and I am guessing the the description of the trigger points you had a posterior(back of the neck), surgery. With that said it is not uncommon to have terrible muscle spasms from that surgery and the trigger points. You also explain TMJ, one thing that comes to mind when you say that and your surgery together is myofascial syndrome. There is a video here on the website that explains it and you can look at it and see if that is anything you are feeling.

    With all of that said, what bothers me the most about your post is the part of your legs going numb, and I am assuming that wasn't there prior to surgery? You(your family), someone needs to get a hold of the surgeon and get them to understand you have a serious issues going on. This needs to be addressed. In the surgery if they damaged your spinal cord the faster it is addressed the faster you might have relief. Sense they went into your spinal cord, you could also have scar tissue forming, which needs to be addressed. I am sure if they removed bone you also have some sort of hardware, which could have also moved. When is the last time you seen the surgeon? Did he/she take images of your neck? Are you in a hard brace of sorts, such as miami J, or Aspen collar?

    As far as meds do you have a strong muscle relaxer your taking? Pain meds won't cover muscle spasms. They also make ten's unit for home use, and many of us including myself rely on those daily, along with the meds to control the spasms. I have had posterior surgery a few times and live with the chronic muscle spasms. Also did they say anything to you about myelopathy?

    The other thing I suggest is to get a copy of your medical reports. You need to get educated about your neck and what is going on and understand. Even if it takes going to a different doctor, so you can explain what happened and what is wrong. But also having knowledge is power. But there maybe something in the medical reports that explains why this is happening to you. But you have to advocate for yourself, and let your family help you as I am sure it is hard on them seeing you like this as well.

    Don't be afraid to ask questions or post things, we all get it. It is clear your in a bad situation and need some help. While none of us can diagnose you, we have been around the block a few times and might beable to give you some guidance, which way to turn. I am sure you have issues being on a computer for any extended period of time? But below where you post, you can subscribe to this post, so any replies will alert your email there are new messages.

    Once again welcome to spine-health and look forward to hearing more from you.
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