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Pain In Left Side Of Head/Neck/Face! Please Help! URGENT.

KnightRobbyKKnightRobby Posts: 4
edited 06/11/2012 - 7:48 AM in Chronic Pain
Before I begin, I found this thread here that sounds very similar to what I have. I can firmly say that now that there are several people with similar pain, we need help desperately! Here is the thread I am talking about: Click Here To Read The Other Thread.

I posted this out on WebMD and still am waiting a response. I need help badly. I am in SEVERE pain. Here's what I also posted out on WebMD (among other places...):

Hello, my name is Robby and I am 25 years old. I have been suffering from severe pain in my entire head since I was 13 years old. I've seen way too many doctors and I am at a total loss: I don't know what to do!

I am in severe pain; I don't use such words, like "severe," lightly. I have been diagnosed with fibromyalgia, migraines, tmj, and now I have a doctor who believes I have Chronic Lyme Disease. It all started when I was 13 years old and became ill with Mono (several classmates had it too). I never recovered from it. I also was hit quite hard with a basketball in gym when I was around 12 years old, before all of this started. I don't know if I got a virus that attacked the weak spot of my body...? I have no clue...I'm desperate for an answer and for relief - I am getting none.

My pain has been getting worse and worse over the years. I now have been dealing with more and more burning in my mainly my head, though I do have it in my back, etc from time to time. My head pain is the big issue. Most of the time, it is in the left side of my jaw, face, eyes, forehead, top and back of head and into the neck. I also have pain in my shoulders. My left arm always hurts (though not to the extent of my head pain). My jaw pops, though I had an X-Ray done on that and there was nothing wrong. I am looking to get an MRI done on my jaw soon.

The burning sensation also itches and is terrible; it comes and goes, but right now a lot of the pain is felt around my ear and left jaw plus back of the left head/neck area. My left eye has also become "lazy" in the past few years which is unusual and I can no longer focus with it; if I do focus with it, pain starts to shoot through it. I don't know what to do...I am so frustrated!

The pain is CHRONIC, it is CONSTANT. Even now when I type I am suffering.

I am absolutely desperate at this time.

I have had an MRI, CAT Scan, Spinal Tap, etc and tons of blood work done. I am having yet another MRI done here soon. I have seen every type of doctor and every test has come up negative. They even tested my heart! I am so lost right now at what to do!

If anyone can lend me there thoughts, I'd just really appreciate it.

I can't live like this anymore...


  • Robbie - I can only share with you, that things do change over time. I know from reading your comments that your in a spot. Considering what to do next.

    Guess that I would say that I am very much an optimist, even in the face of constant issues myself.

    I just want to encourage you to keep going, take things one day at a time, and when one day is too long, take one hour, or one minute.

    Chat later -
  • Hello Robby and Welcome to SH!!

    Sothis may sound like a stupid question....but have they checked your neck out really well?? I ask this becuase since my "accident" my neck and shoulders have been hurting....also my head!!

    Please keep pushing to find out what is going on...YOU are your best advocate to your health!!

    Dont give up....YOU are worth it!!
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  • oops, stupid computer posted it twice...LOL:)
  • Thanks for the replies - I greatly appreciate it.

    I am having a LITTLE bit of a better day today, but it is still quite painful. A lot of the pain - lately at least - has been around the ear/jaw on the left side, though I do have pain in my left neck. I also have it in my left arm all the time.

    @Centurion45 Thanks, I am grateful for your comments. I know I need to take my time with this but it has been 12 long painful years and I am tired of it. The good news is I have a WONDERFUL family that supports me all the time so it makes the pain more manageable with their help; I have no idea what I'd do without them...

    @PollyR Actually, that's not a stupid question at all. I am wanting to go see a spine/neck doctor about that. I just read about neck injures and spine injuries and found out that if your neck, face, and arm are hurting, it is likely you have a spinal injury; and I have all of those symptoms. I just got insurance, so I am really wanting to get this figured out sooner than later.

    Again, thanks for the comments and support everyone... ;)

  • Robby...you are so welcome and anytime!!! Yes it does sound like you need to go in and get your neck checked out! Please let me know when you find out!!
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  • Question for you. Have any of your MRI's been positional? I ask that because for instance with me, I have no curve in my neck, and if they do a recumbent MRI (laying down), not much shows. When I do a positional (sitting) which also includes flexation and extension in the MRI, my spine it's then under load (where my pain is), and most everything shows. Recumbent MRI's miss like 57% of disk and soft tissue issues. Just a thought... :)

    Welcome to Spine Health Robby!!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Thanks again for the replies. I am surprised at the support and can't thank you guys enough. I am in a lot of pain right now so I am typing fast...

    Anyway...first, I want to know about Pain Management doctors. Can they act like a primary (as many of my previous primaries are worthless) and refer you to other doctors, order vital MRI's, etc? What exactly do they do?

    And what doctors do you recommend >>> I <<< see concerning my entire head pain? My twin brother wants me to see a spine doctor and I totally agree. I know I am asking a bunch of questions, but one more: Is there a good way to find out if your doctor treats pain before going in? I have been driven many many miles and ended up wasting a lot of time when I finally get to the doctors and they say, "I don't help with pain." I get pissed at that.<br />

    @Aviatrix36440, no I haven't done a positional MRI but I'll mention it to my current doctor. It looks like on the prescription for the MRI it said with and without contrast. Wouldn't that be something? I am just praying like mad that she is a good doctor - I cannot waste anymore time.

    @PollyR Again, thanks for the support. I greatly appreciate it.

    Please let me know if you all have ANY - anything at all - more information that would help. So far I have been amazed with your posts. Thank you so much!

    I think it was a great choice to finally get out here. I've been suffering in my bed alone for too long and I need some advice.

    Thanks to everyone and hope you all get better,
  • Hi Robby, I've had similar problems since a car accident a year and half ago. At first I had pain on the right side of my face which was resolved when they did surgery on a herniated disc. That surgery had a complication that cause a condition called Horners syndrome. During surgery they damaged the C-III nerve which controls the eye as well as other facial aspects. Since then I have had increasing headaches and pain behind my eye.

    My daughter was in the accident with me and has been suffering from episodes of severe pain. Like you they have attributed it to TMJ, mastoid, and sinus. Yet nothing seems to be THE problem and we have not found anything that helps.

    My suggestion would be to see a neurologist and since you say you cannot focus with that eye to also find a neuro-opthamologist. The second will be difficult to find so you may have to look in a larger city. But a good neurologist should be able to order some tests and do a comprehensive exam that will pinpoint the source of the pain.

    It will take time to get the answer but it is out there. Keep good records of what you feel, get copies of all tests and notes from any doctors you see. And if possible have someone go with you to each appt. Often we miss things that are said.
  • You're very Welcome on the support around these parts! My first two cervical surgeries I had no support. I found this site randomly searching for this and that concerning fusions. Been hooked ever since! (G)

    Careful, you might catch the Spine Health support bug! :)

    If you already have a prescription for an MRI, see if you have a facility near you that does positional MRI's. The cost is usually no different, and doesn't required a "special" prescription. The image quality is just as good now a days as the recumbent MRI's. With and without contrast. The contrast allows for better viewing especially if you have hardware. The fluid areas and soft tissue shows up so much better under T2 imaging.

    For all that you have described of your symptoms, and this is just *my* feelings here, I would go with a Neurologist as some (or most) of what you are describing sounds neuro/nerve related. As for treating your present pain...each Neuro is different on whether they prescribe medications. Mine did not. My surgeon did, and managed my pain meds for about a year post op. Presently my GP is my pain management doctor if you will. Otherwise you probably need to get into "pain management" or your general practitioner. Thanks to the many "drug seekers out there, the DEA has clamped down on doctors, and are watching them more. They are becoming skittish on who they will prescribe opiates or narcotics too. Most won't prescribe them on a first visit either. They are trying to cover themselves and you the patient.

    Also too, presently your pain and symptoms are what might be called "idiopathic" right now - makes it harder to get some medications. Another doctor that might be able to find the cause for you would be a spine trained Orthopedist. The key is this, do you have neurological issues caused by neurological problems (i.e., a disk (or disk material) hitting nerves causing neuro problems), or do you have bone issues causing neurological issues? See? Except for my bone spurs throughout, mine have pretty much been neurological issues causing neurological problems.

    Please let us know if we can offer further help or guidance based on our spiney journey. *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Welcome to Spine-Health. You can find a lot of great and informative articles and videos on this site and as you can see, the members of the forum are very helpful, knowledgeable and supportive.

    The experiences and opinions you'll find here run the gammut. I could say that no two spineys are the same and no two spineys' treatments are alike as each individual has to find their own meds, docs and treatments that help with their particular situation. But their opinions and experiences can be a wonderful starting point for someone just starting their spiney journey. I hope you find these post valuable and helpful, whether it gives you a new idea to investigate or just getting the support you need from people who understand because they've walked in your shoes.

    You've received a lot of great advice here and I'll second the suggestion of getting your cervical spine looked at by a good spine doctor. I've always preferred a fellowship-trained spine surgeon (ortho or neuro), but one that only works on spines. (Seeing a surgeon doesn't necessarily mean surgery, they almost always try conservative treatment first, but not always as in my case. I was told I needed surgery on my first visit to my spine surgeon.)

    An option is to find a spine center that includes surgeons, physios and PT all in one place. They all work together in your treatment, not only the pain but what it will take to get you better, whether it's injections, PT, surgery or pain management.

    Good luck to you and please keep us posted. You've got us all too involved now to keep us hanging. :-)

    Take care, Robby, and again, welcome to Spine-Health.
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