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

KnightRobbyKKnightRobby Posts: 4
edited 06/11/2012 - 8:48 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...
Robby
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Comments

  • 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!!
  • 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
  • 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!!
  • 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!!!

    Brenda
    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.


    @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,
    Robby
  • 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*

    Brenda
    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.
    Cathie
  • Hey everyone, I have some updates for you. I again really appreciate your replies - I can't thank you enough.

    After having an MRI (without contrast) done on both my brain and TMJ (btw, the MRI was louder than I recall - haha) I was told that there were abnormalities with both my brain and jaw. First, my brain has a problem with the pituitary gland and the sella turcica. The gland is partially empty (which isn't normal) and can cause various problems, including what is called INTRACRANIAL HYPERTENSION - which I included a brief article about it below. It might help someone reading this thread - I don't know, but I hope so...

    Secondly, I was told that my jaw looks like it is partially dislocated when my mouth is open. And I had to have my mouth opened by putting a tube in my mouth for roughly 10 to 15 minutes in the MRI; it was insanely painful and I actually had to ask the technician to get out of the machine. I've had two previous MRI's and never dealt with so much pain.

    I am just "happy" - in a way - to have found out SOMETHING, although my doctor (Name Removed), has yet to hear back from the Neuro-Radiologist. They're looking into more detail concerning my 'sella, etc.

    After 12 long painful years I am FINALLY with a wonderful, wonderful doctor - she is truly a blessing. I don't know what to say...I feel so relieved and at the same time desiring to keep pushing forward. I am praying and have received a lot of support, from my family especially, but I was surprised with the support out here. I cannot thank you all enough.

    I will have to get my doctor - Name Removed - to get me referred to a pain management doctor. We'll see though; I am just hoping I don't have to be on pain medication for the rest of my life...And I know many here can relate on that one.

    Again, I included the article below for anyone interested. I also attached the link below too.

    Thanks and I'll keep updating you. I'll also try to post out and help out here too - I've been meaning to, but been down with pain.

    I'm going back on my antibiotics and I am expecting the "herx" reaction (related to Lyme) and it increases the pain. The dose is different this time, so I pray that it isn't as painful or doesn't increase my already-severe pain.

    Thanks again, and hope everyone is doing okay,
    Robby
    Intracranial Hypertension Research Foundation said:

    ABOUT INTRACRANIAL HYPERTENSION:
    URL Removed

    Chronic IH is often characterized by an absence of clues. In idiopathic intracranial hypertension (IIH), there is no brain tumor, hemorrhage, cyst, lesion or blood clot found on a brain scan, no abnormalities of CSF and no localizing findings that point to injury of specific brain areas. In some cases of secondary intracranial hypertension (SIH), diagnosis may come long after the initial injury or trigger has occurred, leaving elevated intracranial pressure as the only evidence. Plus, a diagnosis of either IIH or SIH may be further complicated by the fact that a person does not exhibit all of the telltale symptoms.

    However, there are some additional physical signs a physician may encounter that point to chronic IH. (A sign refers to something a physician can see, while a symptom is something a patient feels.)
    Papilledema: Swelling of the optic nerves is probably the most common sign of IH. One sign of papilledema is an increased optic nerve diameter. An afferent pupil defect, in which the pupil in the eye is slow to react to light, can also indicate optic nerve swelling. Sixth nerve palsy due to elevated intracranial pressure may account for double vision and the eyes not tracking well together.

    Visual field abnormality: Visual field abnormalities including peripheral and inferior nasal vision loss detected on a visual field test can be signs of chronic IH.

    Empty sella: The pituitary gland, which is responsible for the body’s hormonal function, resides inside the sella turcica (cell-lah tur-sick-ah), a saddle-shaped space surrounded by the skull. Chronic IH can cause the pituitary gland to flatten against the skull bone, which gives the appearance that the sella turcica is empty.

    Posterior scleral flattening: The sclera (the outer white covering of the eye) at the back of the eye can appear flattened on a CT or MRI scan, as a result of chronic IH.
    EDITED

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    Post Edited by Administrator Dave
  • Wow Robby,

    Hopefully you will find that medication is all that is needed to keep this in check? I know I would be doing happy feet after all this time now knowing a diagnosis is in hand. The other part of me of course would then be wondering, "What is this all going to mean in the long run?" Please let us know what they tell you, and too what relief they can get for you. *HUGZ*

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Hi Robby,

    Don't know if you are still dealing with this, but I had a similar thing as what you had. Severe pain. I was literally pounding my head against the wall because it felt better that the pain. I went to doctor and they could not figure it out. My dentist is who diagnosed me and I went back to my doctor and they gave me an anti-seizure prescription and it knocked it out on the first pill. When I was in my early teens, I had it to and spent 2 weeks in the hospital only to be released with no cure. It comes and goes. I have only had it happen twice in my 54 years of age. And it could come back again, that is how I found your post because I am having the symptoms return now. Here is a link for you to look at. They don't call it the suicide disease for nothing. The pain is excruciatingly severe. I know!!
    http://en.wikipedia.org/wiki/Trigeminal_neuralgia
  • Sounds like tmj. Check teeth to
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