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C5-C6 neck pain with occipital neuralgia and dizziness?

Lili_InuLLili_Inu Posts: 634
edited 05/13/2014 - 9:07 AM in Neck Pain: Cervical

I've been dealing with a moderately degeneration of C5 and C6, but since August, I developed a herniated disc after doing strengthening exercises with a PT. I ended up in the ER with numbness down the arm and pain on the back of the neck that made me feeling like I was going to pass out.

Ever since then, I would get better and then sudden get worse for no apparent reason. When I get worse, it's usually the occipital headaches that debilitate me. I will get tingling in the back of the head up to the crown accompanied with dizziness. When I get dizzy, I have difficulties eating because of the nausea. Recently, I've been dizzy everyday for the last 2 months. Some days or better and some are worse.

The pain in shoulder, neck and upper back is nothing compared to the dizziness! Last week, I had a CT scan done that revealed "a severe biforminal narrowing due to uncovertable hypertrophy" and they found posterior and anterior osteophytes between C5 and C6. Does anyone have similar symptoms of occipital headaches that make you dizzy from C5 and C6 nerve impingement?

2011 ACDF C5-6 for Spondylosis with Myleopathy
2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
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134

Comments

  • Before my fusion of C5/6, I used to get severe occipital headaches. I never had dizziness associated with them.

    Have you seen a spine specialist yet?

    Best wishes,

    Marianne
  • Hi Marianne,

    Thank you for your reply! I'm quite sure that the dizziness is from my trapezius muscles. When I apply pressure on the part of the muscle between my shoulders and my neck, I feel pain radiating to the back of my head and the eye. I get temporary relief and then it slowly comes back. I know that I have nerve root impingement. The muscles around my neck, shoulders and upper back are always super tight and in pain throughout the day and sometimes I feel the muscle spasm when they start twitching.

    I have a couple of appointments with different neurosurgeons within the next 2 weeks. I can no longer deal with the dizziness. I feel surgery is my only option, since I've tried PT twice, acupuncture, chiropractor and had my first epidural last week with minimal relief.

    Lini
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • Gosh, I've posted alot about my "new found dizzyness since having this acdf surgery" I'm glad I stumbled onto your post. I too have extremely tight muscles that start from the left side of my neck, across my shoulders/traps daily and this all started after my surgery. I can only hope that if you have to have surgery that all your symptoms will be gone!

    I personally think that I still have some nerve compression and this is causing my dizzyness. I'm going to see an Ear Nose and Throat specialist next week...my dizzyness, like yours has been going on for 2 months 15 days and counting! Please keep posting Lili I'll be watching for your post. My neuro has been of no help regarding my issue. Perhaps I can learn from your experience. thanks in advance
  • Hi cgm,

    I also have an appointment with an ENT in a couple of weeks. On February 1st, I'm meeting with the best neurosurgeon for the cervical spine at EDITED Hospital. Hopefully he will be able to provide some insight for both of us.

    Try massaging or pressing really hard on your traps between your shoulder and neck area. It might even be near your clavicle. Dig around that area. When you find this sensitive area, put pressure there. You should feel pain radiating up the side of the neck and behind your head. This is why I think the traps are involved. You might even notice that the dizziness goes away for a little while. Let me know if that works for you!

    I think you should meet with the doctor who did your surgery to discuss this new symptom you have. Good luck and keep me informed of any developments on your end!

    Standards agreement and posting rules.
    Naming specific institution or doctor names is not permitted in the Spine-Health.com forums.
    Edited by Authority Member Cath111.


    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • jlrfryejjlrfrye ohioPosts: 1,136
    I also experienced severe occtipital headaches with severe dizziness. My dizziness would come out of no where. I was afraid to drive or go anywhere alone because when the dizziness would hit I couldnt even stand up. Since I have had my surgery it has all gone away.
    Susan
  • My headaches are here and there...not debilitating. I have never suffered from headache issues but I've noticed an increase. JlrFrye, lucky you...glad surgery fixed your issues! Thats awesome.

    My clavicle has a area that is painful when pressed and I can feel that the muscles are very tight thru that area as well.I'm constantly kneading my neck and shoulder muscles and I do not feel relief of dizzyness. Not sure when your ENT appt is, but my PCP told me to take mezinine sp?/motion sickness tables 25mgs 3 x a day so that I can rule out "vertigo". She did a balance test and eye test and saw no indication of vertigo nor any ear infection. By taking them and letting the ENT know, I can bypass this step. Apparently, they will ask you to take this to see if it helps. I just want it to stop. I will say, that I'm not near as off kilter like I was a month ago, but I still have it...and it's a constant. It's hard to explain the sensation. My head feels heavy and any upper torso movement makes me feel an off balance sensation.

    Keep the updates coming on what is going on Lili...I'm curious...I'll let you know too.
  • Hi Susan,

    Can you tell me which area of the cervical spine did you have surgery on? I'm so tired of this dizziness that it's impossible to function. I'm lucky that I can take time off from school. I was a full-time student and this is the second semester I had to ask for a leave of absence.

    Lini
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • While you are waiting for Susan to get back to you, if you click on her screen name (at the top left: jlrfrye) you will see her medical history that explains which levels have been operated on. :-)

  • Thanks jellyhall! I'm a new member and still learning.
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • I have many years suffered occipital headaches and occipital neuralgia. It's not much fun. My problems were from C2-C3 as well as vascular issues. I wound up with a vascular injury after surgery at C1 and C2 that damaged the vestibulocochlear nerve, creating horrible vertigo, hearing loss and nystagmus (involuntary eye movement). I also have disc problems at C4-C5 and C5-C6, but I no longer have the headaches or vertigo.

    Has your doctor determined if you are suffering dizziness versus vertigo? I used to think the two were synonymous until my experience referenced above.

    What type of doctor are you seeing for all of this? It took a team of neurologists to get things figured out for me and get me going in the right direction.

    Welcome to Spine Health.

    "C"
  • I had actual vertigo a couple of times. Since then, I know that I have to move slowly and never really had it come on. But I do have dizziness all the time, all day for the last 2 months. I do not believe it's an inner ear problem, but meeting with ENT anyways.

    I have appointments with neurosurgeons from EDITED Hospital and EDITED Hospital in the next 2 weeks. I'm willing to wait to meet with the best in the field, even though it is driving me crazy!

    How did you ever repair the vestibulocochlear nerve after it got damaged?

    Standards agreement and posting rules.
    Naming specific institution or doctor names is not permitted in the Spine-Health.com forums.
    Edited by Authority Member Cath111.


    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • We can't post website here or they will be deleted. Anyhoo, I sent you a private message with a website I just found. Good info. Take care LILI and we'll see ya round.
  • There was no repair done to the nerve other than what my body did itself. I went through several months of vestibular rehab where I had to work every day to learn to compensate (learn to walk unsupported, learn to balance, learn to stand up from a seated position, learn to turn my head or track someone walking past). Eventually I was able to compensate for a lot of it. There are still certain situations where I experience balance or vertigo issues, but I now know what to look for or be wary of and I avoid falling. The hearing loss decreased some, but as that happened I developed a lot of tinnitus in its place.

    Basically the body is capable of tremendous things. With the right guidance and therapy I have been able to overcome a lot of what the damaged nerve caused/s.

    "C"
  • Our bodies are resilient! Glad you are better Sir.
  • I do agree that our bodies have an incredible capability when it comes to dealing with injury and disease. I am very grateful that despite the abuse I have put mine through, it finds ways to heal that I would never have thought even possible.

    Oh and my husband would laugh to know someone called me sir. I too am glad things are much better!

    "C"
  • Just goes to show you that Girls can be football fans too huh. There I went just assuming cuz of your Sea Hawks logo. Sorry Chickadee!
  • No Worries. I have been a Seahawks fan through thick and thin from the days when they were nothing more than an expansion team.

    "C"
  • jlrfryejjlrfrye ohioPosts: 1,136
    Sorry it took so long to get back with you. I have had surgery on c3-c7. My surgeon told me the dizziness was caused by severe stenosis at all levels. The dizziness I had before my surgery was horrible. Once the dizziness started I was unable to stand up and had to put my head down. I also had severe vision problems during my spells.
    My last surgery was about 9 months ago and I have had no issues with my vision or dizziness since. I really hope that they can resolve this issue for you. It used to scare the crap out me when it happened and caused me to become housebound. I was scared to death it would happen while I was away from home, which it did twice so I remained home until surgery. Let us know how this turns out for you. Good luck
    Susan
  • Thanks haglandc and jlrfrye,

    haglandc glad the rehab for your dizziness helped! It's amazing how neuropathways can be remapped. I took a neurology class right before I became debilitated by my spine issues. Your nerves can relearn how to function in an entirely different part of the brain by rewiring.

    Susan: i hope that i will find a solution to all the dizziness. tomorrow i meet with one neurosurgeon and hope to get some answers.

    Lini

    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • I met with the neurosurgeon and left without knowing more than I already knew. Tomorrow I am scheduled to get my second injection so that I will know if my symptoms are truly from C5 and C6.

    I'm really feeling like no one has any answers for me. My pain management doctor said that never operate until you can find out where the pain is coming from. Often what we see as the pathology on CT scans do not mean that the pain is coming from there. It's really like this mystery that needs to be solved!

    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • Hi LILI,

    I go tomorrow to see ENT, They do all the testing at 10a.m then see the doc at 2pm. Hopefully I will have some answers as well. Please post an update when you see your ENT doc.

    "I met with the neurosurgeon and left without knowing more than I already knew."
    Thats exactly how I have left my Neuro's office each appt as well. Typical I guess.
  • Please post after your ENT appointment. Mine isn't until Feb. 8th.

    Good luck!
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • Well, I my results from the ENT test were sketchy. My eyes during one of the test jerked diagonally vs either Horizontal/vertical. He's ordered both a Brain MRi and MRA, he thinks that quite possibly my cerebrial veins are not getting enough blood flow. Said it could be a benign tumor, but we won't know until we get Mri/mra back. He thinking that the dizzyness is surgery related, but doesn't want to rule anything out. I go In on Next Monday for the imaging. So I don't know much more either.

    Have I mentioned how I'm over seeing anyone in the Medical field. grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
  • Glad you are getting the MRI and MRA done to rule out vascular and tumor possibilities. Hang in there!

    I'm also extremely feed up, but I have to be patient. The last injection I received yesterday was in the facet joints. It did nothing for me. I felt the exact same pain before and after. Still more digging around for the site of pain. Anxious for the next injection.

    Will post again after next neurosurgeon visit on Tuesday.

    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • Hi, LiliInu,
    Your post and the answers from other fellow C-Spiney friends has been helpful.

    I ditto about those Neuro's :( sad when it is such a fascinating field of neuro-muscular medicine!

    Glad to hear you are getting further along on your diagnostics and getting an MRI MRA of brain - - my dizziness and more so constant balance issues (go into a fall and down before I know it :) got diagnosed finally with my MRI with vascular ischemia (narrowing of arteries) in two parts of my brain, cortex and temporal.

    Glad to hear they are being thorough in having that MRI done for you.

    p.s. Nothing done for my balance issues, other than I turn slower, get up slower laying down, sitting, etc. all compensating for getting easy-off-balance - - no meds. :)
  • Met with neurosurgeon from Columbia University Hospital today. He suggested an ACDF for C5 and C6, since the last couple of weeks I've started to develop neurological symptoms and they are progressively getting worse. Thursday I will be getting another nerve block injection for C3 and C4 just to rule out those nerves as the cause of pain. The neurosurgeon is requesting another MRI prior to surgery to see if anything has changed, sot there are no surprises when he is operating.

    I will be scheduling to have surgery soon, but want to be sure that C3 and C4 isn't also the source of pain, since I have a slight herniation at both levels at C3-C4 and C4-C5.

    I'm so anxious to have this surgery, but know that I still have a lot to do before the surgery. Last night I woke up in pain and couldn't go back to sleep.
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • Hi all,

    I have Disk C6-C7 a hearnia and C5-C6 degeneracia.

    This started in December 2010, I started PT, at first 5 times a week and now dropped to 3 times a week. Hoping then to drop to 2 times a week.

    Still get little tingles....pins and needles I call them in my left arm and have lowered alot of my pain medicine.

    My question is What sports am I allowed to do? What are the dos and don"t so I never ever go throught the pain I had in the beginning of December before I found out what I had.

    I understand swimming is great.
    But can I go jogging, running, holidays which involve carrying suitcases...etc...

    Hope someone can help me make a list of can do and can"t do.

    Wishing all of you a great recovery.
  • None of us are doctors or specialists, so only your physical therapist can answer that question. Glad to hear that PT is working for you in reducing pain.

    Good luck and hope you can avoid surgery!
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • Hi Folks,

    I'm finding this forum interesting. I've been fighting dizziness for years now. I experience dizziness daily but get re-occurring spells that are dehabilatating. When this happens, I also feel tension in my neck right behind my ear. I get temporary relief by applying intense pressure there. The pressure shoots relief from the back of my ear/head to my temple. Hitting the area repeatedly really hard with an object like a wooden handle brings me relief. You'd think I was insane & trying to knock myself out if you saw me doing this.

    I can't drive when I get a spell. Spells last anywhere from 30 minutes to hours. When I get spells, dizziness and brain fog stick around for days. I've had intense headaches that made me believe I was having a stroke in the past because of the numbness that accompanied them. Always on the left side and always accompanied with dizziness.

    To date, I've seen an ENT, audiologists and had 2 ENGs. Findings from this were that I have a nystagmus in my left eye induced by certain sounds. I've always had poor hearing in my left ear.

    I've been suspecting SCDS because of other symptoms such as:
    - Hearing my heartbeat in my head. Extremely loud during dizzy spells
    - Hearing my eyes move in their sockets
    - Intense dizziness by blowing my nose or inducing pressure in my left ear
    But 2 VEMP tests have ruled out SCDS (Superior Canal Dehiscence Syndrome)

    I should note that I had a pretty bad concussion 10 years ago by a blow to the back of the head. I suspect it may be related.

    I have an appointment with a Neurologist next. Seeing some of the posts below are comforting knowing that there could be a fix if I do indeed have a nerve issue. I'd be interested in hearing from people that have had a similar combination of symptoms which were relieved via surgery.

    Thx
  • I definitely think you are right to see a neurologist. My visit to the ENT this Tuesday only confirmed my suspicion: no inner or middle ear disorders. In fact, my hearing is just as good as a teenagers! The ENT suspects it's coming from my neck, too.

    I'm going into surgery tomorrow morning! Thanks to all you fellow "neckies" for sharing your experience and support. >:D<
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
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