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More neck issues

Hi peeps, I have been gone for a few months. I wanted to get some input from some of the old timers and perhaps some of the newer people.

I have a "rich" history of spinal problems. I had a 2 level ACDF c5-7 March of 2010 I also had 2 level PLIF L4-S1 Juliy 2008. I was Tboned the day I returned to work while driving my boss and 2 other employees in my van about 8 weeks after my neck fusion. I immediately started having thoracic spine issues. Eventually I found out I had extensive thoracic ddd and many hnp's among other things. I have been seeing a pm clinic for esi's and meds since shortly after the accident and am supposed to be getting a SCS this fall. I had a great trial.

That brings me to my current problems. About December my arms started hurting again, they are now hurting really bad with complete loss of use at times in my left, coming from my elbow, shoulder and into my hand and even my finger are tingling and numb. I had an emg test a couple weeks ago and it was negative ( nowhere near as extensive as the first one I had btw). She felt I have a muscle problem... Yeah, I am loosing all my strength for sure. Sharp electric shooting pain.

About 3 months ago my headaches started getting really bad again. I am waking up with one and going to bed with it, it is with me all day and affecting my eye sight. I feel as if my eyes are bulging out of my head.... I have horners syndrome as a result of my ACDf and also I have narrow angle glaucoma which I had the lazer iridotomy treatments for as soon as I found out last time I had headaches like this... So desperately I went to an ENT after trying a higher dose of Topomax for a month didn't work. The ENT doctor ct'd my head to rule out sinus's, it wasn't the sinus's. He said allergies... I have been taking allergy meds all summer but I said I would take the meds and they have done nothing. I am still having the headaches and the episodes of vertigo (that scares me the most).

Almost as soon as I sit in my car or my recliner i feel that it makes me very sleepy. I get tired on any trips in my car that are more than a few minutes. Don't even talk to me about driving for more than 30 minutes on the highway. It makes me think something is going on above my fusion and below my fusion.

I have taken 2 falls in the last 2 weeks, and find myself stumbling constantly. I fell forward he gravel 2 weeks ago landing on my knees and hands and then last Tuesday I went down the stairs and my feet went out from under me. I landed on my thoracic area again the stairs... Hurt like he11... I contemplated going to the hospital, but I was ok and I knew I would see my pm this next Friday. I also see my ENT on Monday.

I am going to request a new MRI on my neck and Thoracic before my SCS.... I don't know what doctor to see. My NS had referred me to another NS in his clinic for the SCS that is doing a study. Plus there is a third one I saw for a second opinion one she is at a different clinic.

Thank you for any input or advice,




  • sorry that you need to come back here, but it is nice to hear from you again.

    I think if I was you, I would definately want to explore what is going on before having any treatment. You want to have the full picture first. I believe that you can't have an MRI scan done with a SCS fitted, so perhaps having one of your neck and thoracic spine before anything else, would make sense.

    It does sound like things are getting more serious, as you are now falling, the headaches are getting worse and you can't use your arms sometimes.

    I hope that you will manage to find out conclusively what is going on and that there will be a plan to help you. Although the SCS may help with the pain, which would be great, if there is compression of your spinal cord, you would probably want to deal with that to alleviate it before doing anything else.

    Julie, please do come and tell us how you get on and what to discover is going on.

    Interesting that you had a PLIF and about 2 years later, needed a 2 level ACDF. That seems to be the position I am in! Not what I had planned.
  • I was just reading some studies about multiple fusions like myself and adjacent segment disease and it seems people who have severe DDD are many times more likely to get it.... I could have it above and below, infact looking back at my last MRI from last year at this time there is some evidence of the the problems below c7-t1 are bulging and osteophytes with foaminal issues. But above looked clear.

    I am terrified to go through this any more I am afraid to see a NS and I think that is why I keep
    Putting off making the call. For whatever reason this year I can't make a decision for anything... Painting my room (can't decide on a color because that means I would have to commit to work).... This is getting scary now though.

    A couple days ago my husband insulted me by saying it was from my pain meds, I have not had an increase since I got where I am (over a year), I have always been able to function just fine, and he said if he was sipping whiskey all day he would probably fall down too! That hurt my feelings, but he has been watching me basically pass out every time I sit down and he thinks it is the meds. I am convinced it is positional and has to do with my head and neck. Now I want to proven that it isn't, but also I want to feel better.

    Jelly I'm sorry that you are having similar issues. If it is any consultation I did feel so much better after my lumbar fusion until recently ( just had an excellent esi's in the lumbar). My ACDF worked great too for the first 2 months. Then the accident happened and I started hurting in my upper back. The neck issues just came back last winter and if the studies I am reading are true it is probably due to the fact that my DDD is bad and spreading.

    Feel better,

  • If your headaches are worse I would get medical attention right away and also go see your eye Specialist again. Do you have cervical stenosis at all? More info here http://www.spine-health.com/conditions/spinal-stenosis/cervical-stenosis-myelopathy.

    Also have you ever been treated with migraine meds? I have taken Imitrex and Maxalt for any headaches and have certain triggers like MSG and perfumes. Ice may help on the back of the neck also.
    Sorry to hear about your husbands comments. I try and avoid my husband most times as always something is my fault. Bully

    I would also not be doing any painting the room! Reaching over your head and smelling fumes could make the pain worse. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • JulieAJJulieA Posts: 1,420
    edited 09/15/2012 - 12:11 PM
    Thanks Charry. I am using ice a lot. I did call my eye doctors. I really hate one of the, but will call the one I like back again.

    I do have migraine meds but have not taken them since I have been on OxyContin CR and Oxycodone and Zanaflex. I am taking Topomax for nerve pain and migraine prevention 150 mg daily. I tried 200mg but I couldn't function on it. I also get facial numbness. I am not sure if it is a side effect of the medication of if it is a medical issue.

    I was tested for MS last year because my first brain MRI showed that I had some spots on my brain, the spinal fluid was not positive for MS.

    The ENT said he would give me another script for migraine meds, but I really don't want to take hem if I don't have to. I forgot to mention I am having blurred and double vision mostly in my left eye. He was convinced it is all allergy related and wants me to undergo allergy testing (I'm thinking great more freaking doctors).

    I appreciate your input, I am checking it the link.

  • jellyhalljjellyhall Posts: 4,373
    edited 09/16/2012 - 4:43 AM
    I asked a spinal surgeon about adjacent disc disease and how likely it is to get it, and if it is more common in lumbar fusion or cervical fusion.
    He told me that in his opinion it is more due to the genetic make up of the person than the level fused. I suppose if you have a tendency to degenerated discs, then fusing an adjacent level will put more stress on the adjacent level, causing it to degenerate even quicker. There are definately some people who have a fusion and are fine and never have problems again. Perhaps they will suffer again once they are really into old age, but they get many years of feeling fine and being able to live as they used to.

    That is what I had hoped for. The first doctor I saw, who diagnosed me with my spondylolisthesis and saw other problems on the MRI did tell me that I would always have back pain because I had lots of degeneration in my spine. It didn't really sink in, but now I am facing more spinal surgery on my neck this time, I am starting to realise what she was telling me!

    I just hope that the problems in my thoracic spine don't ever reach a stage where they will need surgery. Surgery at that level sounds horrible!

    I have been tested for MS this year, and the neurologist has said that he feels that all my symptoms are coming from the compression of my cord in my neck. He says that his opinion is that I will need to have surgery at some point.

    I hope that you will find something that will help your pain and headaches soon.
    Wishing you a comfortable weekend.
  • Thanks J.

    I just saw my PM. She is referring me to a neurologist. I am good with that. I was slightly disappointed that she would not order the MRI but she explained why. She said with my artifact in my neck it would be hard to view so if the neurologist wants to order one that is fine. She thinks he would go for a ct scar with myelogram first. I agreed. She said he will know when he does the exam if he thinks it's my neck. She said I can see my NS if I want an MRI...
    The vertigo she sas never comes from my neck ( not true as I have been doing a lot of research) but I didn't argue. It rarely comes from the neck, but it can come from the vertebral artery. I thought I had this before. She thinks it could be my inner ear. I started crying. I feel like no one is helping me. My eyes are killing, neck is killing, arms killing, etc... She suggested that I get selective nerve root blocks on my neck. I have been getting ESI's for my upper back religiously.
    I really hope I get some answers from the neurologist. The ENT was not very helpful. I have a new nasal spray that stops my post nasal drip but nothing for my other symptoms. Still having plenty of headaches, eye pain double vision, a little dizziness or vertigo, arm & hand pain, high pain and foot pain. The exhaustion is the worst.
    Ok, I will be reading, but posting is difficult. I am thinking of you all.
    Thanks or your support.
  • tammycttammyc Posts: 894
    edited 10/05/2012 - 4:56 PM
    I hope that your apt. with the neuro goes well. Reading about your problem sounds so much like the problems i was having before my surgery.Perhaps the car accident caused much more problems then you thought. My accident was only six months after my surgery and i was no where close to being healed and i've had continual problems ever since. I had bad headaches for almost a year after my car accident as i was doing physio they were helping me with the headaches as well. It was a long and painful process. Just please be completely sure that you know exactly whats is going on in your spine before you get the SCS done.
  • jlrfryejjlrfrye ohioPosts: 1,110
    edited 10/07/2012 - 1:32 AM
    I had the vision issues and vertigo while dealing with cervical stenosis. This continued until I had surgery. As for your pain dr stating it could not come from your neck well she is wrong. I was having quite a few attacks a week until my surgery was done. Since surgery 3 years ago it has never happened again. Hopefully your neurologist.will investigate and get to the bottom of your problems. Keep us posted
  • davidDSdavidDS Posts: 2
    edited 10/19/2012 - 6:45 AM
    Almost every time I yawn I fell something like a muscle or bone poking on my neck just below my jaw. It pokes and then i have to manually push it back until i yawn again. I'm not sure what it is and hope you understand..
  • Julie,

    I well it just bites to have more issues going on, but one thing that sticks out to me is the tired feeling. I went through that awhile back where I was so tired I somedays I literally had to pull over and go in some place for fear I would fall asleep at the wheel. I would get in the car and drive and all of sudden I would have to sleep, no matter what I did I couldn't come out of it. I would put the window down for air, nothing matter, the only thing that helped was getting out of the car. I could have had plenty of sleep behind me, and it just came out of no place. In the end I had to have another level added to my fusion, and it stopped.

    I am not saying that it is related to your neck but it is a very real possibility, so the fact your seeing a neurologist, says your on the right path. I do know that no place I read, did that symptom come up, but I know the surgery stopped it. What made me do the last surgery was not that, but I lost my bladder, in that I couldn't relieve myself. So don't be me and let it go on. I can understand being hurt by your H's comments, but also understand they can't feel what we feel either.
  • I saw the neurologist yesterday. OMG what a waste of time. I was so hoping that she would start looking at me and running some tests. I am really feeling terrible. Something is really wrong with me and I am really getting scared. My headaches are blinding. I am literally loosing the vision in my eye, falling down, can't move my head up for fear of passing out... I feel like I am starting to fall every time now. It is not getting better. My arm is a mess and I am so weak. She is a traveling doctor who is working out of the clinic I was referred to. I was supposed to see someone else but I was in such a hurry to get in that I thought it would be okay. Stupid!

    So I have the EEG, I take all of my MRI CD's, CT myelogram CD's etc I go into my appt and she says you have a bad back with referred pain in your shoulders. She didn't even open my file or look at anything. ... That's life when you have a bad back have the SCS put in and learn to live with it. If you need to see us again come back. She also tells me to stay away from to many doctors because I am telling her that I am not feeling well, and I am trying to get answers so I keep going to see different doctors trying to find out what is wrong with me. None have been able to help me to willing to order any test to see if I have brain tumor or any new herniations above my fusion.
    She says I don't have any thing like that... How can she tell? I know I have myelopathy, she says I do not have it. I have had it for at least a year and it has been getting worse.

    I am starting to have issues releasing my bladder and such. I did call my neurosurgeon. The Boston Scientific Rep and I had a couple good conversations and she suggested I get in to see him right away. She sent him and email about what is going on with me and he has promised to get me in as soon as he can. I am on the books for Nov 17 but hopefully I will get in before then.

    Have any of you developed a slight tremor in your head or neck? I seem to be developing a tremor in my head and neck hopefully it will go away when I start feeling better

    Thanks for the input and support,

  • Fire and WaterFFire and Water Posts: 8
    edited 10/16/2012 - 4:29 AM
    I know how frustrating it can be to bounced from one doctor to another. It's ridiculous how noone has addressed your medical needs. I know this sounds extreme but I would go to the ER and say I am falling down; I have lost sight in one eye; I have pain and numbness in my (left?) side. I am desperate for medical help and I do have insurance.

    I would not mess around with this anymore. I mean what if you do have a tumor? Sometimes the incompetence of the medical professionals floors me. You need to be in a location, like a hospital, where you have all the doctors you need in one location.

    Sort of like a Mayo clinic, but those have a waiting list of over 6 months.

    I am recommending this drastic step as you have to stop falling! God knows what damage these falls are doing to your spine!

    And a car accident 6 weeks after a neck fusion. Wow. That is horrible. Do you have hardware at least?

    Not trying to be an alarmist. Just being realistic.

    Also I would bring your current scripts with you. Just in case the ER staff thinks you are drug seeking, you can prove that you are not, as you already have the drugs. What you are looking for is a diagnosis.


    Take the high road. There's less traffic up there.
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