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after total cervical fusion?

abbeyjoyaabbeyjoy Posts: 23
edited 06/11/2012 - 8:47 AM in Back Surgery and Neck Surgery
Hi --

I will try to be brief, for one thing I have a migraine. It seems I end up each day this way, with such a bad headache I am usually lying in bed by now.

I have had two cervical spine fusions resulting in a total fusion over the past 14 yrs. Now I'm really concerned that they are beginning to weigh down on the disc underneath. I really don't know where to go from here. I guess its the T spine? I was told years ago that it was possible that I would have to have this repaired at some future point, but I always convinced myself, NO more surgery. Esp. after the last one in '05, I still cannot swallow very well.

Anyway, my neck is so painful and worse, these headaches are such that they build up during the day, my ears hum, I feel tingling and numbness in extremities, dizziness, etc. The same symptoms as before the cervical fusion, only worse. :( My nuerologist is giving me meds for the migraines but they continue.

I'm trying to put off going to a doc till after 11/1 when I will finally go on Medicare/Disability. I am 60. All of this is the result of a head/neck injury when my car was totaled in 1991.

Can anyone relate to these symptoms? Has anyone had to have surgery under a cervical fusion? What did it involve? Thanks for any help.


  • Occipital Migraine? That is what mine are called. They don't react to migraine medication.

    Welcome to Spine Health. Sorry that your having a hard time. Holding out until November might be hard. Do you have any pain meds? Do they help?

    I had headaches pretty much daily from before my ACDF until I went on Topomax. Topomax helps comtrol the number of headaches but doesn't do anything for the pain.

    I use icepacks (the large gel packs) and heat (bed buddy thing that I stick in the microwave to help. And of course the normal meds that I take help. If you can have a message of the temples that sometimes helps too.

    Feel better >:D<

  • Welcome to Spine Health! As Julie pointed out, it sounds like you might be getting some variant of Occipital Migraines, and they are bad! Mine start behind my left ear, and wrap around to my right when it's a bad one. Are your in the rear of the head, or near the ears?

    Cervical fusion/disk issues can also cause full skull like headaches. I'm glad to see you are addressing these with your NS. I too hope you find some relief, and can hold out until you see him. Another medication that might help is Imatrex. I hope you feel better soon.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • ((((Thank you so much)))) for your help and encouragement. :-) I hate to know anyone else is suffering with these headaches, but I almost began thinking I had a tumor or something worse? My neurologist said she would send Topomax and I need to take it daily till Nov. 1st.

    Do you know if the fusion is weighing down too much on the T spine, would it cause these? Do you ever get over them? Yes - Julie and Avi, I take pain meds, use the ice pack, heat wrap, buy the adhesive patches, etc. I keep holding my breath till the 1st, but then I'll probably have to wait several weeks to get into this specialist...I could cry (I do sometimes, you know the pain).

    Do you think he will tell me to live like this :( Surgery :( Or is there a magic bullet that I don't know about? I'm sorry to see both of you were involved in accidents, too. Life can change so in a fraction of a second, can't it? I am grateful that I'm alive, but ohhh, if I can just get this under control. Thank you both -- I hope you feel better :-)
  • Abbeyjoy,

    Unfortunately none of us can say "yes you will need surgery", "no you won't need surgery", that's going to be something you and your surgeon decide after he/she does all the testing to see what exactly is going on. I am glad to hear that they are addressing your headaches presently. :)

    I don't remember how long ago your fusion was? Remember the loading and dynamics in your neck and spine are forever changed with even one level of fusion. Our posture changes, how we interact with daily activities, how we do things, etc. That alone can cause spasms and tight muscles, and given the right ones, can cause or induce headaches. Other causes of course are issues going on within the spine.

    Hopefully once your Medicare kicks in, your doctor can order the appropriate tests to see if there is an answer there. Please let us know how it goes. I truly hope the Topomax gives you relief!! :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Thanks so much for your honest answer, Brenda :-) I guess I want answers NOW...and I know in my heart none of you can give them. I'm just beginning to get afraid :(

    My first neck surgery was in 1996 and it went well. I expected the same with the second and complete fusion in 2004. NOT. I couldn't swallow almost at all to begin with and was on steriods -- my laid back husband even slept at the side of the bed because he was afraid I would stop breathing, it was so labored. Then the fun began with healing, which eventually it did -- swallowing issues remain. I promised myself I would NEVER have another spinal surgery after that experience. It was done by the doc who did Christopher Reeves surgery...I was blessed to get in to his surgery. BUT even he said it was a difficult surgery :( Obviously he doesn't do anything under cervical and I would never be able to afford him with insurance now...remember, NEVER say NEVER.

    In '04 or '05?? he told me I would eventually need the underlying disc (s) looked at in about three years. I've done everything I can to keep from doing so. But now, I am almost sick daily between headaches and neck pain. Brenda, were you told that in 2009 with your fusion? I really hope you are having no pain and will experience none of this in the future. I had a concussion also in the accident, so I've been dealing with headaches for a long time...but these are almost impossible? I have never heard of Occupital Migraines? but yes, they follow the same pattern you described. Mine seem to start with my ears and eyes, then I almost feel like I'm losing hearing in my left ear (trauma was on left side of my head) I may have an aura, always neck pain and then it begins to encompass most of my head. Sometimes my vision is so cloudy, I even had my eyes checked? BUT...it does make sense now.

    Thank you so for your help. I am hoping this topamax will help. Just picked it up but it says not to take until bedtime...wishing it was bedtime :-) BTW, are your sinuses more stuffy and then drain when you are sleeping? This all came with the package? Sorry for crying on your shoulder...thanks for letting me.
  • Abbey,

    My shoulder is *your* shoulder. Okay? *HUG* As you can see by my avatar, my surgeon (same one) used different hardware. Due to it, the C6 vertebra cracked clean through - the crack follows the screw thread pattern to a T! This movement has my voice constantly changing, and sometimes only at a whisper. I have 'choke outs' with liquids, and even when my sinuses are draining like crazy. Why? My vocal cords are constantly swollen, so they don't close 'flush', they close bowed, and as such, liquids and some food slip past and I choke. Yuck!

    I have a large deviated septum that I need to finally get fixed, but been dragging my feet. It might reduce my sinus issues - so I am leaning towards getting it done. I earned my 'bent' (a little to me) nose, so kinda wanna keep it! (sheepish grin)

    Since the bone cracked about 5 months ago, now I am in the "lets see if it refuses on its own" game! Argh! Considering I am getting more and more flares of late, *I* don't think it is going to behave, but trying...trying...trying to be patient! (G)

    Did you describe your pain (headaches) in megga detail to your doctors? I ask that because the issues with your inner ear, and the blurring of the eyes can be issues with nerve levels higher up. The Occipital areas are and more towards the C3 nerve. But again, before any worrying, let the doctors do their tests...it could very well be from spasms. Fingers crossed. :)

    I know already that if my vertebra doesn't "self fuse" they will have to revise this mess. But the next level is going (lost most of my Ulnar control), so that will be the third level. Sigh.. I've now wrapped it around my brain that another surgery up in the neck is likely. My C2/3 has been staying about the same, but that is in the background of thought for me. I think nerves should be seen, but not FELT! (G) Happy to help if I can Abbey. *HUG*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • ((Brenda)) you poor thing...I am so sorry you have been thru so much and you are so young !! I wish I would have copied 'doctor's dx and notes' but I didn't and somewhere in my filing system (YIKES) they are lurking. Maybe I need to search so I can see what he said. My swallowing issues sound similar...I'm so sorry for you sweetie. I thought it was crazy, but I even choke sometimes on sinus drainage at nite?? At one point my primary sent me for a sleep study and they said I had many 'obstructional breathing episodes' a night? You probably do too.

    No, I didn't tell the neuro about the exact symptoms of these newer migraines. She has given me botox on top of my head, down the back of my neck and for dystonia for several year 4x yrly. (I'm sure I have NO wrinkles in my hair :-) But, they are out for now until we see what Medicare does in Jan. But this past time, they didn't last but less than a month. I've been taking pain meds since the accident but those injections seemed to lessen the frequency of migraines. These are occurring daily.

    My vocal cords are doing much of the same things? I didn't know why...but it makes sense. I'm so sorry your bone cracked; how sad. I hadn't realized you'd been thru not only c surgery but also t. The docs had been saying that newer hardware was almost okayed -- that was several years ago. I'm wondering if this is something that will be available to us, or because we have the old stuff, will we have to stay with it? If you have to have another surgery, will they go thru the front as before, or do they go thru the back with the T spine? I really hope you don't have to ((()))

    Thanks Brenda--Hugs to you too...

    BTW, we lived in Key West when my husband was in the Navy in the early 70's. Would have stayed in Florida if our families weren't here in STL...still miss the ocean so.
  • Howdy Abbey,

    Not so young, but not old yet! (G) What's funny is it took an ENT to realize that there is movement in there, and that is why my voice is ahhh a bit odd at times! My NS basically ignored the x-ray! No surgery to the T spine yet. The closest will be when they add the C7/T1 - lower down hopefully won't be a surgical issue for years if ever (fingers crossed).

    As for your headaches and such. Are you keeping any kind of log to show what hurts when? Stuff like:

    When your headaches occur?
    How bad they are and the course of how they start and spread.
    What activities cause them?
    Medications that *do* help.

    Things like that. I knocked a good bunch of the bad ones off by something amazingly simple. Mine mostly come from my C2/3 - I chew food in the size of Dentyne Ice gum! I had a hot dog one day, and within minutes, megga headache. Didn't connect at that time. A few days later I had a large hamburger, yep, megga headache again.. A steak a few days later...same. Since then I've switched to small bites - less hard chewing, most of them are now gone. I still wake with them if I sleep flat!

    I put those out there to give you ideas of things to try. I don't know if jaw movement (wide mouth) is causing any of yours, or maybe how you sleep?

    In answer to your other question. From what I was told, they go in the front first (diagonal incision) take out the old hardware and most of the graphs and any bone with issue. Put in new graphs and hardware. Then they flip you (me) over and go in from the back (posteriorly) and add rods and more screws to shore it all up. Yummy! It would be 3 levels so far. Not sure if they do the same for say a 1 level, dunno. :)

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

    I do need to keep a log of these 'new' type migraines for when I see the neuro next month. I didn't think of that either. Thank you :-)

    Swallowing is such an issue. I haven't had steak since '05, pretty much only chicken or hamburger, etc. I've never thought about jaw issues tho. I will try to see if there's a connection. I have a problem sleeping propped up; go figure? But cannot sleep on my back either. It seems like I can't breathe.

    Wow, I hate to think about them having to go thru the front neck again for anything. IF they have to go in, wish they could do it all from the back...oh well. Only time will tell. I hope its not in the future for either of us.

    I also have neuopathy in extremities which has worsened even with higher dosages of Neuontin. Muscle relaxers, anti-inflammatory, pain pills, are among my evening 'cocktails'...now I'll add Topamax. But, IF they help-- I'm no hero !! All of this chronic pain has led to years of fibromyagia too. It doesn't help that I have a large curvature of my lower spine (scoliosis). You are right in that we carry ourselves differently and don't even realize it.

    Take care and hope you are having a 'feel better' day :-)

    Thanks my new friend -- Abbey
  • Abbey,

    A log is also good in that *you* can sometimes see changes for the good or the bad. It also brings to light for your doctor a 'snap shot' of what you are going through. Sadly, many times we go to the doctor, and he is in and out in like 5 minutes! A log can talk "for" you. :)

    Neuropathy stinks! I have it in my legs and right arm. Symptom wise, I think it is also starting in the left, but not that bad. Lyrica for me does a very good job at keeping it at bay. Yup, got the weight gain, but slowly sneaking that down! (G) As to necks and re-dos. I know they will be going back into mine, it's just a matter of 'when' as they say. :)

    I'll keep my fingers crossed for you. *HUGZ*

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

    Thanks for the tip on the topamax; I do think it is helping, altho she only started me out on 50 mg. and by evening my headache is returning. What mg. did you end up on? But I woke with NO headache...YAY !! However, my upper back is still hurting. I guess that will have to wait till I see a new back doc?

    I'm so happy Lyrica worked for you. I couldn't take it for it made my muscles very weak. (a side effect). For some people the new drug Savella works too. I wish I could take them. I'm supposed to get an ok on Celexa tomorrow from my primary. Hopefully it will help in place of lexapro (price diff).

    Yes, headache time is returning and along with it computer hurts my eyes :( Hopefully, next week I will be able to explore a bit more of this site. Thanks for your help, Brends. Hugs, girlfriend....Abbey
  • Abbey,

    Glad to see you are getting some help with Topamax!! For me, I am back to Darvocet for mine. I'm bassackwards in that if I sleep flat on my back, or on my right side, wowzers with the headache when I wake up! If I sleep with my legs and head up, small one when I wake - Aspirin will catch it. If another surgery comes up (with fusion on the table) then I switch to Tylenol for headaches, or bad ones...sigh...Darvocet.

    Nodding, except for the weight gain, I've not had a lot of bad 'side affects' from it. I haven't asked to try anything else, as this is working, and I have a bad history of "bad side effects" from various types of medications. As a matter of fact anymore, when I get a new prescription, I make sure the hubby is home for the first few doses. If me and the drug don't get along, I know it by like dose #3. :) I hope your change works. Please let me know how it goes. *HUGZ* :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • :-( Well, Brenda, I think I spoke too soon. I've been waking up with headaches on the Topamax for days now, I'm going to try without it tonight. I've been taking my Darvacette again too. Went to my primary Friday and she said I needed to see the neurologist for the headaches and the neck pain...and so the vicious cycle goes. I will try to make an appointment with her before the end of the month and SS kicks in, for I'm not sure how Medicare goes about paying anything starting off? What if they deny paying because its too soon? Same with my supplemental, even tho we paid for it already? Do they have a waiting time? It gives you a headache just trying to figure it all out :(

    I'm sorry to cry on your shoulder yet again. I'm so depressed. I have had my anti depressants adjusted and know that besides the chronic pain, tomorrow is the one year anniversary of my Dad's death and its been an emotional time for me. I was so close to him since my Mom died. Sometimes I think of things I want to do before we get too old to do them, but then I feel so bad I could cry. Do you ever get tired of fighting the battle? Of course you do. I won't give up; God won't give up on me. I just need to feel better.

    I hope you are feeling better yourself :-)

    Thanks for the shoulder....again. (((Brenda)))...Abbey
  • Abbey,

    No problem on the shoulder! Brenda takes Abbeys head and lays it on her chest...badump, baaaahdump, badump - heartbeats always settle the soul! :)

    So sorry about your dad. When you were real close, it makes it doubly hard. Try and remember the good times, and then close your eyes, have those good times. This way he is still with you, as long as you have those memories, he is there!!! Those things you didn't get to do? Same thing Abbey, close your eyes, and start doing them. It really does help. *HUG*

    As far as I know there isn't a waiting period. Once you have confirmation of the 'affective date', then you should be good to go. Did they send you a Medicare card yet, or your selected A or B parts? You might (guessing here now) be able to show your doctors office the 'active' date and go from there.

    Sorry to hear about the headaches coming back. Have you tried different sleeping positions or sleeping propped up at all? I haven't tried this, but others on here have suggested sleeping in my hard collar. Do you have a collar? Lately my neck screams at me when I look up or lean my head to either side. If you have a specific position your neck hurts, you might be aggravating it when your sleeping? Gentle *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Thanks once again, sweet Brenda ((())) I'll take those heartfelt beats-- each of them and use them to help me envision all I need to get me thru this esp tuff day without my precious Dad. I still have sooo much of him with me. He was a writer and journaled daily...I haven't been able to read the journals yet, but I think now they will be a 'gift' I will give myself :-) Time helps to heal.

    Yes, I have my A and B and my card. The supplement will be G -- I think. Its strange, because its not even bought thru Medicare; neither is D?? No wonder its so compicated.

    Sorry about your neck screaming at you with movement; mine does similar plus I get off balance -- do you? I gave my hard collar to a lady who I was talking to in the waiting room. She asked for it as I was leaving and I gladly gave it to her--I never wanted to see it again. Uh-oh. I do have my soft collar so I may try that.

    I have to run (yeah right :-) have to take aunt to an appointment, but I wanted to thank you for caring. You have a BIG heart and I feel your concern for others..you've taken a horrible situation - lemons and made lemonade. God bless you for blessing others. ((()))) Abbey
  • Abbey,

    I hope you find immense pleasure in reading your dad's journals. Who knows you might learn more things about him! I hope they bring you heartfelt pleasure. :)

    Wow, you gave your collar away to a stranger. Pretty cool! That's very nice of you. :) Very nice indeed!! As to the soft collar, that might work. I guess by putting the collar on when you sleep, it straightens you of course, but too maybe a bit of soft traction to stretch things out? I know from past post ops, I actually slept more comfortably in the hard collar vs the soft? How odd is that?

    You're very Welcome on caring. That's what we're all here for. :) *HUGZ*

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