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Possible Second ACDF

jenb13jjenb13 Posts: 27
edited 06/11/2012 - 8:02 AM in Neck Pain: Cervical
Hello All!

It is a bit depressing for me to be back on this forum :( A little over 2 years ago I had ACDF surgery on C5-C7. My recovery was pretty good, but the last 6 months my pain has been slowly creeping back. As we were getting ready for surgery 2 years ago my neurosurgeon told me that the C4-C5 was also not great but I shouldn't have to worry about it for another 5-10 years and he did not want to fuse all 3 levels all at once. Here are my latest MRI results....

C4-C5 - Disc Osteophyte complex with superimposed left formaminal disc protrusion flattening the left anterolateral aspect of the cervical spinal cord and markedly narrowing the left exiting neuroformen without significant spinal canal or right exiting neuroforaminal stenosis. Non-Expansile intramedullary T2 STIR hyperintense signal measuring up to 18mm in craniocaudal height a nonspecific finding likely representing myelomalacia. The possibility of a small syringohydromyelia cannot be excluded.

C5-C7 Disc osteophyte complex partially effacing the ventral thecal sac - Post fusion changes CT is needed

I am a 31 yr old that has cervical stenosis and remember having her first "stiff neck" at age 12. I am very used to living with neck pain, but some days it feels like it is going to suffocate me. I only take a pain killer when I absolutely have to, which is only about 1 a day. The pain now is mainly down my left shoulder and tingling in both hands. I have seen the Neuro once and he gave me the look, of "I really do not want to do another fusion on you but that may have to be the case". He sent me with 2 packs of Steroids and then wanted me to try Voltaren. The first week of Steroids KILLED me, I was in so much pain and was so cranky I didn't want to take the 2nd week. I was told that the drugs were not making me worst it was just emphasizing the pain. I also had a CT scan done which only stated...C4-C5 - Hypertrophy of the left uncovertebral joint with mild left forminal stenosis.

I see the Dr. again on 5/18 and don't know what to expect. I know there are no questions that I am asking outright, just venting, ha!
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Comments

  • "It is a bit depressing for me to be back on this forum A little over 2 years ago I had ACDF surgery on C5-C7. My recovery was pretty good, but the last 6 months my pain has been slowly creeping back. As we were getting ready for surgery 2 years ago my neurosurgeon told me that the C4-C5 was also not great but I shouldn't have to worry about it for another 5-10 years and he did not want to fuse all 3 levels all at once. Here are my latest MRI results...."

    I am so sorry you are going through this. :-(

    This sounds so similar to my situation, it was kind of creepy reading it ;-)

    I had my ACDF on C5-6 about 3 years ago, I am 32, cervical foraminal stenosis, DDD, and then some. I am in the process of trying to get in and see my neuro. I have the arm pain and tingling back again and it is really freaking me out. Seems like a never ending vicious cycle!

    I have been seeing a pain management doctor for about two years now, have had two sets of injections in the last few months, to no avail. The only difference is I am on a mess of pain meds, unfortunetly, but they are what get me out of bed in the morning.

    I feel for you. I know how awful it all is. I so dread hearing those words "surgery." But I guess it is what it is. If surgery prevents further damage, then it is worth doing.
  • Well I can say as if i envy you, as I been down that path with multiple surgeries behind me. Some things you should consider when seeing the surgeon again, is to have a list of questions prepared if he/she does say surgery. You might be asking if they will be removing your old plate and placing a new plate in? Wether or not they will use the existing scar or making a new incision? Can this be done from the anterior approach or will it need to be done posterior? What are the shape of your other vertebra, as this surgery will place the stress load in different places.

    I understand it is not what you want to hear, but then maybe this is what will make you begin to feel better again. The one thing for sure is you know what to expect going into the procedure and what the recovery is like afterwards.

    I will tell you that feeling of being suffocated I have yet to resolve that issue, and am not quite sure what it is. It has gone away for sometime, but is back again, and it a terrible feeling. The only suggestion my doctors have for me when it happens is to lay down. I already take plenty of muscle relaxers so that is not really helping it. Seems to happen the most when I am driving, from the outward placement of my arms and the pulling on the wheel and the constant looking around. You might want to track what your doing and when it happens to get a better idea to tell the surgeon.

    Good luck on your appointment and keep us posted on what is said. Hopefully just fixing the one level will work and you will once again be doing fine.
  • Thanks Mel and Tamtam.

    Tamtam those are great questions! On my first appt I did ask about using the existing scar if we have to do surgery and he said that can be done. I will ask about the plate. 2 years ago I asked about the possibility of a inplant instead of fusion and since a lot of my issues stem from arthritis and stenosis he said my vertebra would not be compatable with the inplant. I was really hoping for the inplant option since I was so young and active.

    At my job I am maining doing computer work and that is when my left shoulder and hands start to really feel the pain, like I always have to move them and if I do not then I feel suffocated. I have muscle relaxers but cannot work on them so I only take them at night when the pain is too much and stick with Vicodin during the day. I have taken up Yoga and that has helped with some of my shoulder stiffness but there are many positions that I cannot even attempt.

    This forum is so great, almost as soon as I posted yesterday my depression lifted a little. It is great (but sad) to hear that so many people are going through the same thing.

    I will keep you posted, thank you again
  • I remember saying those words over & over again after my fall. Although most of mine were one-offs, I did have a repeat,possibly a 3-peat on my shoulder. So far not on my neck. ;)

    Since some of the problems at work are computer related, is there a way to repostion your screen and keyboard so there is less stress on your neck and arm? Does your chair have armrests to help share some of the weight on your affected side?

    Hoping you will feel better,

    Dee
  • Dee- I actually had to go and buy a new chair with headrest for my desk at work to try to help the strain, it does help but only if I use it. I feel myself leaning toward the screen instead of sitting straight, I am trying to do better though.

    I did have my dr. appt on Friday and he took a look at my MRI from 2 years ago ('10) prior to my first surgery and then at my present MRI and it shows that the Disc buldging at C4-5 was flattening my left nerve root in '10, and the new MRI shows that it is not only flattening the root but now encroaching the left side of my Spinal Cord. I am scheduled to get an EMG in a month and to see my Neuro again in 2 months. He said that it has gotten a little worse but he is not sure if it is quite to the point of surgery. He does not allow injections in the cervical spine, only lumbar. He did not elaborate on why but said if I wanted to try he would argue his case then.

    My concern now is do I just wait it out and wait until it starts to cause more damage to my spinal cord or opt to do surgery to minimize damage? I go back and forth. Since this is all caused by DDD and stenosis, the unfortunate part is that it will not get better on its own, nor will therapy help and I have tried a Chiropractor and he just made my symptoms worse. What do you all think?

    It was much easier the first surgery as I had no choice since both discs were severly compressing my spinal cord, once I had the MRI and had my appt with my Neuro surgery was scheduled that day. 3 weeks later it was in recovery. No time to think it through.
  • Hi jenb13 I am scheduled for an ACDF C5-6 on July 10, 2012 and reading your history it seems similar to mine. In 2008 an ortho recommended a three disc replacement as I have four herniated disc, stenosis and nerve impingement, I first saw neuro in April and they wanted to schedule surgery the next day, I am unemployed and my wife works part time plus my two girls are involved in activities until late June, plus wife already had vacation set up for July. It seemed better to wait until July, but what scares me is neuro said the other disc might start bothering me in 5-10 yrs or never, I believe I will have more problems in neck and also lumbar, that's messed up to. Reading your post I am having visions of going through same thing you are in a few years. I am so glad to have found this site as their are plenty of complete strangers whom not only understand exactly what you are feeling and going through but care enough to share knowledge and let us vent on bad days. I thank God every time people respond to my post with kindness and usually with great answers. Feel free to pm me or just vent when having a bad day. Keep us posted on what happens. God Bless, Joe
    ACDF C5-6 July 10, 2012 with plate and screws.
  • Jen,

    Sorry that you are having to make that decision again. I know we all run that risk after surgery.

    I too have DDD, and realize that ups my chances for a repeat sooner than later. I'm supposed to have a total shoulder, but go back and forth with that too. I'm only 57 & don't want to have it done yet. But it gives me muscle spasms, which gets my neck started, and then it's just a vicious cycle.

    It's so hard to try to balance out all the pros and cons. IMO, if I thought I was running the risk of more permanent nerve damage I would do whatever I needed to avoid that.

    I hope that your are able to find a solution soon. Sending my thoughts your way,

    Dee
  • Jen,

    My very first thought is to wait the two months out as your surgeon is suggesting and see how your feeling. Kind of the reason I say that is, one if he thought it was a emergency I am sure he would want to do surgery now. Also depending on your insurance it might not qualify yet. I say that rather easy as most of the surgeons know exactly what it needs to be for each individual insurance. But he may also be watching something else, and making sure there is no problems.

    I also like the idea of getting the emg, although they are not the tell all, as sometimes they can give false negatives. But they will pick up nerve damage, just not always perfect on a compression of the nerve. But it gives the surgeon a base line to work from, if one is needed in the future.

    Now of course I would jump on any roller coasters or do any heavy lifting in the meantime. I would more or so treat some what close the restrictions you had post surgery and who knows it might get better, and they do sometimes. I always tell people to use surgery as a measure of last resorts. But keep us posted on what you decide as only you can decide what is right for you and your individual situation.
  • I wanted to update everyone as it has been a crazy month and a half. The EMG did come back positive as I had denervation in my left bicep and deltoid. That had my Neuro instantly saying "Jen, we really need to take care of this to try to prevent permanent damage". Surgery is scheduled for August 9th. As frustrated as I feel I get emotional thinking about being pain free for the first time in years. Not that I think I will be completely pain free but you all probably understand What I mean :-) He will have to make a new scare but will be taking out the old hardware and placing new. I am hopeful that all my other disc look relativelying good that I will not have to think about another surgery any time soon.

    Urgh
  • I'm catching up on this thread and can totally empathize as I have had 3, two-level, cervical fusions over the last 11 years. One was in 2001, then 2005, then 2006. I still have 3 severe herniations. One below the cervical fusion that is from C-7 to T-1 and then two in the lumbar area. But at this point, my Neurosurgeon and I agree that we will not do another surgery unless it's an emergent situation and direct threat of actual paralysis.

    A few questions....

    I see that they did a recent EMG...but have they done another MRI since the one two years ago?

    And have you gotten a 2nd opinion from another Board Certified Neurosurgeon that you need this second surgery? The 2nd opinion should be from a Dr. that doesn't know the first one.

    They definitely made new scars in all my surgeries as it's not worth cutting through scar tissue which makes it harder on them as well as worse for us. But the first one is almost completely gone/not noticeable....The other two are no biggie to me at all.

    The larger one I have is from the posterior approach that they did on the last surgery. They went in from the front AND the back to really shore my neck up with plates/rods/screws on both sides.

    And I can't tell from the thread (although I may be reading it incorrectly..LOL) but are they fusing a different level than last time? Or the same one? And is it just one level this surgery?

    I do have to say that almost all my nerve pain went away with each surgery but I still live with chronic pain due to the muscel/bone/scar tissue. And I have some permanent loss of strength, about 35% in my right arm and 15% in my left but it's really not that noticeable except once in awhile.

    But we are the smaller percentages on these types of boards. There are hundreds of thousands of people who have had surgeries and are doing really great and never come online to post about it. So the majority of things we read online are going to be slanted towards the negative.

    So I will pray that this surgery really does help with the majority of your pain!!!
  • Hey! Thanks for the post! That is insane that you have had 3 2-level fusions.

    I had a new MRI in February, that prompted a CT test and then an EMG. My Neuro is very conservative and I trust him, he did not want to do this second fusion yet but the test results from the MRI and EMG showed it needs to happen.

    For my first surgery it was an emergent situation and it was for c5-c7. At that time my C4-5 was not great, but he thought that since it wasn't as emergent to only do the 2 levels and it would be 5-10 years before I have to worry about 4-5. This surgery is just the 1 level so it should be an easier surgery, it will be ACDF.
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