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    Old 10-27-2009, 02:19 PM   #1
    binx
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    need advice whether to have c5-6 ACDF

    forgive me in advance for the length of this post. also i am sorry if this is duplicate information for some of you, but for anyone who hasn't read any of my previous posts, i wanted to provide some background.

    in the first week of january 2009, i had a sudden onset of a twinge at the base of my skull on the left side, became a bit lightheaded and developed a sub-occipital headache which persisted for about 10 days. during that time, i had a number of neurological symptoms present such as eyelid twitching, random finger and other muscle twitches, scalp tingling, nausea and visual disturbances, but no neck pain. i also had muscle weakness in my legs and arms. after numerous visits to my GP who insisted it was a virus or anxiety, i finally got in to see a neurologist who ordered brain and c-spine MRIs in march. the brain scan was clean, but the MRI revealed cervical spondylosis and myelopathy--specifically there are bulges at c3-4 and c4-5 and a herniation at c5-6 that is pressing 2.5mm into my spinal cord. i also had an MRA and transcranial doppler to check the cranial vascular system with normal results. the neurologist indicated PT would help and sent me on my way.

    i self-referred to 3 neurosurgeons and 1 orthopedic surgeon with 3/4 of them recommending surgery right away. one NS said to try PT and rest for a few more months which my husband and i decided to try. we did so with little improvement.

    i have continued to experience my symptoms pretty consistently over the past 9.5 months with some days being better than others, with a few new ones added to the mix, including neck and shoulder pain. some of my symptoms have been atypical for a textbook herniated disc which made one NS drop the MS bomb on me about a month ago. since then, i have revisited my neurologist who assured me that i am at low risk of having MS since my brain MRI w/ and w/o contrast did not show lesions. even so, i had a visual evoked potentials (VEP) test yesterday which the tech was kind enough to say was normal, thus making MS even less likely. i haven't had a lumbar puncture, but my neurologist said if the VEP was normal, he would not pursue the lumbar puncture and MS would be at the bottom of his lists of concerns.

    so now i am left with a clear-cut diagnosis--cervical spondylitic myelopathy, but am still presenting with some atypical symptoms. my husband wants me to schedule ACDF surgery for the first week of december since we know it needs to be done to relieve the spinal cord compression and prevent further damage to the cord.

    i am really, really scared. i am scared of the surgery for one, but i am also really worried that i may undergo a procedure that will leave me subject to more surgeries in the future, and i have some other underlying neurological problem that the surgery won't fix.

    i know others on this board have also experienced some of the atypical symptoms that i have, but when that NS planted the MS seed in my brain, i have been hard-pressed to not let it grow into a creeping vine that invades my waking and dreaming thoughts.

    i have to make a decision soon, but i am feeling almost paralyzed and unable to make the call to my NS office to schedule.

    can anyone help me?

     
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    Old 10-27-2009, 02:32 PM   #2
    Linda1652
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    Re: need advice whether to have c5-6 ACDF

    Myelopathy really leaves you no choice. I am surprised a Doctor would advise to wait on the surgery if you indeed have this. Most Doctors tell those with it that they could become paralyzed if involved in a freak fall or car accident.

    The surgery really isn't that bad. But, I wouldn't have it done for just pain, but to prevent irreversable cord damage or paralysis.

     
    Old 10-27-2009, 04:44 PM   #3
    binx
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    Re: need advice whether to have c5-6 ACDF

    Quote:
    Originally Posted by Linda1652 View Post
    Myelopathy really leaves you no choice. I am surprised a Doctor would advise to wait on the surgery if you indeed have this. Most Doctors tell those with it that they could become paralyzed if involved in a freak fall or car accident.

    The surgery really isn't that bad. But, I wouldn't have it done for just pain, but to prevent irreversable cord damage or paralysis.
    thank you for taking the time to reply, linda.

    my MRI said i have a centralized disc herniation that is making a 2.5mm indent on my spinal cord, along with the two aforementioned bulges and degenerative disc disease which was labeled cervical spondylytic myelopathy by the radiologist and two of the NSs. three of the surgeons and one physiatrist told me that although they have seen worse cases of cord compression, i was indeed at risk of paralysis if i were in a minor fender bender or fell down and landed "wrong". the one NS who did not recommend surgery at this time said he didn't believe that i was at any more risk of paralysis than he is based on his age-related arthritic changes at his age of 54. i chose to follow his advice for conservative treatment.

    my neurologist has also said that physical therapy would help me to strengthen my back and neck and pop the disc back into place, but the first PT i saw wouldn't touch me with a 10-foot pole due to the cord compression. the second one i saw didn't feel exercise and strengthening would do much, but she has done myofascial release to help relieve some of my muscle spams and headaches which is the only thing that has helped me cope with this.

    i have seen so many different doctors to help me get to the bottom of this and the sometimes conflicting information i have gotten has made my head spin. that's why i am putting all this information out on this board to see if those with experience can help me sort through it all and aid in my decision-making process. i understand that no one can tell me what to do, but i just want to get opinions from the wise folks who frequent this forum.

     
    Old 10-27-2009, 05:59 PM   #4
    HarleyLdy61
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    Re: need advice whether to have c5-6 ACDF

    Binx,


    I'm not suggesting what you should or shouldn't do- And I don't want to scare you just want to let you know my story

    I'm not sure if you've read about my issues and when I read your post I see alot of my sypmtoms / story in your post ( expect I really wasn't having pain or headaches but was also having urinary/bowel issues) -

    I had symptoms since Aug 08 - jan 09 GP ordered mri's to look for MS - found out my cord was compressed to 4mm - GP referred me to a neurosurgeon ASAP - neurosurgeon diagnosed Cervical spodylosis, myelopathy, ddd and stenosis - wanted surgery the following week - was going to have to wait for surgery until aug 09 due to work/fmla issues (my gp and surgeon was not happy about it) - however my job and insurance was on the line in the beginning of June 09 - so went to see Gp and she was more than happy to put me out on fmla and I had surgery at the end of June. 2 weeks after the surgery the tingling - weakness came back along with some other issues.

    Went for a emg and nerve conduction test today with a neurologist and he says everthing that i'm feeling is real and feels that it is my spinal cord itself that is damaged. Like I said I can't say what you should or shouldn't do - but the compression is not something to mess with. If you want you can PM me

     
    Old 10-27-2009, 09:35 PM   #5
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    Re: need advice whether to have c5-6 ACDF

    Hi there sweetie. It is a gut wrenching decision but having done it in 2003 and 04 (acdf c56 and microdisectomy l5 s1 ) I have gotten through until now. I am only having problems now because my c6 7 was preexisting with bulging and the surgery over time can cause the domino affect. All I can say is that the few years inbetween with tolerable pain and a better quality of life made it worth it. Right now I like you am doing interventions like spinal decompression which was useless for me pretty much and now some epidurals to stop the significant pins/needles and nasty scalding like burning feeling in my feets and hadns. SOOOOOOOO...looking at your options, and decide if you can continue to live with the pain without going slightly insane and if being on many pills is really what you want and if you cannot handle years of it then I say get the surgery. It is very difficult but suddenly the decision just comes to you and you cannot NOT justify it when the time arrives. My thoughts and prayers are with you for a difficult decision ahead. Good luck and know that nothing stays the same forever!!!

     
    Old 10-28-2009, 01:55 AM   #6
    matt3507
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    Re: need advice whether to have c5-6 ACDF

    Hi again Binx,
    I know we have "chatted" on the boards before. I do not feel qualified to give you advice, but I have a similar, but not as serious a situation as you, I believe. My big prob. is at c5-c6 also. I have "mild" spinal stenosis and severe foraminal stenosis and blah blah blah! Over the past almost 4 years I have had 7 tests, tons of pt sessions, I forget how many doctors. I am going to see another one tomorrow because my old one doesn't take my insurance anymore.

    I don't know what to do either. I will admit I am just too scared to do it for pain relief only, but if I start getting weakness or other horrible neurological symptoms I will definitely go for the operation. One surgeon wants to do a c56 ACDF w/HW. I will not complain about my pain too much because there are some very sad stories much worse than mine here. So in a sentence, it's almost more than I can take. Pills, pills, pills. I am just playing it by ear now.

    I said no advice from me, but your situation is clear cut. You have to get the fusion or risk loss of use of your limbs. I would find a board certified surgeon with a few grey hairs. Pay $15.00 and check his medical background. Ask what his success rate is.

    I feel for you. I can just say what I would do. I would also study the stickies on this board and prepare as much as possible for the healing process. Then I would get it done asap. Good luck in your decision. I hope you keep posting regardless of getting the operation or not. Take care, matt

    Last edited by matt3507; 10-28-2009 at 01:56 AM. Reason: spelling

     
    Old 10-28-2009, 09:31 AM   #7
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    Re: need advice whether to have c5-6 ACDF

    Hello Binx- Hello good people,
    I read your post with much interest, Binx. I also had the MS bomb lobbed into my court a few years back. My brain scan was normal and my symptoms (vertigo, myalgic pain, and nausea) were eventually attributed to a non-specific viral syndrome. I have never agreed. The neuro stopped my intake of Zocor and I felt progressively and remarkable better within days. One can't be sure but my money is on a med Rx to statin drugs. How well I remember the terror and condfusion waiting on that brain scan. I feel for you.
    And here I sit waiting again. This time I am waiting for docs to interpret my cervical EMg testing and a recent MRI. My MRI shows "a broad-based disk herniation/protrusion that causes some degree of narrowing of the spinal canal...with AP dimention of the canal measuring 8.3 mm. The herniation abuts the cervical cord and there is slight flattening of the ventral aspect of the cord." As I say, I have yet to hear from my neurosurgeon.
    You sayyou have a 2.5 mm indent on your spinal cord? I'm wondering how you arrive at that number? I'm curious to know if knowing my number (AP dimension is 8.3 mm) would allow me to say what amount of indentation there is on my spinal cord?
    You are way ahead of me. You have several surgical opinions. I don't as yet. My pain center docs are saying they think I am facing surgery but I don't know that as yet. But I sure know how hard it is to decide these things. Are you fearful of the surgery itself or the risk of a bad outcome? SQ

     
    Old 10-28-2009, 10:35 AM   #8
    binx
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    Re: need advice whether to have c5-6 ACDF

    wow--what great responses! there are many times when this experience really makes me feel like i'm alone on an island, so i am really grateful for everyone's willingness to share their experiences and opinions.

    suzy-q: i am glad to hear your suspected MS symptoms resolved, and i know what you mean about not buying the conclusion that they were due to a post-viral syndrome. that was one diagnosis my former GP presented to me when all this started as well (before he sent me home with a prescription for valium). it is incredibly stressful to be left wondering what in the world could be going on, and i really hope this all gets resolved soon for me. i am not currently on any medications that i can attribute my symptoms to. my MRI report actually quantified the measure of cord compression--that's where i got the 2.5mm figure from. i wish you the best with your journey toward recovery, and please keep us all posted.

    hi again, matt: i have been following your posts since we last "chatted", and i am so sorry for your pain. i know what that kind of pain can do to a person since i have watched it completely debilitate my sister who also suffers from c-spine disease. she did not have a good outcome from her 5-level laminaplasty and subsequent c3-4 ACDF and is now permanently disabled. i know her surgeries were much more serious than mine, but i still get so scared. i hope the new surgeon you are going to see instills a sense of confidence and helps you with your decision-making process. please let us know how it goes when you have a chance.

    nero: i was happy to read that you feel your decision to undergo ACDF was for the best in spite of the domino effect that has presented. i also have bulges at c4-5 and c3-4, so i am concerned about that happening to me as well. even so, if surgery will allow me to get back on my feet for even a couple of years, that would be worth it. thank you for helping with my perspective, especially by pointing out that nothing stays the same.

    harleyldy: i sent you a PM, but wanted to thank you again for providing details about your experience as well.

    i will fill everyone in as new things develop on my end. i am calling my surgeon after i type this to talk to the scheduler.

    you people are wonderful.

     
    Old 07-10-2010, 10:27 PM   #9
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    Re: need advice whether to have c5-6 ACDF

    Hi Binx... I feel your "obsession". I have been trying to make the same decision now for a year and a half. I have something similar to yours and it drives you crazy thinking about this "elective" surgery. Just remember, when your nervous system is being whammed it does all kinds of wierd things... and it may not be MS. The surgery is doable and you should recover nicely if you have it. But, geez... what ever happened to the docs just telling you, "You have to have an operation... end of story". All this research into what is wrong with us... and you can "choose" what to do, is just nerve-wracking (no pun intended) .

     
    Old 07-11-2010, 10:26 PM   #10
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    Re: need advice whether to have c5-6 ACDF

    An ACDF, for me, was one of the easiest surgeries I underwent. Here in the US, a 1-2 level ACDF means 1-2 nights in the hospital (in general) and some physicians send you home with a cervical collar/brace. I had a C5-C7 ACDF and didn't loose much, if any, neck range of motion. No one would know I had a fusion, I'm just careful when looking up or back not to strain my neck. I bough a panoramic rear view mirror for my car and I always make sure my neck is taken well care of.
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    Old 07-12-2010, 11:51 AM   #11
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    Re: need advice whether to have c5-6 ACDF

    Hi Binx... I also had serious problems with Zocor that added much to my pain profile as well. It also resolved over a period of 6 weeks after getting off of it. You have to wonder about those statins.

     
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