Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

Question for Spiney AND Neckies

lisa burekllisa burek Posts: 855
edited 06/11/2012 - 8:40 AM in Back Surgery and Neck Surgery
Hi Fellow Buddies,

For 6 years I have been a spiney (levels L2-S1 fused 5 years apart). Right before my last surgery I found out that my neck is a massive mess: severe DDD from C3-C7 and kyphosis (oh yeah, some thoracic scoliosis which I can't even think about now!).

My neck issues currently are not bad, sleep discomfort, pain/annoyance when turning neck too much, must use a laptop, can't use a desk-top computer with a mouse. I know I will have to take care of this in the future, especially so as to not suffer any permanent nerve damage.

I guess I am just searching for any kind of input on what I can look "forward" to. How long did you wait for (whichever) surgery? Once you have become a spiney and neckie surgery "survivor", what has your daily life and/or restrictions become?

Any input is welcome, I guess I am just looking for some realistic expectations for the future.

By the way, if there are any neckies out there who are now looking at lumbar issues: I'm your gal!!!

I'm a total realist and basically have accepted my situation at (only!) 44 years old, just really looking for any input from my honest spiney/neckie friends. I feel that the more info I have to prepare with, the better off I am.


  • It's one of those things that you will just "know" when it is time to attend to it. So my advice is to just live your life and not fret over it. When the day comes that you can no longer ignore it, you will know and you will be ready.

  • Hey Lisa,

    I am a double trouble spiney/neckie. My lumbar happened to be worse a few years ago (when I finally couldn't take it). My neck has been bad on/off for maybe 10 years. I would have "flares" (both lumbar and neck) that would set me back a few days and then I would be back to my "normal". I did have some serious neck issues about 9 years ago that lasted about 6 months but finally cleared up.

    This last flare has been going on since May of this year. I was in denial. I couldn't face the thought of going through the expense/energy of getting my neck fixed. But then the numbness started in and the red flags came up. I swollowed my fear and started up the huge hill of fixing my neck. I would say in the last 2-3 months (Oct/Nov/Dec) my pain has gone from intermitten to constant. My neck which was not sore much before burns/hurt all the time. My hands run through a few different symptoms that range from shooting/stabbing pain, dull aches, completely cramped into- cant open etc. Now my eyes have started to be effected and I have had the same headache for about 8 weeks. I am having a brain MRI nest Tuesday. I am seeing an Optimologist Monday (I may have developed glaucoma).

    I went from being a 1-3 pain level to a 5-7 pain level (with meds). I can't sleep well. I have lost so much muscle that a 10# box feels like 50#. I can not lift 30# any longer. I try to grap things and they end up flying across the room. Oh yeah, my feet have their own momenets of numbness and I have to pee all the time.

    Hows that?


  • Hi "C", thanks, I'm not worrying, just really trying to get some input from others who have been through this. Maybe because I have young kids I feel if I am somehow mentally "in gear" then I have more mental
    control in my head to deal with the future.

    I know from my back issues it was time when my body told me to. The neck just scares me a bit because I'm afraid of doing nerve damage unknowingly.

    And Julie, thanks for your honesty. I guess in the long run I will really just have to wait and see what my case becomes.
  • RangerRRanger on da rangePosts: 805
    Hi Lisa,
    I have had spinal surgeries at both ends and I will need more soon. I have severe OA and my spine is collapsing as the discs dry out and degenerate.
    I'm with "C" on her reply, you will just know when it's time. Enough said.
    Take care,
  • I had a 3-lvl ACDF in October 08 after having symptoms for only five months. My neck was a total disaster, but I got it fixed (well, mostly - there's still movement at C6/7).

    The following February, I started having sciatica that escalated to LBP, hip pain and pain shooting down both legs to my knees. After trying all the standard shots, I'm scheduled for a TLIF on L4/5 in early January.

    So, I'm now both a neckie and a lumbie, something that I hate happened, but it wasn't a surprise. I've always believed that once you have spine problems, it probable that you'll have more down the road - it's only a matter of how long that road is.

    After my ACDF, my pre-op symptoms went away although I still have neck pain and muscle spasms, probably due to the C6/7 thing. But my ROM is very good side to side but not so much up and down. I can't look in any one direction for very long without my neck starting to hurt.

    I've been able to play a few 9-holes of golf this last summer, but I'm afraid that it won't be possible after my lumbar surgery. But, I just don't know - I'll have to ask my surgeon when I see him.

    Anyway, welcome to the club. I'm only 48 and don't like all this crud either, but whatta ya gonna do? Just go with the flow, I guess. What has your surgeon told you with regards to your neck and possible cervical surgery?

    Take care Lisa.
  • SpineAZSpineAZ WiscPosts: 1,084
    I had lumbar problems in 1987 and 1993. The fusion in 1993 worked so well I never had any real problems beyond some stiffness.

    In 2004 I had a sudden occurrence of neck pain without any accident or anything. I ended up with an ACDF in 2006 after 18 months of conservative treatment. The ESI had worked for that long and if they had kept working I'd have done the injections forever. But when they stopped working I had to have C5-C7 ACDF. Some symptoms didn't fully go away and became worse so in 2008 I had a posterior cervical formainotomy due to severe stenosis (at which time they removed bone spurs and enhanced my fusion with additional bone in the fusion joints).

    So that's gotten better, but I think I now have some C4 problems. Looking back I wished I had pushed for him to include C4.

    In 2009 I went back to him about lumbar and he had his physician's assistant examine me and even though the PA said to him "she's got significant pain at L3 and L5" the doctor said "maybe do an injection or pain management" and left the room.

    Well that wasn't acceptable so I went to find a new surgeon. A friend-of-a-friend who is a large guy had very successful lumbar surgery 7 months prior with a surgeon that he really liked. I changed to his doctor in June and have been through Pain Management, CT, MRI, CT myelogram, x-rays, ESI and nerve ablations. What he's found is L3 vertebrae has moved forward and the L4-S1 hardware is causing me some pain at L5. So in February I'll be having L3-S1 lateral lumbar fusion. Should be a challenge but I'm eager to get it done.

    Which brings me to the jist of your question. I'm on significant meds and am out of work since May so my neck is occasionally bad but is better. So I've already voiced to my PM that I'm concerned with - "what if the surgery works on the back and we decrease meds and then my neck hurts more". Both the PM and my orthopedic spine surgeon have said we'll have to tackle that next.

    I really hope to be able to get back to semi-normal and return to work. My disability from my employer is relatively generous so finding a job that pays what I'm getting from my disability could be a challenge and I don't want to jeopardize my LTD benefits. But my old job required a lot of travel. Although it was often day flights or one night it still played havoc on my spine so that's out of the question.

    So I'm not sure of how it will turn out in the next 6 months.

    I may have babbled too much but wanted to let you know you are not alone! Let me know if you have any questions. And please know that I have some unique problems with lax ligaments which is the most likely reason L3 moved forward (not so much an after affect of the prior surgeries).

    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • dilaurodilauro ConnecticutPosts: 9,855
    there is almost a snow ball effect. I started out in 1978 with my first Lumbar surgery. 16 years later , 3 more lumbar surgeries, I start with my cervical surgeries. Now in 2009, after 7 surgeries and still 1 problematic L4/L5 disc and 6 herniated thoracic discs I have to sit back and wonder.

    Did all of this happen because of spinal instability?
    Did some of this happen because I did not do what I was suppose to do?
    Did some of occur due to genetic reasons?

    I think I could answer YES to all of the above.

    My doctors told me because of my lumbar surgeries (even though they were non-fused) and my cervical surgeries, that put extra strain on my thoracic discs. All of this makes so much sense.

    So, I do believe that people who have lumbar problems could wind up with cervical problems and the same the other way, if you had cervical problems, you might some day have lumbar problems.

    Why? I wish I knew exactly what caused things like this. I dont have any details or medical facts, all I have is what has happened to me and from others I have talked to.

    One thing for sure, after your first spinal surgery, we need to do everything possible and then so more to do all the right things to avoid additional problems.

    If I could put myself back in time about 25 years, I think I really could have avoided 3 maybe 4 spinal surgeries
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Hi Ron,

    I've read that problems in the thoracic spine are rare, and generally caused by trauma. I've wondered why I have 3 dics (the MRI didn't go any higher as it was my lumbar spine that was being examined)that are a problem.

    I have a spondylolisthesis and wondered if the change in spine loading could have caused the disc problem.

    My main problem is bilateral sciatica which is due to stenosis caused by the spondylolisthesis, but I do get pain and spasms in my mid back as well.
    I wonder what the future holds.
    I'm trying to avoid surgery - scarey!
Sign In or Register to comment.