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  • To have neck surgery or not?!?!?!?!

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    Old 07-24-2009, 04:06 PM   #1
    Messed up neck
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    To have neck surgery or not?!?!?!?!

    Well, I'm in a very confused and painful and scary place, as all of us are who suffer from chronic pain and herniated discs, and other spinal cord problems. I've met with Advanced Pain Management physicians, who have medicated me with Neurontin, Ultram, and Zanaflex for the past 4 years now. Without these medications, I would be in constant pain and unable to function. Last week, I stopped taking the pain medications for 24 hours to see what my pain set-point was and could barely function and was in tears at the end of the 24 hour period. Of course, after I take my meds, they knock me out and I've spent far too much of the past 4 years sleeping my life away...

    But back to my conondrum::: My most recent MRI showed "SMALL CENTRAL DISC HERNIATIONS AT C4-5 AND C6-7 EXTENDING INTO THE SUBARACHNOID SPACE, BUT NOT COMING INTO CONTACT WITH THE CERVICAL CORD OR CREATING STENOSIS. MINIMAL DISC BULGING AT C5-6, NO MYELOMALACIA."

    To confirm my need for surgical intervention, a discogram was performed on
    6-15-09, it showed PAIN INTENSITY FROM 1 TO 10 at the different discs effected by poking it::: "at C3-4, I had a 7 OUT OF 10 reaction, at C4-5, I had a 8 out of 10 reaction, at C5-6, I had a 7 out of 10 reaction. At C6-7, which was one of my herniated discs, I surprisingly had a 0 out of 10 reaction."

    Then, the doctor did a small epidural at C3-4 to rule it out because he doesn't want to remove an otherwise normal disc he said... Then, he sent me to a surgeon who said he would remove C4-5 disc and C5-6 disc and replace with cadaver bone and said since my neck pain extends into my trap and shoulder and especially around my neck area the most - I can hope for 50-80% pain relief typically - but since my pain has put me on disability and otherwise ruined my life and I'm living in my parents basement at the age of 32 and in pain all day - that I don't have much to lose by risking surgery either.

    My PAIN MANAGEMENT doctor said he could do a NUCLEOPLASTY which removes some of the nucleus pulposus and hopes to draw in the herniation and suggests it because it is minimally invasive - however, I don't know the rates of re-herniation because only about 7,000 of these procedures have been performed. I have read mixed reviews on the internet.

    My SURGEON in Milwaukee, WI suggests trying a ACDF fusion to fix my bad discs and that he's not a big fan of nucleoplasties, but said that surgery does have inherent risks and nothing is guaranteed. While most get pain relief, there are no guarantees that I will be in any less pain or pain-free. It is likely I may never be pain-free again in my life - God, is that depressing to think about.... At age 28, I first experienced stabbing and pinching all along my neck and trap muscles, who thought my quality of life would nearly stop at the age of 28???

    I asked my pain doctor which is more reliable: the discogram or the MRI? He said neither is conclusive. The herniated disc at C4-5 could have caused the discogram pain result at C3-4... But under that same line of reasoning, the herniation at C6-7 could be causing the pain I experience at C5-6. I'm MOST AFRAID THAT THEY WILL REMOVE THE WRONG DISCS and I'll be in as much pain as I was before!!! All the discs from C3 to C7 have at one time or another been a problem - but they are choosing to remove only the 2 middle ones - is this good, is it bad? What if my pain doesn't go away, and now I'm in the same amount of pain with a bunch of metal in my neck?

    IN CONCLUSION, what should I do? My doctors say I can go for the conventional surgery of ANTERIOR CERVICAL DISC FUSION, or for the NUCLEOPLASTY, or DO NOTHING and keep upping pain medication - which is all I've done for the past 4 years. And some days are actually tolerable and okay, as long as I keep on my medication routine. I can't work without being in pain though, I can't do any repetitive tasks, including all this typing that I've just done. SO PLEASE PUT YOUR TWO CENTS IN AND TELL ME YOUR OWN STORIES IF YOU'VE BEEN THROUGH ANYTHING SIMILAR AND WHAT YOU WOULD DO IF YOU WERE ME. Thank you very much.

     
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    Old 07-24-2009, 04:49 PM   #2
    Deborah157
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    Re: To have neck surgery or not?!?!?!?!

    Hi,I had surgery for hernieated discs at C5-6 and 7. I took a bad fall and was in horrible pain for six months, also taking narcotics and finally decided to do the surgery. I did the ACDF surgery and it was fine for about 3 months and then I had to do a laminectomy, then a formanictomy. I was having some more pain coming back and they sent me to a neurosurgeon, whom suggested the fusion be redone, and that he perform the surgery this time with the orthopaedic.

    Now it is 6 years later and I am on morphine, vicodin and zanaflex. I have some nerve impingement and the doc says I am getting weaker and weaker. I asked him what happens if I don't get surgery again. He stated that if the nerve gets pinched enough, I will get so week I can lose all my strength in my one arm.

    The reason I hold off on surgery is because, like you feel, and you haven't even had the surgery, the are no promises; it can go any way. I can tell you this, I would go for at least 3 opinions. And I could get epiderals for the pain; they helped me for awhile.

    Any questions, just let me know.

    Last edited by moderator2; 07-24-2009 at 05:45 PM. Reason: posted contact info - please read the posting rules

     
    Old 07-24-2009, 07:04 PM   #3
    Toonces1
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    Re: To have neck surgery or not?!?!?!?!

    MessedUpNeck - can I ask who your surgeon in Milwaukee is or what group/clinic he/she is with? I only ask because I had a TERRIBLE experience with a spine surgeon in Milwaukee who is 'affiliated' with Advanced Pain Management. I would never wish him on my worst enemy.

    I think you are in the same situation I was in, your life is so miserable that you don't have much to risk by going with the surgery. Personally, I would go with the ACDF, but I would really grill them about why they aren't doing a three-level. I share your concern that you would go through the surgery and then still have intense pain because one of the bad/painful discs is still there.

     
    Old 07-25-2009, 07:28 AM   #4
    Baybreeze
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    Re: To have neck surgery or not?!?!?!?!

    Hello,

    I am so sorry that you have been suffering with all that pain, I know it is no picnic. I am not very familiar with nucleoplasty, however I had severe stenosis for which I had multi-level laminectomies, part of the ligamentum flavum removed, foramintomies, as well as disk removal. After all of that, I still constantly get disk herniations and I also have a problem with scar tissue from surgery. I do not think that there is any guarantee that one won't get re-herniations. I think it's you might...or might not....there is always that chance. Surgery is always a risk you take...for some it helps them tremendously and for others it only makes things worse...unfortunately there is no way to predict it. Also, as with my situation, I have spinal arthritis, and no surgery makes that go away, so I will have it forever and it seems like mine just keeps getting worse. My surgeon even told me it was possible I could severe stenosis again or even in the same place.

     
    Old 07-27-2009, 05:13 AM   #5
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    Exclamation Re: To have neck surgery or not?!?!?!?!

    Hello mess up neck. If I was you I would WAIT with the neck surgery.

    Just like you, I've been "living" with chronic neck pain for 3.9 years(almost 4 years). It's horrible, terrible, I can't even describe you how much I suffer from this. It's almost like living in a HORROR movie.

    There is no GUARANTEE when you go through a neck surgery. you can get better, stay the same or SUFFER MORE. This surgery involves dealing with tendons, ligaments, muscles(soft tissues) - there is a possibility that those soft tissues can be INJURED during the procedures and you may end up suffering more PAIN. Also, something your doctors may have not told you that lot's of people who had done neck surgery suffer from INSOMNIA. So you are taking a HUGE risk on your SLEEP. You may end up taking sleeping pills till the rest of your life.

    So if you are right now able TO SLEEP WELL, I would definatelly WAIT with the surgery. Keep upping your dose of pain meds if your doctor agrees and wait for a while.

    This advice comes from SOMEBODY who really suffers from chronic neck pain, day in day out, 24/7.

    Last edited by nochange; 07-27-2009 at 05:17 AM.

     
    Old 07-28-2009, 07:04 PM   #6
    jennybyc
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    Re: To have neck surgery or not?!?!?!?!

    I don't know how far Madison is from Milwaukee but I can tell you that Froedtert Lutheran Memorial Hospital is associated with the Medical College of Wisconsin and one of the finest spine surgery programs in the country and you'd be well advised to seek a second opinion from them.

    I know travel seems impossible when you hurt and are troubled with what to do but I live in western Connecticut and haul my spine up to Boston, MAss to have my spine worked by a grad of the Wisconsin program and he is one of the best in the country. After seeing a lot of local yocals, I learned to go to the best.

    As I'm always reminding folks on these boards.....half of all docs out there graduated in the bottom half of their classes and you'll never know who they are. The only way you know you've got a really good doc is if they are in a great teaching program. There aren't that many programs for spine surgery so go with the great one you have at hand. You will be glad you did.

    Jenny(fused C3 to T1...was paralyzed...all gone!)

     
    Old 07-29-2009, 09:14 AM   #7
    Toonces1
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    Re: To have neck surgery or not?!?!?!?!

    Ditte Jennybyc - my dad had a brilliant surgeon at Froedtert. Her name is Jamie Baisden. She performed extremely complicated back to back 8-hour surgeries on my dad. Not only did she do wonder work, but she didn't have that "surgeon" attitude that we unfortunately find so often. She took tons of time showing my family what needed to be done and spent time with us after the surgeries so we could understand what was done and what to expect.

     
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