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  • Do I need this surgery?!?

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    Old 06-24-2009, 07:19 PM   #1
    Jez2008
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    Do I need this surgery?!?

    I went to see one of the best neurosurgeons in the area and he seems to think that an ACDF is the only thing that will help me. I have a herniated disk at c5 c6 that is compressing the cord. I have a lot of other little things going on but this is the big one.

    I had neck pain and shoulder blade pain on the right side and a lot of tingling/numbness down my right arm/hand when I sat in certain positions. I went to 3 weeks of PT and the numbness is much better. The pain is still there. I have NO arm pain. I read on several other boards that an ACDF will not help my neck pain but to only have it to help the arm pain. If so, and I don't have arm pain, do I need this surgery? The neuro did not tell me I am one whiplash or car wreck away from being paralyzed.... I asked him. He gave me the option of doing nothing and adjusting my lifestlye to the pain, PT which he doesn't think will work, or epidural injections which he thinks won't help in the long term.

    Help.. I am scared to death of this surgery and if my neck pain isn't going to go away then what is the point except to possibly make it worse?!

     
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    Old 06-25-2009, 06:39 AM   #2
    sammyo1
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    Re: Do I need this surgery?!?

    Jez, Did you ask the surgeon if your neck pain would be relieved or improve, or just others?

    Since you are so unsure of having surgery perhaps you should seek a second opinion. Although you may have seen the best Neuro this should not rule out seeking another opinion from another surgeon. I have been stunned by opinions & information people receive just by getting second or third opinions. I have read where some get more then two opinions. I wish I had been more informed on what to expect & so on...Although I really had no choice but to go with the fusion, I wonder if I would have been more informed & prepared, or if I would have chose this surgeon had I went for other opinions with other surgeons.

    I can understand why your fearful & I believe anyone facing surgery would be.
    You may want to think about weighing the pro & cons of having the fusion vs not having the fusion. I certainly am not one to promote surgery but I dont see where your condition can improve drastically if there is compression on your cord.
    If I were in your shoes I would seek another opinion & have a list of all my concerns put together.

    You have to consider even though you have no arm pain so to speak of if this is something that can occur in the future if you opt to not have the fusion done?
    What are risks are you taking by not having the fusion vs the risks of having the fusion?
    What are the chances of this progressing?

    Are you at risk for nerve damange now or in the future?

    Are there certain activities that you should avoid if you choose to not have fusion?

    I can tell you now there will be things that you will have to be careful of & perhaps even things you will have to avoid with compression on the cord.
    Although after fusion there are still things my surgeon & PT told me I am to limit or not to do at all.

    These are just a few of the questions that would concern me if I were faced with your situation.
    I'm sure there are more questions that you would want answers to.
    There may be no answers to some of your questions. In many cases only time will tell.

    Although 2 people may have the same problem everyone is different. The way our bodies respond to injury, surgery, recovery & so on...
    When I went for a recent EMG the doctor made a statement that has really stuck with me. He said not everyone is not wired the same way. Meaning he could take 2 different patients with the same problem & we may not have the same symptoms or pain.
    For example I had problems in the same area as you, but I did not experiance alot of neck pain until the right before surgery. In my case I had more arm pain & shoulder pain & so on.... For the longest time I had no neck pain at all.

    I think everyone here can understand your fears.

    I'm sure others will come along & offer some advice & opinions. I wish the best of luck with what ever decision you make. Sammy

     
    Old 06-25-2009, 04:20 PM   #3
    Toonces1
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    Re: Do I need this surgery?!?

    Hi Jez, I would weigh how bad the pain is (or could get) versus the risks of surgery. I don't think anyone can say that ACDF will not improve neck pain. I would definitely ask your surgeon what he thinks. For me, the pain was so bad that if there was hope for reducing it (even with surgery) I had to try it. I didn't have arm pain either, but just really bad shoulder blade pain. If a doctor told me to "adjust my life to the pain" when I knew there was a possible solution, I would go crazy. I don't know how old you are, but that might be a factor, too. If you are looking at adjusting the next 60 years for the pain, that might be different than if you are older.

    I actually ended up with arm and neck pain after surgery, but that's because my fusion wasn't successful, and there's no indication that the same thing would happen to you. Make sure you are comfortable with your surgeon if you do decide to go with surgery. Good luck and let us know what the surgeon says and you decide.

     
    Old 06-28-2009, 10:27 AM   #4
    jennybyc
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    Re: Do I need this surgery?!?

    Hi, I'm Jenny and I'm fused from C3 to T1. My neurologist gave some stats before I made any decisions on surgery(I went to her to have her help me decide). Spine surgery has a success rate of 30% when it comes to relieving pain and a 70% success rate when it come to relieving numbness. So I took this into consideration when I had my surgery. We always think we'll be one of the 30% that will get pain relief but that's taking a big chance.

    But as my neurosurgeon pointed out when I asked him about these stats, the success rates are correct but the one thing it doesn't say it that surgery will at least stop either from progressing. So if you can live with where your pain levels are at right now, then assume it will eventually get worse. At what point will you say..............I can't take it getting any worse.....because you may be locked into that pain level.

    I was lucky. I had very little pain and mostly numbness. That is almost gone and I do have some pain from muscles that no longer work and want to. But I have been using electric stimulation to relieve the pain...it works the muscles for me. Considering getting one of the machines for myself at home.

    So I see your doc's point. You will stabilize but don't let it go too far as you may be locked into that state. He'd probably like to see you operated on now so you don't end up with too much residual pain. And surgery like an ACDF is more successful if done in the first year after an injury(don't know when this happened).

    A lot to process and lots of opinions here.

    good luck and gentle hugs................Jenny

     
    Old 06-28-2009, 07:56 PM   #5
    gooseberry
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    Smile Re: Do I need this surgery?!?

    Hi Jez,

    I'm GB and I am fused from C2 to T2, just over a year ago now. I had spinal chord compression and damage, as well as misaligned vertabrae.

    Personally I have to say the surgery and recovery was very hard work and I agree with you scary, but I am glad I did it mainly for the reason that Jenny said that it at least arrested the condition before it got worse, if not made it better in terms of taking pressure of the spinal chord. If you have spinal chord compression now my understanding is that only surgery can really deal with it to take the pressure off the chord, by making space etc through traction (if needed) disc removal and fusion, it won't go away of its own accord - others please correct me if I am wrong... you don't want the pressure to get worse because this could lead to permanent damage like I have, which is irrepairable. So I agree with everybody else that you need to weigh up the risks that it may not be better post op with the possible benefits. I also think its absolutely paramount that you have complete faith in your surgeon and the appropriateness of his treatment course, get second and third opinions if need be. For example with me it was the first and third doctors who advised to proceed with the operation the second one wanted to wait.

    When I was feeling overwhelmed about the idea of having surgery I often wanted to know about the good and the bad from people who had been there, so I thought I'd let you know how its gone for me:

    1. I found wearing the brace for six weeks very difficult but my doctor recommended having the surgery during the cold season so I wouldnt suffer from heat or irritation - a great idea;

    2. I used to have pain that radiated up my neck, muscular pain, because my vertabrae was out of alignment and I had to work to hold my head up. Now that I am fused that pain is gone;

    3. I have less pain in my right shoulder than before;

    4. I am able to walk better than I did before my operation;

    5. I wake up every day different to how I was before but releived to know that I have dealt with what was a serious structural problem that could have resulted in the loss of some serious functioning if left unchecked;

    6. My life is better for having had the operation.

    I really wish the best to you with your decision.

    GB

     
    Old 06-30-2009, 08:05 AM   #6
    tata616
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    Re: Do I need this surgery?!?

    Hi Jez, Did you get an MRI? I would think so because that is the only way a neurosurgeon can put together an informed diagnosis. I have the same conditions you describe and that is disc herniation at C5-6 with cord impingement. I have 3 neurosurgeons who say that surgery should be in my future.

    Jez I believe you need opinions, you need a second and a third opinion at a minimum. ACDF is major surgery they tell me 2 hours on the table and 1 night in the hospital and it at least 6 weeks in active recovery.

    What concerns me is the success rate mentioned above by Jenny and also by the way just how do they quantify this success? My pain like yours is in the right shoulder (also the left shoulder) with numbness in both feet. I wonder if the surgery will end the pain and what my complications will be afterward.

    I have 3 opinions: the first doctor says "I should get surgery but it is not an emergency and that ESI will not help me" this surgeon is very well known and out of my network so I would not be able to use her for surgery but I went out of network because of her preeminent reputation. My second opinion from an equally well known doctor is for immediate surgery. This surgeon scheduled me for surgery on the spot and on the table in 4 days. I immediately went for a pre-op physical straight from his office that day and in that process backed out because I did not like the hospital. My third opinion said I should "contemplate surgery but there was no emergency and that I may do the surgery on my time line". This surgeon also said I should explore ESI therapy.

    Two weeks ago I had my first ESI it put me in quite a bit of pain initially then I felt better for one day and now I think I am worse off. I meet my PM next week for a follow up on this first injection and I think he will want to do another one.

    I will most probably continue with ESI and get all 3 injections and see where that takes me. I do not want surgery and If I absolutely must have it I will schedule the surgery for the very beginning of the new year. My deductible is $4500 a year and I would rather do this early in the year so I will not have any other "out of pocket" expense. I can also put aside money that will not be taxed for this purpose.

    So I still ask myself "do I need this surgery?" I am delaying as long as possible. I have modified my lifestyle and no longer road bike(lance armstrong wannabe at 55) because the doctors (one especially) say if I fall I could be paralyzed. I am in pain all the time and it really hurts but my PM helps me with prescriptions for LYRICA and Percocet this gets me relief and my pain while medicated is at a 5. I would contemplate this approach as an alternate to surgery. That is modified lifestyle, and painkillers vs. the surgery that approach would work for me but maybe not for you.

    ACDF is a serious procedure and I mostly read about failures on the web. I am still unsure what constitutes success for this procedure. I need to ask my doctor next time.

    Jez all the best to you. As you may have gathered my advice would be the consensus opinion apparent on the web for ACDF be conservative and exhaust all other options first.

    TATA

     
    Old 06-30-2009, 04:27 PM   #7
    Stonepile
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    Re: Do I need this surgery?!?

    Hi Jez,
    Boy are you getting some great advice here! I can sympathize with your fear of making the incorrect decision. I lost so much additional sleep (was already sleep deprived due to the neck and arm pain) when trying to figure out what to do that it was a relief when the decision was finally made.

    All the suggestions that have been listed previously are great and I wish that maybe I'd have found this Healthboard before my surgery. But, I just want to give you a positive outcome to see as you mentioned that you've mostly only seen negative outcomes.

    I couldn't sleep due to the arm pain being so severe. There was not one place that I could rest my arm and it not be excruciating. I had pain from my neck down to my left shoulder blade and then down the back of my arm and around the outside of my elbow and then down into my index finger. I was numb from the inside of the middle finger to the index finger and inside of my thumb. I had no reflex in my left arm. Don't know how much of that is similar to what you are experiencing.

    Anyway the NS told me that only surgery would take care of the issue at C5-C6 because I had bone built up that on the MRI made it look completely black. (I am not an expert in terminology about all of this that the others are.) My NS kept my MRI report and I only read it once and I don't remember how it was exactly stated. I also had a very large herniation between C6 - C7 and he said he'd have to make a decision when he got in there about whether he would do something about it then.

    I ended up with an ACDF C5 - C7 and a plate. When I woke up from surgery my numbness was gone and so was the arm and shoulder pain. My neck was sore just from the surgery, but that pain was gone within a day or so. I am now 11 weeks post surgery and am wanting to go wakeboarding and ride go-carts with my kids!!! Hold on........ I know I can't and I won't, but I just said that to let you know how good I'm feeling now!!! I haven't been on the Healthboards very long and so I am not all that up on what my future could possible hold, but I do know that I don't have to take any drugs, have great range of motion, and all the pain and numbness if gone.

    After reading several of the threads here on the neck/spine board I do know that many people do not have these results. I will say that it was only about 2.5 months from the time I hit severe pain level to my surgery date. I do think that this had alot to do with the success of my surgery. (Plus a fantastic NS and lots of prayer for both him and me!)

    Oh, one other thing I thought that I would mention as I think I remember that you mentioned your shoulders hurting too. I truly believed that I had rotator cuff injuries as I had played softball for years. I finally gave it up at 46 years old. I realized about four weeks after surgery when I didn't have to wear my neck brace anymore that the pain in my shoulders was completely gone too!!! What an added benefit. I used to sleep on my arm with it raised above my head and hadn't been able to do that for about 8 years. Guess what.........I can do it now.

    Well.......I wish you a peace about your decision and all the best recovery for whatever treatment you decide.

    Stonepile

     
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