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Please Need Advice Do I need a second opinion

mcrosslinmmcrosslin Posts: 5
edited 06/11/2012 - 8:02 AM in Neck Pain: Cervical
Hello everyone! I am new so bare with me on this. I had a one level acdf surgery in July of 2011. Was pain free when woke up other than normal surgery pain. Surgeon released me with no restrictions back to work. I work at a home improvement store lifting bending twisting standing looking down all of the painful goodies that come with a manual labor job. In Jan.2012 the usually mild neck pain came back horribly. I took as long as i could and made a appointment with previous neurosurgeon that had done the acdf surgery. What he found was the disc above the fusion is now blown. I was very dissapointed with this diagnoses. He then tells me I have three choices 1 control pain with meds and learn to live with it 2 try all and I do mean all of the injections physical therapy tens unit etc. 3 last resort and he does not want to do is a second acdf surgery to remove the old fusion and fix all the problems from there. He seems to have set his mind to not doing anything more for me. I have done all the things he has asked of me from the list above. I have not improved a bit and am now in more pain than when I went to him in January. I am not a spring chicken by no means but at 44 him telling me that he does not want to fix it and telling me that I will have to live with the pain from here on out is so depressing. I feel he should at least leave the option up to me. He is scared of the domino effect happening but if it could by me two three however long it may be is something that I would go for. Please any honest opinions would be greatly appreciated from this group. Thanks so much and look forward to hearing from my fellow neckies!!!

Michelle
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Comments

  • I would get a second opinion, if possible. You could always call and talk to the nurse or make an appointment to go back in and express how you are feeling and ask why... I had my ACDF in 2009 and am now having a lot of pain issues, tingling/numbness. MRI shows stress above and below my fusion. I am in the process of getting an appointment to see my neuro that did my previous surgery. My neuro worked with me for about a year after surgery, and I just didn't get much better. He ended up sending me to a pain management doctor, which I have been going to for two years now. I am finally just fed up with all the pain meds and injections, so I want to go in and see what he thinks and see if he has any solutions for me. Your doctor may not want to do anything this soon. If you just had you ACDF in 2011... My pain doctor said his wife took almost two full years to get back to "normal" after her ACDF. Not everyone heals at the same rate and most doctors do not want to "jump the gun," you are just getting to your one year mark, which it can take that long just to fully fuse.

    I wish you the best and I know how stressful/painful this all can be. Oh, and welcome to SH! I consider SH an entended part of my family. I really don't know what I would do without all of the support and shoulders to cry on :-)
  • I had 2 level fusion and still suffer from pain from the level above. The surgeon felt that the level above was borderline bad so he only worked on the disks that he felt were definitely bad. I wish he did it because two surgeries is worse than one, but I am also scared that its going to make the level above or below my current fusion worse.

    Pain meds do very little to help me. I take them 4 times a day and if it was up to me I would take them every 2 to 3 hours and I know that theres no doctor that will prescribe me that much painkillers. I can try more expensive painkillers I guess, but I will eventually get used to them and will need more of them. That is why I am debating about getting the level above done to fix it for good.

    At this point I am willing to risk more pain and paralysis to get my pain fixed permanently. I used to afraid of dying, but now I don't care and I'm willing to risk it by getting more surgery done. It's sad, but thats how this nightmare has affected me.
  • Michelle Welcome to SH, this has been a huge source of comfort for me and experience from people who have been there. I had 3 level fusion C4-C7 on April 16 my doctor told me C-4/5 was not that bad but he wanted to include it because he knew that it would be the source of pain in the near future, he left the decsion to me and I told him to do all 3. I understand your frustration and I think you should get another opinion, you should not have to suffer or be in pain because he does not want to deal with it. Your rights as a patient is to have the best care possible and if you are in pain and he is not willing to help than find another doctor who will.I am 43 and have no intesion of having limited range of motion or live with it pain for life. You should not have to live on pain meds, you derserve better. I hope you find what you need on this sight and again welcome.
    Kimberly Martin
  • I thank you all for your suggestions and giving me hope. I go back to the surgeon at the end of this month. The big BUT is that when I was there last time he ordered facet injections which was very painful and trigger point injections and a tens unit. Per the lady that does the appointments she said I had to keep the tens unit a whole month and do pysical therapy and then come back as soon as the month was up to see the doctor before insurance would pay for it. So alas I am having to take physical therapy twice a week. The tens unit does nothing to help the pain as a matter of fact it seems to irratate my pain. The therapist have only done deep heat treatments. When I went on Thursday the main lady came in because I was hurting so much and did a manual traction on me. They want to use the traction machine but I had that done before my first surgery and Lord it was so painful. I have decided I have done all the things he has requested but I am not getting on the traction machine. I am not sure whether this next appointment is just so insurance will pay for tens unit or if he will decide on my plan of treatment. I am hopeing that he is doing all the demands of insurance for them to agree that surgery is the next step. I am at a point that this is completely over took my quality of life. My last child got married back in Dec. of 2011 and I am only 44. My husband and I have been looking forward to being able to just pick up and do the things that we never had a chance to do while raising the kids. We are now living on just 400.00 a week salary due to me not being able to work and are completely using what little savings we have. By middle of this year we will be completely broke. I am really scared for our future for the first time in my life. Thank you to all that have replied and hopefully when I go back I will have some good news if not I am going to someone for a second opinion.
  • Hi and welcome to the SH forum. You have lots of company here on this site, and great support. It's a great place to come if you need to vent. Everybody here "gets" it.

    Do you have any way of retaining or doing less physical work? I know that that's very physically demanding work. My DH used to work at a home improvement store.

    I was an OR nurse who spent 30 years bending,twisting & lifting 30-40 instrument trays, from 1 tray to a dozen depending on the case, four or to 10 times in a shift. I have a lifting restriction, so work put me on disability. (For patient safety they said, but more likely worried that I might hurt myself at work.)

    Get a second opinion, keep a journal of your symtoms, pain level and what causes increases etc. Get records from your old NS, & pain doc.(Keep copies for yourself also.) Make a list of questions and write down the answers from the new NS.

    Try to go back and make a timeline since your last surgery of all the procedures you have had done to try and treat the new problems. This will clearly let you and the doc see the progression of your problems.

    I hope this helps a little, and that you can find a solution.

    Dee

  • H2O baby has given you some really good advice. I now have a medical binder that I keep everything in. I log any treatment, pain, results from meds and treatment, summary of everything, etc. Plus, it is hard to always remember everything when you go in to see a doctor, but if it is written down then you will not forget. When I see a doctor for the first time, I always bring my binder and give it to the nurse to give to the doc. That way he can look through and know what's going on before he even comes in. I just updated mine yesterday so I can hand it over when I get in to see the neuro, hopefully real soon. If you need any help or want me to send you some of mine, so you can see what I put in it, just pm me and I will be happy to.

    I am so sorry you are dealing with financial issues too. :-( Talk about stressful! And I had my kids really young, well my first one at 16 and then my my second at 21, so I am looking forward to my "still being young" years and my kids being grown and gone (I say that now, but I will probably cry my eyes out when they are gone).

    I guess I have been dealing with the pain issues for a while so I may have come across as insensitive when I told you you could still be healing. I know when I was about a year out, and stil in tremendous pain, I wanted to choke anyone who said that!!! lol, it just "struck a nerve" so to speak, pun intended ;-). You should not be in that much pain almost a year out. I do remember going through something similar. My doctor tried pain meds, injections, nerve ablation... Then they just ran out of things, so they sent me to a pain management doctor and I have been with him since March 2010. At that point I went and got a second opinion and he agreed that seeing a pain doc would be best right now. Now that I have been with him, he just focuses on keeping my pain manageable, and I am now to where that's not working. He has me on some pretty heavy stuff and does not want to up any doses/strengths at this point, so I tried injections, again, which I was not thrilled about, but was willing to do it in hopes that they'd actually help. Well, they didn't, so I'm getting in to see my neuro cause I don't know what else to do and I am fed up with the pain ruling my life, living on pain meds, and being poked in the neck and it doesn't even help.

    Hang in there. It can be a rough road, but don't give up. Get a second, third, fourth opinion, if possible. Keep at em, and log EVERYTHING!!! When logging make sure you put down what you are doing when the pain hits, even if you are just sitting when it happens. I wish you luck and will keep you in my thoughts. Vent here anytime! We all understand. :-)
  • He seems to have set his mind to not doing anything more for me. I have done all the things he has asked of me from the list above.

    Hi Michelle, I would definitely get a second opinion. This is YOUR life and you need to do whatever you have to to have a good quality of life.

    I wish you luck. I hope you get a solution to your spine issues sooner than later.

    Hugs.
    Missy, 1 level ACDF C6/C7 Monday July 16th 2012.

  • susabellssusabell Illinois Posts: 241
    I would also like to welcome you to SH. I thank you for asking such a great question. I would get a second opinion and a third if need be.

    I am at the point where enuf is enuf. Someone has to have a clue as to why I have all this pain. I find that physical exercise increases my the level of my pain. Good advise from the other members. Thank you all for answering Michelle's questions because they are helping me, along this journey of never ending pain.

    Please keep us posted. I hope you get some relief soon, I feel your pain.
    ACDF C4-C7 5/13/2010. Synthetic Bone Graft Failed Fusion.
    PCF C4-C7 8/13/13. Rods and Screws Fused in 3 Months with Autograft.
    C6-C7 Spineous process Surgically Shaved Off 3/11/14.
  • Hello everyone,
    So I went back to my neuro this past week. I cant say it went bad but he really did not give me but two options. He said another surgery would be a very dangerous surgery due to risks of going back in so soon. I had my first surgery in July of 2011 so the adjacent disc failure happened pretty quick. I have heard of many more that have second even third or fourth. Not sure about the surgery but he sure did scare me with the things that could happen tore eshagus(spelling?)infections,non fusion etc. So he is setting up a meliogram ct procedure to see if it is a have to now kind of thing if not he is sending to a pain clinic which depresses me to no end. I am not a spring chick but at 44 looking at drugs for the rest of my life is sad.I also have bipolar with manic depression and anxiety. I also have a fused left ankle where they took my ankle out and fused my leg bone to my foot bones. No movement at all wear special shoes etc. I asked him well what am I going to be able to do to pay my bills and feed my family. He said well lets just wait and see how this test goes if it shows more than the mri I may go back in and try to fix this disc. So who knows. Has anyone had a myleogram ct and if so how does it work and did you have any pain during or after. Never even heard of this test. ~X( Thanks everyone for any comments and hope all have a great Memorial Day and God Bless all of our veterans and soldiers and military.
  • A second opinion is always important. Just to verify your condition.
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