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need help fast

In short, I'm a 31 year old who had lumbar spinal fusion 9 months ago. Now I'm significantly worse than I was before surgery and my husband is losing his job at the end of the year so we won't have any insurance to cover another surgery at that point. I have had 2 MRI'S and two cat scan's all of which have revealed that my back is not fusing at all, and apparently there's large bone graft material that's protruding into a major nerve on my right side causing constant terrible pain. I now have to take twice as much medication as I did prior to surgery and physical therapy only made my pain worse. The doctor who performed my surgery has actually lost his medical license and I've recently discovered that this guy has hurt tons of people and been sued over 25 times for malpractice. I did leave his, of course, and went to another doctor at the 4 month mark and he is the one who told me I had bone graft material putting pressure on that nerve. At that time, he said we should wait a little while to see if physical therapy would improve the situation. Sadly, it didn't and then he just seemed to be done with me and he even told me and my mother in law that my back was fully fused upon my last visit with him. Well, we knew something was NOT right about what he was saying and I was still suffering so we found yet another doctor who did the latest cat scan which showed I was NOT healing at all. This doctor told me that I have a non union which is a major concern after 9 months to have no evidence of any healing taking place since besides my back problems I'm otherwise a very healthy, thin, young woman. He suggested we do another surgery and re do everything the other guy had done to me. Clearly, I was quite confused what to do or who to believe since one doctor is saying I'm fully healed/fused and seems to totally ignore the fact that I'm in agonizing pain and then I have this other doctor in the same month telling me the cat scan shows that I'm not even trying to heal/fuse and wans to do a new surgery. To try once more to clear things up and MAYBE get a doctor to tell me the honest facts, I went to one more doctor who confirmed what the last doctor had told me--that I indeed have NOT fused whatsoever. I still don't know why that other doctor misled me about my own body, but his lies have now caused me to waste about 3 months that I didn't have to waste because as I said earlier it's important to make a final choice about what to do before the end of this year so my insurance will still pay for everything because the 1st surgery took every dime we had. I have only been married a year and it's sad our first year and now going into our second year has been with me unable to do anything and in pain and fighting these doctors who don't seem to care that much. I was literally riding my horse, gardening, playing tennis, and living a pretty normal life before surgery and now all I can do is watch tv in bed. I only had the surgery in order to repair a herniated disc in my lower back after a horse fell on me . If I had known I'd end up in more pain with less function, have to give up all my hobbies, not have kids, and just be in pain I would have just lived with the herniated disc. I just need to know what would be the wisest thing to do in my shoes. I've got one doctor willing to do the new surgery which may make me better but now I'm paranoid about operations. Then I have another doctor who I also like, but he wants to still take things slower and play this wait and see game some more and put me in yet more physical therapy but the problem with this is that money wise I DON'T have time to waste. I have 2 more months left to get a surgery, and when those two months are gone so is my ability to PAY for another surgery for who knows how long but it will be years for sure. It's also an issue cause I will be 32 very soon and I still have no children and we want to start trying before I get much older cause I don't want to be putting myself or a child at risk by being over 35. I just feel so alone and nobody around me gets it because they don't know how this feels. Please let me know what you think I should do. I just don't want to live like this forever considering I have a long life ahead of me and I don't know how I can endure years or decades in this pain.....


  • jlrfryejjlrfrye ohioPosts: 1,110
    A decision to have surgery is a tough one and the only person that can make that decision is you. I can tell you my story but remember everyone is different. I also was a person that did not fuse, not once but 4 times. I finally found a Dr that is suppose to be the top surgeon tri-state who said he could help me. It was a rough surgery. He had to break out all the old attempts of fusion from c3 - c7. Remove plates, screws and anything else he could find.Lol. I finally fused after 10 years of pain. That decision was the best one I ever made in my life. Im not going to say I am pain free because I am not and will require meds for the rest of my life. I have alot of structural damage. That being said, I am now back to work full time and living a semi-active life. Without the surgery I was like you laying in bed watching TV most of the time. Good luck with your decision , only you know what is best for you. Keep us posted
  • I would get another Ortho or Neurosurgeon opinion. Is that what the CT report says there is no sighns of fusion. It`s kine of odd the other Surgeon would say you`re fused. Get more Board certified Orthosurgeon opinions from a reputable Spine Hospital in your area. Keep us posted how youre doing. Take care. Charry

    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Cath111CCath111 Posts: 3,702
    edited 10/21/2012 - 11:17 AM
    I mostly agree with charry. I definitely think you need a board certified, fellowship trained spine surgeon that only works on spines. However, if the doc or docs that have said you need surgery ARE specially trained already, then you should be able to trust them. Because of your time constraint, you really need to find a good surgeon if you don't have one already.

    Surgery is a very personal decision, but I'd listen to what Susan (jlrfrye) said...sometimes a good surgeon has to go in and fix what a bad surgeon did. Just make sure to do your homework, you don't want to go through this again, and with a good, trained spine surgeon, your chances to be like Susan and recover properly are greatly improved.

    Take care, make haste and let us know what happens.
  • Thank you so much for your replies. I will be seeing my spine doctor in the morning and he is going to take some motion x-rays to see how things appear when I'm moving around. The doctor I'm seeing now has a super good reputation, so I do trust him as far as what he says is wrong with me, and he agrees with the other doctor that I'm not fusing at all. The big difference is that the other doctor is ready and willing to do a surgery to take out and redo everything right now whereas this other doctor seems to want to give it even more time to see if my body will magically start to heal itself. I think he does not understand that for me that's a huge risk to take considering I won't have the option of getting another surgery once this year is over. I'm hoping I can make him understand the financial hardship I'm facing so he will do the surgery because I like him better than the other doctor--for some reason I feel more comfortable with him. Maybe these new motion x-rays will provide more information too that will help. I sure hope so because I'm starting to feel hopeless and running out of time and options fast. Thanks so much for your thoughts and help. It really helps to hear from others who know what I'm going through. I've felt sooooo alone the past 9 months even though my husband has been a fantastic support and so sweet to be, he still has no idea what I'm going through inside both physically and emotionally.
  • So I saw my new doctor again and he spent only about 10 minutes of his precious time with me and avoided all of my questions. I'm supper disappointed in him and really feel lost now. He refused to discuss the cat scan report I just had this September that showed that I have some new things wrong with my back that I never had prior to surgery such as spinal stenosis, a possible re-herniation, a bulging disc, and a few other things as well. In fact, when I asked him about those things from my cat scan he avoided answering my questions about those things by literally saying that cat scans are not reliable tests haha... Well, I've also had two MRI's, motion x-rays, and everything else under the sun. He just seemed totally adverse to telling me anything about my own body. As far as the non-union of my fusion after 9 months, he just has no answers whatsoever and is simply suggesting a bone stimulating device that I can wear outside my body for four hours a day. I'm fine with trying that to see if it will help stimulate my body to begin to heal, but another thing he said has me puzzled. I've read that if your spinal fusion fails, that you have to have another surgery because the hardware they put inside your body is only going to last for a little while which is why it's so important that your own body takes over and fuses so you will be stable for a decent amount of time. Well, I asked him about this and again he was really short with me and just insisted that I should not be concerned at ALL that my back is not fusing on it own and he insists that even if my body never fuses that I will be just fine stability wise. This just does not seem correct to me, especially after all the research I've done the past year about this stuff. Has anybody else heard of this? Is it indeed just fine if your back never fuses? Can you just go through life doing your regular activities like even things like tennis or horseback riding with a non union of the spine? I'm just very worried that this doctor just does not want to do a surgery to fix the bad work of my original doctor who has such a bad reputation and has lost his right to operate due to his negligence. It is starting to feel like all these doctors are pals, most likely golf together, kids go to the same private school, and so they just don't care to help the poor people that their buddy has hurt. It's a sad state of affairs for the medical profession. I'm soooooo hopeless now. I guess I have to just accept being in pain for the rest of my life and give up all the things I love and forget about having a family. It's going to be a long, long life like this :(
  • Well, I can tell you that my doctor not only specializes in fixing botched surgeries, he works with me all year long (once we know surgery is eminent) to whittle down my deductible so I can gat surgery at the end of the year when my deductible has been met.

    There are good, thoughtful and caring surgeons out there that really will work with you, both the problems and time frames. They may not be easy to find (as I see on these boards), but they exist. Search this site for a spine doctor. Talk to others - you may be amazes how many peeps have had back surgeries and can refer you, and search the Internet.

    I found my doc by referral and like I said, is fantastic. Keep looking. Many times good spine docs are in spine clinics, groups that only work on spines and include surgeons, physiotherapists and PTs all together.

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