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To fuse or not to fuse?

itsbettinaaaiitsbettinaaa Posts: 28
edited 06/11/2012 - 8:50 AM in Back Surgery and Neck Surgery
Hello all. I am new to this forum and don't really know where to begin. First off, I'm a 21 year old girl and I apologize in advance if this is written all jumbled. In June 2009 I began having back pain out of nowhere. My regular doctor thought it was a lumbar strain and gave me muscle relaxers and a prednisone pack and ordered an MRI. The MRI showed only a minor herniation at L4-L5 so I was told to go about with my life. Then, in December 2009, my back pain severly worsened. After getting another MRI, it was revealed that L5-S1 was beginning to degenerate. (Somewhere between June and March i did 2 more prednisone packs). I was given percocet and refered to a PM&R doctor (physical medicine and rehabilitation). I was given an epidural in January 2010 and it did not work. I received another in February and once again it did not work. I was told to find an orthopedic surgeon so I did. After one visit, the surgeon ordered an EMG and told me to go into pain management.( The EMG was negative). So, the pain management doctor ended up assuming it wad my SI joint causing me pain and put me on Norco (of course doing a drug test first) and had me start PT. He also gave me local injections. He also sent me for a bone scan and an MRI of the pelvis (both negative). When I told him PT was too painful he put me on MS Contin. I told him I would not take it at work but he wouldn't listen. To make a long story short, they made me flush my pills because they thought I was a druggie and a dealer because I was only 20 at the time. (I was in PM for about 6 months) Anywho, I left that PM program and found a new orthopedic spine surgeon in August 2010. After some XRays he noticed a transitional vertebrae and thinks that may be a cause to some of my pain.(He ordered a CT scan but due to recent insurance issues I have to wait until March to get it) I also received a diagnostic epidural in 2 facet joints and a diagnostic epidural in my SI joint(all these were negative. I believe my pain worsened from the PM dr having me do PT for the incorrect location. All he needed to do was order this injection!) My surgeon ordered a discogram which was very painfully positive. Now if you are still reading this, this is where it gets tricky. The discogram showed the pain was coming from an annular tear in L4-L5, not L5-S1 with DDD! So basically, I can fuse only L4-L5 and risk L5-S1 needing a fusion later in life OR I can fuse L4-S1 which will limit my flexibility very much. This wouldn't be as hard of a decision if I wasn't only 21. But I really want to do it because I have no quality of life right now. Also, I was a smoker for 8 years and quit almost 6 weeks ago to prepare myself for a possible fusion. Another thing I'd like to add is that I've been on 16 different medications for this problem but the psr is long enough without listing them. Sorry for this being so long. I appreciate all who read this and respond. Thank you! So, to fuse or not to fuse?


  • Welcome to Spine Health. There are lots of articles here on various spine conditions and treatments to deal with them. Have you taken a look yet?

    You have had a rough time, especially for someone so young. There are others who have had fusion surgery at your sort of age, and have disappeared from this forum, so I hope and assume that they are much better and back to their lives. Your age is an advantage for the recovery and healing.

    Well done for stopping smoking! That will really help if you do have a fusion. It is known to delay healing and fusion of the bone.

    None of us here are doctors, so can't really advise you as to whether to fuse or not to fuse. What I would suggest is that you read, read and read some more. I find that information helps me to understand what is going on, what treatments are being suggested and somehow that knowledge makes me less scared. Also reading other's stories of their surgeries and other treatments is useful to know what the recovery is like (it is tough and very long) but also how often it really helps the patient.

    My story is that I have a spondylolisthesis (slipped vertebra) and had decompression and fusion on the L4/L5 level only. At the time of my MRI I was told that both the disc above and below were not in a good state. A doctor thought my surgeon may want to fuse 2 or even 3 levels or at least put in a device to take the pressure off those discs. The surgeon thought that all I needed was a fusion of L4/L5.

    Here I am 10 months after surgery. I am feeling very much better than before surgery. :-) I don't really notice any loss of movement since my surgery but I was told that my spine wasn't working properly before, due to the misalignment. My surgeon did manage to pull things back into a better position before putting in the hardware. The awful lower back pain and sciatica in both legs that I had been getting is practically gone.

    However, I am now getting increasing nerve symptoms and pains in my legs and feet. I am about to have an MRI scan to see what is going on. An x-ray a few weeks ago showed the hardware to be in place.

    I also have symptoms from my neck, and one doctor thought that my legs and feet might be being caused from pressure on my neck. I am awaiting the results of an MRI scan of my neck.

    It is too early to say, but I worry that at least one of the adjacent discs to my fusion is now causing problems.

    My advice to you would be; read as much as you can, with a notebook beside you. Write down things that cause you to ask questions. When you next see your surgeon, go equipped with a written list of questions. In the end, we have to trust our surgeons. They are the experts, and although they do sometimes make a misjudgement, they are best qualified to know how to handle our often complex spine problems.

    I wish you well and hope that you will soon get relief from your pain so you can get back to your life. Do keep asking questions here. We are a friendly bunch, and very sympathetic to others who are suffering spinal problems and pain. :D

    See, my post was even longer!!! :))(

  • Thank you so much for responding. I do understand that people are not allowed to give real medical advice on this forum but that's okay because I am just looking for people's experience.
    I've been trying to find a story similar to mine but had no luck. I am so glad I heard your story amd know that it may be okay to fuse only one level. I'm still really nervous though because I've read that the recovery is very intense. I wouldn't want to have to go through it twice!My surgeon prefers the 360 degree approach so I am looking for stories about that too.
    Thank you again for your advice and I will keep searching these forums for answers :)
    PS- please post when you get the results of your MRI. I am interested in knowing if it is your others discs causing the pain.
  • Welcome to the forum. I read your post and understand your confusion. I would talk to your surgeon about the discogram showing pain in the level above and fusing that level, and what effects it will have on the L5-S1. I had a 2 level fusion on my L4-5 L5-S1. I had a tear in the disc above it, but decided to go only with a 2 level fusion as I was told the risk for non fusion goes up the more levels you have done. Now 2 years later I have had to have another 2 level fusion for the 2 discs above the fusion.
    So what I am trying to say is, if you do a fusion, ask your Dr about both discs at once, so you can possibly avoid another fusion. It wont effect your fending that much on those levels. I would rather go through one surgery than 2 if I was able to choose. But only your Dr can guide you on this decision.
    I do know that when you fuse your discs it puts more pressure on the above and below discs. So any discs that are unstable have more pressure on them and more chance of creating more problems. Good Luck whatever you do, and please keep us posted. If I can help you, please feel free to PM me at any time. I hope this makes sense to you! Hugs, Robin
  • SpineAZSpineAZ WiscPosts: 1,084
    One thing to know about Pain Management as they will remove you from their care if you are not willing to comply with the regimen. So if they say you must take MS Contin 2x/day that's what they expect. Now I know it's hard to work on that medication and they may have been inflexible, but just know they will want to see full compliance with what they prescribe.

    Go see a few Orthopedic Spine Surgeons and/or Neurosurgeons to get multiple opinions. Also see if there are other pain management doctors that may have some suggestions such as radio frequency ablation, etc. You'll have to make sure you are confident with whatever path you choose. I can tell you in my 20's fusion was easy and it increased my quality of life but that doesn't mean it works for everyone. So look at all your options and make the decision that works best for you.
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • First I just want to say thank you guys for responding. I really do appreciate everyone taking time out of their days to give me advice :)

    Robin- That is exactly what I have been thinking. There is no sense in getting a one level fusion when I know I will need the next level fused within a few years anyway. Also, I am sorry to hear you had problems with your fusion :(

    SpineAZ- That is why I dislike pain management programs. They basically own you and watch your every move. I felt as if I had no input on my treatment during my time in pain management. My PM&R suggests I go back into pain management but I really don't want to go through all that nonsense again. I especially do not want to start a standing pain medication if I have the option to get surgery shortly. I am young and I am scared enough of becoming addicted/dependent on my pain meds now. I am very happy to hear that the fusion improved the quality of your life in your 20's. An improvement in my quality of life is really all I'm asking for. I do realize there will be restrictions and I won't be able to do everything that people in their 20's do, but if I can do a little of it without wincing in pain I will be extremely satisfied. Do you mind me asking how old you were when you had your first fusion? Also, I have been to many doctors for this issue (internists, emergency, orthopedists, physiatrists, surgeons, etc.) I think I finally found the surgeon I can trust my life with. He is very well liked and and known for great patient outcomes. Also, the hospital he will be performing the surgery at is well known for great patient care.
  • poodlemama99ppoodlemama99 Posts: 44
    edited 07/22/2014 - 7:12 AM
    I have a 4 level lumbar fusion and find that Twisting is an issue but if you are not a competitive gymnast i would not worry too much about that. I would not hesitate to fuse if your pain is that bad. The body is adaptable to changes and you will find the lack of range of motion is not as big a deal as you think. Just my opinion of course.
    4 level posterolateral fusion L2-S1 with rods and screws and cadaver bone. Spondylolisthesis, spinal stenosis, scoliosis, sciatica, DDD, facet disease and arthritis. September 2002
  • im 41 had alif lumbar fusion L4-L5 i got hurt at work i told my boss that something is wrong my groins was killing me and my lower back was get stiff also.i kept telling these doctors what my pain was and where,i guess they thought i was crazy .finaly i got in with doctor which his name is lorio very good doctor.well they wouldnt give me no pain med till after surgery i was hurting real bad.i got 3 things wrong with my back he fixed the worse 1 for now,after i had it 1 -4-11 he told my wife that he had never seen such bone mass that bad.they couldnt see it on my mri or cat scan,and even had dye ran through my spine,i guess he thought i was just there for the pain med,my feet and left leg and both hips killed me,,then my right leg started,so thats when i decieded it was time for a fusion,,im doing alright no pain in my feet or groins,so far but my hips feel like ive got cramps in them and thats painful,he said that would go away after my nerves hill .i hope hes right,and also they went through my stomach to do this,im glad they didnt do both back and stomach..he said he was but didnt,just the front,,faster recovery do it that way.and far as bending 4 degree's is all ive lost .that i can tell.and im also glad i didnt go with just 1 oppinion,because the first doctor wouldnt fixed my problem that was cause all this..sorry for being so long of a reply im sure i missed alot more..tc
  • Welcome to Spine Health Betina :)

    Just because the EMG was negative does not mean you were free from nerve injury. Spinal Instability can cause intermitten issues.

    I had a bad L5/S1 disc (all but gone) and a not so good L4/L5 disc with "retrololisthis" It tool about 15 months to find the problem. It did not show up on mri or plain x-rays. I chose to fuse both at that time since my NS said it would be better to go in only once (less scar tissue etc).

    As for the meds, can the Ortho/NS provide scripts until you have surgery? My PCP provided the scripts until my first surgery, then my NS took over and handled them for about 2 years. I recently went to a PM but I have chronic pain in my T-spine from a MVA.

    Good luck,

  • Poodlemama99- I'm definitely no gymnast lol. That's really relieving to hear that about range of motion. I've read some people are so stiff afterwards while others are only slightly limited. I hope I fall into the latter catergory if/when I do the surgery.

    JulieA- As for the EMG, I hope the negative was a true negative because I've read that it can take about a year for the nerves to heal. Right now my PM&R said he does not want to give ms any more medication. When I brought this up to my surgeon, he said that he's not really a pain specialist and he'd be comfortable with me in pain management for now also.
    My surgeon has given me medication before though. I'm hoping he will do so again as I lost my health insurance and my new plan does not kick in until March. I was supposed to start PM next week but without insurance it will cost me $600 that I do not have. So I am really hoping my surgeon will help me out with managing my pain until March.
    Also, I'm not too sure if I mentioned this before but I feel like going into pain management at this point is a step backwards. Why get put on a standing pain medicine when I may not need them in 2 months? So I am just crossing my fingers until I can get in touch with my surgeon.
    As always, I appreciate all of your input. Thank you again!
  • I was 35 when I started having problems. Saw the ortho, took x rays and MRI. Retrospondylolisthesis, DDD, arthritis, you name it all on the L5/S1. To make matters more interesting S1/S2 were naturally fused.

    Long story short, I dropped about 25 pounds. Worked out regularly, then last spring, enough was enough. Thought long and hard and finally had the surgery in June of 2010. It was a rough few months. Now, I am back at the gym 5 days a week, mostly still cardio, as I am still restricted to 30 lbs. The bone growth is happening. To be honest, I couldn't be happier. I know many continue to have problems, but I honestly feel better than I ever have. The doc recently added yoga to my routine to get a stronger core and keep flexibility. My advice, put it off as long as possible, but don't feel like a wimp when you decide enough is enough. Only you will know when it is right.

  • AZmikey- I love a good success story! I think I have had about enough at this point. I don't want to waste another youthful year in chronic pain. I am pretty sure I will be having the surgery. Now I just need to decide if I want to do one or two levels :/
  • Hi,I posted before, but just wanted to clarify some things to you. My first fusion was successful, I just didnt take care of the one level that had small problems, so they developed into big problems, thus the 2nd fusion. I am doing great now, walking straight, which my friends said after this fusion that I look so much better, I was walking like a 80 year old. So to me this is also a good sign. My pain meds are down also, cut by 3/4 at this time from where I was a year ago.
    As far as pain meds before surgery. I tapered mine down before surgery this time, cause I didnt want to have to increase further. It wasnt a fun month, but I was sucessful in keeping my post op meds down to a lower level than the last fusion.
    I hope that you discuss all the pros and cons of 2 levels and feel comfortable with it before you proceed. I told my surgeon this time, to fix anything that looks like it could be any kind of a problem, as I didnt want to go through this again in another 2 years. I am feeling better than I have in 4 years, and a nurse at the local hospital told me the last time I went walking there that I had a true smile on my face and not the fake one I have had for 4 years. She said I looked so good and she was so happy for me. That, really raised my spirits. I thought I had everyone fooled, but your face shows your pain to others.
    Good Luck in whatever you decide. If I can help in any way, please let me know. What is really important is that you are confident in your decision and your surgeon. It is a long healing process, but I know sometimes it helps to have youth on your side 8> Take care and I hope you make the right decision for yourself, and it all turns out great for you. Take care, Robin
  • Hey - my discogram kind of showed the same kind of results!!!

    If we had not done the discogram the NS would have fused the disc that LOOKED the worst when in reality the one that was causing the most pain was the OTHER disc.

    We ended up fusing BOTH. One for it's instability and the other for the pain it was causing.

    About flexability - My NS used a plastic capsule thing (he called it a bullet) that was filled with BMP and place around the spine. These are flexable and I've been able to still bend.

    I honestly am VERY happy with how much I can still move. particularly since BEFORE I had surgery everytime I would move would give me massive pain.

    I don't mind the trade-off: not moving quite as much vs. massive pain to move. It was worth it for me.

    Good Luck
  • Hi itsbettinaaa
    I am quite young to my cervical issue and your question "to fuse or not to fuse" brought a similar doubt to me.

    I always read about fusion and on reading the link below


    I wonder if there are 2 different choices to go when reparing a disc (that can be discussed with the doctors).

    I also wonder if artificial-disc-replacement is something newer (or not fully tested - with all types of discs) that there is a preference (in terms of safety since this is a tested solution) to fusion.

    Anyone knows more about this. Are there really 2 options (to discuss with doctors)....

    Sorry to bother you all with so many questions (Mechanical engineers are like this!!)

    It is at least an opportunity to increase knowledge.

  • Freshman- I actualy did discuss artificial disc replacement with my surgeon. The main reason we decided to avoid it is because my insurance will not cover. He says it would cost around $10,000. He told me how some insurances aren't covering ADR yet because it is so new. In the US, there is no long term studies done on them. I have read up on ADR and if my insurance covered it I would probably feel more comfortable doing that rather than fusing (that is my opinion, not advice).

    If you have questions about it your surgeon should be able to help. They may not have all the answers but they can help you find them.

    I did find a lot of information on ADR throughout this site and with google. I don't want to give too many details on the actual surgery because I don't want to violate any spine-health policies.

    Sorry if I wasn't too helpful.

  • To fuse or not to fuse;
    that is the question;
    whether 'tis stabler in the spine to suffer the pains and trials of outrageous surgery, or to take ESIs against a sea of troubles, and by exercising, end them?

    To live; to sleep; no more; and by a sleep to say we end the sciatica and the thousand electric shocks that nerves are heir to, ...................

    (I don't know if you learn Shakespeare in the States! But I couldn't resist - sorry 8} )
  • ok that was funny, and yeah i was thinking the same thing. I just didn't come up with a good one to mock the Shakespearean terms... LOL

    and to the OP. You're 21 and now have a good diagnosis. Given a choice, my 1st answer will always be to only do what is specifically necessary. Surgeon would have to make an extremely compelling argument to me to do 2 levels instead of 1 for several reasons. DDD does not always hurt. Many go through life with nothing more than a complaint about back ache and take an Advil. Others go through significantly more. Take the minimalist approach. You've got the rest of your life. The technology will get better. If you can stave off the 2nd level for 5 years or more expect the fusion and other options to be better and less limiting.
  • Thank you for your comments on ADR.
    I came to similar conclusions based on what I had the opportunity to read.

    It is new technology and not extensivelly tested as others along the years (since it is newer). It may be the technology for the future (eventually better) but it seems we are stil on a transition point.

    Good to exchange.

    I have an appointment with a NS tomorrow. I will ask about it and let you know.


  • I found these videos about ADR




    I am not sure you have seen them so I send them to you.

  • jellyhall said:

    To fuse or not to fuse;
    that is the question;
    whether 'tis stabler in the spine to suffer the pains and trials of outrageous surgery, or to take ESIs against a sea of troubles, and by exercising, end them?

    To live; to sleep; no more; and by a sleep to say we end the sciatica and the thousand electric shocks that nerves are heir to, ...................

    (I don't know if you learn Shakespeare in the States! But I couldn't resist - sorry 8} )

    That is the greatest thing I have ever read on this site lol. Thanks for the laugh!
  • To Z06- You bring up a very good point. I even said so myself that if my insurance covered ADR I would get it. In 5 years from now they just might. I will definitely put this on the list of things to discuss with my surgeon!
  • After watching the videos, if what we see is really happening years after surgery, I would change my opinion to "Maybe the transition point has already passed". Really do not know.
    It would be interesting to know peeople who applied this technology years before today to know what are the results in the long term.

    If you have more information, pls let me know.
  • I was successful in putting off the surgery for roughly 5 years by making lifestyle changes, losing some weight and dedication to hitting the gym. I was fortunate that my pain and numbness was primarily at night and while sitting. The elliptical or the bike? No problem. Eventually, I couldn't do much more than the stretches. At that point, at 40, I decided enough was enough.
  • SpineAZSpineAZ WiscPosts: 1,084
    I have a friend I met through our mutual surgeon and she was there to have her ADR fused. Yep, fused. The surgeon she saw first pushed ADR and after her experience and research she felt it wasn't ready for the market AND patient selection may be an issue.

    My old spine surgeon was doing limited ADR but the person's spine had to be otherwise perfect. He felt it worked better that way. Anyone with any damage above or below the area didn't seem to fare as well.
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • If you're interested in ADR in Germany with that doc whose name is plastered all over the internet. Do a Google search with his name and the word forum etc... There is a forum just for ADR patients. They talk about all of it, including travel etc..

    I'm with SpineAZ. I see a few on here from time to time who say it worked great. Even 3 levels and a couple who did 4 levels. I've seen a lot more who were going to a surgeon to get it removed and fused, or fused over.

    Keep in mind that while they are years ahead of us in Europe in doing these things. You don't live there. The ones who have bad outcomes have a problem. The docs here in the states, by and large, do not want to go in and clean that mess up. They'll tell you to go back and see that surgeon who did it. I didn't get the impression doing "redos" or "fuse over" was something he did. Not to dissuade anyone from ADR or new procedures. Heck I did AxiaLIF and that is arguably too new and questionable about the success. But going oversees to get it done worries me. Do your homework thoroughly before buying a plane ticket. You just added a ton more concerns and issues putting that into the equation.

  • Well I am in Europe (UK), and when I asked my much respected doctor about the possibility of replacing my disc, she said that it had been tried but without much success. She said that the artificial discs had caused wearing away of the vertebrae and the patients needed fusion in the end anyway. She also said that the surgery to remove the ADRs was very dangerous.

    Well, I suspect that things have improved over the last 5 to 10 years, and the material that the ADRs is made of has changed, but I think there are still some out there who find that they are still in pain at some point down the line. They seem to just fuse with the ADR in place now if revision surgery is needed, rather than removing them.

    I have also heard of some who seem to do extremely well after ADR surgery. Let's hope that they are still doing as well 5, 10 and 20 years down the line. Mind you, I hope that I am still doing well at 5, 10 and 20 years down the line!
  • Thank you for the additional information.

    That is why I wrote "if what we see is really happening years after surgery" and "It would be interesting to know peeople who applied this technology years before today to know what the results are in the long term".

    It seems that you have more answers about ADR.

    In fact, the videos I sent and watched had patients that had just got the surgery. I did not see videos with patients years after surgery speaking about ADR.

    Hope all technologies advance, so more and more options can be available to all who need.

    Thank for your reply and information.

    Should you have more information and links please feel free to send. I am interested to know.

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