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So, my bones aren't going to heal/fuse after fusion surgery. What now?

BrihtwulfBBrihtwulf Posts: 69
edited 06/11/2012 - 7:44 AM in Back Surgery and Neck Surgery
I recently had an appointment with my neurosurgeon. I showed the new x-rays I had done in a different thread. Apparently my bones aren't going to heal/fuse for some reason. My doctor says they believe it's "genetic". Isn't everything that goes wrong they can't explain genetic? :) It just seems that way I suppose.

Anyway, what happens to people like me now? I'm still in a very uncomfortable level of pain, which while it's not crippling is very inhibiting in my life. I'm only 31 years old and I have less mobility than many people in their 70's! The surgeon mentioned something about the possibility of the hardware starting to fail a few years down the road. Anyone know what kind of hardware problems crop up when your spine won't fuse?

Am I looking at more surgeries? My surgeon said, "more surgeries like this in the future are likely to have the same outcome." What is the reality of THAT? And why didn't it heal? Does that mean if I broke my arm it wouldn't heal right? Just SO MANY questions... Some of these I'll be asking when I have my follow-up with my primary physician, but I thought maybe those who share my condition might have some insight.

It's so discouraging... And of course the doctor gives me the "don't give up" and "you have to keep trying even through the pain"... I know he means well, but it's a little different to the person who actually FEELS the pain. So, what next?

-JJ
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Comments

  • I would try to find out more about this "genetic" diagnosis. YOu make a good point about a broken bone. If this is real you need to know what all of the implications are.

    My guess is that saying it is genetic is his way of putting it back on you. After all he can't make you fuse.

    I think it might be a good idea to talk to an orthopedist who specializes in bone growth or osteoporosis since that is similar to what he is trying to say is going on. I'm sure there are some tests they can do that would give you a better answer.
  • I have to agree with Kris on the genetics being the reason you aren't fusing. In aircraft maintenance, the write up "could not duplicate" comes to mind. Both mean the answer is unknown!

    I think I would be trying to get with (Like Kris said) an Orthopedist. A 2nd or 3rd specialist to look you over and maybe conduct some tests to see what is going on. My NS is good in that when things come up out of his area, he knows who to send me to. Rare ego level for a doctor huh? :)

    Since my C6 bone is cracked all the way through, I can sort of guess what they are going to have to do to fix it - shudder. Since it is bone, I might seek an Ortho/spine specialist, but just not there yet. I'm still on the Neurologist trouble shooting phase!

    Don't give up, find another specialist (since you aren't fusing - and given the reason given) Orthopedist is probably better as they are more learned in bone and its physics! Take care, and please keep us posted. Again, sorry you are going through this. Sending positive energy your way JJ!!

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Does your surgeon have you using a bone growth stimulator? My PT recommended that my surgeon order one for me. She has to put that in writing to the surgeon. He was suppose to call me today...that did not happen.

    How does, in detail, "genetics" adversely effect bone growth? I would want to know specifically the correlation.

    Lisa
  • My surgeon didn't mention using a bone growth stimulator. He seemed of the opinion that there was nothing to do now but "don't give up staying as active as possible" and "try to work through the pain". I have a hard time dealing with his casual attitude about my condition. One thing that really bothered me too was that when he first started talking to me about my x-ray and results, he didn't even remember when my surgery had been/how long it had been!

    At first he started to say the whole "well, it can take a while, and we usually see the fusing by the 9 month mark". Then double checked himself and asked the nurse "How long ago was his surgery?" To which I immediately replied 10 1/2 months ago! His face changed at that point, and he started stumbling over his words trying to explain what was going on.

    So then he said that it is likely due to genetics that I didn't heal at all or fuse. And he informed me of the possibility now that my hardware could begin to "fail" or move about inside my vertebrae after a few years. I have an appointment to see my physical therapist today, and to discuss with him the results as well. Regardless of what he says, I'll be asking my friend who is a PhD in PT about it as well.

    I also have a follow up with my physician, and I guess maybe I should have an ortho doctor give a second opinion. I'll probably use the same doctor who did my shoulder surgeries. It was also suggested I follow up with a rheumatologist. So many things,... Very frustrating. And the surgeon didn't even have the decency to read my chart before talking to me!
  • While I have not had surgery, your comment is a great one. I have been to many doctors and I have noticed that when I go to the quote-unquote better doctors and hospitals that they even forget you more.

    They really do not understand at times how much this is really ruining your life. How much both mentally and physically you are just trying to hold it together. Several times I was at the point where I just wanted to scream and give him a really good shot in the lumbar area and tell him "remember now". This is how I feel everyday of my life! I am pretty sure he will not forget me the next time he sees me.

    But I than take a step back and remember I am honestly just another file folder to him. He can not get too invested in every case as he knows it will drive him through the same range of emotions we are going through. He also knows that while we may be forever in pain, we will not die from it either.

    We really have to try and take control of our situation cause honestly no one else will. But at times I really do not know how.

    Thanks for the point...nice to let out a bit of the frustration this way.

    -js

    BTW I take a supplement called Strontium which is suppose to help with Bone issues. I tried just about everything natural to reverse my situation with obvious not much success but maybe for you Strontium can help?
  • Genetics seems to me like a cop-out. Sure we are all different and some of us have bloot clotting disorders or heart disease or osteophorosis or one of the other great things that run in our families - thanks granny. So it is possible that whether we fuse may be due to genetics.

    But....it could be from other things too. Things like the surgeon not doing something quite right, or hardware not placed right or not holding, or an immuno rejection of the bone material or a whole bunch of other things.

    The best we can do is try to get a competent surgeon. Make sure what they are going to do makes sense. Follow all the directions post-op. Eat well and do whatever is recommended by the doctor. And hope.

    If the surgeon can offer no other ideas to help fusion I would go to an orthopedist.
  • Hi, Im in the same boat as u. I just found out last week that my 3 level cervical fusion was totally a failed fusion. Neither level fused. Its been 2 years and nothing happened except that my hardware has slipped and is causing problems at the level above the so called fusion. WOW. My neuro is going to schedule a posterior surgery to put rods in to stabilize everything. Really sucks. I dont want to have to go through it again but I have no choice. I hope things go better for you. I also have to have a lumbar laminectomy at 3 levels. Man my back is the worst part of me, everything else is good. Us spineys wish we could just be normal again. People that have no back problems are so lucky.(Like my husband). And they just dont get it at all. All we can do is hold our heads up as high as possible and keep on going and dont stop. It hurts when you stop, lol. Im sending luck your way and hope it goes well.
    God Bless and take care.







  • Next, is how I see most doctors looking at things. They have so many patients and such jammed packed days that even if they care, or at one time cared, they start feeling immune to the onslaught of patients and their problems. It is very hard to find a doctor who doesn't fall into this catagory at least somewhat. It is wrong for them to give up on the reason most went into the profession to begin with. Keep in mind that it is a business also and if the doctor is in a group they are expected to turn X number of patients a day for the group. As has been mentioned doctors don't know everything and while they have been trained a little in a lot of things they don't know it all. I have heard the term genetics also in a doctors office but not in the same context as you.

    What kind of bone material was used in your fusion? Was it yours or a manmade version? I think the difference with a broken arm is that it really can be immobilized for a period of time and doesn't have to contend with the constant pressure of the spine. You were fused to prevent movement in that level of the spine so if you don't fuse the hardware will fail at some point. I have ofen wondered why when they fuse someone why they don't put hardware in both the front and back of the spine, or on both sides. I guess that the incident of fusion failures is not high enough to warrant the extra work and time on the table. To me a one sided fusion could at some point act as a hinge to some degree.

    We really have to try and take control of our situation cause honestly no one else will. But at times I really do not know how. Very well put.

    I agree that a new pair of eyes should have a look at your situation and give you some cold hard facts as to what your looking at now and in the future. You will probably have a hard time getting another doctor in your area to look at you as most tend to not want to deal with another doctors patient especially one that still has problems. When you find one that will you most likely will have a good doctor that is sure of himself and maybe doesn't have the big ego.

    There have been a couple of doctors, in my time, that I've wanted to smack and say wake up when I've been dealing with them. These were not all spine doctors.

    Good luck with your next step and try not to let it get you down.

    David

  • I had a huge spinal fusion in Feb. 09 - I have been back every 3 months for followup visits & the Surgeons office where I go is very / completely up to date - fantastic x ray dept = so every time I have asked if I showed fusing & the Surgeon & the P.A. every time have told me that these type of Xrays can't show fusing - that I would need a scan & they just prefer to presume that I am fusing - all of the hardware is in place ( they see that on xrays) but I feel suspicious - everyone else tells about there is or is not fusing showing on their xrays - could they be giving me the run around?

    I also still have a lot of pain & have been through a couple of extra rounds of physical & aqua therapy & now am going to a water class just to try & get some relief - plus I walk faithfully

    Can anyone recall a Surgeon telling them that fusing doesn't show up on " these types" of Xrays? I feel like I am wearing a brace under my skin - that is how much I think that I feel the hardware - it's been 15 months -

    Does this sound suspicous to anyone else - this Surgeon has the most advanced office / spine hospital in the area - my ins. company has been great It's not like they have said, no "scan" whatever scan they are talking about -

    I am starting to wonder if I have not shown signs of fusing yet - I had a 360 from just below my shoulders to my tailbone, a rib removed & a complete discectomy - & maybe they just don't want to tell me?

    Any thoughts on why my surgeon doesn't have xrays that can or can not show signs of fusing - I'm not sure they are leveling with me
  • susie said:
    I had a huge spinal fusion in Feb. 09 - I have been back every 3 months for followup visits & the Surgeons office where I go is very / completely up to date - fantastic x ray dept = so every time I have asked if I showed fusing & the Surgeon & the P.A. every time have told me that these type of Xrays can't show fusing - that I would need a scan & they just prefer to presume that I am fusing - all of the hardware is in place ( they see that on xrays) but I feel suspicious - everyone else tells about there is or is not fusing showing on their xrays - could they be giving me the run around?

    I also still have a lot of pain & have been through a couple of extra rounds of physical & aqua therapy & now am going to a water class just to try & get some relief - plus I walk faithfully

    Can anyone recall a Surgeon telling them that fusing doesn't show up on " these types" of Xrays? I feel like I am wearing a brace under my skin - that is how much I think that I feel the hardware - it's been 15 months -

    Does this sound suspicous to anyone else - this Surgeon has the most advanced office / spine hospital in the area - my ins. company has been great It's not like they have said, no "scan" whatever scan they are talking about -

    I am starting to wonder if I have not shown signs of fusing yet - I had a 360 from just below my shoulders to my tailbone, a rib removed & a complete discectomy - & maybe they just don't want to tell me?

    Any thoughts on why my surgeon doesn't have xrays that can or can not show signs of fusing - I'm not sure they are leveling with me
    I would be demanding whatever scan they are talking about. It certainly isn't clear to me where/how they tell if there is fusing going on. Maybe one of the doctors that are supposed to be on this site can provide some info.

    David
  • Js, I like how you put it concerning relations with the surgeons. I too was shocked that my doc really didn't remember much about me. For me, this has probably been one of the biggest events in my life and surely has been a life changing one. I very much liked the idea of a quick punch to his back and going "Remember me now, b&^%h?" BUT, while that's a neat fantasy, you're equally correct in that if we look at it, there's no way one could be expected to remember all the patients, surgeries and what not. You put it well there. Fun reading and thanks.

    Aloha,
    Aaron

    p.s. but then again..my dentist remembers everything about me, my family, that I like flying, guns and motorcycles, my wifes name, my dental history...well you got the picture! Kinda makes me go Hmmm...
  • Susie~ I too had a 360 L4-5 fusion. I have total confidence in my surgeon. This is my 3rd surgery with him, my husband had a fusion with him. I have total confidence in his judgement and skills.

    He feels the same way. At my 6 week follow up, he took x-rays and said the same thing = that it really won't show on the x-rays.

    In a few weeks I go in again for my 3 month follow up.

    David~ they can do instrumentation from the front and the back. That's the 360. I have 2 rods, 6 screws. 4 in the back and 2 in the front.

    It is a heck of a surgery to go through. I have 3 incisions = over 26 inches in insicions (I'll look hot in a bikini, huh! :)) but the average success rate is 95%. Time will tell I guess.

    Hoping that everyone will find peace and the ability to find the answers that they need! :)

  • jayhawk said:
    Susie~ I too had a 360 L4-5 fusion. I have total confidence in my surgeon. This is my 3rd surgery with him, my husband had a fusion with him. I have total confidence in his judgement and skills.

    He feels the same way. At my 6 week follow up, he took x-rays and said the same thing = that it really won't show on the x-rays.

    In a few weeks I go in again for my 3 month follow up.

    David~ they can do instrumentation from the front and the back. That's the 360. I have 2 rods, 6 screws. 4 in the back and 2 in the front.

    It is a heck of a surgery to go through. I have 3 incisions = over 26 inches in insicions (I'll look hot in a bikini, huh! :)) but the average success rate is 95%. Time will tell I guess.

    Hoping that everyone will find peace and the ability to find the answers that they need! :)

    Yes, I am aware of the front and back fusions. What I was trying to say is I wonder why they are not routinely done. I know its a much bigger surgery but I would think the success rate is much better also. Must be a reason---we are not doctors.LOL

    David
  • It makes me wonder if it is an insurance reinversement or willingness to pay.....it was difficult to get insurance approval. But based on my age, fitness level, general health ie no additional health issues, my surgeon really felt it was the way to go. The success rate is incredibly high.

    I guess time will tell....I am scared about fusing....
  • I got much the same comment from my surgeon. He said "You must be fusing, all your hardware is in place and looks excellent". I had a ct scan at about 9 weeks, to check hardware and then a MRI at 6 months to check to see if an answer could be found for my continued leg pain. None found. I have not had post surgery plain old x-rays. He just didn't think they were necessary. I don't know what the deal is. Are they trying to save us from too much radiation? There has been recent info out about the large amount of radiation used with CT scans and their detrimental effect on the body. So at this point he has discharged me and I have no idea if I am fusng or not. And I still have pain!!
  • It's true that when you break a bone they can put you in a cast and you stay that way for 6 weeks. Pretty darn good success rate.

    As I started reading these last few posts an image popped into my head. Remember from old movies the traction rigs they used to have? lol I wonder if we would be better off with more enforced rest in bed? I know this isn't good for muscle tone etc etc. I just read on SH that you need 3 months of no movement in the fusion and then after that you need to stress the fusion to make the bone heal stronger. So maybe we need to allow ourselves more time off.

    Oh and they also claim a 90-95% success rate for fusion. What we always need to keep in mind when reading these posts is that most of the successful fusions have moved along with their lives. The peeps who are here asking questions are the ones who are searching for answers to their problems or have had complications. Nothing personal guys but I would love to kiss this forum goodbye!
  • I'm really glad I posted - I was thinking it was just me - I think was had me so puzzled is they
    are the best place in town & other people were
    told that fusing could be seen on xrays & my
    Dr was saying you can't see it on an xray -

    Okay, I think this will satisfy me until my next
    appt. & then I can maybe ( if I can say anything
    to him) work in do I at some point have a scan
    to check for fusing

    It's not that I don't think I am fusing - it's just
    I haven't been told that I am - so thanks you guys
    for answering me

    I do have a lot of pain & a tremendous amount of what I guess I would call being extremely uncomfortable - I had felt over the weekend like
    there was a sword sticking out of my upper left
    back/shoulder area - I mean it hurt - .......
  • I'm glad you are feeling so well, that is great.

    I have 24 screws, 3 rods - had 50 staples
    the internal pain is gone but I still have
    a lot of back pain & I'm a good patient

    I have bought several swimsuits for aqua therapy & my water class & I'm going to the pool in a little while & I was able to find suits with a high back, most have low dips - I guess I'd rather not show
    my scars but I'm not ashamed of them - just don't
    want to get in a conversation about them !
  • jlrfryejjlrfrye ohioPosts: 1,110
    I also am a non fusion patient. I have had 5 cervical surgeries and all 4 failed. The last surgery is still too soon to tell if I am going to fuse. The rods and cage were used to stabilize my spine. My surgeon has tried everything.He has used stem cells that also failed. This last surgery he used bmp and time will only tell. The first failed due to cracked bone plug, the second failed, well we dont know why. The third seemed to last the longest around three years and then all hell broke loose. I had three broken screws and my plate was backing out putting pressure on my esophagus. Then a corpectomy was done at 2 levels with fusion of three levels. Added a cage and plate. threw some stem cells in and it all collapsed 8 months later. The dreaded posterior surgery was next and time will only tell. If it fails who knows if anything can be done.
    Susan
  • While there is a limit to how much the x-rays can show fusion progression early on in the process, it is quite clear when you look at an x-ray at 9+ months and see absolutely no bone growth. The spaces between the vertebrae are still clearly defined and visible, and the edges of those bones are also clear and distinct.

    You could also get a CT scan (which I actually did on an unrelated digestive system problem). My scan just happened to show my lumbar area, etc. I also had an MRI done when I was having continued pain. Luckily, my primary physician is very thorough. In every case, the available evidence from that form of imaging showed there was no evidence of fusion.

    Additionally, it was clear that the hardware was bending when comparing distances during flexion/extension. With no manipulation other than my own moderate bending forward and backward (not far before it starts to hurt), the hardware was giving a 2mm width variation between my vertebrae. When you hear 2mm, you probably don't think too much of it. But take a look on a ruler at 2mm, and now imagine that it's your spine doing the moving! And that's just from a little leaning forward and backward!

    I just think surgeons are hesitant to admit a failure, and even more so to admit that they may have done something wrong or incomplete...
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