disintegrated fusions

[Carol56]

Has anyone had issues with fusions that did not take. My pain doctor told me he doesn't see any fusion material when reviewing my ct scan......although two surgeons prior had looked at my scans and never said this.

Can I survive without the fusions? I was fused from T6-L4.........Yes, that's 11 fusions. (this was to correct scoliosis).

I am waiting to see a radiologist to confirm one way or the other.......but I am petrified. I have been in constant agony since the surgery. The surgery was Jan 2016. It was a revision surgery as I was allergic to the first set of rods (stainless steel). My surgeon told me when he did the second surgery that my fusions didn't look very 'healthy' or 'robust'.........yet he assured me that they would heal. I don't believe they healed at all......but did not realize that they have most likely disintegrated. I am a wreck.

Can anyone shed any light on what may have to be done? if anything?

Pain doctor is looking at doing ablations on 11 levels of my spine. He will essentially burn the nerves at each facet level.

I welcome any comments.
Thanks
Carol

[titaniumed]

My pain doctor told me he doesn't see any fusion material when reviewing my ct scan......although two surgeons prior had looked at my scans and never said this.

Carol

Usually rods break at some point if we don't fuse....has anyone noticed any breaks? I am not sure how conclusive or convincing CT's are for diagnosing these things, getting back in is the sure way to find out....What is your scoliosis surgeon saying? Going back in is always an extremely difficult decision. This is never an easy thing, I have had my scoliosis and vascular surgeon both express hesitancy when talking about going back in.

There are various options in dealing with hard to fuse levels.....depends on the surgeon, sometimes ALIF is done, or other procedures used to fuse from the front of the spine. Fusing from the front and the back helps in this regard. They also use BMP, and synthetic's bone paste's etc. I had no bone used in my surgeries. None at all. That was almost 10 years ago so I am assuming that this technology has improved since then.

Sorry about the pain and agony dealing with all of this..... Be sure to let us know if you have the nerve ablation done and how that turns out.

Ed

[LindaRacine]

Has anyone had issues with fusions that did not take. My pain doctor told me he doesn't see any fusion material when reviewing my ct scan......although two surgeons prior had looked at my scans and never said this.

Can I survive without the fusions? I was fused from T6-L4.........Yes, that's 11 fusions. (this was to correct scoliosis).

I am waiting to see a radiologist to confirm one way or the other.......but I am petrified. I have been in constant agony since the surgery. The surgery was Jan 2016. It was a revision surgery as I was allergic to the first set of rods (stainless steel). My surgeon told me when he did the second surgery that my fusions didn't look very 'healthy' or 'robust'.........yet he assured me that they would heal. I don't believe they healed at all......but did not realize that they have most likely disintegrated. I am a wreck.

Can anyone shed any light on what may have to be done? if anything?

Pain doctor is looking at doing ablations on 11 levels of my spine. He will essentially burn the nerves at each facet level.

I welcome any comments.
Thanks
Carol

Hi Carol...

If there's no fusion, that's definitely something that can be seen on CT. The fact that you have pain is significant. Do you know if any biologics were used in your most recent surgery? Typically, when there is clear evidence of non-fusion, BMP is used to aid in the new fusion.

I would definitely be concerned about having a bunch of nerve ablations. Please find out how many of these procedures (ablations at >10 levels) the pain management doctor has done, and how many of those patients have had to have multiple procedures. Even if the ablations help with your pain, they will definitely not correct the problem, and you're probably going to have to deal with it at some point.

Where are you located?

--Linda

[Carol56]

Hi Linda
I live in Connecticut. My surgeries were in Boston at New England Baptist. I am so disappointed with my doctor up there. First, he did the fusion surgery to correct my scoliosis in May of 2015.....and he used stainless steel.......they never bothered to ask if I was allergic to 'nickle' (which is IN stainless steel)........well......after months and months of my pain not going away........he finally agreed to replace the rods with titanium. That surgery was Jan of 2016. He told me after he operated this second time that my fusions didn't look very 'healthy'. I asked him why and he said (although this is not written down).........that the interference of the nickle may have damaged the fusions......or slowed their healing process. I asked him month after month, 'will they heal?'........and he always said 'oh yes, they will heal...just needs more time'. At my 8 month checkup..........I told him I was still in terrible terrible pain........agony.....and he simply said.......gee, that's very unusual.......here........take this prescription for Gabapentin..........and then he said goodbye, and he didn't ask to see me again........I really think he wanted me to just go away......doctors don't need 'problems'.........they have plenty of work to do that's much easier. Now at this time......I was still on opiates.

So......I go home thinking I will just need to be patient............in the meantime.........after my surgery.........I went to see two others surgeons to seek their opinion. They both said.........everything looks fine...........go to pain management.

and so, here I am..........but it's the pain management doctor who told me he doesnt' SEE ANY fusions........I said, 'Any?', and he said no.

So he is willing to do the ablaitons (of which I did ask how many he has done and he said 'hundreds'.....weekly).

But...........I think I need to find someone who will address this fusion issue........first, I am having my ct scan evaluated for a second opinion by a radiologist (someone who was refered to me by a friend who works with him). Then, I will have to find someone who can address this.

I am a wreck.........aside from being in terrible agony. If I don't 'lie down' for at least two hours every other hour.......I'm a disaster.

Oh, my surgical records do say something about BMP being used........but I really don't know what that all means. I just know I need help and I'm afraid no one is going to want to take on my case. My Boston surgeon is no longer in my insurance plan.......there's no way I can afford out of network costs. I had to retire due to this pain and I am on a very limited income. I am however.....going in front of a judge tomorrow to hopefully get approved for disability.

Any other input you may have is always appreciated.

Thanks so much
Carol

[LindaRacine]

Hi Linda
I live in Connecticut. My surgeries were in Boston at New England Baptist. I am so disappointed with my doctor up there. First, he did the fusion surgery to correct my scoliosis in May of 2015.....and he used stainless steel.......they never bothered to ask if I was allergic to 'nickle' (which is IN stainless steel)........well......after months and months of my pain not going away........he finally agreed to replace the rods with titanium. That surgery was Jan of 2016. He told me after he operated this second time that my fusions didn't look very 'healthy'. I asked him why and he said (although this is not written down).........that the interference of the nickle may have damaged the fusions......or slowed their healing process. I asked him month after month, 'will they heal?'........and he always said 'oh yes, they will heal...just needs more time'. At my 8 month checkup..........I told him I was still in terrible terrible pain........agony.....and he simply said.......gee, that's very unusual.......here........take this prescription for Gabapentin..........and then he said goodbye, and he didn't ask to see me again........I really think he wanted me to just go away......doctors don't need 'problems'.........they have plenty of work to do that's much easier. Now at this time......I was still on opiates.

So......I go home thinking I will just need to be patient............in the meantime.........after my surgery.........I went to see two others surgeons to seek their opinion. They both said.........everything looks fine...........go to pain management.

and so, here I am..........but it's the pain management doctor who told me he doesnt' SEE ANY fusions........I said, 'Any?', and he said no.

So he is willing to do the ablaitons (of which I did ask how many he has done and he said 'hundreds'.....weekly).

But...........I think I need to find someone who will address this fusion issue........first, I am having my ct scan evaluated for a second opinion by a radiologist (someone who was refered to me by a friend who works with him). Then, I will have to find someone who can address this.

I am a wreck.........aside from being in terrible agony. If I don't 'lie down' for at least two hours every other hour.......I'm a disaster.

Oh, my surgical records do say something about BMP being used........but I really don't know what that all means. I just know I need help and I'm afraid no one is going to want to take on my case. My Boston surgeon is no longer in my insurance plan.......there's no way I can afford out of network costs. I had to retire due to this pain and I am on a very limited income. I am however.....going in front of a judge tomorrow to hopefully get approved for disability.

Any other input you may have is always appreciated.

Thanks so much
Carol

Hi Carol...

I'd like to recommend that you see a fairly experienced spinal deformity surgeon. Here are some ideas. These surgeons are all in NYC:

Barron Lonner
Todd Albert
Frank Schwab
Larry Lenke

--Linda

[susancook]

Thoughts on non-fusion

I asked my first spine surgeon about fusion. She said that frequently doctors think that they see fusion in their patients and less likely to see fusion when judging radiological films of other doctor's patients. The take home message there was that the judgement can be subjective. Having said that, if a halo appears at the site that should fuse, it generally means that there is not fusion at that site. I can see how that makes sense since a solid fusion would be opaque.
Susan

[titaniumed]

Carol

Linda is right, I keep re-reading your post, and yes, I would go down into New York....I know this is a quite a task since traveling with major scoliosis pain is a major ordeal. (Sigh)

Its always a really good idea to get your diagnostics burned to disc. That way you can e-mail your CT's and X-Rays before travelling. You can contact the radiology dept in your hometown and get them to do this. I had my films thrown out many years ago due to a surgeon retiring, so don't let the person at the radiology desk give you an excuse. You paid for them and they are your property. Also, seeking multiple opinions is perfectly acceptable especially with scoliosis surgery complications.

Hang in there

Ed

[titaniumed]

Carol

On disability, I had my hospital give me all the paperwork for disability should I elect to go that route. In other words, they would vouch for me, so no attorney would be needed. Full fusion scoliosis patients should be a slam dunk in this regard, no expenses should be paid to a lawyer. If so, I don't know how they would live with themselves, these kinds of actions I consider completely unacceptable. (But this kind of stuff happens)

Talk to the admin people at your hospital. They will help you out.

Ed

[titaniumed]

I asked my first spine surgeon about fusion. She said that frequently doctors think that they see fusion in their patients and less likely to see fusion when judging radiological films of other doctor's patients. The take home message there was that the judgement can be subjective. Having said that, if a halo appears at the site that should fuse, it generally means that there is not fusion at that site. I can see how that makes sense since a solid fusion would be opaque.
Susan

Susan, Its always good to see your posts.....I hope things are well....

Ed

[LindaRacine]

Carol

Full fusion scoliosis patients should be a slam dunk in this regard, no expenses should be paid to a lawyer.

I'm assuming you mean temporary disability to cover one during and after surgery. Long term disability is next to impossible without an attorney.

--Linda

[titaniumed]

I'm not quite sure, probably temporary....Long term you need a lawyer "if" you get denied. I also see they have the fees clipped at 6K so, not too bad. I wonder why they set the max fee at 6K, must have had to do with a history of over billing at some point.

I just cant see a full fusion scoliosis patient with complications, (over age 50) getting denied.

People just don't understand the hardships we have to go through.

Ed

[LindaRacine]

I'm not quite sure, probably temporary....Long term you need a lawyer "if" you get denied. I also see they have the fees clipped at 6K so, not too bad. I wonder why they set the max fee at 6K, must have had to do with a history of over billing at some point.

I just cant see a full fusion scoliosis patient with complications, (over age 50) getting denied.

People just don't understand the hardships we have to go through.

Ed

If you're talking about getting denied for long-term disability, why would any health insurance companies ever cover surgery for adults, if they knew patients were all going to end up on disability? Most adults (18-65) who have scoliosis surgery end up going back to work eventually. I've even known quite a few people who had blue collar jobs (e.g., carpenters, athletes, etc.) who have had long fusions, and who eventually went back to their same careers. If they can do it, we have to assume that not everyone with scoliosis is actually disabled.

--Linda