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burdle
03-25-2014, 10:50 AM
Hi,

I am having a Posterior Lumbar Interbody Fusion on L4/5. I have scoliosis- 3 curves all structural, cervical, thoracic 55+ (My big one) and lumbar 35. I rejected suggested surgery 25 years ago and I don't regret my decision but I struggle to get answers to my questions now . My consultant says that although the curve has started progressing after almost 25 years, he says it will only progress slowly and for the moment the loss of function and the magnitude of the surgery would be too great to have a full fusion. It seems that it is his decision as to when the trade-off is right, rather than mine. I am already past surgical levels for size of curve but my head sits nicely on top of my pelvis. It's just the crap going on in between- pain and inability to move comfortably. I have a desk job and for the last 5 years have been struggling with pain and depression from dealing with it.


He has proposed the PLIF to help with the pain.

My understanding is that anyone with disk degeneration could have this procedure - it just so happens that my degeneration is likely from my scoliosis. I am very confused though and am concerned that the procedure may limit my options later. I am 56 now. My consultant in UK is clearly very very highly recommended and says that he could do the full fusion if needed when I am 80 or more. Clearly this is not true, by then I expect all other aging factors will have to be considered and no hospital would touch me. I have trouble communicating with him. Sometimes I think he thinks my case is not severe but then he gives the reasons for not having a full correction as being because the length of the curve is too severe.


Has anyone else had a PLIF and did you have any complications afterwards with the curves progressing?

rohrer01
03-25-2014, 11:21 AM
Burdle, welcome to the forum!

I don't know why, in your situation they won't do the full fusion if you want it done. I have "heard" that if you mess with the lumbar, that the curve can destabilize and start to collapse. I was offered a fusion or disc replacement at L5/S1 by two different doctors. I declined for fear that my already progressing curve would destabilize and progress faster. I take steroid shots in the L5/S1 and the left SI joint for pain. Plus I take a boat load of painkillers and muscle relaxants for other issues related to muscle disease and the painful scoliosis. I have a friend that had a two level fusion in the lumbar. She didn't get much pain relief, not saying you won't. But she has a milder scoliosis above the fusion. I don't know what degree, I didn't ask her. She has the same scoliosis surgeon that I do. So he must have felt that the smaller fusion would be okay.

Can you get a second opinion? I really don't know what to advise. You either trust this doctor's opinion or get another one if your gut feeling is that you want the full fusion now because of progression and age. If you have the smaller one and it destabilizes the spine, you are looking at two surgeries instead of one. Granted, if you can get by for LIFE without having the whole spine fused, the two level is a much less traumatic procedure. If I have surgery, I'm looking at a 14 to 15 level fusion with possible extensions due to arthritis of the neck and lumbar. For THAT reason, I'm not taking a chance with the lumbar fusion until it gets really bad.

I wish you the best. The doctor should ALWAYS take into consideration what YOU want. It's YOUR body, not his. Get a second opinion is the only advice I can give.

LindaRacine
03-25-2014, 11:54 AM
Hi,

I am having a Posterior Lumbar Interbody Fusion on L4/5. I have scoliosis- 3 curves all structural, cervical, thoracic 55+ (My big one) and lumbar 35. I rejected suggested surgery 25 years ago and I don't regret my decision but I struggle to get answers to my questions now . My consultant says that although the curve has started progressing after almost 25 years, he says it will only progress slowly and for the moment the loss of function and the magnitude of the surgery would be too great to have a full fusion. It seems that it is his decision as to when the trade-off is right, rather than mine. I am already past surgical levels for size of curve but my head sits nicely on top of my pelvis. It's just the crap going on in between- pain and inability to move comfortably. I have a desk job and for the last 5 years have been struggling with pain and depression from dealing with it.


He has proposed the PLIF to help with the pain.

My understanding is that anyone with disk degeneration could have this procedure - it just so happens that my degeneration is likely from my scoliosis. I am very confused though and am concerned that the procedure may limit my options later. I am 56 now. My consultant in UK is clearly very very highly recommended and says that he could do the full fusion if needed when I am 80 or more. Clearly this is not true, by then I expect all other aging factors will have to be considered and no hospital would touch me. I have trouble communicating with him. Sometimes I think he thinks my case is not severe but then he gives the reasons for not having a full correction as being because the length of the curve is too severe.


Has anyone else had a PLIF and did you have any complications afterwards with the curves progressing?

Hi Burdie...

Having a PLIF should not have any effect if you decide to go ahead with a full fusion later on. What your surgeon is suggesting is meant to address only some or all of your pain. It's not something that is very common, but occasionally patients can get away with it. One of the surgeons with whom I work has a very small group of patients on whom he's done stand alone XLIFs (a similar procedure). When it works, it's pretty miraculous.

If it doesn't work, you could end up with more pain or additional progression. However, that can happen even if your entire curve were to be fused.

Do you know what level the surgeon intends to fuse? I'm also a little confused about why your surgeon doesn't think a full fusion is advisable now, but might be possible when you're older. (Surgeons with whom I work do large fusions on 70-90 year olds fairly commonly, so they're definitely possible.) BTW, I don't want to sound like I'm pro full surgery here. If you can get away with a smaller surgery, I think that's almost always preferable.

Rohrer, I think you're referring to standalone decompression, which I've never heard of working in any patient with curves ~30 degrees and higher. What Burdie is talking about is a fusion.

--Linda

rohrer01
03-25-2014, 11:59 AM
Rohrer, I think you're referring to standalone decompression, which I've never heard of working in any patient with curves ~30 degrees and higher. What Burdie is talking about is a fusion.

--Linda

Ahh, gotcha. That makes ME feel better, too. Since it may come down to that for me. But mine is L5/S1 plus the SI joints being painful. I don't think it would help me all that much.

I think Burdle said L4/L5.

burdle
03-26-2014, 02:40 AM
Hi Burdie...

Having a PLIF should not have any effect if you decide to go ahead with a full fusion later on. What your surgeon is suggesting is meant to address only some or all of your pain. It's not something that is very common, but occasionally patients can get away with it. One of the surgeons with whom I work has a very small group of patients on whom he's done stand alone XLIFs (a similar procedure). When it works, it's pretty miraculous.

If it doesn't work, you could end up with more pain or additional progression. However, that can happen even if your entire curve were to be fused.

Do you know what level the surgeon intends to fuse? I'm also a little confused about why your surgeon doesn't think a full fusion is advisable now, but might be possible when you're older. (Surgeons with whom I work do large fusions on 70-90 year olds fairly commonly, so they're definitely possible.) BTW, I don't want to sound like I'm pro full surgery here. If you can get away with a smaller surgery, I think that's almost always preferable.

Rohrer, I think you're referring to standalone decompression, which I've never heard of working in any patient with curves ~30 degrees and higher. What Burdie is talking about is a fusion.

--Linda

Hi,

Thanks for reply,


I think my surgeon is saying that the full fusion should not be done for pain relief only as it will not necessarily solve the pain issue. My curves are balanced although the last xray showed progression from the one before. When they are not balance I think he would suggest the surgery but it is the journey that frightens me.

I was referred back to my scoliosis consult by a neurosurgeon who I consulted for bladder issues. I am 56 and have not yet fully started the menopause! but the bladder issues are not muscle related if you see what I mean. The neurosurgeon took one look at my scoliosis and said I should go back. The scoliosis consult did a mri and a SPECT scan and said he couldn't see specific nerve compression that would cause bladder problems- although it showed up a lot of canal narrowing etc. and a lot if disk problems. But it is almost as though because I was back there he thought he would have to offer something so he suggested the PLIF. he sort of dismissed the bladder and we just focused on the scoliosis. My own personal theory is that because the MRi is taken lying down some nerve compression does not show but hey- what do I know- I just know I often can't tell when I need a wee and guess what happens!!!


My other concern is the only real monitoring I can do is on the pain side. In order to not 'obsess' I try not to focus on my body shape- but it is my shape that is going to be the indicator of curve progression and not necessarily pain. I don't want to leave it too long and pitch up to be told that it has gone another 10 degrees.

My nagging worry is that progression will continue especially as I am menopausal at a significant rate now and I will have no control over what happens. I am in UK and my GP just leaves the scoliosis bit to me as the practice is very uninformed about scoliosis. Because I have private insurance you cannot just 'pop' back to a consultant you have to have more symptoms etc. The insurance does not cover the maintenance of a chronic condition. So I am quite frightened of how to manage the whole think now. If I have the PLIF I will at least get to see the consult again so he can take a look at what is going on.

LindaRacine
03-26-2014, 11:41 AM
Hi,

Thanks for reply,


I think my surgeon is saying that the full fusion should not be done for pain relief only as it will not necessarily solve the pain issue. My curves are balanced although the last xray showed progression from the one before. When they are not balance I think he would suggest the surgery but it is the journey that frightens me.
Back pain is definitely not a great reason to have scoliosis surgery. Our patients are always told that the surgery may not make their pain better, and they could actually have more pain. Nonetheless, I cannot tell you how often I hear from people who are super disappointed because they still


I was referred back to my scoliosis consult by a neurosurgeon who I consulted for bladder issues. I am 56 and have not yet fully started the menopause! but the bladder issues are not muscle related if you see what I mean. The neurosurgeon took one look at my scoliosis and said I should go back. The scoliosis consult did a mri and a SPECT scan and said he couldn't see specific nerve compression that would cause bladder problems- although it showed up a lot of canal narrowing etc. and a lot if disk problems. But it is almost as though because I was back there he thought he would have to offer something so he suggested the PLIF. he sort of dismissed the bladder and we just focused on the scoliosis. My own personal theory is that because the MRi is taken lying down some nerve compression does not show but hey- what do I know- I just know I often can't tell when I need a wee and guess what happens!!!
There are lots of potential reasons for your bladder issues. Nerve compression is typically from bone overgrowth, which would NOT change when you lie down. Do you also have anal symptoms at the same time as you have bladder symptoms? The nerve roots that cause bladder symptoms serve the anal area as well.



My other concern is the only real monitoring I can do is on the pain side. In order to not 'obsess' I try not to focus on my body shape- but it is my shape that is going to be the indicator of curve progression and not necessarily pain. I don't want to leave it too long and pitch up to be told that it has gone another 10 degrees.
Changing body shape doesn't always mean that there is an increase in curvature. As we age, soft tissue changes can make it look like we've had a lot of progression, when in fact, there might be none. I've seen this many times.


My nagging worry is that progression will continue especially as I am menopausal at a significant rate now and I will have no control over what happens. I am in UK and my GP just leaves the scoliosis bit to me as the practice is very uninformed about scoliosis. Because I have private insurance you cannot just 'pop' back to a consultant you have to have more symptoms etc. The insurance does not cover the maintenance of a chronic condition. So I am quite frightened of how to manage the whole think now. If I have the PLIF I will at least get to see the consult again so he can take a look at what is going on.
We typically tell scoliosis patients who haven't had surgery to have films taken every 5 years unless their symptoms progress significantly. The symptoms that should be most worrisome are leg pain, weakness, or significant other neurologic symptoms.

I know most of that doesn't help if you're really obsessed about the problem, but try not to worry. Even if you have progression, it would never be an emergency situation. In the meantime, the small fusion might make life a lot easier.

--Linda

burdle
03-27-2014, 06:48 AM
There are lots of potential reasons for your bladder issues. Nerve compression is typically from bone overgrowth, which would NOT change when you lie down. Do you also have anal symptoms at the same time as you have bladder symptoms? The nerve roots that cause bladder symptoms serve the anal area as well.

The usual reasons and causes have been investigated. Certainly if I have any anal symptoms they are not as dramatic. With the bladder it is loss of sensation and urge. I am not sure I agree about the lying down - the effect of any bony overgrowth would be exacerbated if I was standing up. When you are lying down it could be visually difficult to tell. My MRI showed up masses of stuff that I can't interpret. The scoliosis consult seemed to forget that I had returned with bladder issues- probably because I was in tears and the whole consult took less than 10 minutes.




We typically tell scoliosis patients who haven't had surgery to have films taken every 5 years unless their symptoms progress significantly. The symptoms that should be most worrisome are leg pain, weakness, or significant other neurologic symptoms.

In UK when you have an XRAY they are kept by the hospital - this inevitably means that they are measured ( if you are lucky) by a different person each time and a report sent to your GP which again typically will say ' she's got scoliosis'. The GP is not equipped to decide if there is a significant progression because he won't get the detail - The patient would be but again only with the right detail. ( Scoliosis is oh such a lovely world to live in!!). Worsening symptoms are one thing but instability of curve is as great a concern.



I know most of that doesn't help if you're really obsessed about the problem, but try not to worry. Even if you have progression, it would never be an emergency situation. In the meantime, the small fusion might make life a lot easier.
--

As I said - I try not to obsess- Not being an emergency situation - is hardly the point- finding out you have massively progressed and a full fusion now being necessary ( but could have been done earlier, bearing in mind I am 56 ) is!