19 Year Old Male. Scoliosis Progressing.

[LindaRacine]

There is not always an obvious explanation for one's pain. And, if no testing provides an explanation, there's not anything a surgeon can do. What, after all, are they supposed to cut? And, even if a surgeon agreed to do surgery when there's nothing obvious, no insurance company would approve it. When there's no explanation for pain, I personally think the patient needs to be referred to a pain specialist. I've seen patients who have had dozens of tests, examinations by multiple specialists, take boatloads of narcotics, and who still claim to have unrelenting pain. There's not always an answer.

Who knows what it means... something unknown to science, the brain not being able to turn off pain signals, or medical mistakes. Whatever it is, this is one of the main reasons why I try to discourage anyone who is borderline for needing a big surgery, from having that surgery.

--Linda

[JDM555]

I woke up today with severe back pain. Like 9/10 pain, constant. It's hurting very very badly. I have a small headache. My right shoulder, has a very severe throbbing pain, which is being sent my whole entire right arm all the way to my hand. The pain is unbearable, no idea what this came from.

I just took a 600mg Ibuprofen, but I doubt that will do anything. I might have to take oxycodone 5mg, it's hurting that bad.

[mbeckoff]

I woke up today with severe back pain. Like 9/10 pain, constant. It's hurting very very badly. I have a small headache. My right shoulder, has a very severe throbbing pain, which is being sent my whole entire right arm all the way to my hand. The pain is unbearable, no idea what this came from.

I just took a 600mg Ibuprofen, but I doubt that will do anything. I might have to take oxycodone 5mg, it's hurting that bad.

Sorry to hear about your pain. I am much older than you and am in constant pain due to my surgeon messing me up. I am having revision surgery July 18th
Melissa

[JDM555]

I understand what you mean by constant pain, I'm in constant pain too, but what I meant by todays constant pain is that, it isn't fluctuating. Usually my back pain throughout the day goes from 4-9/10, depending on the weather, time, what I'm doing, etc. But the pain today was just 9/10, all the time.

Back pain in general just sucks, it's unbearable and very tough to deal with.

And regarding your revision, I wish you the best of luck and really hope you have a successful recovery and not have any pain down the road.
John

And the 600mg lowered my pain, it's bearable now, but it's definitely not gone. My back still hurts and throbs a bit, but my arm pain is pretty low. Nothing works for my back...

[LAL]

John, look at this link to an article on the Scoliosis Reserach Society websitehttp://www.srs.org/patients/adult/pseudarthrosis/

Every surgeon we have gotten an opinion from said her last level looked a tiny bit questionable on the x-ray as to whether or not it was fused even the last one, although he ruled out pseudarthrosis because he said her rod had not broken yet, but I read a study last night done by some SRS doctors, one was Dr. Bridewell sp? and it showed that broken rods, while they are a sign of pseudarthrosis, sometimes don't happen for 10 years, and sometimes never break. This article says a symptom is pain in the same area as before surgery and increased pain after surgery.

What irritates me are the surgeons that say scoliosis never causes pain...and this was from 2 doctors that are members of SRS. Then you read the article about "same pain as before surgery" that just shows the SRS knows that scoliosis can cause pain. I know it may not in everyone, but how can they say never.

I also read a SRS study last night on pseudarthrois and it said there is about a 17% chance of it happening, in all ages of patients. It also said it is not always seen on MRI's, CT's or X-rays and some patients in the study it was not discovered until the surgeon went in to do a revision. I will look for the link to the study and post it, it is very interesting. Just another thing you might want to ask about.. you never know what may lead you to the answer for the pain.

Also mgs on here had the problem and it was not discovered on x-rays.

[LindaRacine]

I read a study last night done by some SRS doctors, one was Dr. Bridewell sp? and it showed that broken rods, while they are a sign of pseudarthrosis, sometimes don't happen for 10 years, and sometimes never break. This article says a symptom is pain in the same area as before surgery and increased pain after surgery.

LAL... If you can find this one again, I'd love to read it. I tried several searches, but couldn't come up with it.

Thanks.

--Linda

[LAL]

"Symptoms
Your surgeon may have considerable difficulty determining if pseudoarthrosis has occurred. If a pseudoarthrosis has occurred, a recurrence of pain very similar in location to that before surgery will often be noted over a period of months, or the pain may gradually increase shortly after surgery"

This article even says even with the best surgeons and techniques the incidence of this happening are at a minimum of 5 to 15%

This was taken from the article I posted the link to in my above post. I will post the link to the study on pseudoarthrosis when I get home from work. It was done in 2006 and by the SRS.

[LAL]

Linda,

It is a PDF file, I tried to attach but couldn't...go to the website "Medscape" and search for the title of the study ..you may have to register for Medscape if you are not already registered, but its free and great for medical studies.


COPYRIGHT © 2006 BY THE JOURNAL OF BONE AND JOINT SURGERY, INCORPORATED
721
Pseudarthrosis in Adult
Spinal Deformity
Following Multisegmental
Instrumentation and Arthrodesis
BY YONGJUNG J. KIM, MD, KEITH H. BRIDWELL, MD, LAWRENCE G. LENKE, MD,
KYU-JUNG CHO, MD, CHARLES C. EDWARDS II, MD, AND ANTHONY S. RINELLA, MD
Investigation performed at Washington University Medical Center, St. Louis, Missouri

[Pooka1]

Also mgs on here had the problem and it was not discovered on x-rays.

Nobody to my knowledge claims you can see a pseudoarthrosis (or a fusion) on radiograph. I was specifically told this is not possible by our surgeon. Other imaging modalities are required.

[LindaRacine]

Linda,

It is a PDF file, I tried to attach but couldn't...go to the website "Medscape" and search for the title of the study ..you may have to register for Medscape if you are not already registered, but its free and great for medical studies.


COPYRIGHT © 2006 BY THE JOURNAL OF BONE AND JOINT SURGERY, INCORPORATED
721
Pseudarthrosis in Adult
Spinal Deformity
Following Multisegmental
Instrumentation and Arthrodesis
BY YONGJUNG J. KIM, MD, KEITH H. BRIDWELL, MD, LAWRENCE G. LENKE, MD,
KYU-JUNG CHO, MD, CHARLES C. EDWARDS II, MD, AND ANTHONY S. RINELLA, MD
Investigation performed at Washington University Medical Center, St. Louis, Missouri

Hi....

I only see the abstract (which does not mention broken implants), and no mention of a PDF. I'll look up the full text the next time I go into the office.

Thanks.

--Linda

[LAL]

www.jbjs.org/Comments/pdf/JBJA088040721.pdf

Try this, it might work.

It also says that those with fusions T-10 to L-2 had the most non-fusions. Those are exactly the levels my daughter had fused. Every opinion we have had have said her last level is "questionable" without our even asking them. She has MRI's and CT scans, but they usually say that when looking at her x-ray, before they have even looked at the other imaging, so I don't know. They usually look at her x-ray and say "has anyone told you they thought the last level might not have fused?" we tell them yes and then they say it looks questionable. One doctor had her get a big 36" X-ray on a very old machine (we had to go to the basement of the only hospital in the area that still had that type of machine) and after we got that he looked at it and said he thought it was probably fused. I was looking at this article to see how exactly they determine if it fused or not and I see that there is not a black and white way to determine it.

I know it would be a shame for a 21 year old who is in the process of making a lot of important life choices as far as career, school, etc. to listen to a surgeon who told her she would be in pain the rest of her life and then find out years later that something was actually wrong and could have been fixed to alleviate at least maybe a portion of the pain.

[LindaRacine]

www.jbjs.org/Comments/pdf/JBJA088040721.pdf

Try this, it might work.

It also says that those with fusions T-10 to L-2 had the most non-fusions. Those are exactly the levels my daughter had fused. Every opinion we have had have said her last level is "questionable" without our even asking them. She has MRI's and CT scans, but they usually say that when looking at her x-ray, before they have even looked at the other imaging, so I don't know. They usually look at her x-ray and say "has anyone told you they thought the last level might not have fused?" we tell them yes and then they say it looks questionable. One doctor had her get a big 36" X-ray on a very old machine (we had to go to the basement of the only hospital in the area that still had that type of machine) and after we got that he looked at it and said he thought it was probably fused. I was looking at this article to see how exactly they determine if it fused or not and I see that there is not a black and white way to determine it.

I know it would be a shame for a 21 year old who is in the process of making a lot of important life choices as far as career, school, etc. to listen to a surgeon who told her she would be in pain the rest of her life and then find out years later that something was actually wrong and could have been fixed to alleviate at least maybe a portion of the pain.

Thanks. The link worked. I'll try to attach the PDF here for anyone who might be interested.

The article is pretty interesting, but applies only to patients with C-D implants with hooks. John, as well as just about any other adults who had surgery within the last 10-15 years, most likely had surgery with the next generation of implants (which use mostly screws instead of hooks).

I suspect that the 20% of patients whose rods didn't break probably had evidence of potential breakage. It would be interesting to know that, but as far as I know, no surgeons actually do a microscopic analysis of the removed implants.

In regard to your daughter's issue, I've been told that pseudarthroses are OFTEN undiagnosable from xrays and even better imaging such as CTs. My understanding is that tomograms are the most diagnostic, but even that test does not find 100% of non-unions. The one thing that seems to be true of others who have had non-unions is that the pain seems to be localized to the specific area of non-union. So, for example, in John's case (where he describes pain in his entire back, neck, and arm), it seems to me that the problem is unlikely to be non-union.

--Linda

[LindaRacine]

Couldn't attach the file... guessing it's too big. Sorry.

[JDM555]

Thanks for the links LAL. Interesting indeed. I'm having other issues I need to sort out with my general doctor regarding my migraines and coughing I've had for the past few weeks. But hopefully will be able to get a CT scan done and that will at least help Berven get a hint about what to do next.

And Linda, regarding you saying my pain is "my whole back, neck, and arm", that isn't true. I had pain in my arm for pretty much, one day. So no, my arm isn't included in this pain. Second, my neck is usually tight/sore, but not severe pain. And that is also recent. So not included. My pain is lumbar spine. The spine itself hurts when I move/twist and the right side of my back is very tight, so that gives me throbbing type of pain, while the spine, particularly near T12-L3, mid-lower portion of my incision, is the very stiff and sharp/stabbing type of pain. That is where my pain is. And it hurts so bad it spreads to my whole back, left/right side. It's hard to describe exactly where it hurts, it's not just 1 spot, it's a region and it hurts differently at certain times.

And Cheng has always told me it looks good, x-ray looks good, blah blah blah. So I'm tired of everyone said it's good, I shouldn't be in pain, because I am.

[LAL]

That is how my daughter decribes it. Hers is pretty much in her lumbar area...and exactly on the side and area where her surgery is. But her whole back starts to ache too sometimes but it is like it is coming off of the place where her fusion is. Does that make sense? I think she gets so fatigued from the constant stabbing pain in the one area that it starts to resonate to the rest of the back. Or maybe since she is having pain in the one area she holds herself differently or something to try to relieve the pain and then it causes muscular pain in the rest of her back. She says it feels like people with ice picks are inside of her, right in the area of her fusion, stabbing at her insides. We can be walking in the mall or something and she stops suddenly and wants to go home because she says she feels like she is being stabbed again. This has been going on since just a few months (3-4 maybe) after surgery, which was almost 6 years ago.

She too is tired of people saying her X-rays look good as far as the fusion area not looking like it is curving, but we do know that the area directly below her fusion in the lumbar area is getting worse as far as the curve and she is having trunk rotation. Her one hip is sticking out more and more and it was aligned perfectly after surgery. She is starting to look just like she did before surgery. She had anterior and only has 1 rod. I know she was not totally finished growing when she had her surgery, maybe the posterior part of her spine continued to grow and that is why the rotation, one of the surgeons mentioned that could have happened.

The one article on the SRS website says if there is an area of non-fusion a main symptom is pain that begins very shortly after surgery. That is what happened with her...

John,
I know what you are going through, I hope they find something on the CT and/or MRI. Most people are glad when they find nothing, but when you are in pain, you are hoping they can see something so you know what to do. I know Victoria always gets upset when she gets the results back and they just say...good news...it looks good. That is not good news to her as she wants to know what is causing the pain. I am sure you know what I mean. I am thinking of you.

Lori