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txgal
11-04-2016, 05:45 PM
I've been on the forum reading for years but just now posting. I was diagnosed in 1982 at age 17 with a 28 degree curve after experiencing back pain after exercise. The expert suggested a Harrington rod and body cast at that time. We then went to academic centers in two other cities and they recommended watchful waiting. I've had daily back pain for 15 years now and have progressed to 42 degrees. So much for < 30 degrees at maturity not progressing. I've been managing my muscle fatigue with steroid shots and Botox for years but now am needing more relief. Painkillers work but I do not want to take them during the day. I tried radio frequency ablation but that did not help.

I have a hard time sitting or standing for very long now. My scoliosis expert is not enthusiastic about surgically correcting my spine but will do it if I insist. He does not seem confident that I'll feel better. I went ahead and got bending X-rays and an MRI. He will probably be able to stop at L4...starting at T8 or T4... I have kyphosis as well. My people live a long time and quality of life is important to me.

I'm not sure what to do. He is very well respected and I trust him but I am so uncomfortable and getting worse..

Any advice is welcome.

txgal

KathyInIowa
11-05-2016, 07:04 AM
Hi Txgal. Welcome to the forum.

If I did the math right you are just 4 years younger than me. Our story is a little different in that I wasn't diagnosed as a teenager. At age 45 I was diagnosed and had a curvature of 23*. I was also told it would probably not get any worse. But, mother nature has a way of messing things up sometimes!! By age 55 my curvature was 40*. I too couldn't walk, stand or sit for very long without being in high level pain. I had surgery 4.5 months ago and am doing well.

I'm wondering why your scoliosis expert "not enthusiastic" to correct your spine and why he doesn't think you'll get any relief? I know doctors rarely say "I can make you pain free" but there are patients with curves way worse than yours who have very successful surgeries. Did he say why he felt this way? I feel like if a surgeon does a surgery "because the patient insisted" then I might be inclined to get a second opinion. But that's just me.

What part of TX do you live?

I hope you are able to find some answers and are able to get some pain relief.

Kathy

titaniumed
11-05-2016, 11:24 AM
Hi Txgal, welcome

I wanted to comment on the word “uncomfortable”. Boy, do we know the true meaning of this word. Webster’s needs to add “scoliosis patients” for additional reference.

Surgery in adult scoli’s is all about pain, not so much about the curve, degeneration becomes the focus as we age.

Defining pain is also subjective, you know your in trouble when major pain events start taking a foothold. Herniated discs can act as a catalyst in deciding on surgery as these can be quite painful and hard to deal with. Discs do retract, so non-surgical attempts are worth trying. I battled this for years, with success and failure.

I never did shots or botox. Before my surgeries, I used modalities that were mainly medication free, as long as I could handle it. I didn’t want to worry about side effects on something that was proven on any particular day. (I have taken a host of black listed meds through the years) that’s why I say this.....My medication usage has always been “short term”, or at least have that thought in my mind these days.

Surgery should be thought of as a last ditch effort.....Good surgeons have this etched into their minds, and for good reason. Insurance companies dictate that all other non-surgical modalities happen before submitting to surgery. This is a good sign on your surgeons part. Thumbs up on his call. It’s a process many of us have experienced. Timing has to be right. Scoliosis surgery is all about timing.

I have always liked a hot water soak.....Sounds very 1800’s but it works for pain and the aches.....Massages are heaven, and just like a good cigar, an expensive habit. I miss my massages, did a few through the years, (enough to buy a house) but don’t need them anymore.....

Kathy, you are doing GREAT! Congratulations! Slow and easy now.....

Ed

Kay1974
11-18-2016, 12:43 PM
Hi Texasgirl,

Just wanted to say hi from a Louisiana girl:)

I can easily relate to your post as my larger curve is around 42degrees with a good amount of rotation. I am living with chronic low back pain and now leg pain. It's not fun but I'm managing with an arthritis pill, hot baths every night just before I do some Schroth stretching that I've recently learned. I also use a tense unit on my back and will do lots of posture correction deep breathing throughout the day. I basically do a mixture of things to find relief. Laying down on a hard floor feels great to me also compared to sitting and standing.

Finding a team of Dr's that you trust is key. I am new on this site also and just basically read through different post to educate myself better. I lived several years pain free and care free until now of course where I'm just watching and waiting. Surgery is a huge thing and I'm not ready to jump in on that.

Anyway I'm sorry you struggle with this also and I just wanted to say hi.

Melisse in Louisiana

txgal
12-08-2016, 06:16 PM
Thank you for your replies. I saw my surgeon yesterday and he said I would have to be fused T3-Sacrum and does not think it is worth the risk at 48 degree kyphosis and 40 degree scoliosis. So I am going to work in getting into better shape and figure out how to deal with my back pain.

flerc
01-30-2017, 01:34 PM
Thank you for your replies. I saw my surgeon yesterday and he said I would have to be fused T3-Sacrum and does not think it is worth the risk at 48 degree kyphosis and 40 degree scoliosis. So I am going to work in getting into better shape and figure out how to deal with my back pain.

Did your surgeon tell you about Vbt?

txgal
01-30-2017, 01:45 PM
Did your surgeon tell you about Vbt?


No, he didn't. I did not think adults were candidates.

flerc
01-30-2017, 02:30 PM
It's used in adults. Mostly young adults but not only too young.

Pooka1
01-30-2017, 03:18 PM
No, he didn't. I did not think adults were candidates.

It is possible he didn't mention it because you might not a candidate due to your kyphosis or the fact you are trying to address pain versus progression or both in combination. Also, you may not be a candidate because of the length of the affected area. Only one mature (meaning older than young adult) has been tethered as far as I know. I think she just had a thoracic curve but I am not sure.

You might want to join the Facebook group and find out if they know if you might be a candidate or if you are not for one or more reasons.

flerc
01-30-2017, 04:26 PM
It is possible he didn't mention it because you might not a candidate due to your kyphosis or the fact you are trying to address pain versus progression or both in combination. Also, you may not be a candidate because of the length of the affected area. .
.

Where did you see that those things may be a restriction for Vbt?

3sisters
01-30-2017, 05:38 PM
Certainly, I would encourage anyone to investigate VBT before committing to fusion. There are some general guidelines, but they are not always firm or fast. Plus, parameters are changing quickly, thankfully. So, sometimes waiting is a good thing.

Many surgeons who do not perform VBT do not suggest it; however, about 30 worldwide are performing it in countries besides the US to include NZ, Canada, Spain, India, Turkey, and Germany is starting up now.

Most surgeons prefer low Risser patients, especially Risser 0-1. However, many are adding older teens with no growth remaining and two are now accepting 'senior' patients. There have been more than one in their 20s AND even 50s. For the most senior patients, bone density is important. That doesn't mean it is a show-stopper, but it might have to be improved with FORTEO or similar.

Sometimes hyperkyphosis makes VBT contra-indicated, but not always (and 48 is not very 'hyper' so I would ask before writing it off as an option.)

Originally, VBT was a thoracic procedure. Now, it has been extended to cover T5-L4 as necessary. For some extentuating circumstances, it can be used in combination with a selective fusion. This might be when a structural curve starts higher than T5/ T4, or if there are other issues that the surgeon needs to address. Patients maintain most of their mobility, especially in their lumbar area.

Some people might seek VBT for moderate curves that accompany pain; it has shown positive results in that area for many. Ideally a VBT curve is between 35 and 70, but much larger curves have been tethered.

If anyone feels this might be something they want to consider for their child or themselves, feel free to ask to join a facebook VBT forum I co-admin with Maria F. It is called Scoliosis Tethering (VBT) Support. I do not come to the NSF forums often, but wanted to give a bit of an update.

Pooka1
01-30-2017, 06:27 PM
Here is a recent (2015) Q&A on tethering by Dr. Betz...

https://posna.org/Blogs/The-Resident-Review/March-2015/Emerging-Technology-An-Interview-with-Randal-Betz

flerc
01-30-2017, 06:42 PM
Certainly, I would encourage anyone to investigate VBT before committing to fusion. There are some general guidelines, but they are not always firm or fast. Plus, parameters are changing quickly, thankfully. So, sometimes waiting is a good thing.

Many surgeons who do not perform VBT do not suggest it; however, about 30 worldwide are performing it in countries besides the US to include NZ, Canada, Spain, India, Turkey, and Germany is starting up now.

Most surgeons prefer low Risser patients, especially Risser 0-1. However, many are adding older teens with no growth remaining and two are now accepting 'senior' patients. There have been more than one in their 20s AND even 50s. For the most senior patients, bone density is important. That doesn't mean it is a show-stopper, but it might have to be improved with FORTEO or similar.

Sometimes hyperkyphosis makes VBT contra-indicated, but not always (and 48 is not very 'hyper' so I would ask before writing it off as an option.)

Originally, VBT was a thoracic procedure. Now, it has been extended to cover T5-L4 as necessary. For some extentuating circumstances, it can be used in combination with a selective fusion. This might be when a structural curve starts higher than T5/ T4, or if there are other issues that the surgeon needs to address. Patients maintain most of their mobility, especially in their lumbar area.

Some people might seek VBT for moderate curves that accompany pain; it has shown positive results in that area for many. Ideally a VBT curve is between 35 and 70, but much larger curves have been tethered.

If anyone feels this might be something they want to consider for their child or themselves, feel free to ask to join a facebook VBT forum I co-admin with Maria F. It is called Scoliosis Tethering (VBT) Support. I do not come to the NSF forums often, but wanted to give a bit of an update.

Fortunatelly you are here Emily!

Pooka1
01-30-2017, 07:09 PM
Here is a paper on stiffness and range of motion of staples versus tether in pig spine (ugh). Note that the control is a normal spine and that none of the spines had any scoliosis. If they were measuring stiffness and ROM with a control of an uninstrumented scoliotic spine versus instrumented scoliotic spines, that would be much closer to the case with people. I think there would not be as much of a difference between uninstrumented and instrumented scoliotic spines because the ROM of a scoliotic spine is likely much less than a normal spine. I say that because my daughters didn't seem to think they lost much ROM after they were fused. I think it was because they already had low ROM just from the scoliosis.

There may be differences between quadrupeds and bipeds and this is just one study so approach with some skepticism. Note the other limitations of the study the authors mention.

http://www.ors.org/Transactions/57/0827.pdf

flerc
01-30-2017, 09:13 PM
Here is a paper on stiffness and range of motion of staples versus tether in pig spine (ugh). Note that the control is a normal spine and that none of the spines had any scoliosis. If they were measuring stiffness and ROM with a control of an uninstrumented scoliotic spine versus instrumented scoliotic spines, that would be much closer to the case with people. I think there would not be as much of a difference between uninstrumented and instrumented scoliotic spines because the ROM of a scoliotic spine is likely much less than a normal spine. I say that because my daughters didn't seem to think they lost much ROM after they were fused. I think it was because they already had low ROM just from the scoliosis.

There may be differences between quadrupeds and bipeds and this is just one study so approach with some skepticism. Note the other limitations of the study the authors mention.

http://www.ors.org/Transactions/57/0827.pdf

killing animals to obtain that kind of conclusions.. I hope they didn't do suffer them too much.
Sure what we need is to measure the stiffness and Rom in alive scoliotic people before having surgery and some time after having it. I suppose the same should have been done with fusion.

Pooka1
01-31-2017, 06:50 AM
killing animals to obtain that kind of conclusions.. I hope they didn't do suffer them too much.

They suffer immensely on factory farms. As Paul McCartney said, if slaughterhouses had glass walls there would be more vegetarians/vegans. I can only hope they got these spines from those poor animals and not animals killed only for these experiments.

Pooka1
01-31-2017, 07:24 AM
No, he didn't. I did not think adults were candidates.

The bottom line might be that there is only one or maybe one more person by now (her sister) near your age who has been tethered. That's better than none but it is only one or two.

Maybe you can join that Facebook group and find out what THOSE women were told versus what younger patients are told. That is what is most likely going to be relevant to you, not a growing child who is being tethered for progression only which appears to be 99.999% of the patients to date. You can ask:

1. VBT effectiveness for pain versus progression
2. Kyphosis limits on VBT
3. Bone density limits on VBT
4. Curve length limits on VBT

With only one or two patients in your category, it's going to be shooting in the dark in any case. But that doesn't matter because tethering is not permanent and doesn't cut you off from other treatments if it doesn't work. Certainly I would look for a surgeon to tether my daughters lumbars if they ever have trouble below their fusion and would hope to find one to do it.

flerc
01-31-2017, 09:30 AM
They suffer immensely on factory farms. As Paul McCartney said, if slaughterhouses had glass walls there would be more vegetarians/vegans. I can only hope they got these spines from those poor animals and not animals killed only for these experiments.

They should to live and die in farms, not factory farms that should to be forbiden.. involution of mankind don't stops.

flerc
01-31-2017, 09:55 AM
But that doesn't matter because tethering is not permanent and doesn't cut you off from other treatments if it doesn't work. Certainly I would look for a surgeon to tether my daughters lumbars if they ever have trouble below their fusion and would hope to find one to do it.

As I know it may be permanent. It is not irreversible as fusion.
Surely it may be used in your daughter, a friend whose daughter's pedicles where broken few months after fusion and surgeons recommended her to have another surgery but now in the lumbar zone, talked with Vbt surgeons and said her that is possible.

flerc
01-31-2017, 07:17 PM
Surely the best you may do in this sense is to keep her lumbar zone very flexible, I think that in all cases is an important requirement for Vbt. To achieve that goal I think that Gpr is the best.

flerc
01-31-2017, 07:36 PM
The bottom line might be that there is only one or maybe one more person by now (her sister) near your age who has been tethered. That's better than none but it is only one or two.
With only one or two patients in your category, it's going to be shooting in the dark in any case.

Why? What could happens not happening in teens? Even teens close to skeletal madurity and there are many cases as I know. If the spine si flexible which could be the big difference?. If you know that your gun can kill a cat why would you believe it cannot kill a dog?

txgal
02-05-2017, 07:40 PM
The bottom line might be that there is only one or maybe one more person by now (her sister) near your age who has been tethered. That's better than none but it is only one or two.

Maybe you can join that Facebook group and find out what THOSE women were told versus what younger patients are told. That is what is most likely going to be relevant to you, not a growing child who is being tethered for progression only which appears to be 99.999% of the patients to date. You can ask:

1. VBT effectiveness for pain versus progression
2. Kyphosis limits on VBT
3. Bone density limits on VBT
4. Curve length limits on VBT

With only one or two patients in your category, it's going to be shooting in the dark in any case. But that doesn't matter because tethering is not permanent and doesn't cut you off from other treatments if it doesn't work. Certainly I would look for a surgeon to tether my daughters lumbars if they ever have trouble below their fusion and would hope to find one to do it.

Thank you for the info. This is promising and maybe an option at some point.

burdle
02-06-2017, 04:06 AM
Certainly, I would encourage anyone to investigate VBT before committing to fusion. There are some general guidelines, but they are not always firm or fast. Plus, parameters are changing quickly, thankfully. So, sometimes waiting is a good thing.

Many surgeons who do not perform VBT do not suggest it; however, about 30 worldwide are performing it in countries besides the US to include NZ, Canada, Spain, India, Turkey, and Germany is starting up now.

Most surgeons prefer low Risser patients, especially Risser 0-1. However, many are adding older teens with no growth remaining and two are now accepting 'senior' patients. There have been more than one in their 20s AND even 50s. For the most senior patients, bone density is important. That doesn't mean it is a show-stopper, but it might have to be improved with FORTEO or similar.

Sometimes hyperkyphosis makes VBT contra-indicated, but not always (and 48 is not very 'hyper' so I would ask before writing it off as an option.)

Originally, VBT was a thoracic procedure. Now, it has been extended to cover T5-L4 as necessary. For some extentuating circumstances, it can be used in combination with a selective fusion. This might be when a structural curve starts higher than T5/ T4, or if there are other issues that the surgeon needs to address. Patients maintain most of their mobility, especially in their lumbar area.

Some people might seek VBT for moderate curves that accompany pain; it has shown positive results in that area for many. Ideally a VBT curve is between 35 and 70, but much larger curves have been tethered.

If anyone feels this might be something they want to consider for their child or themselves, feel free to ask to join a facebook VBT forum I co-admin with Maria F. It is called Scoliosis Tethering (VBT) Support. I do not come to the NSF forums often, but wanted to give a bit of an update.


Thank you for this information. I am interested in the 'combination' of VBT and fusion. Like txgal I would have to be fused to Sacrum. However mine would have to start at C1. So VBT might be an option for me?

I have curves way over 50 degrees and am a mature adult. Do you have anyone on your Facebook group in the same condition (is or was) as me?