Thank you Dr. Duetchman & Lamantia

[sjw56]

May 2008

Just a little over 2 years ago I had to take my daughters measurements. We had our suspicions and knew something just wasn’t right so we took her to the doctor. We were informed that she had scoliosis and to go and see a specialist. How could this happen? We get her physicals every year, but we didn’t get one the year before. The year we didn’t take her she was suppose to be checked by the school. Somehow she must have slipped through the cracks. We immediately got on the internet to find out as much as we could about it. Most the stuff we read said that she would either have to be in a hard brace if her growth platelets weren’t closed or surgery. After having some x-rays done they said her platelets were closed with a 44 degree curvature. She had finished growing. We set up two separate doctor appointments with specialist (I call them conventional doctors) and they both said nothing would help but surgery. We wouldn’t accept that. We weren’t willing to do surgery on our 14 year old daughter. There had to be other options. Surgery was the absolute last resort. We found Dr.Deutchman & Dr. Lamantia with their flexible brace on the web. I called them and we set up an appointment. All the way across the United States we flew. We got the brace and started the therapy that they gave us. She felt very self-conscious wearing the brace. Like everyone knew but they didn’t. No one could tell. She was the only one that knew she had it on. My daughter was very faithful about wearing her brace 20 hours a day and doing her exercises. It all paid off in the long run! She is now being weaned out of her brace wearing it every other day. She was so excited that she almost cried. Now she can be a regular teenager. Hopefully in three months, she will be out of her brace completely. The conventional doctors said “there’s nothing that can be done but surgery”. Well, we proved them WRONG! Since she started she went from a 44 degree to a 36 degree. That puts her out of the surgery range. They won’t even consider it anymore. Thank you Dr. Duetchman & Dr. Lamantia! We are so grateful and thankful that we found you. I would highly recommend this alternative treatment to anyone for their child or themselves. It could make all the difference in the world to the life of someone you love or your own life.
Sincerely,
Sally Wright
Long beach, WA
USA

July 2008

Three months ago we had such wonderful news about Josie's back. It was stable and not getting worse so the brace was to be worn every other day and the same with exercises. Well, as teenagers go she thought that she was out of the woods. Ya know at that age THEY KNOW everything. I don't know if it from not doing her exercises like she should or her getting a job. Maybe it's a little of both. OR maybe it's just that 3 degree factor of dstanding the wrong way or something. Now she is back to doing exercises everyday and more of them. She was told that the moree she is weaned out of the brace the more exercises she wiolhave to do.Make sure that if your childs is stable and it looks like things are sailing along that they do their exercises! I can't impress on you enough on how important that they are for them to keep doing. Maybe it didn't make a difference but I feel it did. She really sluffed off on them. Stress to your child that it is their life but also it could be the difference between just exercises or surgery.

[S4Sarah]

I am considering it for myself, about how much did it cost and do you have to travel far? Oh and how should I explain it to my parents? I am a bit nervous to ask and they never heard of Spinecor.
Any advice would be great!

[concerned dad]

Sarah, I saw a bunch of your posts.
Regarding the Spinecor and insurance it is procedure code L1005 and is considered durable medical equipment. Some insurers cover it, some don’t.

My 14 year old daughter wore it for 2 months, she didn’t like it at all and it didn’t seem to help her curve.

You indicated in one of your posts that your doctor said you were done growing and he advised against bracing. You also said you were experiencing pain that you attribute to your scoliosis.

Many parents of young children here with the SpineCor are having great success with impressive inbrace corrections and no/little issues of discomfort wearing the brace. We are all hoping their corrections remain stable when they enter their growth spurt (when curves tend to progress fastest).

Some adults are using it for pain relief, one new forum member in particular is active on the forum and has realized significant pain relief with the SpineCor. We look forward to her weekly status updates.

Your doctor is right, once you’ve stopped growing there is apparently very little a brace can do help your curve. I assume your interest in the SpineCor lies in the pain management aspect. Speaking from my limited experience, my daughter would have to be in a great deal of pain to put the brace back on, but that’s just her. If you decide to try it, I suggest you wear it for a bit before committing to purchase if at all possible.

You ask, how do you tell your parents about it, well, you might ask them to participate in this forum. Many folks here would be happy to answer their questions and point them in the direction to get accurate info.

[Pooka1]

Your doctor is right, once you’ve stopped growing there is apparently very little a brace can do help your curve. I assume your interest in the SpineCor lies in the pain management aspect.

Our surgeon insists scoliosis does not cause pain. We know that can be true because people with large curves can have no pain.

As I understand it, it is very unusual for a kid to have pain. My kid had some pain associated with her RAPIDLY moving curve that went away some weeks after her surgery. That pain was not in her spine but in her back muscles, tendons and(or) ligaments which were being stretched too fast. So again, the pain wasn't originating in her curve.

That means it might be the case that something else going on in Sarah's back besides the scoliosis that is causing the pain. That isn't to say the scoliosis didn't trigger this other thing but it is to say this other thing is responsible for the pain and not the fact of the curve.

[MissEmmyF]

typically, pain from scoliosis arises because muscles along one side of your spine are getting over-stretched (convex), whereas the muscles along the other side of your spine are getting over-strengthened (concave). obviously you are not feeling pain in the actual spine itself, but instead, in the surrounding muscles supporting the spine.

[Pooka1]

typically, pain from scoliosis arises because muscles along one side of your spine are getting over-stretched (convex), whereas the muscles along the other side of your spine are getting over-strengthened (concave). obviously you are not feeling pain in the actual spine itself, but instead, in the surrounding muscles supporting the spine.

Yes I think that is true but I think having scoliosis make trigger other damage in the spine over time. So there might be pain coming from the spine though not likely in young patients.

The reason I say that is I asked our surgeon why the huge difference in the recovery between kids and adults and he said it's because adults almost always have more than just a curve to correct.

That said, most adults have damage to their spine over time, not just ones with scoliosis. For example, I have a natural fusion in my lumbar most likely from a sports injury. I'm just saying that scoliosis plus other issues is the reason adults have such longer recoveries on average per our surgeon.

[S4Sarah]

Yeah the spine itself does not hurt, just what the spine is affecting hurts. Like the muscles and nerves and in serious cases the heart, lungs, and stomach.
Right in the center where my curves meet is where a lot of my pain is, although I do ahve it in other parts of my back also. I can feel on one side of my curve there is a hump and on the other it is flat. I do not have very strong core muscles either so I am supposed to be doing core exercises and PT exercises.

Thanks for your imput everyone!
I'm not sure if my parents will join though. They aren't too fond of this kind of stuff out on the internet, but I could try asking maybe???
I am thinking of showing them a linka dn video or maybe emailing them the links? Any advice/tips would be great.

Oh and trying it on before I buy it, that is a fantastic idea! I really want to know what it feels like. I don't want to get it if it makes my curves worse but I think it is worth trying. I heard of people older than me who went to 0 degrees or just went down lower. The nice thing about the Spinecor is it works even when you're done growing. Why didn't your daugther like it Concerned Dad?

[LindaRacine]

Hi Sarah...

If you are skeletally mature, the Spinecor brace can only offer potential pain relief. While you might get temporary curve reduction, there is no proof that it would be permanent. If you do get pain relief, are you prepared to wear the brace the rest of your life?

Working with a good physical therapist can help you find a small set of exercises that can easily be performed every day on your own, which can also bring good pain relief, and which could be considerably less expensive than a brace.

Alternatively, you might want to check out http://www.yogaforscoliosis.com.

Good luck.

Regards,
Linda

[Sherie]

Our surgeon insists scoliosis does not cause pain. We know that can be true because people with large curves can have no pain.

As I understand it, it is very unusual for a kid to have pain. My kid had some pain associated with her RAPIDLY moving curve that went away some weeks after her surgery. That pain was not in her spine but in her back muscles, tendons and(or) ligaments which were being stretched too fast. So again, the pain wasn't originating in her curve.

That means there is very likely something else going on in Sarah's back besides the scoliosis that is causing the pain. That isn't to say the scoliosis didn't trigger this other thing but it is to say this other thing is responsible for the pain and not the fact of the curve.

She should find out what this other thing is.

Sharon,

Why are you assuming this girl has something else wrong with her besides scoliosis? Most people on here are probably not going to differentiate between pain in their muscles, ligaments, etc. from actual pain in their spine, they just say their back hurts. My daughter had a lot of pain in her lower lumbar if she was on her feet for more than an hour; so to say that kids don't have pain is very misleading.

[Pooka1]

Sharon,

Why are you assuming this girl has something else wrong with her besides scoliosis? Most people on here are probably not going to differentiate between pain in their muscles, ligaments, etc. from actual pain in their spine, they just say their back hurts. My daughter had a lot of pain in her lower lumbar if she was on her feet for more than an hour; so to say that kids don't have pain is very misleading.

I agree I was unclear and wrong to say there is something else. And I probably underestimated the amount of muscle/ligament/tendon pain kids have because my kid's pain only kicked in at the height of her curve and likely only because the curve was moving like a freight train. I don't think that situation is extremely common by I could be wrong.

Do you think most kids have pain with scoliosis if it is corrected in time or isn't moving very fast?

I do disagree that it isn't important to differentiate the pain origin.

I'm trying to distinguish between on the one hand:

- the pain from muscles/tendons/ligaments that resolve completely when the curve is corrected,

and

- the pain from issues that originate in the spine that may be caused or accelerated by having a curve over several years like DDD, spondylolisis, spondylolistesis and whatever else adults often have as opposed to kids who usually just have the curve.

It is my understanding that kids usually only have the curve and not these other things and that adults often have these other things which cause pain and need to be resolved surgically.

[Sherie]

I do disagree that it isn't important to differentiate the pain origin.

I never said it wasn't important to differentiate, I said most people probably don't. I've seen people on here describe their pain and it's obviously not always the same type of pain. Unless the pain comes on suddenly and there's a definite diagnosis, I think it would be a multi-factorial issue if there are other conditions on top of the scoliosis.

In the case of my daughter, I believe she started experiencing pain after the lumbar increased to >50, she also had moderate to severe rotation which could be another causal factor. I didn't do any research at all concerning the pain because it was pretty obvious to me that it was a muscular issue. Nearly all of her pain in the lumbar region has been resolved with surgery but she still has lingering pain in her thoracic area. She uses a shoulder bag for her books and I suggested she use a regular backpack next year to distribute the load more evenly to see if that helps. What does your daughter use and does she still have any discomfort after surgery?

[Pooka1]

In the case of my daughter, I believe she started experiencing pain after the lumbar increased to >50, she also had moderate to severe rotation which could be another causal factor. I didn't do any research at all concerning the pain because it was pretty obvious to me that it was a muscular issue. Nearly all of her pain in the lumbar region has been resolved with surgery but she still has lingering pain in her thoracic area. She uses a shoulder bag for her books and I suggested she use a regular backpack next year to distribute the load more evenly to see if that helps. What does your daughter use and does she still have any discomfort after surgery?

My daughter has a backpack that she sometimes only uses one strap with. I think she should use both straps but what can I do? I just assume if it hurt she would use two straps.

She had pain near her right shoulder blade for several weeks after surgery... it was definitely there at the 6 week check up. But it went away after that and hasn't returned. She doesn't complain of pain now but if it wasn't severe she probably wouldn't mention it.

I have asked from time to time if her back hurts but she says it doesn't. I'll ask her again soon since it's been a while.

[concerned dad]

Why didn't your daugther like it Concerned Dad?

She said it was very uncomfortable (although she never wore any other brace to compare it to). She goes to a private school and has to wear a uniform. She didnt have too many options available in terms of covering her brace. She didnt like the clothes she needed to wear with it.

She did not obtain a good inbrace correction. Her curve went from 38 out of brace to about 36 inbrace. Had she obtained an indication of the possibility of better results she probably would have "bit the fashion bullet" and continued to wear it.

[txmarinemom]

Sharon,

Why are you assuming this girl has something else wrong with her besides scoliosis? Most people on here are probably not going to differentiate between pain in their muscles, ligaments, etc. from actual pain in their spine, they just say their back hurts. My daughter had a lot of pain in her lower lumbar if she was on her feet for more than an hour; so to say that kids don't have pain is very misleading.

I have to agree with Sherie, here ... and my surgeon does too. More and more SRS surgeons agree scoliosis can cause pain. Campion is not SRS, correct? That is in no way intended as a jab at him ... I'm glad he provided what Savanah needed.

My severe back pain started at age 10: It literally felt like someone was pulling my shoulder blades in opposite directions. The pain grew progressively worse until I was fused, although my curve did NOT progress from the Cobb at skeletal maturity, at age 39.

Yes, people with large curves can have no pain ... but they're the rarity more than the norm.