Milwaukee brace

[mom678]

We just went to dr for 4 months follow up appointment and found out that my daughter will need a Milwaukee brace. Her upper curve has gone from 21 to 31 in four months and the lower curve is now 17. From what I understand, Milwaukee brace is pretty bad. My daughter is twelve and a half and is very concerned about how she will look in the brace. Any ideas on how to prepare her? What kind of clothes should I get her? What kind of experience have you had with Milwaukee brace?

We have only one scoliosis specialist where we live, so I'm thinking of taking my daughter to Shriners in Chicago to get a second opinion. How hard is it to get an appointment there? Our next appointment here is in the beginning of February. I want to try and get into Shriners before that.

[Geish]

Is the Milwaukee Brace her only option? I wore a Milwaukee Brace for about 2 years back in the late 70's. I still hate that brace and its been 30 years since I've seen it. Kids didn't say too much about the brace to me, but I always felt like everyone was looking. I wore jeans just like everyone else and had to have a light t-shirt under the brace to minimize the chafing. I wore what ever I wanted to wear, no different from everyone else. I developed a huge bruise/callus under my chin from the neck portion of the brace and I had matching bruises/callus over my hip bones from the girdle portion. It was fitted just before puberty hit and as my body developed the brace didn't evolve with me.I was eventually fitted with a different brace that was a hard plastic shell and I threw the Milwaukee brace in the trash!
I had a few minor scoliosis "episodes" in my 20's and never really thought about my back much until 3 years ago when I noticed I was leaning to the left. In three years time my curve moved rapidly with the middle curve progressing to over 60 degrees. I just had surgery 3 weeks ago and have no top or bottom curve left and the middle curve was reduced to less than 20 degrees.
Ask your Dr if the Milwaukee Brace is the only brace that will work for your daughter. I was told a few years ago by an Ortho Dr that in retrospect they found that the Milwaukee Brace didn't work. I don't know how accurate that statement was, but this was the Dr that took care of me after I herniated two discs in 1999. I am not sure if I have helped or not, but feel free to PM me if you have any questions that I might be able to answer for you.
Alicia

[csc]

Memories of brace

I, too, wore the Milwaukee brace in the 70's. Years later, I would have dreams of still wearing it. I remember wearing clothes that were too big, in order to cover it. Very self-conscious about it. I am glad my parents did not decide on the surgery though - so many advances since then. I would definitely get a second opinion. The Shriners are supposed to be wonderful with helping.

[flowerpower]

Hi,

I was about the same age as your daughter when I started wearing a Milwaukee brace (in 70's). It was very difficult, but I did it. It is the more high-profile of the braces because it comes up so high around the neck. I don't know if they've been modified over the years. Mine went down to my hips also, as far as clothing, I used to hear a lot of shirts/sweaters with a high neck. Pants and shirts may need to be a size larger.

One of the hardest things for me was that no one talked to me about it or prepared me in any way once I started wearing it. When I wore it to school the first day, it was very traumatic because no one, not even my friends knew I would be wearing it. I would talk to her school counselor & teachers before she wears it to school and see what suggestions the counselor might have to make things a bit easier for her. She may need extra time to get in and out of brace when she changes for p.e. (I took mine off to participate in p.e.). She (or you) could talk to her friends about it; why she needs it/how it is helping her, in a way it works the same as braces for teeth. Let them know what it will look like, maybe her really good friends will help her choose some new clothes. Stares from strangers and rude comments from jerky people can't be avoided, talk about ways to handle those situations with her. There is a scoliosis website specifically for kids www.spinekids.com. It is a great website for kids to talk to other kids about all aspects of dealing with scoliosis.

Where do you live? If you are thinking about applying to Shriners, maybe consider the Shriners in Philadelphia. I was also going to suggest that since your daughter is young and her curve is in the mid-range, there is a surgical procedure called vertebral stapling that the drs. at Shriners Philly have been utilizing , now some drs. at other hospitals are also starting to use this as an alternative to years of hard bracing. There is a thread about it here, but it would be better to check out their support group website, at www.yahoo.com, click on groups, then type in stapling support. Many of the parents who have chosen this procedure over hard bracing have been quite happy. I don't know how long it would take to get an appt. to any of the Shriners, you need to fill out an application first.

Hope this was somewhat helpful.
Renee

[mom678]

Thank you so much for your replies! I would like to see if a different brace will work for my daughter. From what I've read on this forum, kids hate braces, especially Milwaukee. I want to make sure that we explore all options before making my daughter wear one 23 hours a day.

We live 2 hours east of Chicago, so we are going to try to get an appointment at Shriners there.

[Snoopy]

Boy, this is a tough one. My 16 y.o. daughter was prescribed a Milwaukee brace when she was 12. It was horrible! For Jamie, hers was a "modified" Milwaukee brace which meant it was made of hard plastic (similar to a Boston brace) and had a metal bar that came up over each shoulder. The metal bars pressed tightly on her neck which was very uncomfortable for her.

Did she wear it? No. The reason Jamie was given a Milwaukee brace was because it was the best brace for her--she has both Scoliosis and Kyphosis, which is a front to back curve. After a short time, we switched her to a Boston brace with some modifications to address her Kyphosis and she wouldn't wear that either.

I know there are a few kids on Spinekids who have Milwaukee braces and actually wear them. Some kids, like Jamie, just can't wear a brace. I think a lot of it depends on the child, but more importantly the age of the child when they get their brace. Jamie was in Middle School when she was diagnosed and as you probably know, Middle School girls can be vicious.

I'm sorry if my response sounds so negative. I truly think the Milwaukee brace is the hardest to get kids to wear.

Mary Lou

[sccrm08]

I also wore the Milwakee brace in the late 70s and hated it although I did as I was told and wore it. I never told anyone about all the kids that were rude or said rude things, I just wore it. I made myself a promise when I had kids and that was they would never wear a brace for scoliosis...thank god I never had to make that decesion as none of them have it. I wish you the best of luck in your decesion as I can only imagine how hard it would be to make.

[rtremb]

Have you looked into a Spinecor brace for your daughter? This is a much easier brace to wear and therefore more likely to actually be worn. It can be used up to 50 degree curves.

Spinecor websites:
http://www.spinecorporation.com/English/index.htm
and
http://www.scoliosissystems.com/spinecor.html

Ruth

[mom678]

Ruth, I checked out Spinecor website - sounds like the brace is a lot more comfortable than others. Do you know what the long-term results from wearing it are?

My daughter's scoliosis was diagnosed a year and a half ago, but it was pretty mild until we went to see her doctor last week. Now I'm trying to digest as much information as possible, and hopefully make the best possible decision.

The last couple of years have been pretty tough for my daughter - she started having partial seizures when she was 9. It took a while to get the medications to work without making her sleepy all the time. She has been seizure free for 2 years and her neurologist finally took her off the meds last summer. And now we are starting this all over again. I'm so glad that God hold my daughter in his hands and gives all of us strength to keep going.

Jane

[amandap]

Hi Jane,

My daughter who is now 7 wore a milwaukee brace for 6 months prior to getting vertebral stapling done @ Shriners Philly.

The brace is difficult to wear and very cumbersome/uncomfortable. There were plenty of "normal" things she had a very difficult time doing. Putting shoes on/tying them became a chore, sitting for too long, swinging on a swing all very challenging. The brace itself is a hard brace that sits right below the pelvis bone on the front and about a little bit above mid butt cheek on the back side. The front has one long metal bar starting right at the breasbone then splits just below the neck with two metal bars that go over each shoulder and continue down the back side through mid back and then hard plastic again. Because of the hard brace there is limited movement because it is impossible to bend either side to side or even bending over. And eating is not easy as the pressure applied from the brace makes the tummy feel full very quickly.

I don't mean to scare you but I do want to be truthful. The Milwaukee brace is meant for primarily thoracic curves which my daughter has 2 thoracic curves.

It is hard to disguise but much easier during winter months ~ big sweatshirts work great.

I honestly don't know much about spinecore but there are plenty of other parents on this board who will be able to answer more of your questions.

Like I mentioned my daughter had Vertebral Body Stapling @ Shriners in Philly. This is a surgical procedure that braces kiddos from the inside so they are essentially wearing a brace 24/7. There are no guarantees on weather or not the stapling will work as there are no guarantees that a hard brace will work either but for us our options were brace 23/7 or 8+ years with a 99% chance of fusion or VBS with the possibility of correction and no fusion later.

I'd love to share more info if you'd like so please feel free to email me directly at domingo_amandapompa@msn.com or feel free to visit our stapling support group website at http://health.groups.yahoo.com/group/staplingsupport/
There are plenty of other moms/dads who've also had direct experience with the procedure and can answer many questions.

Good luck and hope to hear from you.

Hugs ~ A

[rtremb]

The results of the clinical trial for Spinecor are on the Spinecor websites.

Also Dr. Rivard, inventor of the brace, in Montreal, Quebec, Canada, is very responsive to emails (same or next day) and I would expect will meet with you and your daughter if you wish to discuss the brace.

Ruth

[mariaf]

Hi Jane,

My son never wore a milwaukee, he wore a boston. He, like Amanda's daughter, had vertebral body stapling at Shriners in Philadelphia.

IF you decided to go that route, you might even be able to have the procedure done at the Shriners in Chicago - I'm not sure if they've started to do the procedure there yet, but I believe it's planned for the future.

In addition, sometimes Dr. Betz will travel to assist another doctor in the VBS surgery and teach them the procedure at the same time - he just did that with Dr. Hresko at Boston Childrens!

Of course, most folks do travel to Philadelphia for the surgery (Amanda came all the way from Texas!).

The best person to talk to if interested in this option is Janet Cerrone at 1-800-281-4050 or jcerrone@shrinenet.org.

And, of course, you are more than welcome to join our VBS support group which Amanda mentioned. I have a teenage daughter so I can imagine what you (and she) are going through and my heart goes out to you.

Whatever you decide, best of luck to you!!

[The Slice]

Mom678, I'm not going to advise you but I can give you a little info that I've gleaned over time. For the most part, the earliest treatments of scoliosis were with a cast from neck to pelvis. Next comes the Milwaukee brace which replaced the cast and was a big improvement because it was much lighter. There are many types of braces out there, the majority of them are variations of the Boston brace. Apparently research has shown that for the most part, the full Milwaukee brace was not needed as the upper curve that is in the high thoracic, or cervical area is purely compensetory and will resolve itself as the other curve(s) are corrected. It seems that the Milwaukee brace is reserved now for high thoracic curves, and in some caes, kyphosis.