Physical Therapy did not help my daughter's scoliosis....Now time for MRI...
By brokentia
@brokentia (10389)
United States
April 19, 2007 11:21pm CST
For those of my friends that have followed my discussions about my daughter and scoliosis, I thought it easier to post here to let you know how she is doing.
She had physical therapy for 8 weeks, 3 times and week, AND had to do exercises every day that she did not go to PT. At first we doubted that it would help. But then we both talked about it and decided to give it a try. She worked very very hard and never missed a day at home. She often walked out of PT in a lot of pain and very exhausted. But each day, we both said that if this can stop her from needing surgery or a back brace, then she did not care if she had to do it for the next two years.
Bless her heart...she is such a trooper!!!
Well, this week she had her follow up with the Ortho Specialist.
And...it turns out that the PT was not helping at all. The doctor has said he sees no point in her going because it is not helping and it is just causing her more pain.
Now, she is to have a MRI. He is concerned that there may be reason to have to do surgery. Wow! This was a huge blow to both me and my daughter!!!
We had our hopes up that PT would work.
She had her hopes up and went through so much pain saying that as long as it helps, she will continue to do it. She was even excited to go back to the doctor to see if it was helping... asking me to look at her back to see if there was any difference from what I could tell from before!
And now she is being told that she may face surgery anyways. Ouch!
I couldn't help but cry for and with her because I know it was a HUGE let down.
I have already contacted the Shriner Hospital to request help.
They have some of the best doctors and her first appointment is in June.
So, if it is found that she needs surgery, I would prefer that they do it.
Has anyone here been through the Shriner's for scoliosis?
Anyways, I really posted this for a few reasons....
1. To let my friends know the happenings.
2. Talking about it helps.
3. My daughter is on myLot and she reads all the postings about this. So, if you have any words of encouragement...please know she will be reading this.
6 people like this
21 responses
@ElusiveButterfly (45940)
• United States
20 Apr 07
Tia, I wanted to let you know that my thoughts and prayers are with you and your daughter. She is fortunate to not have a severe case of scoliosis. I have seen some films of youngsters backs that would make you cry. The good thing is that your are not ignoring the doctors advise and following through with what he has suggested. Many times people do not follow through and their children's condition worsens. Shriners is a wonderful hospital. Many of the young people that came to the store where I worked had gone through Shriners. They have helped many. Huggers to you and your daughter.
4 people like this
@brokentia (10389)
• United States
21 Apr 07
Thank you sweetie for the encouragement.
That xray is actually not that good. You can't even tell that she has three curves on that xray. But I agree, she is not as bad off as some people. :)
Which, I am grateful we caught it now...rather than later.
2 people like this
@pyewacket (43903)
• United States
20 Apr 07
tia I don't know what to say...it must have been such a let down since the PT didn't help after all the effort and pain your daughter went through...You and your daughter will be in my thoughts and prayers! And yes...talking about things does help...
4 people like this
@brokentia (10389)
• United States
20 Apr 07
Thank you! Your thoughts and prayers are appreciated.
She and I are very alike. We need to talk about things to help.
So, this is my way also to help her talk, read, and know that there are people out there that care and encourage her.
It helped the last time...I am hoping it will help again.
She came home each day wanting to read what people wrote. :)
It just helped.
2 people like this
@kgwat70 (13387)
• United States
20 Apr 07
I am sorry to hear that the physical therapy did not help your daughter with her condition. I am sure both of you are disappointed and hope that there is another way of helping her without having to go through surgery. Hope the new doctors will be able to help her get well. I am going to have an MRI done on my back and neck very soon as I saw a backpain specialist yesterday. I have been seeing a chiropractor since this past summer which has helped a lot but still have aches and pains from time to time, which seems to be getting bad again. Hope that everything works out for your daughter and that they can get her well.
@brokentia (10389)
• United States
21 Apr 07
Hey, my best wishes to you also!
I hope the MRI turns out good for you!
2 people like this
@emeraldisle (13139)
• United States
20 Apr 07
I feel for both of you in this. I know how miserable it can be when you can't fix things for your child. You wish you had a magic wand to make it all go away and it's not possible. I also know what it is like to have spine problems and how hard that is. If I could I'd give you both hugs to try and make you feel better.
I really wish physical therapy had helped. She worked so hard on it and to have it now had to be discouraging. Don't give up. It will get better. I'm sure of that. You are wise to call the Shriners. They are the best especially when it comes to children. If she does have to have surgery you want them to do it. I took a look at that x-ray and all I can say is "ouch". I know how miserable mine is and I don't think it compares. Mine in the lumbar area it is straight instead of curved. I'm just very glad for both of you that it was caught this early. You are following the doctors advice and I am sure you'll get through this.
Let your daughter know I also think she is very brave and that she has a lot of determination. You should be very proud of her. She's going through a lot but she keeps on going. Not many children her age would have. She's had some hard breaks with this but she hasn't given up. That is an amazing thing to behold. She deserves a lot of credit for that.
@brokentia (10389)
• United States
23 Apr 07
She is a definite trooper and I am very proud of her!
Thanks for the encouragement for her! :)
@princeworthy (1909)
• United States
20 Apr 07
Oh hon! I am so sorry that the physical therapy didn't work out for her. She is lucky to have such a great mother to support her! My heart really does go out to her, I seen the pain that my husband went through in PT and that was just for his hand. I can't imagine how painful it was for her, she is also such a brave girl for going through physical therapy when so many others would have given up. I will be praying for her surgery to go well and her recovery to be as fast as possible. xoxo
@brokentia (10389)
• United States
20 Apr 07
Thank you for the nice words. :)
Surgery is not on a definite schedule yet. It is something that the doctor is looking into and we have not agreed to yet.
So, lets hope that after the MRI...maybe there will be a different suggestion.
If not, then the Shriners will be who I want helping her. :)
2 people like this
@wonderverb (152)
• Canada
20 Apr 07
Hello brokentia,
I don't know very much about the medical side of scoliosis, but I do you know whats it like to have to go through what you have to with your daughter.
My cousin has scoliosis, and he was actually one of the first to have surgery on his spine(18 years ago), where they inserted a long metal rod from the base of the spine up.
Sorry lets not get into that. I only wanted to respond to offer my prayers and let you know that people care and share in your fears and emotions for what your daughter is going through.
My cousin is now 35, and is doing very very well now and he hasn't had problems in a few years.
To your darling little lady who might be reading this....Don't you dare ever give up, all your hard work will pay off...I and my children will be praying for you.
3 people like this
@wonderverb (152)
• Canada
20 Apr 07
Sorry, I don't know your daughters age, but if you want to meet my little dream team....you can see them all here ...all 4 of them http://www.icecreamreview.blogspot.com what can I say....they love ice cream...lol
3 people like this
@brokentia (10389)
• United States
20 Apr 07
Oh what cuties!
Thank you for sharing the story, encouragement, and the pics of the little ones.
I have seven children myself and if you go to my profile, you will see pictures of them there.
My daughter is the eldest of the girls. Right behind my first born...whom will be moving out or going to college next year. ha ha
Again, thank you for your wonderful words. :)
2 people like this
@lilyruth (723)
• United States
11 May 07
Brokentia: Listen I had never mentioned it before because I did not want to but you see I have scoliosis also. Tell your daughter that her x-ray looks good compared to mine. My x-ray looks like a snake culed up! thatss how bad mine is and the pain is awful. I walk bentover like my head is almost touching the floor thats how bad it is and the worst thing about it is Iwas just told about it nd shown the x-ray! I had an x-ray two years ago and MRI also and nothing showed up then if anything all this time the doctors kept telling me there was nothing wrong with me that it was muscle spasams and with physical therapy Id be alright and would probably walk straight. I knew in my heart it was much more but I never had even heard of scoliosis. I just cannot understand why it did not show up in the MRI or x-ray till now. I have to go back tothe Doctor and see what he is gong to do and the spine specialist all he did was give me a script for a full back brace which I have not been able to get it has to be approved ny medicaid. So tell your girl to keep her chin up at least her back does not look anthing like mine, her x-ray looks pretty good to me compared to mine. I feel at times like throwing in the towel but I have to think not of myself ut others so I have to make myself keep going no matter how much pain im in. I hope when I go back to the Doctor he will put me on pain management sine there is noting more they can do for me. Its to late for an operation my bones are to bent over and besides I also have a degenrative bone desease. Believe me I wanted a to be able to have surgery so I could walk straight again but I cannot have it. Its not to late for her, tell her not to be afraid if they can still do surgery telher to go for it bfore her bones get worse. I will remember her in my prayers and I hope she and you will think of me kindly and say a few words for me. GOD BLESS YOU BOTH
@brokentia (10389)
• United States
11 May 07
I will definitely say a few words for you! I am sorry you are in so much pain and having so much trouble.
I do understand the snake curve. The xray did not show up very well in the picture and it was a low grade xray. The Ortho doctor took a better xray and she also has 3 curves. Hence the suggestion thus far for surgery to prevent it from getting worse.
Thank you for sharing your story. I will be sure to keep you in my thoughts.
@rsmith512 (1561)
• United States
21 Apr 07
Talking really does help me for the better!
I find it encouraging to know that others care, and want to know. :) Thanks!
I want to talk about a little how I felt too...I won't go into great detail, because I think that it may be very long and no one will want to read it! LOL So let's see if I can keep it short.
Yes..this was a huge blow for me, and my mom. I was hoping so hard, and I was believing that Physical Therapy was going to work. I wanted it to soo bad! Seriously!! I would have gone for the next two years, or even longer if that is all that it took. Sure, Physical Therapy was killing my back and wearing me out...but I would have been willing to commit to that! I was for EIGHT weeks straight! I was committed everyday to it. I could have been like other patients at my Physical Therapy place...Oops, sorry I forgot...Or, I was really busy. Umm...not! I wanted this to help sooooo bad that I made sure that I made time for it...or did if before I went to bed.
Some days my back hurt so bad that I really wanted to cry.
And, one time, I think that I did. It is still a really big blow just to write that the doctor said that it wasn't helping! Ugh...why couldn't you have told me from the beginning that it might not help?? This has really crushed me!!!!! :( And, now I have to wait for another appointment to have an MRI. I thought that this would be over! Seriously! Why couldn't it have helped!!! :(
I am going to make it through this though...and I am going to get my back fixed some how! Maybe then I will be taller than my mom! :D
Thanks everyone for the words of encouragement and sympathy! :)
1 person likes this
@brokentia (10389)
• United States
21 Apr 07
Gee, let's shoot for being taller than your mom! ha ha
I hope this is helping for you to read. I know it was a huge blow.
And I know this helps a lot too.
So, I am here for ya kid. :) Through thick, thin, and even if you get to be taller. ha ha
@brendalee (6082)
• United States
20 Apr 07
I am sorry that things didn't come out the way you hoped for. I don't know what else to say except don't lose hope and I think together you two( and the rest of the family) can get through this. I will keep you in my thoughts and send good vibes your way. I don't know personally about the Shriners Hospital but I have heard good things about them.
2 people like this
@GnosticGoddess (5626)
• United States
21 Apr 07
I was getting ready to send you a message to see how she was doing. Thanks for letting us know.
I'm really sorry that the PT didn't work! That really sucks for all of you!! I was so hoping that it would.
I don't know much about the surgery but I wish you all the best while you're finding out and then having it if she needs it. And they're still is a slight possiblity that she still won't need it. The brace would be better than the surgery - right?
That appointment is so far away it seems like torture almost. If I'm going to hear bad news I'd rather hear it as soon as possible - you know? The suspense drives you nuts.
Good luck to you both and to the rest of your family too. Please let us know how the MRI and the results go :)
1 person likes this
@brokentia (10389)
• United States
21 Apr 07
I will definitely let ya know. :)
and yes, it is torture to have to sit and wait for a call to schedule a MRI and for June to come so she can be seen my the Shriners. *sigh*
A brace would be better...but a brace does not correct it. It just stops it from progressing. So, we will have to wait to see if she needs to be fixed or needs to stop it from progressing.
@lafavorito (2959)
• Philippines
22 Apr 07
Hi there Tia. I'm very sorry that your daughter have to undergo surgery, I know both of you are very scared but if she'll get better after the surgery then you must do it.
I also want to thank you for posting your / your daughter's scoliosis experience because it's helping me to think about my own scoliosis as well. I'm already in my 20's, I've stopped growing so there is very little chance that the curve will progress though I'm still afraid because my back hurts a lot whenever I did too much housework. My spine's curve was discovered by my aunt when I was in highschool and she told my mom but sadly my mom just brushed it off. Good thing my boyfriend who turned out as my husband now, saved some of his money to send me to a doctor and a PT once a month. After I gave birth to our son, my back pain increased probably because our son is becoming heavy now ti's time for me to go back to the doctor.
I do wish the best for you and your daugther, she's very happy to have a mom like you.
1 person likes this
@brokentia (10389)
• United States
23 Apr 07
Thank you so much for the wonderful compliments. :)
Yes, I would encourage you to go back to the doctor and have it checked.
I am not sure how pregnancy can effect a curve, but I know that it must have increased the pain even during pregnancy.
Hope you are able to get into the doctor soon also.
I know I hate seeing my daughter in pain.
Wishing you the best!!!
@crimsonrose (147)
• Bangladesh
20 Apr 07
I feel sorry to hear the unexpected news for your daughter.If there is no way out bt to go for surgery,than prepare mentally both of you for the surgery . Make more discussion with doctors and hope all will be well in the end and a cheerful happy life. All the best..
2 people like this
@AnnaB87 (761)
• United States
21 Apr 07
I hope that your daughter will be able to have her back problems corrected.
I would not give up on the exercise though, if she can keep exercising and form strong core muscles that may be of help for her.
I have scolios and I wore a brace for a while,
I don't think mine is no where as bad as your describing though.
But if she stops execising it may make her pain worse either now or later on in life. And I am saying this from my personal experience.
Trying to get started back exercising is harder than it was doing the exercises in my opinion.
Staying active will be helpful to your daughter because if she gains a lot of weight it causes more pain, trust me I am speaking from experience.
1 person likes this
@brokentia (10389)
• United States
21 Apr 07
My daughter IS very active and always has been.
Even though she is not going to physical therapy, she is still active.
Thank you for the words of advice. :)
1 person likes this
@thor78 (45)
• Philippines
21 Apr 07
One best pieces of advice I can impart is that you get more than 2 opinions from other doctors and other fields of medicine. Surgery should be considered the last option to take because it would restrict your daughter's movement and would be difficult to remove (if you decide to do so anyway). I would suggest you contact the nearest chiropratic doctor in your area. By the way, how old is your daughter? If she is still in her teens, physical therapy is still bery effective coupled with chiropratic medicine. Don't be discouraged ny the ortho doctors, there is a saying that carpenters only see nails as something to be hammered, the same goes for ortho doctors. My consultation with an ortho doctor yield the same results ("you need to undergo surgery..."), but I was never put under the knife and my scoliosis progression stop with the help of chirpractic medicine and PT.
1 person likes this
@beckyomg1 (6756)
• United States
22 Apr 07
She does sound like a real trooper, i wish you so much of the very best and i hope that everything turns out alright. Keep your heads up high.
@sweetdesign (5142)
• United States
20 Apr 07
I feel for you and your daughter. My mom has scoliosis. She did not wear a brace as a teen and she has a double curve of the spine. Her back looks like a really out of whack S. She was going to opt for surgery a few years ago but even though the surgon (one of the top in the country) had no doubts about being able to fuse the the spine in alignment he was worried that with her advanced age (62 at the time) and the severity of the curves that her spinal cord would not snap back into place and she would end up paralized.
As scary as surgery is it is best done at a younger age when the spinal cord is able to snap back. Mom is in pain everyday. She has had double hip repalcements done also due to her back. Her hips are fine now but she still suffers from her back pain.
Our prayers are with you and your daughter.
1 person likes this
@margieanneart (26423)
• United States
24 Apr 07
I am sorry to say, that I have not heard about this until now. I realize that it was a lot of hard painful work in pt, but, God is in control. Keep your eyes on Him, and He will direct your paths. Bless you, love and hugs, M&M
@Justme2007 (1848)
• United States
20 Apr 07
I haven't been on lately but I will pray for you and your daughter and hope everything goes well. Keep your head up god bless.
1 person likes this
@patootie (3592)
•
10 May 07
Well I am blowed .. I was just listening to our news programme here in the UK this morning and they had a discussion on just this very therapy for scoliosis sufferers .. and now I have just opened this dicussion that you started on the 19th April ... how bizarre is that!!
The girl in the dicussion had had to do the exercises for six hours a day, every day, for the eight weeks .. !
On one of our 'real life' hospital programmes they showed a girl who had just had a corrective back op for scoliosis .. she said it had been uncomfortable for a couple of days .. (she had been very twisted) .. but her actual back was fine it was just the muscles that had been distorted for so long finding there place again ... she was up and about in no time .. and other than a few restrictions with full contact sports she was 'as good as new' ...
I do hope you daughters op will be as successful and as pain free as possible :o)
@Darryl312 (29)
• United States
29 Jan 10
Figure out if he scoliosis is genetic or idiopathic. A lot of new research is saying that most scoliosis patients with a form called idiopathic scoliosis are now showing that most people actually have an inner ear (vestibular) disorder.
I've met many people and relieved many through simple exercises that change how the body views the information coming from the ear. With a vestibular disorder your body is thinking that your body is somehow unbalanced, so the body compensates for it with the help of your eyes and fascia system to create another problem - scholiosis curvatures, so what you do, doesn't use as much energy.
Think computer posture isn't good for us, but many people just find it easier than being nice and tall.
