Announcement

Collapse
No announcement yet.

Confused

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Confused

    Hello
    This is the first time I have written. I found this site today.
    I have a 15 year old daughter that was diagnosed with scoliosis a few years ago. Her back was originally at a 36 degree angle. She has a double angle and I am not sure what the other angle was at.
    My daughter also has a lung condition and asthma.
    They fit her for a brace, Boston brace, which she wore for several months. However, the brace affected her breathing and so it was decided that she would no longer wear it. Last October she was sent by her orthosurgeon(?) to a more specialized doctor. Her curve had progressed to just under 50. The speciailist said to come back in 6 months.
    That took us to last week when we went in with my daughter and even though the doctor said that her back had not changes, we saw on the x-ray 55 degrees and the other angle was 50 degrees. The surgeon said that it hadn't changed and he would see us in a year. I was very surprised at the length of time to wait. There was no discussing any options nor any talk about how we felt about anything. I was very disappointment and left feeling confused and that I would like a second opinion.
    My daughter had a double hernia operation at 18 months. Ahs also has a kidney misplaced - during an ultracound they couldn't find it. They located it in her pelvis.
    She has had pneumonia and bronchitis many times in her life and has been on more medication that I can count.
    She has a great children's respirologist that she sees regularly - she monitors her breathing with breath tests every few months. My daughter takes advair twice a day for her breathing and ventalin as needed, often once a day.
    I feel like I would like someone to look at all of her medical symptoms and see if somehow they are connected. IT feels like they might be. I have had many bad experiences with doctos because my daughter has a high tolerance for pain, enjoys needles, and most often appears healthy, even when she is in fact quite ill.
    Even though her back is at 55 right now, she doesn't even look like she has scoliosis - except if you look for it.
    My questions are - where could I go for a second opinion?
    Does any one have any knowledge or experience of scoliosis affecting lung concerns, even when the angle is only 55?
    Also, any feedback on waiting an entire year before being checked again?
    My daughter has recently been commenting on her back being sore and pain in her legs, although at this point it is manageable.
    Thank you so much for reading this and for any feedback you may give.
    Penk

  • #2
    Hi,
    My 15 year old daughter had surgery April 7th. She too has asthma. Our pulmologist did lung capacity tests which showed she was only at 71% caapacity. We were really surprised to hear this as she is a competetive soccer player. The ortho didn't think her scoliosis was causing the diminished lung capacity. At that time her curve was about 46%. It's frustrating I know when you can't get specialist together to discuss the whole child. Eventually we did get the ortho. and pulmo. to talk along with her primary pediatrician. Her curve continued to progress to about 52%, lung capacity tests were done again with consistant results and further x-rays revealed that she did not have the normal kyphosis which Drs. felt contributed to diminished lung capacity at such a small curve. (usually it more an issue with 70-100 % curves) During surgery they discovered she had a slight hypokyphosis. Her spine curved in toward her lungs rather than out. All this had a negative affect on her lungs. Has your daughters lung capacity been tested? I would definitely get another opinion. People on the forum should be able to give you some referrals for Drs. If you let us know where you live. Good luck. I would not wait long to see another Dr. We were told you don't get much lung capacity back once it is lost. Hope this helps.
    Kate

    Comment

    Working...
    X