Overloaded...

[rohrer01]

Annm,
I've been reading your thread. You are very good natured to sit through the arguing about ethics of this and that. However, it was all very well intended. You are doing the best you can do for your daughter and are to be commended. I have a son with ADHD, and he was very difficult to raise without any further health issues, so I can empathize there. I think your daughter's body will determine how she eventually wants to deal with this. If Dr. Gupta says she needs surgery and she's not ready, then I believe she will be thinking about the idea whether or not you EVER bring it up. If she has quit swimming competitively, it may be a physical limiting factor that she just doesn't want to talk about. If she is in pain, she may eventually realize that this is what is best for her. She has a lot of time to mature.

My only concern is, as in the case of my daughter, I wasn't aggressive enough with her scoli. She was diagnosed at age 12 and sent to a "regular" sports ortho who said she never needed any more follow up. I stupidly listened and now she's 22 and I can't even get her to go to a "real" scoli doc to get it checked to see how bad it is, even though she has insurance. She has a lot of back pain and I can see her curve, although I think is subsurgical, but am frustrated that I have NO say because of her age.

The reason I bring that up is that YOU are the MOM and she is the CHILD. Right now you have the authority to make her medical decisions, even aside from what she may want. I'm not implying at all that now is the time to get pushy, as your relationship needs to be good. But there may come a time when the doc really thinks she needs the surgery and you might have to just say, sorry young lady, you need this. I would really talk to the doctor about this delicate situation. Teen mom and daughter relationships can really deteriorate quickly between 12 and 18. Sometimes I think it's the natural progression of things...it gets better, then it gets worse...and on, and on.

The above problem is that IF she ends up needing surgery as an adult, will there be insurance coverage to pay for it? That will be HER problem and there won't be much you can do to help if she is beyond the age for your insurance to cover her, if you have insurance. Kids get care for free. Adults don't. Plain and simple. It's tough for someone who is poor and uninsured to get help. Not trying to scare you or say that your daughter will be poor. We just don't know what life will bring and her opportunity for help is now.

I hope I'm not offending in any way. I am just one of those "poor" adults where literally over half of my husbands paycheck goes to paying for insurance for me and taking care of my medical bills. I'll be covered when the time comes if nothing happens to him or his employment. But it's something that I'm more than a little concerned about. My intentions are all the best and I'm certainly not trying to scare you into getting your daughter a dangerous and risky procedure. I just wanted to give you some other things to "think" about.

Rohrer01

[titaniumed]

Nice to see a local. And yes, there are no support groups up here.....but Diane Gums runs them down in Sacramento.....There seem to be many scoli girls and their mom’s there.....Dr Picetti usually answers any questions. It’s a great group.
http://www.scoliosislinks.com/SupportGroups.htm

Its hard to say why she quit swimming, and I wouldn’t let it concern you much. The one thing I know is that we as patients wonder what our future entails.....major surgery for a child can be quite a scare. I was a candidate in 1975, and wondered all along what was going to happen.....it was a 34 year wait. I waited for technology to advance, and I was scared to death. At 49, I had no choice, and Dr Menmuir at Reno Orthopedic did a fantastic job.

Scoliosis teaches patience, that’s for sure. Diagnosis for a child can be an emotional ton of bricks, or just a little bump in the road. I had that weight on my shoulders till I realized that there wasn’t much I could really do about it. I lived my life and nothing ever stopped me. I skied big mountain and chased powder for decades.....now you know how I ended up here. Yes, I still ski with a full fusion and after all the surgeries and such good luck, we have a terrible winter! What are you going to do? (smiley face)

This forum is great because so many people bring up things that are easily overlooked....it can be serious or sometimes comical. I try to contribute some comedy, after all, we have to keep smiling, don’t we?

Hang in there and cheer up.
Remember that we have a “PM” private mail system here.....
Ed

[LSKOCH5]

Dear Annm -
So sorry you & your daughter are going through all this. You've gotten some good advice from many on here - TanzTom has had great results w his daughter, Rohrer brought up the issue about the fact that insurance pays for a child's scoli surgery yet adults seem to have a much tougher time - not only w insurance issues, but with results, length of recovery, etc. Gayle & I have children who've had successful surgeries; thank God & our surgeons we've moved on down the road past it (just 10 weeks out w my son, he has no more pain & is running around w his friends & is drumming up a storm). Some of us had no choice but surgery due to pain & degree of curvature, pressing on lung, etc. Although you have a great doctor, it might be a good idea for both of you to hear another surgeon's opinion, if only just to clarify for you what the proper course of action would be, and for her to get her mind around it all a little more. Certainly there are a several young people on here who would be willing to talk w your daughter, incl my son, as they reached out to us in the weeks before surgery.
All the best to you,
LeighAnn

[annm]

one more thought

thank you to all who reached out, I appreciate knowing that there is support, even if there's none locally. My daughter is complaining about her back hurting and that she can't seem to fill her lungs to play her trombone today. Now if you all remember she quit swimming (I call it a break) last week, and I'm wondering if she going to feel all of these things more now that her body is at rest...any thoughts

[Pooka1]

thank you to all who reached out, I appreciate knowing that there is support, even if there's none locally. My daughter is complaining about her back hurting and that she can't seem to fill her lungs to play her trombone today. Now if you all remember she quit swimming (I call it a break) last week, and I'm wondering if she going to feel all of these things more now that her body is at rest...any thoughts

You might be right about stopping the physical activity and what happens to muscle tone. But I doubt her curve could have gotten big enough to affect her lungs since the last radiograph. Even if her curve is moving 5* a month as was the case for my one daughter, it would now be about 67* which is still too small to affect lungs per my understanding. See what the surgeon says.

On the issue of pain, some surgeons are (finally) admitting that AIS can be associated with pain. My one daughter with the fast moving, highly rotated curve had muscle pain over her right scapula where the rib hump was. It persisted several weeks after she was fused but finally went away forever. I think the curve was pulling the soft tissue to it's limit. The other kid never had pain.

ps. I played trombone in junior high. :-)

[TAMZTOM]

thank you to all who reached out, I appreciate knowing that there is support, even if there's none locally. My daughter is complaining about her back hurting and that she can't seem to fill her lungs to play her trombone today. Now if you all remember she quit swimming (I call it a break) last week, and I'm wondering if she going to feel all of these things more now that her body is at rest...any thoughts

My daughter experienced the same. Twice, while running training, I had to stop her as she was out of breath--she was NEVER out of breath before. Her original thoracic curve was 40 - 44 degrees. That isn't the important factor; the thorax in our case (and most cases) is asymmetrical, even down as low as 30 degrees--that is what compromises the respiratory system.
Many psychotherapeutic disciplines/methods promote breathing exercises to address the respiratory problems accompanying scoliosis. Several actually monitor increases and decreases during intensive therapy. The results are quick and significant.
Swimming is tremendous aerobic exercise, but one week out won't have significantly altered your daughter's aerobic capacity. 3 weeks, yes. I have no medical or physiotherapy qualifications, so when I suggest that asymmetrical respiration is a likely cause of your daughter's breathlessness, investigate further.

As with Sharon's daughter, mine also had pain in the same area. The rhomboid, trapezius and other muscles will be overstretched around the right prominent upper ribs (scapula area and surrounding tissues). My daughter's pain has almost entirely disappeared since we redressed the overstretched muscles and strengthened the muscle groups that were not working previously.
As a swimmer, your daughter is likely to have relatively increased the strength of the back muscle on her dominant side (e.g., right handed). Look for evidence of hypertrophy of the above muscles.

Best of luck
Tom

[rohrer01]

I always had trouble with long distance running as a teen. I would be short of breath, tachycardia, and pain. I couldn't do it, although I could sprint. I played the saxophone, very well I might add, and in hindsight I had MUCH better lung capacity. You have to learn to control your breathing so much while playing any wind instrument. I would encourage your daughter to keep up with her trombone.

I think the other stuff had to do with the undiagnosed heart condition (exercise intolerance).

[Pooka1]

I was looking for the talk Boachie gave about long term untreated scoliosis because he made some comment about how even high angles won't likely kill you or even compromise your lungs too much. I think he said something about needing to be above at least 90* for long periods of time if I recall correctly. Maybe Linda knows. I'll keep looking for it.

Here's what I could find on lung function at various Cobbs...

-----------

The rate of shortness of breath is not increased, although patients with 50 degrees curves at maturity or 80 degrees curves during adulthood are at increased risk of developing shortness of breath.

http://www.ncbi.nlm.nih.gov/pubmed/16759428

------------

PULMONARY SYMPTOMATOLOGY AND MORTALITY

Only in high angled thoracic curves is there a direct
correlation between increasing curve severity and
decreasing vital capacity. The pattern is uniformly that of
restrictive lung disease and smokers are more severely
affected than nonsmokers. Only in these high angled
curves of more than 1000 is the morbidity (secondary to
cor pulmonale) significant27'30. Thoracic lordosis (hypokyphosis)
further compromises pulmonary function. The
specific relationships between the loss of thoracic kyphosis
and pulmonary compromise have yet to be quantitated.
In the adolescent, surgery will stabilize pulmonary function
and in some cases provide a 10-20% increase in lung
volumes'4 25'31. In the adult, however, minimal gains can be
expected. Pulmonary function in general will be stabilized
and symptoms may improve23'25. Hence, in the skeletally
immature adolescent with a thoracic curve that progresses
despite bracing, because of its high probability of
continued progression leading to diminished pulmonary
function, surgery is indicated. In the skeletally mature
patient with a thoracic curve, surgery is indicated in documented
pulmonary compromise. Surgery is also indicated
if one is certain that the curve is progressing, and that if
left untreated it will lead to pulmonary compromise and
symptoms. In these circumstances, surgical indications
can be based on objective parameters.

http://www.ncbi.nlm.nih.gov/pmc/arti...00024-0092.pdf

---------------

Here's one on the effects of bracing on lungs...

Effect of bracing on respiratory mechanics in mild
idiopathic scoliosis
J DECLAN KENNEDY, COLIN F ROBERTSON, IRENE HUDSON,
PETER D PHELAN
From the Professorial Department of Thoracic Medicine, Royal Children's Hospital, and the Department of
Paediatrics, University ofMelbourne, Parkville, Victoria, Australia
ABSTRACT The use of a corrective orthopaedic brace is an established form of management for
patients with progressive idiopathic scoliosis. Thirteen patients with mild idiopathic scoliosis were
studied with and without the corrective brace applied. Lung volumes and the pattern ofchest wall and
abdominal movement were measured during quiet breathing. Transdiaphragmatic pressures were
measured in six of the patients and upper ribcage movement in seven patients. Application of the
brace resulted in a significant reduction in vital capacity (14%), functional residual capacity (22%),
and total lung capacity (12%). There was no effect on respiratory rate or minute volume. In the erect
position the pattern of chest wall movement was altered with a reduction in lower ribcage movement
of 46% and abdominal wall of 39% and an increase in upper ribcage movement of 43%. These
changes were greater in the supine position. There was at least a twofold increase in end inspiratory
and end expiratory gastric pressures during tidal breathing, but oesophageal pressures were not
affected by the brace. Transdiaphragmatic pressures showed a similar twofold increase, which implies
a substantial increase in the work of breathing. In view of the doubts concerning the influence of
bracing on the natural history of idiopathic scoliosis and the substantial functional effect of bracing
on the respiratory system, it is suggested that the current practice ofbracing in this condition needs to
be reviewed.

http://thorax.bmj.com/content/44/7/548.full.pdf

[Pooka1]

Here's another...

Two cornerstone papers have been published by Pehrsson and Nachemson. They found that in the long term mortality for pulmonary deficit is increased with respect to the normal population only in infantile and juvenile scoliosis, not in the adolescent type [126-128], even if subgrouping could have decreased the power of the statistical analysis. In fact, in the 50 year natural history study by Weinstein, patients with severe thoracic curves have a decreased pulmonary function, with an increased risk of shortness of breath[36]. Sponseller raised some questions on the possibility that there may exist a correlation between pulmonary function and mortality (since at least 4 persons in Weinstein's series could have died because of that and the cause for too many others is unknown[11]). Long-term data on braced and surgically treated comparable patients are actually lacking. In summary, BF seems to be a good reason to treat our patients, even if the literature does not fully support this idea (at least for adolescent idiopathic scoliosis and only when looking at mortality data, not when looking at pulmonary function and well-being).

http://www.biomedcentral.com/1748-7161/1/4

[jrnyc]

there is a simple breatheing test the surgeons use in their offices...
the same test used by many doctors...
it would be very easy for any doctor to give your daughter, unless
doing so might upset her...

i just love how doctors have to catch up with their patients on the subject of pain...
patients have been complaining of pain associated with scoli for years....
and doctors are finally admitting it is true....?!!!
whether connected to muscles overcompensating for strain on one side of the body, or any of
the other things that can cause pain when scoli is involved, it is a real shame that doctors
haven't acknowledged this sooner!!
my scoli was found, officially, when i complained that it felt like i had a monkey on my back,
or more like a gorilla, and an X ray was taken...

jess

[rohrer01]

My surgeon told me (an adult) that the surgery would actually decrease my lung function. With the severe hypokyphosis that I have, I wonder why this would be so?

My scoliosis was also found because I was in excruciating PAIN. Then the docs go and say it doesn't hurt. What's up with that? I would have never known I had scoli if it didn't hurt.

[Pooka1]

Most kids apparently don't have pain. The surgeons are talking about kids when they say AIS is not associated with pain.

Many or most adults do have pain.

[rohrer01]

Most kids apparently don't have pain. The surgeons are talking about kids when they say AIS is not associated with pain.

Many or most adults do have pain.

I was a kid, just as Annm's daughter is a kid. I think they need to rethink pain in kids. It really takes a lot of pain for most kids to complain. Maybe this is why they think it doesn't hurt.

[LSKOCH5]

I was a kid, just as Annm's daughter is a kid. I think they need to rethink pain in kids. It really takes a lot of pain for most kids to complain. Maybe this is why they think it doesn't hurt.

I agree that they need to study the pain issue in kids; my son was in so much pain that it limited his activities, & apparently he lived w a lesser amount of pain for at least a year before it became so bad that he finally said something. There are many kids on this forum who have complained of pain. It really bothers me when someone minimalizes kids' pain on the forum & off, because it's as tho there's disbelief that there is actual pain. How could there not be, when their spines are twisted out of shape & forcing internal parts into places they don't belong? As well as the imbalance pulling on muscles, etc.
Also have to agree w TanzTom re lungs; we knew that at some point without surg that Jacob's lungs would be compromised due to the spine, but we were told when he was diag w bronchitis the week before surgery that his lung already couldn't inflate fully, there was compression (even tho he was only 60*).

[annm]

You might be right about stopping the physical activity and what happens to muscle tone. But I doubt her curve could have gotten big enough to affect her lungs since the last radiograph. Even if her curve is moving 5* a month as was the case for my one daughter, it would now be about 67* which is still too small to affect lungs per my understanding. See what the surgeon says.

On the issue of pain, some surgeons are (finally) admitting that AIS can be associated with pain. My one daughter with the fast moving, highly rotated curve had muscle pain over her right scapula where the rib hump was. It persisted several weeks after she was fused but finally went away forever. I think the curve was pulling the soft tissue to it's limit. The other kid never had pain.

ps. I played trombone in junior high. :-)

I personally think the breathing thing was allergies with an approaching storm and the fact that she is out of the water simply leans towards her lack of exercise is making her feel different. I don't discourage her from anything active and she is the only girl in the school that plays the trombone, so she is really proud of that. I do not think her curves have grown hugely but I do feel like they are growing and the pain is mostly where her spine "should" and on the opposite sides of her curves in the muscle.