View Full Version : New here, frustrated and overwhelmed (sorry long)
17th August 2007, 09:16 PM
My 8 year old daughter was diagnosed with scoliosis at the beginning of the year. Her specialist hasn't explained anything to us! he is so frustrating!!!
We just received her Boston brace last Friday and tonight will be the first night she tries to sleep with it on. when she was getting fitted for the brace the physical therapist asked us how long the Dr wanted her to wear it. i told him 18 to 20 hours a day. He looked at me puzzled. He goes on to say that we might want to ask the dr. if she could only wear it at night. She has a 23 degree curve at the bottom and a 17 degree curve at the top. He told us that they don't usually start bracing kids at their clinic until they are at or over 25 degrees. We thought great, this could work! So we went up stars and had to take another X-ray, this time with the brace on. Originally they told us they wanted to see a 50% fix while she has her brace on.
So the nurse comes in and outs both X-rays on the board. We keep looking at it 'cuz the curve is now going in the other direction???? The Dr came in and said that he was happy with the brace 'cuz it fixed it 50% it was now at 11 degrees. I was so confused. Finally i asked why it was going in the opposite direction. He then started to look at the Xray again, this time for a while. Shot the nurse a dirty look and told us tit would be fine. then quickly left the room.
So to my questions:
I know you arenít doctors, but I figure life experience makes you more then qualified;
Does 23 degrees seem to early for this aggressive of treatment?
Should we be concerned that while in the brace her spine is now curving to the other side? a 150% change.
Would you get a new Dr?
i feel so overwhelmed and i don't know how we are going to get through this for 10 more years!
17th August 2007, 11:39 PM
Hello and welcome. Did they put the damn xray up on the light backwards or something else? The doctor left without answering your questions? Find another scoliosis specialist!
18th August 2007, 05:56 AM
If you can get a referrel to another specialist, I think that would be a good idea. You have to be really firm and pushy sometimes to get your questions answered, but the doctor should answer them! You could try complaining. One thing that Jean recommends is getting a notebook, writing your question in it before the appointment and writing the answers during the appointment. Its a good way to make sure you remember everything and a good way to show the doctor that you're serious about getting proper explainations, too.
I never wore a brace, so I just know what I've read and what I know from other people's experiences. But, generally, the sooner a child is braced, the better the chances that the brace will be effective and surgery won't be necessary. You can certainly ask your doctor (and a second one) if the treatment is too aggressive, but bracing can work and it does usually require that the brace be wore most of the day. You daughter is still young so she had a lot of growing to do, and curves tend to progress during growth. Scoliosis surgery isn't the end of the world, but it's not something you want to go through if you don't have to.
Good luck - I hope you get your questions answered by a doctor. It's great that you're concerned about your daugher and doing something about it. :welcome2:
18th August 2007, 10:07 PM
The hospital should have a PALS (Patient Advice and Liaison Service) office.
When I wanted a second opinion for my daughter I was having great difficulty getting the x-rays from the consultant - the secretary not returning my calls, emails, etc. :nut: So I called PALS and chatted it through with someone who said they would try and sort it out and suddenly I had a call from the secretary nice as pie offering me the x-rays!
They are there to help you communicate with your consultant so I'm sure they would advise you what to do next. Alternatively you could chat it through with your GP. DON'T GIVE UP! You need to do what's best for your daughter.
24th August 2007, 06:11 PM
Sorry, don't really have any advice cos I'm not good on the technical stuff. Just wanted to say hi and :welcome2:
27th August 2007, 09:23 PM
I would urge you to find another specialist, too. Even if the 150% correction is fine, the fact that the physician isn't communicating with you is very troubling to me. I've seen in scoliosis treatment that the best thing you can do for yourself/your child is to be very proactive... if you're not feeling comfortable with the doctor or the treatment, fully explore your options.
28th August 2007, 05:03 AM
The more I think about your post the angrier I get. Find a new scoliosis specialist. You have to be the best advocate of "good" medical care for your child. Raise hell! There is no need to have to deal with a less than knowledgeable medical professional. They get paid big bucks - let them earn it and let them explain everything you want explained. It's time to be a Mama Lion Grrrr!
28th August 2007, 11:16 AM
the opposite view is that at this stage the consultant is of no relevance in the treatment process and what your daughter needs is a good orthotist who makes good braces, and by all means, managing to get the curve to bend in the opposite direction is pretty good going. You might get a better consultant, with better communication skills, but if their orthotists are not as good, you'll be worse off.
i woukld not be surprised though if it did not go in the other direction, but that they had the x-ray the wrong way around on the screen, that happened to us once.
opinions on whether to brace at 23 degrees are divided, and some would wait till there is proven increase in magnitude of the curve over a relative short time, or till the curve is over 25 degrees. However, you are not that far from that point, and considering that there is a growth spurt to come mny would agree that action now could be beneficial.
what you could do is to phone and speak to the orthotist and ask him/ her to clarify what the xrays exactly showed. if you are lucky, and considering they are not doctors and possibly have a bit more time and patience, you'll get a good explanation.
alternatively ask your gp to write to the consultant asking to clarify what the xray exactly showed, or if you feel brave, write yourslf
which consultant do you see and where?
28th August 2007, 02:43 PM
Even though the doctor didn't comment on the x-rays shouldn't put you off. Perhaps he was having a bad day - which is very common with orthopaedic doctors. The fact that this doctor is bracing your daughter at such an early stage is very good! Most doctors would take a "wait and see" approach which is obviously not in your daughter's best interest given her age and the fact that rigid braces are designed to *maintain* a curve and not correct. Why wait for the curve to progress to 30 degrees and just hope to maintain it at that level???? If you wait that long, the forces of gravity will work against your daughter and the curve will most likely progress to surgery levels. If it were me, I would take the path of least resistance and see a doctor that prescribes the Spinecor brace given that your daughter has a small curve it would work very well for her.
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