Dr's say my kids back pain isn't from her curve? Who has experience this?

[WorriedFather]

Hi all,

My daughter is 15 1/2 and was diagnosed with Scoliolis in the fall after 6 months of testing found no reason for her back pain. Now she is at 42 degrees on the lower curve and 24 above. She had bone cancer from 12.5 yrs old to 13.5 years old and has resulting nerve damage from the Chemo. She has been on pain meds (oxycodone, methadone, vicodin, oxycontin (not all at the same time) for years due to ongoing pain from her shoulder (they removed her scapula and clavical due to the bone cancer) and the dr's are now saying that she is in more pain then she should be from the curves. They seem to elude to a drug dependancy problem, which I guess is possible. My question is, how many of you out there know of someone or have experience back pain yourself from the scoliosis? Did surgery (rods& fusion) work for the pain? Some of her dr's seem to think it's all in her head. She goes for surgery May 3rd and her Oncologist and Psychiatrist are argueing with me and her spine specialist saying that the pain isn't from her curve and they want her in a "better mental state" before surgery. This will be her 5th surgery and she's been afraid for her life for years and dealt with pain for years. Of course she is depressed, anxious, and upset.

We have tried acupunture, PT, counseling, bracing and lots of pain meds and nothing has worked.

Thanks for your time, Matt

[xLinda]

I'm 14 and I have some slight back soreness most probably from Scoliosis. I guess you could call it back pain. But it's not as much as painful as irritating. The doctor said it could be some muscle problem, but I'm pretty sure this "pain" is from scoliosis. Or maybe that's just me being paranoid. :P

Good luck with your daughter

[Gail]

Hello Matt,

I just wanted to let you know that I am putting your daughter in my prayer journal. I will be praying that the Lord will give the doctors wisdom and clarity of mind as to what is causing her so much pain. I pray that her body will be healed completely and quickly.

I did have some pain with my 47 degree curvature, but not continuous and certainly not daily. Most of my pain was from trying to shop for any length of time, trying to stand to wash dishes or standing in one spot to cook.

I'm praying that you will get answers quickly.

Kindest Regards,
Gail

[The Professor]

Another idiot with an MD that can't seem to believe that there is real pain associated with most forms of scoliosis. This case may be different (it may be related to the removal of the scapula and clavicle), but many of us have pain from our scoliosis. The pain varies greatly from patient to patient, and doesn't always correspond to where the curve is, due to compression of spinal nerves in various places.

The most commonly cited pains are in the lower back, buttocks, thighs, and legs, with between the shoulder blades being commonly cited as well.

Personally, I had a 34 degree cervicothoracic and 28 degree thoracolumbar, and I experience frequent flare-ups of back pain eminating from the very lower part of the back (above and lateral to my sacrum) and directly between my scapulae. So-called "mild" and "moderate" scoliosis is very capable of causing back pain and should not be ignored or tolerated.

I didn't have any back pain until about age 29. After about 6 years of back pain complaints, a chiropractor finally made the diagnosis; my idiot doctor thought it was all in my head and kept prescribing pain medications that didn't do anything to help.

Sorry to keep harping on this, but this is a real sore spot with me. I have a Ph.D. and a Mensa level IQ-- and I'm just "imagining" that I have back pain? For nearly 2 weeks (before the diagnosis was made), it took me a good 30 to 40 minutes just to get out of bed, but according to my physician, I was just "imagining" that I was in pain.

My advice-- find another spine specialist or at least get a second opinion. Also, doctors are more likely to listen to you if you're well educated and can speak and understand scientific terms and jargon. Learn to use the jargon, and they're usually more apt to listen to what you have to say.

[The Professor]

Before I forget, a member of this board once advised another patient to keep a "pain journal". Define a scale to describe the pain, and keep a day by day log of how intense the pain is and where it's coming from. Show this to the doctor next time she goes; that way, even if she's not in as much pain during the office visit, the doctor can get a more accurate depiction of what's going on.

[cherylplinder]

HI Matt,
My ten year old daughter has experienced pain from her scoliosis for the past three years.
Her curves were 18 to 19 degrees for a couple of years, and yet, playing the paino and sweeping always caused her pain.
Last year her curves increased to in the 30's and she has had even more pain.
She is not a complainer. There is real pain from scoliosis.
You and your baby have been through a lot. I can't imagine trying to determine where the pain is coming from.
I posted Rachel's experience to let you know it can be from the scoliosis.
Is her body image affected? In other words, does she look alright?
I ask because I know of an older woman with a 15 degree curve who was incapacitated with her pain. She is using the Spinecor brace and has regained normal function and is very pleased.
I talked with Dr. Coillard last week, and she said a lot of the pain is muscular(postural), and can be corrected with the brace.
I was asking because of Rachel's pain now.
She said that by the time Rachel is grown, she ought to be OK pain wise if her posture is correct( if her curve does not progress). She said that many adults use the brace for pain now.
I am in no position to recommend this brace. I am only passing on information.
You could try it if you want to.
The brace has relieved almost all of Rachel's pain from her scoliosis.
Rachel is only 10, and a doctor from Shriner's last week told me she statistically has a 100% chance of progressing to surgery. But I will be happy if the brace controls her pain until we get there (or if some miracle occurs and she somehow does not progress to surgery)
I suppose it is obvious that I have no idea what will happen and no idea what to recommend.
I am worried for Rachel because I have heard it said that the only thing back surgery guarantees is another back surgery. I can't stand to think that she will suffer from this for the rest of her life.
She has had pain from scoliosis since she was 7 or 8. The brace she is in is very successful in curves under 25 degrees(completely correcting some).
I know you can't tell where your sweetie's pain is coming from.
The whole point of this rambling post is that you could try this brace if you want.
My heart is heavy for your decisions. I know this is so hard.
God bless,
Cheryl

[gerbo]

Hi Matt,

My Goodness, has your daughter and you had to cope with a lot, no wonder she is struggling, regardless of the exact cause


It is obvious that your daughter has enough reasons to be genuinly in pain, be it due to scoliosis or to the surgery she had.

The other side is that is it well known that underlying depression (however understandable its existence) can make the "pain experience" much worse, and treating that might give additional relief, and could reduce the need for analgesics.

Other classes of drugs (certain anti epileptics) can also be very useful as an additional treatment.

Seeing a "proper" painspecialist, who can look at all aspects, including the psychological ones, might be helpful

gerbo

[ScoliParent]

My daughter who is now 14 had back pain 2 years ago. She is not a complainer. It was in her thoracic area. Finally, a specialist that she was seeing for bladder issues ordered an MRI. He never got the results. When she saw her pediatrician for a sports physical 6 months later, we were told that she had scoliosis. An x-ray was done and it was 33 degrees. I got a copy of the MRI and it also showed she had Scoli. The brace helped the pain. When she outgrew the brace and we were not able to get another one, she had pain. She did PT for about 6 weeks prior to her surgery. I do believe you can have pain with scoliosis, but it is in the muscle.

[Jacque's Mom]

Matt, I am proof that you can have pain with scoliosis. I was 12 years old when diagnosed. My parents took me to the doctors as I would cry all the time from the pain, especially at night. Initially they thought it was "growing pains" but then finally figured out it had to be something other than that. This was in 1966 and not much was known about scolisis then. I was given excercises and went back every six months for x-rays - curve was always progressing. I finally had the surgery in 1981 at the age of 27 and was PAIN-FREE after I had the surgery. I have the Harrington Rod as that was the newest rod then. I did have problems years later (1997) that were mostly resolved with pain management. For me, surgery was the best thing I did. I got my life back; got married; had my daughter and would recommend it to anyone experiencing that type of horrendous pain. I wish you the best. LYNN

[mamakay]

From everything she has been threw I think your dtr knows pain when she feels it!
I would keep seeing other Dr's.. good luck and prayers...

p.s.My dtr complained of pain for 6 months before I took her seriously.

[WorriedFather]

I just wanted to say thank you to all of you for your support and advice. The dr's tend to dismiss her complaints, I believe that she is in pain. However, when they always question you it eventually makes you wonder. Thanks for sharing your experiences as it gives us support to battle with those that would rather medicate, then fix the problem.

[Jadey]

Hiya, I have alot of back pain (my condition is mentioned in my signature) and my Doctors won't do anything about it, it is very depressing and frustrating for me to keep going and to try and forget about the pain but with my exams only around the corner I feel I'm not going to cope.

All I can suggest it strong pain killers, it doesn't work well for me as I'm in alot of pain (am now) but my doctors won't help me

[KUBUs]

Matt,

I was in a similar situation as your daughter. First off I have a general bone/muscle disfunction/deformation called Arthrogryposis which has no rreal pain related to it, but I still had 2 knee surgeries, 2 hip surgeries, and just recently 3years ago I had my spin fused (T4-L4). My socliosis was directly related to my disability, but the back pain experienced was exponentially increased after i went through Chemo and radiation for Hodgkin's Lymphoma. I honestly think there is some correlation between the cancer treatment and the back pain. I also got the run around, well until found the right doctor that believed me, and took the necessary steps to correctly diagnose. BTW I was treated at the Shriners Hospital in Montreal which imo is one or the best institution when it comes to orthopedic or burn issues, os if there is one near you, try to get your daughter in there.

Sorry if I'm all over the place, GL!

Jakub

[sportsdoc]

good old phantom pain eh??
medical profession used to treat low back pain the same way back in old days...they though it came from the head and in many cases put patients in assylum...

whenever someone mentions "pain is in the head" it makes me wince...

Concept of pain has come a long way since old days...
it's no longer just something firing off pain receptors..
continuous bombardment of insults to tissues (friction, even stress factors) could cause hypersensitivity of receptors and normal touch could be pain like sensation...

If she's undergone chemo? long term pain? scoliosis? prolonged pain medication? and who knows what else?

The pain is definitely not in her head...

Seek second, 3rd, 4th opinion if necessary, get opinions from ortho, neuro, pain specialists..someone out there has to figure it out..

Diagnosis is a guessing game...differential or not......don't rely on one guys guess..

[scoliosiscared]

I used to have a lot of back pain. My doctor said it wasnt from scoliosis but it couldn't have been from anything else, so I just delt with it I guess. Good luck.

<3 Alyssa