16YO Lots of Pain, Headaches, I NEED HELP!!!

[klmoon]

16YO daughter diagnosed 8/08, 33* to 36*TL (depending on who is reading films). Report also states signs of spina bifida (can't remember location). She is in so much pain, daily headaches, been to 3 specialists in Kansas City (4th on Oct 8), all say same thing, not bad enough for surgery, too old for brace, live with it, she is not growing anymore they say so it will not get any worse. Physically looking at her, we can see that her R hip is further "thrown out" and her L shoulder is lower. This is very hard to swallow...she is only 16 how is she supposed to live with this the rest of her life? She goes to a chiropractor at lease 2, maybe 3, times per week, sometimes it helps, other times not so much. Looking for any advice anyone can offer.

Thank you for any advice you may have
Karen

[mariaf]

Hi Karen,

I'm so sorry to hear that your daughter is in so much pain. A curve in the mid-30's often does not cause severe pain and headaches, so perhaps there is something more going on here and/or the spina bifida is contributing in some way (sorry I don't know much about SB).

I talk to a lot of parents and have heard excellent things about the pediatric orthopedic/scoliosis team at Children's Mercy Hospital in Kansas City. Have they been one of your opinions? If not, I would suggest seeing them for an opinion them based on what I have heard.

Sorry I can't be of more help. But I wish you and your daughter all the best and hope that you will keep us posted.

[klmoon]

We have been to CM in KC. The doctor we seen had the worse bed side manner...left the room while I was still asking questions...he never came back in the room, just left. I am getting the feeling that my daughter is just going to have to suffer the rest of her life, can't get any help. Lots of sites say 40* curve is a surgery candidate, her curve is at 36*, is there that much difference in 4* to relieve her pain. She cannot continue to take pain meds daily forever. Not sure where to go now, Mayo, Shriners? SOMEONE PLEASE HELP ME FIND THE ANSWERS!!!

[Gryffindor]

Klmoon: You're in the exact same boat I was last November when my 14 yo daughter was diagnosed. Her curves were about the same as your daughter's and she was also in a lot of pain. That's what caused us to seek a diagnosis. We had no idea she had scoliosis and it seemed to come out of nowhere.

The 1st Dr. we saw only took 1 x-ray and proclaimed that she was too old for a brace but not bad enough for surgery. We sought a 2nd opinion but that Dr. didn't even bother to take an x-ray and said outright that he doesn't do spinal fusions any longer.

Finally, we went to a Shriners outreach clinic a couple of cities over in early March. Her curves had progressed from 21T 36L to 36T & 48L! This was just 3 months! She was set for surgery during that visit as her curves were painful and growing, even though she was supposedly done growing.

During our hospital stay at Shriners SLC for my daughter's surgery a month ago, I met parents from all over the country. Those that I met that had a child with scoliosis told the exact same story that I had, 1st Dr. was a bozo, 2nd Dr. was a bozo. It wasn't until they met with their current Dr. that they got a true diagnosis and correct measurements. You are FAR from alone on dealing with medical professionals that just don't get it.

Have they done a full set of x-rays, including x-rays where your daughter is bending? How often are they taking x-rays to follow her progression?

Has an MRI ever been ordered?

[klmoon]

Was told by three different doctors that it will not get worse b/c she is done growing. I can tell it is getting worse, hip is out further, shoulder is lower and pain is worse. They have done 2 series of xrays, none of them bent over. None of the doctors wanted to see her again, said there was nothing they could do, seemed kinda like I was wasting their precious time. Have another appt 10/8 with Dr. Bernhardt in KC. Found his name of the NSF website. Daughters boyfriends family is a big Shriner, they told her they would sponsor her to a Shriner hospital...going to wait and see what new doc says in October.

It kills me to see her in so much pain daily. She is not even acting like a 16YO any more.

Now complaining of REALLY bad headaches that won't go away, confusing basic things (locker combo - math equations - phone numbers - weird). Got appt with PCP today, going to request new series of xrays for back.

[rosa.smm]

I have to agree with Gryffindor. My daughter's first doctor said no brace needed, and her curves (23 and 26) weren't that bad and would get worse as she was done growing.

We could tell she was getting worse and she was in more pain all the time. We went and saw another doctor. Dr. said she needed surgery her curves ware now bigger (71 and 68) and getting worse. WE are still trying to work out what the best approach is, but TRUST YOURSELF. You know your daughter. Like everyone said, keep going till you find a dr. you like, can trust and will talk to you! It maybe such a hassle, but you will eventually find someone.

Sorry I can't be specific help, we don't live anywhere near you, but good luck and keep us posted.

Kristen's MOM

[Pooka1]

We have been to CM in KC. The doctor we seen had the worse bed side manner...left the room while I was still asking questions...he never came back in the room, just left. I am getting the feeling that my daughter is just going to have to suffer the rest of her life, can't get any help. Lots of sites say 40* curve is a surgery candidate, her curve is at 36*, is there that much difference in 4* to relieve her pain. She cannot continue to take pain meds daily forever. Not sure where to go now, Mayo, Shriners? SOMEONE PLEASE HELP ME FIND THE ANSWERS!!!

Even if she was at 40*, I'm not sure you are going to find a surgeon who will fuse her without evidence of continued progression. I am not so sure you could find someone to fuse a 50* without evidence of progression.

Will insurance even pay on fusing a sub-surgical curve absent evidence of progression? I have to wonder.

Now the pain thing is a very real problem. I hope you can find some surgeon who is willing both to operate on a sub-surgical curve and who thinks there is a good chance of pain relief from fusion.

[Gryffindor]

klmoon: If you have someone willing to sponsor your daughter through the Shriners Hospitals, I would definitely go that route. However, I wouldn't wait until October to reach out to them. They usually only do outreach clinics every 3 months or so. If they have any scheduled near where you live, you may have a couple of months wait just to have her seen and that's assuming that the upcoming outreach clinic hasn't already been booked solid.

It looks like your shrine would refer to the St. Louis hospital. Here's a link with info: http://www.araratshrine.com/hospitals/

[leahdragonfly]

Hi there,

I just wanted to mention that Shriner's does not require a child to be sponsored or referred in any way. The application is very simple, and just asks very basic info (name, address, etc). The only criteria is that the child has a condition that they feel can be helped by their specialized care, which includes scoliosis.

My daughter was followed for several years for her juvenile scoliosis at Shriners Philly, where they are wonderful. However, their waiting list was way too long when we opted for vertebral stapling, so we had her care transferred to Shriners St Louis. We live in Oregon so neither one was close at all, but definitely worth the travel.

My daughter had surgery in May with Dr Luhmann, and I like him and trust him completely. He has a wonderful bedside manner, very unhurried. You can call his nurse, Janet Schick, or just send in an application.

Good luck, and please do let us know how your daughter is getting along. There has to be an answer for a 16 y/o who is in daily pain.

[Fingers Crossed]

I want to second Leahdragonfly's recommendation for Dr. Luhmann.

My daughter had fusion surgery this summer at Children's Mercy/KC and had an awesome outcome and we loved her doctor and team, but St. Louis Shriner's is a logical next step for your daughter, I would think. Not too far and I've heard many wonderful things.

Hang in there . . . I also was thinking, is it possible there is more of a neurological rather than orthopaedic/spinal cause of this pain (like Maria, I don't know much about spina bifida, but wondered if that was at play here)?

Hang in there . . .

[Snoopy]

Was told by three different doctors that it will not get worse b/c she is done growing.

Don't believe that. In most cases, once the child is done growing the curve doesn't continue to progress. However, in my daughter's case her curve continued to progress even after she was done growing. Her curve progressed about 10* in a year's time.

Do you know if the Spina Bifida is occulta? Sorry, I hope I spelled that all correctly. My daughter too has Spina Bifida occulta and the doctors don't worry about it.

As for whether you should take her to Shriner's or not, the answer is YES! If you aren't finding a doctor who will listen to you and your daughter, take her for as many opinions as necessary and Shriner's Hospitals are usually a good choice. I took my daughter for five different opinions and never found a doctor who was right for us until I took her to Shriner's in Philadelphia. We found one other doctor, whom I allowed to do Jamie's surgery, but he trained under the chief of staff at Shriner's.

Good luck. Trust your instincts. If you aren't getting answers, keep pushing until you get them.

Mary Lou

[kennedy]

Mine also progress after i was done growing
my was 53 degrees when at the time of my surgery

[emarismom]

I would look for another cause for the pain and ask for an MRI to be done of the full spine. There maybe something else that is causing the headaches. Scoliosis does not cause headaches.

[mariaf]

We have been to CM in KC. The doctor we seen had the worse bed side manner...left the room while I was still asking questions...he never came back in the room, just left. I am getting the feeling that my daughter is just going to have to suffer the rest of her life, can't get any help. Lots of sites say 40* curve is a surgery candidate, her curve is at 36*, is there that much difference in 4* to relieve her pain. She cannot continue to take pain meds daily forever. Not sure where to go now, Mayo, Shriners? SOMEONE PLEASE HELP ME FIND THE ANSWERS!!!

Hi again,

I am so sorry you had this experience with the doctor. I was also a bit surprised because, like Jill's experience, anyone I had spoken to spoke very highly of the staff there or I would not have recommended them.

More important is getting to the bottom of your daughter's pain. I am just not convinced, for sure, that the pain is coming from her curve since it is 36 degrees. It could be, but I think I would look at other things that could be causing it as well. I know when my son's curve was 40 degrees he had no pain at all thankfully. Sorry if I missed it, but did your daughter have an MRI? The symptoms you describe (headaches, confusion) sound more neurological than something caused by scoli.

I also wanted to mention that 40 is pretty much the absolute bottom number in terms of cutoff for fusion. Meaning, many surgeons will only recommend fusion at 45, some even at 50. Of course, they look at lots of factors like growth remaining, location of curve, likelihood of progression, etc.

Lastly, I wanted to say that I agree Shriners Hospital is a great choice for another opinion. We've been going to the one in Philadelaphia since 2003 and I could not be more pleased at the care my son has received. And as Gayle said, you do not need a sponsor. You can call the hospital directly and ask for an appt. For example, the contact information for the scoliosis team in Philly is in my signature. If you wanted to go to St. Louis, I would contact them directly. I believe the number is 314-432-3600. I see that Gayle provided the name of Dr. Luhmann's nurse above. You do not have to go through your local Shrine temple. (I just don't want to see you waste precious time)

Best of luck.

[bas2101]

Hi,

I am sorry your daughter is in so much pain. Has she had an MRI? If it were my daughter (and my daughter has had this), I would get full spine and brain MRI.

Brooke