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

[mbeckoff]

I am so sorry that you daughter is in so much pain

Please keep us informed

She and you are in my prayers

Melissa

[klmoon]

Update

We had her MRI on Tuesday 10/12, waiting to get results. Back to ortho specialist on Friday. Doc said that scoliosis does not cause pain. Really? Not according to post on the forum. Also according to him, her curve is at 39*.

It makes sense to me that if the spine is rotating, nerves and muscles would be stretching too. Why would this not cause pain?

Today new symptom, tingly-sleepy like feeling going down her leg. Still fighting horrible headaches, yesterday it was so bad she had to come home from school.

I need to get to the bottom of these issues. Not sure where to go now. Any ideas? PLEASE help give me a clue what to do now. Still waiting to hear back from the Shriners.

[Pooka1]

I looked for the post I made that included some research showing AIS can cause pain. It was from a blog post on Dr. Hey's site.

You need to find the cause of the headaches. Do NOT put all your eggs in the scoliosis basket as it could be a bunch of other things. Your daughter's headaches could be completely independent of the scoliosis/rotation/etc. especially since the curve didn't worsen during the time the headaches came on. You do NOT want to go down a single road especially when there is no evidence that is the right road.

There is a Hey blog post about pain associated with Erlers-Danlos scoliosis but that is quite rare so I hesitate to mention it. (ETA: That was back pain as I now recall and not headache so it is not relevant here.)

If it were my daughter, I would take her to a pediatric neurologist or a pediatric brain surgeon or pediatric pain specialist to find the cause of the headaches.

Good luck.

[Pooka1]

By the way, it occurred to me while driving today... while scoliosis can cause back pain, I am not sure it is anatomically possible for scoliosis to cause headache. I think it is impossible.

Anyone know?

[tonibunny]

It's pretty much accepted here in the UK that scoliosis can cause cervicogenic headaches, if the neck takes a lot of strain from the spine being curved. These usually manifest as a pain at the back of the head, around the occiput.

It seems logical that some people with scoliosis will get these sort of headaches (a couple of my friends suffer dreadfully with them) but I've not heard of scoliosis being considered to be a direct cause of any other sort of headache.

[Pooka1]

It's pretty much accepted here in the UK that scoliosis can cause cervicogenic headaches, if the neck takes a lot of strain from the spine being curved. These usually manifest as a pain at the back of the head, around the occiput.

It seems logical that some people with scoliosis will get these sort of headaches (a couple of my friends suffer dreadfully with them) but I've not heard of scoliosis being considered to be a direct cause of any other sort of headache.

Ah thank you for posting that. Very interesting.

This girl has a 39* curve but I don't know where in the spine. Unless it is very high, her scoliosis almost certainly can't be causing the headaches it seems. And even if it was high, I wonder about the incidence fo those occiput headaches even among that crowd.

[mariaf]

We had her MRI on Tuesday 10/12, waiting to get results. Back to ortho specialist on Friday. Doc said that scoliosis does not cause pain. Really? Not according to post on the forum. Also according to him, her curve is at 39*.

It makes sense to me that if the spine is rotating, nerves and muscles would be stretching too. Why would this not cause pain?

Today new symptom, tingly-sleepy like feeling going down her leg. Still fighting horrible headaches, yesterday it was so bad she had to come home from school.

I need to get to the bottom of these issues. Not sure where to go now. Any ideas? PLEASE help give me a clue what to do now. Still waiting to hear back from the Shriners.

Hi,

I'm sorry your daughter continues to suffer with headaches, and now another symptom. Hopefully, you will get some answers soon. Did they tell you when to expect the MRI results back? (I would think the doctor could at least get a preliminary report within a couple of days). If it were me, I would even try calling today to find out (I'm not very patient when it comes to this sort of thing)!

Just curious - which Shriners hospital did you apply to? I would suggest, rather than waiting for the formal application process to go through, calling the appropriate contact person. I know, for example, that at the Philly Shriners Hospital, that often expedites matters

Best of luck and please keep us posted.

[Pooka1]

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

http://drlloydhey.blogspot.com/2008/...t-who-was.html

It is important for parents and adolescents with scoliosis to know that bracing can help slow down curve progression during adolescence, but it does not guarantee that the curve will not progress during adulthood, even if the curve when you finish growing is less than 50 degrees. Meredith, who works in my office at Hey Clinic had a 30 degree curve when she was done growing, but the curve went to 45 degrees when she was a senior in college, at which point she had it fixed. Many others have had similar experiences, and are often angry if they were not told about the potential for progression after they were “done growing.”

Also, there are several testimonials on this forum of people who were sub-surgical at maturity who were later fused for progression, sometimes as young adults, sometimes after having kids.

A fairly robust number (though not a guarantee) to be under at maturity seems to be 30*, NOT 50* as is often cited. I posted a citation for this a while back but can't find it now. There is some evidence that 30* is a good threshold for saying if you are below that, you likely won't need fusion for progression though fusion for pain due to ancillary damage from the curve over the years is still an open question.

[Snoopy]

[QUOTE Also, there are several testimonials on this forum of people who were sub-surgical at maturity who were later fused for progression, sometimes as young adults, sometimes after having kids. [/QUOTE]


And sometimes there are teenagers like mine who were skelatlly mature and her curve still continued to progress.....long before she reached adulthood and/or had kids. Jamie's main curve progressed 10* in one year after she reached skeletal maturity.

Mary Lou

[Pooka1]

Also, there are several testimonials on this forum of people who were sub-surgical at maturity who were later fused for progression, sometimes as young adults, sometimes after having kids.

And sometimes there are teenagers like mine who were skeletally mature and her curve still continued to progress.....long before she reached adulthood and/or had kids. Jamie's main curve progressed 10* in one year after she reached skeletal maturity.

Mary Lou

Yes that is still the most jaw-dropping testimonial in that respect. Truly. I am guessing it must be some type of record. I haven't read anything close to that anywhere, not just in this forum. Even the people whose spine "collapsed" like in that one Hey blog entry didn't move that fast.

[hdugger]

My son continued to progress for two years after he was skeletally mature. He either progressed 12 degrees each year, or 24 in one year depending on the different reads of his xrays. And then, he stopped, and he's been stopped for the last 3 years.

I've heard that this is more common with boys.

[Pooka1]

My son continued to progress for two years after he was skeletally mature. He either progressed 12 degrees each year, or 24 in one year depending on the different reads of his xrays. And then, he stopped, and he's been stopped for the last 3 years.

I've heard that this is more common with boys.

Okay that is certainly a paradigm buster not to mention a huge range of possible values.

What age was he during this 2-year period and how did they determine he was skeletally mature?

[hdugger]

He was 16 when he was diagnosed and 17 or 18 by the time he finally stopped progressing. Actually, I think I may have the timing wrong - I think he was getting xrays every 6 months or so, so the 24 degree progression was within a year or 18 months.

Because they told us he was fully mature at 16 with a 35 degree curve, we figured we were out of the woods and didn't pay much attention to specifics. I know they didn't take a hand xray, so I'm assuming our doctor gauged it from the spinal xray.

Even more oddly, at each subsequent visit our doctor would say "oh, it hasn't changed" and I'd have to keep reminding him that he'd measured it at 12 degrees less at the last visit. The second time I did that (at our 3rd visit, when my son was almost at the 60 degree mark), the doctor said he'd measured it differently the last time, so it hadn't changed between the second and third visit. If that's right (and, really, we didn't end up with much faith in anything he said because of all the weird measuring stuff), than he progressed 24 degrees in less than a year, between his first and second xray.

[mariaf]

While I realize that every child is different, I was under the impression that it was uncommon for a boy to be completely done growing by 16. I know some boys who have grown while in college. My older son (now 22) had done most of his growing by age 18 or so, but still grew an inch or two even after that.

In fact, I asked Dr. Betz once when boys 'generally' have their big growth spurt and he said anytime between about 14 and 17 - again, generally speaking.

I think my older son really shot up around 15 or maybe even closer to 16.

So I'm just wondering if they could have been wrong in stating that all growth was complete for your son at 16, especially since his curve progressed significantly after that point.

Just speculating

[hdugger]

Hi Maria,

Yes, they absolutely could have been wrong about whether he'd finished growing.

Note to other parents - if you go in to see a surgeon about scoliosis, and 90% of the other patients in the waiting room are babies with club feet, it's likely you have the wrong sort of orthopedic specialist. If we'd realized that our son was *not* out of the woods on that first visit, we would have found the right kind of orthopedic surgeon earlier on. But, because it seemed like he wouldn't need to go on seeing a doctor, we didn't really worry about it.

In the long run, it didn't really matter. He was never a candidate for any other kind of official treatment, and he didn't hit the magical surgical cutoff number until he was really, truly completely grown. So, I think he would always have been in that "maybe we should do surgery, and maybe we shouldn't" category that he's in now.

The potential bright light in all of this is that, by the time he does have to have surgery, they may have gotten that PJK stuff figured out.