Newbie

[Tracie]

I have a 13 year old son that is very active, plays all sports including football. After his game last Thursday he told me that he had gotten a stinger during the game. He said he just shook his arms till he got the feeling back in his arms. He never came off of the field. Thursday night and Friday he said he was kind of sore. He took ibuprofen and put ice on his shoulder and neck. Saturday and Sunday he seemed to be fine. Monday he ask me to look at his shoulder. His left shoulder was about 1 1/2 inches higher than his right. I called and made him a doctors appointment, the doctor sent us to the emergency room to have x rays done. The doctor in the doctors office and in the emergency room told him he would never play sports again. The ER doctor showed us the xrays and said he has scoliosis at the top of his spine and an extra vertebra at C7 & T1. He has an appointment at Scottish Rite on October 2nd. I have never heard of this. Can anyone give me any information? It's just hard to imagine that everything can come to screaching hault in just a matter of minute:confused:s. He is just devistated that he can't play sports or anything. Thanks for any help anyone can give me.

[Pooka1]

I'm sorry you got that bad news.

Don't despair. You'll soon be talking with a pediatric scoliosis expert at Scottish Rite. S/he may have a different opinion about what's safe and what isn't given your son's condition.

It might be that once your son's spine is stabilized, he can go back to sports, I don't know.

I do know that kids can return to almost all sports after fusion. For example, my daughter will soon come off restrictions from her surgery and her surgeon did not rule out contact sports as I recall. The only thing he suggested against was bungie jumping.

[mariaf]

Hi Tracie,

I agree with Sharon that it is jumping the gun a bit to assume your son will never play sports again. Often a GP (or in this case an ER doctor) doesn't know all that much about scoliosis and related issues. I would not assume anything for certain until you see the pediatric ortho at Scottish Rite (which by the way has a very good reputation).

Best of luck and please keep us posted.

[Carmell]

Tracie,

Big hugs to you. I know how hard it is to hear a huge diagnosis like this. However, playing football was probably a GOOD thing. It allowed you to discover this before any serious injury happened. I agree with the others... don't stress over the "no sports ever again" comment. That's too blunt and broad. Depending on the stability of the spine in that area, and everything else that goes along with this, and any other medical issue he may have going on, he will likely be able to play most sports. Full contact sports may be out (too much risk to the cervical spine). But, don't worry until you speak with the pediatric orthopedic surgeons about his situation specifically. Ask lots of questions. You need to understand as much as possible about his situation. Deep breaths... Lots of them... Hang in there for a couple of weeks. You're doing great. Let us know if you have any other questions.

[Tracie]

I just wanted to say thank you so much for everyones replies. Yes, I told Levi it was a good thing that we caught it now instead of him playing sports and getting hurt in the process. Atleast now we know and they can work on fixing it. I found it odd that he has had a physical every year before school and a yearly checkup at our family doctor every year of his life. And a scoliosis check at school each year. Not counting numerous MRI's and CT scans from the time he was about 2 years old. He had really bad headaches from the time he was little and no one could really find out why. Could it be related to the spine problem and the extra vertebra? I guess time will tell. Thanks again.

[Tracie]

Carmell,
I went to your family website and it is amazing. Thanks

[Carmell]

Hi again, Tracie,

You're right - very interesting that they didn't see (or pay attention to) the extra vertebrae when having CTs and MRIs. I would hope that when you meet with the ped. ortho in a couple of weeks, you will discuss the previous medical history - especially the unexplained headaches, and anything else that may be unusual, and even seemingly unrelated. Things like occasional tingling/numbness in his arms, occasional difficulty swallowing, occasional back pain that's unexplained, etc. Any one or all of these could be a red flag for spinal cord conditions like Chiari malformation. When you see the ortho, ask for yet another MRI (unless he's had one in the past year or so) to rule out Chiari or other related conditions.

Did they find anything in the previous MRIs and CT scans? What were they looking for? Were the scan read by a pediatric neurosurgeon (not just a radiologist)? Lots of questions that need to be answered.

Good luck and keep us posted.

[Tracie]

When he was about two he started having the bad headaches and vomiting about every 15 minutes for hours on end. Had MRI done by family doctor. He found a 1.4 cm mass back by the right side of his brain. After a couple of trips to Childrens Hospital and Medical City both in Dallas, they said there were no change in the mass. He was seen by a pediatric neuro surgeon. After a while the vomitting stopped. But there was on occassion still a headache now and then. And they seemed to be when he would maybe wait to long to eat or got stressed over something or not enough rest. About 1 1/2 years ago the headaches were getting pretty bad again. To the point that he would have to go to his room and lay down, turn the lights out and everyone be quite so he could go to sleep. That was the only way he could get rid of them. Family dr ordered another MRI, we went back to the pediatric neuro surgeon at Childrens. He said the mass was the same, no change in it. He thought that it was just like an underveloped sinus cavity. I then took him to a neurologist in McKinney where he diagnosed him with migraines. He has since been taken off of the meds that the neurologist gave him and has not had a headache since he was taken off of the medicine. He hasn't ever had numbness or tingling in his arms. I feel very fortunate that we only had to wait 2 weeks to get into Scottish Rite.

[Tracie]

I picked up Levi's medical reports to take to Scottish Rite with us this week. I'm even a little more confused and scared. It says there is T1 right sided hemivertebra and there is focal right sided scoliosis measuring 73 degrees:eek:. Deformity of the left portion of the C6 and
C7 vertebrae and pedicles, and transverse process. Deformity of T2. There is congenital hemivertebra at T1 with an exaggerated right-sided focal scoliosis, and compensatory left side thoracic scoliosis centerd at T4 measuring 46 degrees. Last page of report says there is congenital deformity in the lower cervical and upper thoracic spine, with exaggerated right convexity scoliosis. The compensatory left convexity upper thoracic scoliosis centered at T4 is 29 degrees. This is greek to me but it scares me greatly..especially with the 73 degree curve.

[Carmell]

Hi Tracie,

First, take some deep breaths... The report is repeating itself several times. What I get out of it is this:

The T1 vertebrae is a hemivertebrae on the right side - meaning the right side is not fully formed.

T2 deformed but not clarified in the report.

C6 & C7 (just above the T1 vert) have pedicles that are malformed (not fully formed)

There is a compensatory curve.

Basically, there are 3-4 vertebrae that are not formed correctly, with a significant curve in that area.

I'd be very interested in hearing what the docs at Scottish Rite say about this. It could be significant, but because he's already 13 yrs old, I'd be asking about the stability of the area - what is the health of the disk space? Is it stable there or is he at higher risk of damage if he's injured? MANY people walk around and never know they have these types of malformations because they don't play full contact sports or do things to have injuries that would warrant xrays or full evaluation of the spine.

These things should have been seen in the CTs and MRIs he's had before. Not sure why no one told you, or these malformations weren't noted. I can't imagine them "missing" this. And, I'd be pushing for an evaluation and another MRI to rule out Chiari. His symptoms he's had all his life are classic Chiari symptoms. If he's had an MRI recently, I'd request it to be reviewed by a PEDIATRIC neurosurgeon, not just reading the radiologist's report. The neurosurgeon needs to review the actual scan. I'd be insisting on a new one, esp after this recent episode.

Good luck next week. I'll be anxious to hear what they tell you.

[Tracie]

Carmell, thanks for helping me understand this. Yes, I too can't understand how all of this was missed. I'm sure I will be told that the previous MRI's and CT Scans were done mainly on his head, trying to find the reason for the headaches. What is Chiari? The last MRI he had done a little over a year ago was sent to the pediatric neurosurgeon at Childrens Medical Center in Dallas when we went there for his last appointment. I'll post again after his doctor visit on Thursday. I hope they will enlighten me alot, I'm not really sure what all questions to ask.

[txmarinemom]

Tracie,

I have a 29 year old ventriculo-peritoneal (VP) shunt for communicating hydrocephalus. Hydrocephalus often produces very similar signs - projectile vomiting, headaches (particularly behind the optic nerves), photosensitivity, lethargy, double vision, and too many others to name - as an undrained ACM syrinx.

While I don't have the hemi-vert issue, I *do* have scoliosis, and am now (as of Feb '08) fused T4-L1.

The reason for telling you *any* of this is I am 40 years old, 7 months post-op, and not forbidden from contact sports ... even at this stage in recovery. I started back to competitive softball several weeks ago (including sliding).

You and Levi hang in there. There is hope, and Scottish Rite in Dallas is a GOOD place to find it. Carmell, as always, offers a stellar suggestion with "breathe".

I wish you both the best.

Best regards,
Pam

[Carmell]

Tracie,

If I had to guess what they were looking for in the years past, it would likely be hydro issues like Pam has. Extra fluid around the brain, basically. Chiari is an anatomical problem where the lower tonsils of the brain (at the base of the brain, sitting on the spinal cord) are pulled into the spinal canal (they aren't supposed to be there). Mild Chiari issues can be ignored or overlooked as migraines, tension headaches, growing pains, etc., when in reality the nerves in that part of the spinal cord are not being allowed to function freely and completely. I would ask specifically if Chiari or Chiari type problems are something you need to have ruled in or out. (BTW, it's pronounced key-ARE-ee.)

You need to make sure the docs know his full history. Anything that you may think is unrelated will be important. You may find that everything he's gone through is all related. Let us know how things go, and if you have any other questions that we can help with.