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View Full Version : Lot's of question...not a lot of answers!!



Tay'sMom
03-29-2006, 09:37 PM
Hi! My name is Courtney and I am the mother of a 13 1/2 year old girl that was diagnosed with Scoliosis in September. At that time, she had a 14 degree curve in her thoracic spine and a 24 degree curve in her lumbar spine. Since she had started her period 2 years prior to that appointment and was what he considered to be skeletally mature, the pediatric orthopaedic surgeon didn't feel that treatment at that time would be necessary, but wanted her to come back in 3 months to check on things. He didn't anticipate any progression in either curve, but indicated that if she reached 28 degrees in her lumbar spine, we would discuss treatment. Again, he didn't think this was a possibility, for the reasons stated above. We went back to see him in February and the x-rays of her back showed a 14 degree progression in her thoracic spine and a 5 degree progression in her lumbar spine. He said that this was extremely uncommon and wanted to do an MRI to rule out cancer or spinal fluid. He indicated that because she was done growing, there really shouldn't have been any progression in her spine, or at least not to the degree that it was. Of course, I started to fear the worst, but had to maintain my composure in front of my child. We had the MRI done on the 17th of March and received the results back last Friday. The nurse indicated that the Dr. didn't see anything on the MRI, but now wanted to do a CT scan to look at her bone marrow.
I have poured through everything I can find on the internet to find out why they would be doing a CT scan to look at her bone marrow or what they could possibly be thinking, but am coming up with nothing.
I guess what I would really like to know is if there is anyone else out there who has experienced this or can shed some light on what might be going on with my child. I am kind of bracing for the worst, so please don't be afraid to be brutally honest about things. I guess at this point, knowing nothing is the worst part, as I would rather know what potentially could be going on with her. She has told me that she has tingling in her feet daily, but thought that was only her feet going to sleep.
Any input, advise, ANYTHING would be nice. Thank you for listening and I apologize if I rambled, but I am alone and don't know exactly where to turn for answers, support, etc.
Thank you again!!
Tay'sMom

milwaukeeshake
03-30-2006, 12:56 AM
My scoliosis was caused by a neurological disease (not saying that her's is too!) so my curves progressed rapidly. It took 3 years to figure my disease out as my MRIs, CT scans, blood work, you name it, it was all normal. I was braced but when I outgrew brace number 2, my curves progessed 50 degrees or so in 9 months. I wasn't done growing but I refused another brace. That's my story! The tingling could be anything... have you mentioned it to the dr?
shannon

Carmell
03-30-2006, 01:03 AM
Hi Tay'sMom,

I would suggest that you find a PEDIATRIC neuroSURGEON (not neurologist) to read the actual MRI scan. Tingling in her feet is a symptom of a possible tethered spinal cord. If the radiologist who read the scan doesn't know much about fatty filum or atypical tethered cords, it could easily be overlooked. Having a tethered spinal cord could explain the progression in the scoliosis. Tethered cord issues often aggrevate scoliosis, sometimes even cause scoliosis. After a tethered cord is released, many times the scoliosis either improves or at least remains stable because the nerve function of the spinal cord is stable.

Does she have changes in her bladder or bowel habits (ie, does she sometimes feel the sensation to go frequently or go long periods inbetween emptying her bladder)? Does she occasionally have pain in her lower back or legs/feet for no apparent reason? Does she occasionally have weakness or does she trip easily? These are often subtle things that you wouldn't think about because of the occasional happenings.

A CT scan will tell them what condition the bones of the spine and chest are in. A CT scan is quicker and less traumatizing than an MRI (IMHO). I think its good that the doc is helping you search to find the cause of the progression. Also remember that there is always a +/- 5 degree margin of error, even when the same person is measuring the xray. Hopefully the measurements were just off a bit.

Good luck and keep us posted.

Carmell
03-30-2006, 01:05 AM
Hi Courtney,

I would suggest that you find a PEDIATRIC neuroSURGEON (not neurologist) to read the actual MRI scan. Tingling in her feet is a symptom of a possible tethered spinal cord. If the radiologist who read the scan doesn't know much about fatty filum or atypical tethered cords, it could easily be overlooked. Having a tethered spinal cord could explain the progression in the scoliosis. Tethered cord issues often aggrevate scoliosis, sometimes even cause scoliosis. After a tethered cord is released, many times the scoliosis either improves or at least remains stable because the nerve function of the spinal cord is stable.

Does she have changes in her bladder or bowel habits (ie, does she sometimes feel the sensation to go frequently or go long periods inbetween emptying her bladder)? Does she occasionally have pain in her lower back or legs/feet for no apparent reason? Does she occasionally have weakness or does she trip easily? These are often subtle things that you wouldn't think about because of the occasional happenings.

A CT scan will tell them what condition the bones of the spine and chest are in. A CT scan is quicker and less traumatizing than an MRI (IMHO). I think its good that the doc is helping you search to find the cause of the progression. Also remember that there is always a +/- 5 degree margin of error, even when the same person is measuring the xray. Hopefully the measurements were just off a bit.

Good luck and keep us posted.

Snoopy
03-30-2006, 07:20 AM
Hi Courtney,

I don't have any answers for you, but everyone else has given you great advice, so I'll just share my daughter's story with you. Jamie was diagnosed at her 12 y.o. check up with a 36* Scoliosis (Aug 2003). She had started her period about 4 months earlier. Jamie had a spinal fusion in Dec. 2004 and at the time she was already skeletally mature. Her Scoliosis had progressed to 46*. Jamie's doctor ordered an MRI and a CAT scan before surgery.

Just wanted to let you know you're not alone. You've found a great support system here. Feel free to e-mail me at Spinesupport05@aol.com.

Mary Lou

Tay'sMom
03-30-2006, 10:47 AM
Thank you all for sharing the information and stories. Being a single mom and trying to deal with this is pretty rough and am so thankful that I have people to talk to about this that can relate to what I am going through!
Taylor's bladder and bowel habits haven't changed; actually, it seems like she always has to go! Especially when we are on long trips in the middle of no where! I am sure many of you can relate to that! However, she does have daily pain in her back and the tingling in her feet she thought was her feet falling asleep. So I will let her Dr. know about this next time we see him.
She doesn't seem to trip easily, but I remember when she went in for her 18 month or 2 year check up with her pediatrician and he asked if she was able to jump. She couldn't and I thought this was a strange question to ask, but looking back, I wonder if this could have meant something back then. Who knows, I certainly don't want to start analyzing and questioning everything that has happened in her life as a possible reason for what she is going through now. I know I have to be strong and face things as they come, good or bad..... He Dr. has been wonderful and I have been told by several Dr.'s in the community that he is the best in the state. He specializes in children with spine deformities; his name is Dr. Shindell. I am still waiting for the order to be sent over to Phoenix Children's for her CT scan and will keep you all posted as things progress (not literally I hope).
Again, I can't thank you all enough for the replies. I don't feel so alone or in the dark now!
Carmell, I am going to talk to her orthopaedic surgeon (Dr. Shindell) about possibly having a pediatric neurosurgeon read her MRI to check for a tethered spinal cord.
Thanks again for everything!
Courtney

lindsay
04-06-2006, 04:30 PM
hi!!

my name is lindsay and im going exactly through what your daughter is. im 15 and have a 45 degree curve. i can totally relate to the having to pee alot thing haha. its not very fun. im having surgery june 19 this summer. i had a MRI b/c my curve jumped from 17 to 45 in 5 months. but they couldnt find anything wrong with the MRI readint so who knows. i guess im just one of the lucky ones?? (not) i know alot about scoliosis, ive done a ton of research on the matter. please email me with any questions you have. i would love to help you. my email is lroyek@yahoo.com. so once again, any questions you have about anything, scoliosis, the surgery, or what symptoms we may have in common, im here to email to!!

Tay'sMom
04-06-2006, 05:49 PM
Thanks Lindsay! :D
I will give my daughter, Taylor, your email address, as I am sure she would like to talk to someone that can relate to what she is going through. She has said over and over that she doesn't want to have surgery (if that's what the outcome of all of this is) because she likes being different and because she won't be able to go riding (her quad) for quite some time after. It sounds sweet now, but I know that later in life she will regret not doing it....so I can only hope that she changes her mind if it comes down to it!! I really hope all goes well for you this June! You will have to keep us posted on how you are doing.

We are going tomorrow to Phoenix Children's to have her CT Scan done. When they called me to schedule it, they told me they were doing a CT Scan of the L4 (I am assuming this would be the 4th vertebrae in her lumbar spine). I asked her if this would be to check her bone marrow as the nurse from her doctor's office indicated; she said no....UGH!! :mad: So now I am as frustrated as ever. I can't seem to get a straight answer from anyone here!

I really hope that this is the last of the tests and then we will go into the Dr. to get some answers. :confused: It's been 2 months now since we have seen the Dr. and I am really getting anxious about what is going on with her. I am just praying that when we do go back in that her curves have not progressed even further, but I am thinking that won't be the case.

Thanks again for everyone's support and sharing your stories! As soon as we hear more, I'll let you all know.

lindsay
04-07-2006, 03:50 PM
at first i was so scared and didnt want surgery. the doctor came in and said okay bad new. in 6 months you over doubled your degree. you'll need surgery. and i was freaking out on the spot. (im sure i looked very calm and collected...not!) i was dreading it. then a lady down the street has scoliosis and is in her mid forties. she has been having back spasms and physical therapy because it has gotton so worse over the years for her. so that was one clue to me that i should have the surgery. to get it over with and not every have to worry again. but what really topped it off was a lady at my moms work said her friend had scoliosis and when she was in labor, while pushing for the baby, her tailbone cracked. they had to do an emergency c-section. this scared me alot. i mean, yeah that probably wouldnt happen to me but it really brought light to what i'd been missing. so its not like im happy for the surgery, but i know that after its done and im through with physical therapy, i'll be glad its all over with. i encourage taylor to make the same decision. once again, im here to email if she or you wants to talk.

lindsay
age - 15
curvature - 45
surgery - june 19 06

Tay'sMom
04-25-2006, 12:08 PM
Update: We received the result from Tay's CT Scan and it appears that she has an "Ill-defined lesion with septa in the mid portion of the body of L4 consistent with hemangioma of bone". :eek: Her Dr. said it wasn't anything to be alarmed about, but I am not so sure that I buy that. We are going back to see her spine Dr. in late May, but in the meantime, I am trying to find a pediatric neurosurgeon for her to go see.
Again, thanks to everyone who replied and offered suggestions and advice. I will keep you all posted on her progress...
Thanks again! :)

Carmell
04-25-2006, 02:34 PM
Good luck with everything. Hopefully a ped. neurosurgeon can answer your questions and help you understand exactly what you are dealing with. Keep us posted.

Tay'sMom
06-14-2006, 12:42 PM
Update: Well at her last appointment on May 26th, her curves were now at 23 degrees (thoracic) and 28 degrees (lumbar), which was great news. :D I know that there is always some variance + or - 5 degrees, but at least the curve didn't show any progression! At this point, the orthopaedic Dr. doesn't want to brace her, just keep checking her every 4 months. I have however noticed that her collar bone and ribs on her left side are not the same as on her right side. Her collar bone is slightly lower on the left side and her ribs are protruding on the left side. Her pediatrician suggested she see a pulmonologist, as she was having some difficulty breathing, so that's our next stop.
Thanks again for all of you that offered suggestions or shared your story! I'll keep you posted on her progress.
Courtney