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laura1234
@laura1234

Posts: 1
Joined: Jun 25, 2018

Teenager with chronic pain x 4 yrs. Dance injury.

Posted by @laura1234, Mon, Jun 25 6:21am

Our 17yo danced for 12years. She suffered 2 disc herniations from a fall she told me about only quite sometime later. She said it felt like her back was breaking in half. Appointnent with MD made, xray negative. MRI showed herniations. We were referred to an ortho specialist here in Gainesville. She stopped dancing for entire summer. rested, had injections, medication. Reevaluted, slowly began dancing again. Pain returned. Back to ortho specialist. Injections, medication, no dancing. Pain changing and getting worse. Ortho MD referred us to a pediatric specialist in Orlando. He told us she probably had a linear fracture missed on the MRI. Nuclear Bone Scane done in Gainesville. MD from Orlando called with results – showed no linear bone fracture, however, he said she lit up like a Christmas tree in her spine and primarily both hips. He prescribed more rest, physical therapy. Keep in mind this is over 2 years going on. We have continued to see her Ortho MD here. We did everything ordered, suggested, massage, chiropractor, swimming, diet. She is over 17 now. Has been living with this since 13-14. She has high anxiety, bouts of depression, fixates on her future. I am not a dancer, this was all very knew to me. She would lose herself in dance, she was amazing! She actually asked her instructor to help her with a modern dance, done to a song that was about what cancer patients experience and go through, she dedicated it to her Music Teacher from elementary school – who had been diagnosed with brain cancer. She went back to her elementary school and danced as an alumni, guest performer. Her music teacher was there. He was crying, people got goosebumps, there were tears everywhere. It was heavy. Strong willed, knew what she wanted, fearless. Her father and I have been right there for her and supported her. Her dream was to become a Rockette. Right before the injury, she flew to New York, by herself and stayed with her Aunt and Uncle, because she wanted to experience New York, see the Rockettes. She loved it, and in her mind, her path was set. Then the injury. She finished highschool online and is taking 1 or 2 online college course. When she was out from dance she would come in with me to the Preschool to read to the kids and they loved her. She is a quiet, silly, tall, strikingly beautiful girl – that did not bode well in school with the other girls. She was bullied and is very outspoken about this topic. A young man took a very unhealthy interest in her, to a degree that there was meeting with school administrators and school resource officers, they didnt want to see her go, but said they could not guarantee her safety and understood – our only choice to ensure her safety was to pull her out and homeschool her. She has become cynical in regards to our Healthcare System. She is not getting better and the doctors she has seen…we return for follow up, she is not better, they put the same plan of care in place and then no return calls, no follow up. If an activity requires sitting for longer than 2 hours, her back can lock up, she had spasms in her legs, the pain is always worse after an activity. I am able to work from home. I am in tune with how bad her pain is by her behavior. I am in tune with her emotions, depression, anxiety. I listen to her, we talk…ALOT. She has good days and bad days. There is so much more to this I could go on about. She is smart and educated on her condition. She understands she will probably never dance like she used to…..and I believe, for her, not dancing has been worse than the pain. We talk about other interests, that she may not be able to dance like she did, but that doesnt mean she can't dance a different way. For a year she would not talk about dance. She is starting to a little. She knows her dad and I are here for her, to help her, help her with her future. I have never joined a discussion group. As her mom, I cant put my finger on it – there just seems to be an underlying current that something isn't right, is going on, was missed and then of course the worry and concern about her emotional and mental state. Shortly after her injury, her Aunt that she was very close – her aunt could not have children – died in her sleep – she had overdosed. She never had many friends and her circle has gotten smaller since the injury. She has a 14yo brother – they have a very special relationship and are very close – healthy full term baby – at 6 days old he was diagnosed with necrotizing enterocoltis of his transverse colon – 2 major surgeries, colostomy bags and being told – he is not out of the woods for reoccurrence until at least 5 years of age. So, just 1 more part to her story. She is an amazing big sister! He is absolutely fine. No recurrence and is now becoming his own person and not chasing his big sister around. She told me she could not be prouder of her brother because, she sees and knows he us a good person with good friends, but it makes her sad in a way to know it was going to happen and now it is. I dont know what Im looking for, maybe I just needed to write this out. If anyone can relate to this, I suppose that would be helpful. If anyone can point us in a direction, helpful as well also. Thank you so much! I apologize for being a bit all over the place on this, again, have never joined a group discussion.
Yes, we have explored counseling for her. Again, thank you for letting me share.

REPLY

Hi @laura1234 First I want to welcome you to Connect. As a mom of a teenager who loves to dance, sing and act, I read your daughter's story with a heavy heart. Your daughter sounds like an amazing person who has found many ways to express beauty and kindness. It is truly unfair that injury has clipped her wings so to speak.

I'd like to connect you with other members of the Connect community. While you're situations are quite different, I think you might appreciate connecting with @bassman, who posts about his teenage daughter here:
– Pulmonary contusion and ARDS from trauma in teenager. Recovery ?? https://connect.mayoclinic.org/discussion/pulmonary-contusion-and-ards-from-trauma-in-teenager-recovery/

Laura, You said that she continues to be in the care of your local Ortho MD and that you have tried everything such as rest, massage, chiropractor, swimming, diet. How is her pain being managed currently? What rehab is she able to do?

OMG I feel for her and am so sorry to hear she is so young and cannot do the thing she loves. I've had
Chronic hip and back pain for four years or more but the worst it's been happened in January 2014 and continues to this day. I had the worst pain I've ever had in my life on the left side in the groin area through the hip and butt muscles many spasms from the piriformis muscle. The Mri showed tendon tears in the hip flexor area to include gluteus medius, gluteus minimus & at the insertion of the greater trochanter. Also told I have herniated discs (L5,4,3,2 with the most extruded being the L5 S1. I've gotten no help at all from several orthopedic surgeons that told me to go to physical therapy and that I would be better in a year. I did for more that 2 years 3 different PT's. They all said they could help me and they all said after months of trying, that's all they could offer. Seeking a third opinion from an orthopedic surgeon he said to me what do you want, you walked in here? I couldn't believe the way they talk to me, yes I could walk in there from my car to the office but any extra walking and my entire left leg would go Numb until I rested while crying. If they don't see anything to cut on or put in a cast they cannot help you! that is what I have learned. I suffer every day with the same pains along with sciatic nerve sensations into my big toe on my left foot and with sitting or standing too long or walking or riding in a car and especially going up stairs and inclines …all painful and get worse after doing the least little thing because then the next day I pay and pay all day with worse pain.
Get help from someone that specializes in women's hip care I wish I had years ago. I believe there are good facilities in New York City .
Recently a very good physical therapist informed me that it was not my disc causing the trouble but hyper mobile sacroiliac joints and misaligned pubic bones that all work together to help us walk and live normally. I wish someone had told me this year's ago! I would not have gone to orthopedic surgeons or neurosurgeons or all the other physical therapist and pain management doctors that administered drugs with big needles towards my spine near L5S1 which did no good at all &was rather frightening and cost a lot of money!!
I'm on my own again trying to manage the daily pain. The good PT gave me some exercises to try and stabilize my pelvis and he said use ice packs
from now on. He informed me this will be an ongoing issue. I'm very sad about it and try to keep going and not get too depressed which is difficult. I can go in public and look as if nothing is wrong but the pain is terrible and stops or hurts me doing things I enjoy such as gardening
photography, shopping and just sitting at lunch or dinner out with friends! I go to get out and try to enjoy something! Unfortunately later that evening and the next day the hip and groin pain are more excruciating. It's maddening.
I bet the Rockettes have fabulous doctors in New York City. Find out ASAP! Get the care and understanding from specialist in the know. Then let me know!

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