Page 1 of 2 12 LastLast
Results 1 to 15 of 19

Thread: HELP!! Frustrated and Mad!!

  1. #1
    Join Date
    Jan 2008
    Posts
    30

    Angry HELP!! Frustrated and Mad!!

    Hello out there,
    I have been posting lately about my daughter and her scoli. She is 8 and has a 60 degree curve. Our last appt. showed that it had jumped 10 degrees in 3 months! She has been braced full time since she was 6 and as you know, this has not been easy on her or me. She is now having tingling and spasms in her left leg and lower right back pain. Our doc of 2 years says that we need to keep bracing her until she is around 10 or reaches puberty. I do understand that growth rods are not the way we really would choose to go. I am frustrated because I guess she just has to live with the pain and tingling? Also, the emotional side of wearing the brace has taken its toll on her. She cries, she doesn't like the way she looks, you know how this affects girls self esteem. I am at a loss. I really do not know what to do. I am venting because I am sad and frustrated. Does anyone have any advice for me? I do have another doc appt. as a second opinion Oct. 20th. I called our doc. to discuss the pain and discomfort she is having and he was upset that we were playing phone tag and left me a message saying "my group and I have discussed her case and we will not do surgery on her nor will this hospital". I was just calling to ask about her pain and how to handle her not wanting to wear the brace!! I don't know anymore what to do! Help!!!

  2. #2
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    First... WOW.

    Second, your testimonial is among the diciest I have read since reading scoliosis testimonials.

    It seems to me that there has to be some viable option for when an 8-y.o. with a 60* curve is having pain.

    It seems to me wearing a brace that is NOT alleviating pain and being told to wear it for another 2 years is not looking like an option at this point.

    If you haven't already, I think it's time to get some more opinions.

    I'd like to know under what conditions they will fusion a 60* JIS curve with pain. I understand the issue of crankshaft and possibly a somewhat shortened torso but there has to be some possibility of relief for your daughter much sooner than 2 years form now!

    Have you talked to Betz to see what options are out there?

    Good luck. It's obvious to me you are doing a great job managing this. Press ahead. It can't be that there is no answer.

    sharon
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
    Join Date
    Jan 2008
    Posts
    30
    who is Betz?

  4. #4
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Betz

    It just seems to me he is someone out there doing research on a number of things including JIS treatments and if he doesn't have a good option for you, he will likely know someone who does.

    Now I don't really "know" that but it is my impression.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
    Join Date
    Apr 2006
    Posts
    227
    Just a thought re: brace wearing. I wore a Milwaukee brace for 4 years (along with braces and glasses...mmmhmmm...I was very cool looking - he he). My parents NEVER discussed the brace wearing as being an option. I was allowed 1 hour out of the brace and that was it! As much as I hated it (the brace), I never really did question my parents or doctors. I do know of some parents who let their kids "get away" with not wearing the brace as directed and they'll never know if the scoliosis could have been slowed or corrected. This may sound mean, but if you don't make any issue of her wearing a brace she may? get over it. She'll never like it - and who would? - but it may be better than the alternatives. My surgery only corrected me for a time. I know my doc waited until I reached what he thought was my full height before surgery (yes, I did have surgery...and wow did I feel beautiful afterward...plus I got contacts and braces off...woofta!) It's tough being a parent and doing what you think is best...but stick to your guns. If you doubt your daughter's doctor, search for another. There are many that are reviewed somewhat on this site if you do an inquiry. Best of luck!

    Always Smilin'
    Colleen

    1982 fused T2-L1
    pre op 45 - post op 33 (left thoracic)
    pre op 53 - post op 18 (right thoracic)

    recheck 2006
    right thoracic 57
    lower lumbar 34

    surgical revision April 28,2009
    revision T3-L1; new fusion L1-L4
    unsure of degrees at this point

  6. #6
    Join Date
    Oct 2008
    Posts
    299
    Hi there, Dr. Betz is at Shriner's Hospital in Philadelphia. We have seen him for a consult regarding vertebral body stapling (my daughter is 8). He and his team see a lot of JIS patients. The doctors there do VBS, plus a related procedure for children with higher curves (I have no idea what the upper limit is), as well as the traditional surgeries I think. They can give you solid advice, along with showing you some compassion. His physician's assistant is good about responding to inquiries. Her email is janetcerrone@comcast.net.

    Good luck to you.
    Last edited by mamandcrm; 09-24-2009 at 07:51 PM. Reason: LOTS of typos
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    Hi...

    While there are certainly a lot of complications with growing rods, they're often better than the alternative of trying to keep a kid in a brace until she's in her middle teens. Where are you located Scoliomom?

    --Linda

  8. #8
    Join Date
    Jan 2008
    Posts
    30
    Linda,
    We are located in Central Florida. Thank you for responding...

  9. #9
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by LindaRacine View Post
    Hi...

    While there are certainly a lot of complications with growing rods, they're often better than the alternative of trying to keep a kid in a brace until she's in her middle teens. Where are you located Scoliomom?

    --Linda
    Beyond trying to keep her in the brace, she is in pain. That can't stand for the next two years I would think.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #10
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Hi,

    First, I am so sorry to hear of your daughter's troubles. IMHO you need a new doctor. If nothing else, he is severely lacking in communication skills and empathy. I would run away screaming...

    I wonder if an MRI would be indicated with your daughter's pain and tingling. Those are not normal, and I would personally be demaning answers and more info. To just send you away for two more years of bracing, with a symptomatic and aggressive 60 degree curve, is unbelievable. I am glad you have a second opinion scheduled, hopefully it is with a pediatric scoliosis specialist who sees a lot of JIS patients.

    I would also encourage you to contact Janet Cerrone, PA who works with Dr Betz at Shriners Philadelphia. She is wonderful, Dr Betz is tops (he is my daughter's doc), and they see LOTS of JIS patients. She can be reached by e-mail at janetcerrone@comcast.net .

    Please continue on your quest for better care for your daughter. I find your current doc's opinion very troubling.

    Take care, and please let us know how things are going.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  11. #11
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    Hi...

    I know it's not exactly convenient, but you might want to see Dr. Paul Sponseller in Philadelphia. I think he's the "growing spine" expert closest to you.

    Good luck.

    Regards,
    Linda

  12. #12
    Join Date
    Sep 2005
    Posts
    195
    I'm going to second the thought that an MRI is called for, as well as a second or third opinion. The pain and tingling may be symptoms of other conditions, such as Chiari or a Syrinx. These also cause Scoliosis and make curves progress quickly. If an MRI has already been performed, then they may need to do another to look for a tethered cord. Many times it is very difficult to find underlying causes of these types of conditions.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  13. #13
    Join Date
    Jan 2008
    Posts
    30

    medical records

    Well, I just received my daughter's records with all of her xrays and mri's. As I read through the last 2 years of paperwork, I am saddened to see the progression of this condition on such a young girl. The doc says that there is loss of thoracic kyphosis on the sagittal plane( would someone explain that to me?), 60 degree r. thoracic from T6 to L1. I also read that he at times suggests growth rods and then sometimes says that we would not consider this for her. Her trunk rotation is 18 degrees and has 5 cm decompensated to the right which does represent a shift (explanation please) He has also said that if she reaches 60 then he would recommend growth rods. So.....here we are. She had an myelo-protocol mri today and the doc said that he would contact me via the phone when he gets the results. So my friends, I am looking for any replies, thoughts, questions that you may have. I need your help!

  14. #14
    Join Date
    Mar 2006
    Location
    DFW, TX
    Posts
    159

    Certainly seek as many opinions as you need to

    I am sorry she is having to go through pain. We went to a third opinion before an MRI was recommended and it was needed. It keeps timing out on me after I finish so I am sorry this is being completed in stages. We found our second opinion contradicted our first, and the third confirmed the second but they went a step further to do an MRI and found other issues. My daughter didn't have pain, but I certainly would be concerned too. You sound like you are being your child's advocate and so you will do what is needed to get all the information and make the best decision you can for your daughter. I agree to ask all the questions you can to all and the second opinion was a great idea. Even a third is ok if you need to. We went to Shriners in Erie PA and Scottish Rite in Dallas, TX who both were at no cost. Great options. Hang in there! Take care!
    Last edited by Mom37; 10-13-2009 at 11:14 AM. Reason: add
    Shirley
    Mom to Amanda, 18, Scoliosis T58, previous Spinecor bracing for 9 months before diagnosed with Chiari I CM, and Syringomyelia (Syrinx) SM. CM/SM decompression surgery 12/4/06, Spinal fusion surgery with titanium rods and hardware and full correction 8/1/07 at Texas Scottish Rite Hospital for Children.

    Also mom to Megan, 14, with diagnosis PDD-NOS on the autism spectrum

  15. #15
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Sorry to hear of your situation, Mom. I agree with those who have suggested seeing Dr. Betz and his team at Shriners in Philadelphia. He is THE guy, IMHO, for juvenile scoliosis because he sees so many younger kids with scoliosis. Dr. Betz has been treating my son since he was 5 (he's almost 11 now).

    And yes, the best way to contact him is through his PA, Janet Cerrone. (BTW, she's on vacation this week but normally returns phone calls and emails within 48 hours or less).

    Anyway, as someone mentioned, there are options in this case besides fusion and bracing. The growing rods that Dr. Betz uses are not the traditional rods (which, I agree, can cause problems) but are closer to the VEPTR rods in how and where they are attached. At least that is my understanding. I have found that with Dr. Betz & co., there is no cookie-cutter approach but rather they treat case individually.

    In any event, I would trust him completely. We have good insurance and live in NYC, close to many so-called "top doctors", but I choose to continue to travel to Philadelphia because I truly believe the team there, led by Dr. Betz, are pioneers in the field. Dr. Betz has written countless papers on JIS and related topics and often trains/teaches other surgeons.

    Best of luck to you!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •