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View Full Version : I'm new..How long should I wait for surgery?



Nikim13
04-04-2006, 09:55 AM
My daughters curve is at 55 degrees and her rib cage is rotating badly,leaving a large hump on her right shoulder blade. Her present Dr. keeps putting her off for surgery. Am I pushing too much for surgery? I just know my daughter is in pain and she is not getting better .... she had worn a brace for 7/8 years and is now 15 years old. Her Dr took her out of the brace because it was not working, she wore it faithfully all those years 23/7. He has been watching her for over a year,and she continues to get worse. What can I do. I don't want her to have surgery...I also do not want her getting worse . Please help. Niki :(

CurvySAT05
04-04-2006, 10:57 AM
get a second opinion or a third, dont stop until you are satisfied. if her curve has progressed with a brace and has not stopped with age than it will probably keep going. the fact that she has pain is not comforting either. you are the one that lives with your daughter, not the doctor. you have to do what you know is best for her. i waited too long to seek a second opinion for myself. good luck on the search for an answer. i know it can be challenging. keep your spirits up.
mandy

Nikim13
04-04-2006, 11:59 AM
Is there some where that you would suggest? We are willing to go anywhere. I am just confused about what degree of curve is considered surgery level. I am affraid that the rotation of her ribs is irreversible. Does the surgery correct any of that or just the spine itself. I appreciate you taking the time to talk to me this is all very scary. I am checking into Dr. Richard McCarthy in Little Rock Arkansas. Do you know anything about him?

bbest
04-04-2006, 12:30 PM
Niki -

I am a mom as well and after reading your post, felt an overwhelming urge to reply. A progressive curve over 50* and pain are both indications for surgery. Your said your daughter has worn her brace faithfully for 7-8 years and her curve continued to progress. As a mother, I would discuss other options with your daughter. Is the doctor she is currently seeing an orthopedist or a family practioner? Does he specialize in the treatment of scoliosis?
Please seek another opinion. I know you don't want her to have to endure a major operation, but it may be in her best interest. I wish you the best of luck and will keep you both in my prayers.

Brandi

Carmell
04-04-2006, 12:31 PM
I agree. Get another opinion. You may not have to travel too far. There are good adolescent orthopedic surgeons in most states. Where do you live? If you need personal recommendations, let us know your geographical area and we'll be happy to recommend someone. Also, please check out the SRS website to locate a scoliosis specialist from that list. http://www.srs.org/directory/directory.asp

I would also suggest you ask lots of questions. Ask these specific questions about the rib rotation and the surgeons plans to resolve the issues. You want to make sure whatever surgery you decide on, is done correctly the first time.

Keep us posted. Good luck.

Nikim13
04-04-2006, 01:16 PM
Thank you so much for all of your concern. My daughter has been going to the Shriners Hospital in Lexington Kentucky since she was in second grade, and a few months ago we got a second oppinion in Morgantown WV with Dr Eric Jones. We pretty much got brushed off there. He was recomended by my daughters PCP. We live in Washington, WV. My daughters Dr. @ Shriners told us he did not feel she needed surgery, and that the hump on her back would not ever go away even with surgery. That she would be better off leaving her back the way it is and just watch it. Everytime he tells us a different degree of curvature for surgery. 47, then she was at 47 then he told us 50 degrees, then she got to 50 and now he is saying closer to 60. :( I am just so upset this was let go as long as it has. I wish I would have done more research before now and not just listened to one Dr. I know that we go through things for a reason. Thanks for your prayers.

flowerpower
04-04-2006, 01:35 PM
Hi,

From what I was told by my son's dr., when the curve reaches about 49 is when surgery is considered;he prefers to do surgery before the curve reaches 60 deg. because the risk of complications increases the higher the curve measurement, and of course the correction is much better. The rotation is usually corrected by about 50% although the rib hump may be corrected more with a thoracoplasty (removing rib(s)).

I hope you are able to seek another opinion ASAP. Be sure the dr. you see is an pediatric orthopaedic surgeon who specializes in scoliosis. Good luck to you, keep us posted. Take care,

Renee

Carmell
04-04-2006, 03:00 PM
Hi again,

Sounds like you need to find someone who will explain the details of your daughter's spine issues with you. Has your daughter had a spine MRI to make sure there are no spinal cord issues that would contribute to a progressive curve? Sometimes they find hidden issues that need to be taken care of. Especially if she's having back pain that is not being well treated with OTC meds. Just a thought.

Also, since she's already in the Shriners system, I would suggest going to a different Shriners hospital. A place that has better communication skills. Shriners in Philly is a great place.

Good luck searching!

ScoliGal
04-04-2006, 05:05 PM
In my opinion, if theres pain go ahead with the surgery. I have a 40 degree curve, and i get a lot of pain....i dont have a humb....but i have pain every day, and im getting surgery in two months,,,yay...i am so excited!

Breeze
04-04-2006, 05:35 PM
Niki,
My daughter has a similar curve 52 degrees along with a rib hump. She is having Surgery this week, a fusion T-3 to T-12 & a Thoracoplasty to remove her rib hump. Pray all goes well. Feel free to ask me questions regarding her procedure. Her surgery will be at Cincinnati Children's.
Kate

CurvySAT05
04-05-2006, 12:24 AM
I had a posterior spinal fusion with thorocoplasty when I was 17. My doctor said before my srugery that my curves were about 45 degrees, but recently he said he thinks they were closer to 50. I had a big rib hump, lots of pain and was starting to have difficulty breathing because I was asthmatic to begin with. If the doctor keeps changing his mind about the degree he wants to do surgery at that would sound to me like he just doesnt want to do surgery. I would DEFINATLY go to get a second opinion. Or, in your case now, a third. The doctor that did my surgery was my second opinion because the first one would not admit that my curve was getting worse eventhough I had a visible rib hump and my right shoulder was almost next to my ear. He tried to tell me it was all in my head. I brushed him off and havent seen him since. Sad to say I saw him for nearly two years, all the while allowing myself to suffer. Get help for your daughter. The sooner the better. If you waited 7-8 years in the brace with progression you know that there is just a matter of time out of the brace with progression before surgery is warranted and you want to find the right surgeon for the job before then. There is still hope for your daughter. Good luck with the search. Let us know if we can be of any assistance. Look at the SRS website, there are lots of great doctors there.
Mandy

Nikim13
04-05-2006, 08:18 AM
Kate, (Breeze)
When exactly is your daughters surgery? You are not that far from where we live. How old is your daughter?

Nikim13
04-05-2006, 08:23 AM
Carmell,
My daughter had an MRI when she was in 2nd grade, and nothing was abnormal then. I have called other Shriners Hospitals and they act like since my daughter already is a patient of another Dr. they would rather not change.???
I went on your web site and the story of your son was very inspiring. I also have a 10 yr old son named Brayden.

Nikim13
04-05-2006, 08:26 AM
Mandy (curvysat05)
With your surgery, How did your rib hump look after surgery? Did they do Thoracoplasty?

Nikim13
04-05-2006, 08:30 AM
Wanda (ScoliGal)
I am glad you are excited about your upcoming surgery. My daughter however is scared. What helped you get through the nerves? Where is your surgery going to be?

Carmell
04-05-2006, 12:33 PM
Don't let the people at Shriners (or anywhere else) make you feel like you are bothering them, or that you are purposely trying to disrupt their process. YOU are the parent. YOU need to have 100% confidence in the recommendations from the docs so that YOU can make the most informed choices for your child. I'd call another Shriners again and let them know you would like another opinion, from another ortho at another facility. If they don't like it, ask them why you can't bring your daughter for another opinion. You can tell them that you are uncomfortable with the current recommendation and would like to talk to someone else. I know several (many) kids who started at one Shriners and have traveled far to see another facility. I know it can be done. Good luck with that.

I'm glad to hear the MRI was clear. Good luck with everything! I'll always think of you and your Brayden - very cool!

Breeze
04-05-2006, 09:39 PM
Niki-
My daughter is 15. Her surgery is this Friday, April 7th. Please keep her in your prayers. The stress and anticipation is really tough.
Kate

Nikim13
04-06-2006, 11:30 AM
My daughter also 15, I will definatly pray for her. I will pray for you as well, I know sometimes it is more frightening as a parent to know what your child is going to be going through. What doctor is doing the surgery? Do you know anything about Dr. Wall that practices there? I got a return email from him to call and make an appt. Niki

Breeze
04-06-2006, 01:41 PM
Niki,
Dr. Wall is doing Breanne's surgery. We started with Dr. Crawford 3yrs ago but switched after a year to Dr. Wall. I would suggest making an appointment with him. We've been pleased and have spoken to other parents who have had Dr. Wall as their chil's surgeon. All good feedback. I promise to share more with you later. I'm so busy today. We'll keep you posted with how things go. Thanks for your prayers!

Kate

LeaEvelyn
04-10-2006, 08:27 AM
My son's surgeon considers surgery around 45* to 50*. He also judges when surgery should be schudualed, by how fast the curve is progressing. Once he diagonosed scoliosis, he wanted to see my son every three months, to keep a close eye on his curve, and any progression. He did end up with surgery, by the time we got him into surgery, his curve was about 57*, with a large rib hump. The surgery corrected the rib hump by about half, and his spine was straightened to 13*. He stands so tall and straight, it's just unbelieveable what they can do nowadays.
I hope you have made your daughter another appointment with a different pediatric orthopaedic. By everything you have posted thus far, it sounds like you should. Remember, your the parent, and you know your child better than anyone. If you feel she is in need of surgery, then you should go with your instincts and try to make that possible!!!!
But it is also very important that you find a surgeon whom you can put all your trust into. For there is no harder time in a parent life than the day you have to walk away and leave your child into the hands of the doctors who will be doing such a major surgery on her. Take it from me, my son went through scoliosis surgery twice, and it was so hard, I just wanted to go in there with him, if for no other reason than to just watch over him myself. Trust, trust, trust. It is so very important, believe me.
Good luck in your search.
LeaEvelyn

Cakedec
04-10-2006, 10:56 AM
Dear NcKim13,

I have been to doctors all my life (age 46) with a major double curve and all of them up to last year told me that there was nothing that could be done for it!!! This even for a T65 L65 curve! So there is a major lack of knowledge among medical doctors as to what treatment is actually being done to correct scoliosis.

Finally, last year, after being disabled from working due to pain from it, I INSISTED on going to a scoliosis specialist who told me that YES, I was a candidate for surgery and couldn't believe that I had never been referred for it before.

Please don't be satisfied with this Shriner's dr. who is telling you it doesn't need to be treated. Even as an adult, my curves are increasing one degree per year. In 40 years, without treatment, your daughter's curve may be 90 degrees and she will be disabled and in major pain and almost too old for surgery. So right now is the time for her to get the surgery--while she is still on your insurance and doesn't have the responsibility of a family or supporting herself.

You may have to be assertive with SHriner's about getting a referral to a scoliosis doctor. Make sure it is an orthopedic dr. who specializes in scoliosis surgery or you will get the same run-around.

Good luck,

Deb

Nikim13
04-10-2006, 12:46 PM
My daughter has an appt. May 1st with a Dr that specializes in scoliosis at the Children's hospital in Cincinnati OH. I have been reading alot about other people having pain with scoliosis her present Dr. would always tell my daughter that scoliosis did not cause pain. I would get so upset, why would she lie about something like that. The way her spine is twisted I don't know how she couldn't have pain ...... she is very active. Thanks to everyone I appreciate everyones input. Really this has really been a healing process for me. It is so hard watching my child going through this, and surgery really scares me. I know in my heart it is what she needs.

LeaEvelyn
04-10-2006, 02:36 PM
Congradulations on finding a scoliosis specialist!!! I wish you the best of luck with your appointment in May. Hope it turnes out that you like this doctor!!! Take Care,
LeaEvelyn

ScoliParent
04-15-2006, 05:08 PM
My 14 y.o. daughter just had surgery 9 days ago for a 56 degree curve as well as a rib hump on the right side. We are very pleased with the results and her recovery. I would get a 2nd opinion if I were you. The first surgeon we saw when she was at 33* did not do surgery and sent us to someone that specialized just in pediatrics and scoliosis. She wore a brace for 11 months which did not help. She feel and looks so good. Good luck with your decision.

Nikim13
04-15-2006, 06:14 PM
where was your daughters surgery done?

RitaJo60
12-10-2009, 05:55 PM
I know this is a very old thread (2006). But I had to respond due to reading about you taking your daughter to Morgantown, WV to Dr. Eric Jones.

I took my son there about 4-5 years ago when his peds doctor noticed his scolosis. It was 11 percent then. I loved Dr. Jones. He explained to my son everything about scolosis and gave him a book of info. He told him IF his scolosis ever got bad, which he said in boys it rarely does, then there was braces, surgery, etc. He said for now we will just watch it.

I took him back every 6 months. Then, 1 1/2 years ago he took a huge growth spurt and I started noticing his shoulder blade, and rib hump. I called to make our appointment, but Dr. Jones had left!
They told me that since Josh was a child that didn't have any suggestions for me because Dr. Jones went to Michigan and WV had no pediatric ortho doctors at all. I said who is in charge of ortho there?
They told me Dr. John France. His speciality was also scolosis, but didn't do pediatrics. I am a very PERSISTANT person.
They said Dr. France was examining each former patient of Dr. Jones and then he would make a decision as to whether he would see them or be able to help them.

I knew he could help him. He is the best. I mean the man is an awesome surgeon and the head of the Department there at Ruby Memorial.

Finally they said IF I got new scoloie x rays they would make me an appointment.
It will be one year Jan 20 that my then 12 year old seen him. The curve at that time had gone to 44 percent. It was to late for a brace, but my son decided on his own that he would not wear one and he was upfront with Dr. France. I mean totally up front. Dr. France said ok, buddy...we will see you in July and then we will decide about surgery. Josh said ok...he told Josh to do what you want....live your life and I will see ya in 6 months bud.

In July Dr. France told him it was time for the surgery. To pick a time within 4-6 months as to when we wanted to do it. Josh decided November would be the best. That way half the school he would miss would be Thanksgiving and Christmas breaks and really only 3-4 other weeks.

He had his surgery 2 weeks ago. Nov. 23 and just yesterday he said. This is the best thing I ever did.

I laughed because just last week he was bawlin his eyes out because his incesion was itching "to death" as he said. He didn't cry that much about the pain right after surgery as he did with that itching.

The second day was his worst, he took one little crying spell and said "why couldn't I be normal?" It broke my heart but I couldn't let him see me cry. I stood up and said "excuse me young man, exactly WHAT IS normal?" We then discussed many other things and before long the pain pills kicked in and he was find again.

As for Dr. France. The man is awesome. Orginally he said 4 hours for the surgery and 2 1/2 maybe 3 hours he was calling us up to come see our little man. He said he did wondeful. He came out of anesthia better than most adults. We were running down the hallway with him because he is a busy man and had 3 other surgery's to do and he was saying I got him nice and straight and he is a heck of a kid.

He went for his 2 week follow up today. They did high fives and the doctor was amazed at everything Josh can do. He told him if he wanted to go to school a day or 2 a week it was fine. Not to get to physcial and he would see him in a month. Do x rays and then compare the whole shabang from start to finish.

I was so upset when I heard Dr. Jones had left, but now I wonder if things aren't suppose to happen for a reason.
Dr. Jones may have tried to force the brace issue which being a boy that was not going to happen.

Josh lived his life normally. He throws a 16 pound bowling ball and took first place in states. he golfed weekly.

He is anxious to get back to doing both of those.

Maybe Dr.Jones was ment to go somewhere else.

I hope by now you found a great doctor to work with your daughter.