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View Full Version : Scared Mom with 10-Year-Old 49 Curve Impending Surgery



ARN010
04-09-2008, 12:30 AM
I am a little over a week into the knowledge that my 10-year-old daughter will have surgery (rods/fusion) in August. I am going through all the grief stages and will suddenly just start crying. I am really scared and I am getting depressed. Although, I think she will be fine and I've had a couple nice dreams about her this week. Any other parents who could give me support would be great. I'll go read previous posts. Thanks for any help.

mariaf
04-09-2008, 08:43 AM
Hi and Welcome!

You'll find a lot of support and information here. It's natural to be so emotional at a time like this. And it's also great to talk to other parents who have walked in your shoes. My son had a different surgery (not fusion) - he had vertebral stapling but it was scary nonethless, especially the worrying beforehand (some say that's the hardest part).

Can I ask you for some more information? When was your daughter diagnosed? What was her curve then? And perhaps most importantly, have you gotten a second or third opinion? Fusion for a ten-year old should be a last resort. There are other options for the growing child like VEPTR, VBS, etc. Perhaps you've been to several orthos already - that's why I'm just asking for a little more information.

Hopefully, others will respond as well. There are some very informed and helpful folks on this board.

Best of luck and keep us posted.

christine2
04-09-2008, 11:45 AM
Hi and welcome

I agree with Marif that there may be other otions out there to explore. It is amazing how far the treatment for scoliosis has come, but you need to go find the info.

I am also curious about what other info you can give us because you may have already "been there and done that"

KJUNGRL2
04-09-2008, 12:38 PM
Hi and welcome, I ma very new on the board myself. But I have found lots of information here, and great people. I have a 11 year old wit hthe same that is having surgery in May. I know excatly how u feel. I am still going through the emotions. If you woudl like to talk you can PM me anytime!!

Aussiemum
04-09-2008, 04:09 PM
I sent you a PM.

Del
xx

qiling
04-09-2008, 04:39 PM
Hi and welcome,
I kwon how you feel, my daugter diagnoed 6 months ago with T38L20.We live in the SF Bay Are too.We go to Oakland children's,we see Dr.Policy,we just has a x-ray taken,came out was T16T14 in Boston brace. He said he is not worry. you can send me e-mail .

Elaine

ARN010
04-09-2008, 07:06 PM
Amanda was diagnosed at 6 years old with a 26 degree curve. She has been braced ever since. The brace held her curve until Oct. 2007 when it went to 33 degrees, then two weeks ago (March 08) it measured 49 degrees (increasing 1-2 degrees/month). Her Risser sign is 0. Her tanner stage is immature although her first menses was a week ago. We have a good year or two of growth remaining. She is 95 percentile height (5 feet tall now). Her MRI last Saturday came out normal (except for the curve, of course). At this point it is thoracic spine (one lumbar involved but the doctor said this should correct with the fusion) right curve, no rotation. She has a hump forming on her right upper quadrant of her back and a good-sized hip crease on the left.

She is a well-adjusted, gifted, remarkable child. We are so happy she is out of the brace--we celebrated with buying some "skinny" jeans; she's worn nothing but oversized sweat pants for 3.5 years now. At the current rate her curve could go to 60 degrees by August (the most likely month of the procedure).

I am opting for surgery due to its success rate, the cosmetic-body image-self esteem reasons, the fact that we will not have to involve the lumbar spine in the fusion, the fact that her spine is still flexible, and the fact that it will be over before "boys" enter the picture.

Amanda is just fine at this point. She is asking excellent questions. She is seeing Dr. Lincoln at Kaiser Oakland and he is known to be a good surgeon by my boss (a pediatric specialist. Her doctor for the past 3.5 years has been an orthopedist, Dr. Townsend, at Kaiser Union City. Additionally, I have back trouble so my orthopedist has also viewed her images. I will obtain second opinions from Drs. Gamble/Rinsky at Stanford. Although, I suspect it will be the same recommendation as I have already viewed the criteria in Stanford's Clinical Library.

I am emotional. I've been shaky. It's so new to me although I've known it would be an option for years. She's such a sweet special kid and I wish it could be me instead. She has an amazing inner strength and I expect we will get through this. I am wary of other methods (e.g., stapling) after watching the Harborview Spine Symposium (I "Tivo'd" it from a Univ. Wash TV station); I have also read some research and watched a surgery on YouTube (it was actually comforting to see how much structural integrity the spine has and how calm and excellent these particular surgeons in Akron were). I cry on and off and I am going through the grief process. It would be helpful to hear from others about how they dealt with it before, day off, and after surgery....I don't know if I am overreacting or normal or what....yikes...anyhow, thanks so much and sorry for the length of this message.

flowerpower
04-09-2008, 07:21 PM
Hi,

i can't do a lengthy post right now, but will pm you tomorrow. Know that you have lots of support here and you will get the help and support you need to get through this.

Take care,
Renee

sccrm08
04-10-2008, 12:04 AM
ARN010

I just wanted to let you know you are in excellent hands with Dr. Lincoln.
I had my surgery May 23, 2007 at Kaiser Oakland and Dr. Lincoln was the assisting surgeon. The lead surgeon was Dr. Bains. I am very grateful to both of these fine Dr.s and the wonderful correction they were able to get during my surgery. If you have any questions about kaiser Oakland, please feel free to ask.

christine2
04-10-2008, 12:30 AM
To Arn010

When we found out the severity of my daughters curve I was very emotional. I could not sleep, eat or even carry on a normal conversation with out sounding like a basket case. This is something that I still deal with even though we are in a "good place now". You are a normal loving mother!! My daughter is also a "high acheiver" I am amazed on a regular basis at how well she copes.
I can not give you any advice about how to deal with the emotions of surgery. I pray daily that we will never be there. There are a ton of people here that can help you, so keep your head up and you will get thru it. I think think it is harder on us Moms and Dads than the kids.

It sounds as though your daughter will intellectually and emotionally make out just fine.

scoliboymom
04-10-2008, 08:44 AM
Hi
I was numb the first four months after discovering my sons scoliosis and realizing that surgery was the only real option for him. I felt so so very sad for him and I cried a lot too usually at night when my family was asleep. As the surgery date came closer I channeled my energy into making lists, preparing freezer meals and cleaning house. To a large extent it was Patrick who helped me get through this just by his positive attitude towards it all. We spent hours talking and it created a very special bond between us. I still have that bond today a year later.
Surprisingly the time just before the surgery I became quite calm and after surgery, well it was like a million tons of bricks were lifted off me.
Take care
Ramona

Carmell
04-10-2008, 02:40 PM
Hi ARNO10,

Welcome to the board. Having the feelings you express is very normal and necessary for you to grieve and then move on to help your daughter by being 100% committed to her care. I'd be worried about ANY parent that didn't have these feelings. Maybe it doesn't help to know you are in good company with us parents who have been in similar shoes? I hope it helps. Hearing there is any medical condition with your child, regardless of severity, is always hard to hear.

It sounds like you have opinions from several orthos, but these surgeons aren't PEDIATRIC orthos, are they? I would encourage you to get an opinion from a PEDIATRIC orthopedic surgeon who successfully treats juvenile idiopathic scoliosis as a big part of their practice. Scoliosis is rarely an emergent condition. You have time to research and find the best option for her. If fusion surgery is the best option, the timing of the surgery should also be a high priority to consider. Timing to consider potential future growth, lower risk of crankshaft issues above and below the fused portion of the spine, school, family activities, etc.

Surgery on the spine is a HUGE deal. Your spine is the center of your body. Every other part of your body is affected when your spine is manipulated. When done successfully, the surgery can improve the quality of life dramatically. Making sure the surgeon, the recommended procedure and the timing of the surgery is just right for her is the most important part of the process. My son is now 12yrs old. He was born with congenital scoliosis. Had fusion surgery at 11 months old, then had VEPTR (expandable rods) placed at 6yrs old. He has no physical restrictions and lives life to the fullest. Every patient is different. Each has unique needs. I wish you the best in finding the right plan for your daughter. Keep us posted.

ARN010
04-11-2008, 11:15 AM
Thanks everyone for your support. I've been responding to private messaging and I really appreciate you all.

Little Amanda goes to see Grandma this weekend. It will be great for both of them and it will give me some time to give some much needed TLC to my six year old Paul Michael.

I am taking him to a great park. I am going to sit in the sun under a tree and read, and try to do enough breathing that my hands stop shaking....yikes!! Peace, serenity, chocolate, and big hugs!!

Anyhow, I want to say that I am really appreciative of you all. I am so impressed that folks who are post-surgery spend the time to reach out...what a wonderful service you do for us "neurotic patient families"....yikes!

Yesterday, I only cried for a couple minutes. First day it's been less than an hour since I found out her curve was at 49 degrees.

My surgeon has been great. He answers all our questions via e-mail and in detail. I asked about anti-biotics and infection rates and he was very honest and helpful (they're experiencing a 1-2% infection rate). Just another one of my worries.

My daughter met two 20-year-olds this week with excellent post-surgical results. They both had much more severe cases with rotation, double curves, etc. One had an allergy to the metal in the rods/screws and had to go in and have them removed yet she is still doing well and very positive. These scoliosis folks really seem to be a special group in other great ways!

Well, enough delay I must go shower. One question, if anyone lives in the SF Bay Area, would it be appropriate to invite you to come visit when we are on the unit in Oakland in August? Not sure but I want to avail myself of support--I am particularly scared about the day of surgery.

Okay, love and peace to all and thank you again!

Mom37
04-11-2008, 04:40 PM
This is a great place for great support. I have actually met 2 people and stay in touch with many by email from this forum and on the forum! Feel free to PM and if you want to email PM and I'll give it to you. Yes it is scary to find out your child has scoliosis and even more so to find out surgery is needed! My daughter is 14 and had spinal fusion surgery over 6 months ago in August 2007 when she was 13 which was much sooner than we ever expected. We were of course hoping for no surgery, and expecting if so a year or two later or more. She is doing great and her self esteem, and posture improved. Surgery really had a big impact on those things. We never realized what a difference until afterwards. We are very fortunate that we found this forum with such support and were able to have such great doctors to do this surgery. I cannot speak highly enough of Texas Scottish Rite Hospital for Children in all aspects. Great people including the volunteers. My daughter is even going to work there this summer as a junior volunteer due to our great regard for TSRHC. Hang in there! I wanted to add that I too agree with the advice above to do what is right for your child and you, and channel your energy into preparation for what needs to be done. Just jump in there and concentrate on doing what you need to and research all you need. That saying knowledge is power really happened for me. I was much more comfortable, or at ease as you can be knowing what to expect and what others went through. It isn't easy, but with your support to your child, and support for others, it can be a positive outcome.

Writer
04-16-2008, 10:26 PM
Hi ARN010, Welcome to the forum. You'll find moral support here, like the good people above, but also loads of information if you browse around.

I wonder if you've read elsewhere here about the Schroth method? Several forum participants have reported a good outcome with it. This is physiotherapy that in most cases helps avoid surgery, and can achieve positive results even in severe curves of around 100 degrees. It's not a cure, rather an improvement, but spinal fusion isn't a cure, either.

The Schroth method has been standard treatment in Germany for decades, and now some American physiotherapists have opened Schroth clinics. Unfortunately most US/UK orthopedists and pediatricians aren't familiar with it yet and are unaware of how effective it can be.

The German Schroth clinic's former director has a very informative website where you can get an overview plus a great detail of detailed description and photos: http://www.schroth-skoliosebehandlung.de/ (There's an English section.)

Though retired now, Mrs. Lehnert-Schroth still loves to help patients worldwide as far as she can. Her email contact information is on the site. Try writing her about Amanda's case and see what she says. She doesn't charge anything. She could tell you a lot just from seeing one or two digital photos from the back, perhaps also sides, if the spine, shoulders, and hips/pelvis are all easily visible. She practiced for 50 years and treated over 10,000 scoliosis patients, so I doubt anybody has more experience.

Since you have a few months till the scheduled surgery, for another opinion you could also consult a Schroth physiotherapist who's very close to Stanford, in Palo Alto. See www.scoliosispt.net

It's good to know that the surgery option is available if needed, but I tend to agree with mariaf, christine2 and Carmell above. Especially for a 10-year-old I'd think of fusion as the last resort.

ARN010
04-23-2008, 08:44 PM
Looks like my little Amanda may have surgery on 5/21....

Had a second opinion by Dr. Rinsky at Stanford. He was really helpful and encouraging.

Thank you everyone for your comments and suggestions. I'll write again when I am clearer on the date.

ARN010
05-28-2008, 11:28 AM
I am posting under adolescent surgery. I am too tired post-op to post elsewhere. Thanks for all your kinds words. Amanda is almost 1 week post-op and had a pain crisis last night but is better this morning. Love to all!