Scoliosis Support Group

Hi, I just had the surgery on Monday August 17th and went home that Friday. Where is her curve? Mine was in the thoracolumbar area and he fused I think T 10 to L3, so I still have 3 vertebrae on the bottom and none of my cervical were affected.
I was able to log roll and sit up on my own, stand and us the walker to go to the bathroom and walk very short distances after a few days. Getting dressed took a little longer, my Mom had gotten me some cute button up shirts that I could get on. It was hard to get shirts over my head for the first couple weeks. I hadn't had to do stairs till I was at school last week, and it was fine just tiring. I went to school the beginning of my 3rd week, so I doubt she'll miss 8. I needed the walker for a little over 2 weeks, mostly outside of the house. I really benefited from walking around at places like the mall, I think it's helped to re-strengthen my muscles, and it was just good to get out of the house.
I don't know about stainless, I have the titanium rods. I did however have an allergic reaction to the surgical tape. I still itch and have bumps. My incision looks really good though, it's healed up and I'm not sure if what i can feel with my fingers is scar tissue or the rods. When I move my muscles feel weird since they're in a new position but I don't think I can feel the hardware.
My surgery was only 3 hours and I did not donate blood. My Dr said he rarely has to do transfusions so he said I didn't need to.
I did read that book, and my parents were glad I made them read it also, it has a lot of information that I didn't even think of asking my Dr about.
I hope this helps, and good luck!

Thanks so much riya, it sounds like you are doing fine. Her curve sounds like yours, I think it is the T4-L2. I just cant keep the figures in my head all I know is that her curve is 54+. Thanks for your info. I am going to keep reading the book. I will let you know how the surgery went.
Kristie

Hi Kristie,
I don't want to add to your confusion but I really want all of you to know some simple facts. There are alternatives to surgery. I understand that every case is different, but there are studies that show surgery is just for cosmetic reasons, and that it really doesn't change your overall health, though it may make your spine look better. If you are having doubts, please take time to check out all the alternatives.
My goal isn't to confuse you or unsettle you, I am a mom and a doctor. My goal is to keep as many kids and adults as healthy and happy as possible. If there is something that can be done with your scoliosis without surgery, it could be a wonderful thing. I currently have a patient who was considering surgery 2 years ago, he was in his late twenties. He was in a lot of pain and was scheduled for an MRI the next week. He came into our office 3 times a week for a month and his pain was gone. His curves were 70 /70. His goal was not to reduce the curves but to keep them from progressing and get rid of the pain. He has achieved those goals.
I wish you all the best and would be happy to help in any way that I can =)

My daughter had surgery 1 yr ago. She was almost 14yrs then.
It was a long day, 9 hours but our surgeon is very maticulous and did a fantastic job. I totally disagree with spine doc saying the studies
say it's only for cosmetic reasons. There are studies proving everything.. good and negative no matter what type of surgery you're having. My daughters curve was 54 degrees. That doesn't just get better or fixed with manipulation by a clinic such as the spinedoc has!
I'm a bit sick of reading the post on here from them.
We had a very good Doctor who has dedicated his entire career to
the spine, diseases and injuries of the spine. I trust him 100% and can't believe he would put anyone through a surgery like this just "because"!

Your daughter will need alot of help for the first few weeks. It's very important to get her to walk a little each day. Sitting will be the most uncomfortable. She'll need some help getting up and down at first, but they bounce back quite quickly. Depending on her progress, she should be able to go back to school in a month or so... that's up to your Doctor. Get the school to give her 2 sets of books, one for home,
one to leave in each class. She won't be allowed to lift much more than 5 lbs for awhile. That helped alot with my daughter.
Be sure to bring lots of pillows for her ride home from the hospital.
Don't let the pain get ahead of her... always keep her pain meds on schedule. When she's feeling better, you'll know to cut back.
EXPECT her to be a little grumpy at first, it's totally normal. I saw such a big difference after 2 weeks. It's hard, no doubt about it.
Most Doctor's use titanium rods now.. stronger and better says my Doctor. You can not feel or see the hardware at all. I give my daughter back rubs still to this day and never feel anything.
She didn't weigh enough to donate her own blood but didn't end up needing it for surgery.

I'd love to help you and answer any questions you may have.
email me at valarieja@yahoo.com ... happy to support and help out. I've been there!!! It's nice to have the support from someone who's been through it. It's very normal to be scared... that's the Mother in us!

Oh yeah, thanks vjs63, I forgot to mention that about pillows, meds and books. I take 2 kinda flat throw pillows to school, one to sit on and one to lean back against. I take a long cylindrical one (about 12in, it came with a bedset) to restaurants and other places where I'll be sitting, I can position it either on my lower back or straight up and down my spine.

I was totally off pain meds after 3 weeks, the acetaminophen that was in the percoset plus the tylenol I switched to started making me nauseous. By then I didn't really need it anyway, I was just kind of worried about whether or not I'd be in pain without it.

I'm borrowing a rolling backpack for my school stuff so I don't have to carry it since I'm on a 5lb restriction. It's tons of help.

Overall,, the surgery wasn't as awful and painful as I expected. People who'd had surgery kept telling me it was going to suck and hurt a lot, but pain-wise the worst thing was having the nurses take the surgical bandage off a few days later. I mostly felt sore, and I was on good pain meds. I had a demerol drip at first then the percoset pills, all of which made me sleepy.

I don't remember a lot of the hospital stuff. I have journal entries if you'd like to read them. I tried to remember as much as I could and write it down. Feel free to message me.

Hi vjs63,

I'm not surprised that your precieved notions and previous experience towards radical spinal fusion surgery for scoliosis as a cure would predispose you to be upset on some levels. It is an understandable reaction to information that contradicts everything you know or believe about the treatment of this condition. Your emotional responce to the topic is reasonable as well.

It is not my intention to condemn the efforts of medical professionals who have dedicated their lives to helping individuals with scoliosis. I would, however, like to add to the current list of options; to educate those who are personally involved with scoliosis about what the research says; and, to empower these individuals to make their own decision regarding their own spine, and their own life.

The peer reviewed literature on the topic is rather definative and the vast majority of ethical orthopedic surgeons openly agree that radical spinal fusion surgery for the treatment of scoliosis is primarily for cosmetic reasons with little to no benefit in terms of improving organic health, now or in the future. Unfortuately, the long-term complications of the procedure may outweigh the benefits. I know you don't want to hear this type of revelation given your daughter's current status, and/or the treatment decision you have made for her, but the results are coming in and they don't support the conclusion of medical necessity for radical spinal fusion surgery for the treatment of Adolescent Idiopathic Scoliosis. I'm sorry if that upsets you, but denial of the truth doesn't change the facts.

The scoliosis program developed by the CLEAR Institute is a very comprehensive program that does utilize a limited amount of spinal manipulation for purposes of mobilizing and reposistioning biomechanical relationships between various functional units in the closed kinetic chain of the spinal unit system, but it is far more than that. The 5 min. intro video on the front page can provide you with a far greater understanding of the program and begin to open your mind to the possibility that scoliosis is far more than just a spine problem. In fact, the current research suggests the spinal curvature is most likely the symptom of an underlying central nervous system dysfuction in the motor cortex.
Feel free to review almost any of my previous posts to consider the expert opinions of many top orthopedic docs whom have reviewed the data and published their conclusions through a peer reviewed process. I think you will eventually come to the same conclusion I have......we need a better way.

ANYWAYS this isn't a conversation about that, it is about what someone who has already decided they want to have the surgery should expect afterward. We are all aware of your opinions "spinedoc" since you've polluted this whole support group with it and posted it on conversations pertaining to unrelated questions.

It's been a long time since I checked in here but looks like it's took a dramatic turn. As with most things everybody is different and their experiences can be different. The age of a person looking at surgery is a big difference. I was 36 when I got brave enough to go for an xray. I almost screamed when I saw the picture of an 85 degree spine I had. I had no idea the spine could twist itself into an S-shape. I have stainless steel rods since the curve was so bad. The surgery was 8 hours and I did have to donate my own blood. I'm glad I did though because I had no infection at all. At my age then and the degree of curve I had made my experience a terrible one. I had to have the surgery because of the rib cage being at a dangerous position. I've had 3 surgery's and still have lots of problems. I wish I had gone on ahead and gotten treatment but I was too afraid to.
I like the rest of you pray for a cure soon. God Bless You, Dereise...

Hi Dereise,

I'm sorry to hear you had (and are having) such a terrible experience. Unfortunately, the research is pretty uniform in it's finding that surgical intervention in younger patients actually coorelates with a worse long-term prognosis. They recommend putting off surgical intervention as long as possible.
Radical spinal fusion for scoliosis doesn't improve pulmonary fuction, cardiac function, for eliminate pain. It is primarily indicated in cases of AIS for cosmetic reasons only.

Dr. Han Weiss, director of the Schroth clinic in Germany, published a highly regarded article in a 2008 edition of Disability and Rehabilitation. The study found "no evidence has been found in terms of prospective controlled studies to support surgical intervention from the medical point of view...... Until such evidence exists, there can be no medical indication for surgery. The indications for surgery are limited for cosmetic reasons in severe cases and only if the parent and family agree with this."

PS: The truth is never pollution

PS: PS: We need a better way.

Hi all,
I understand that you have no appreciation for my comments. That is fine. My whole reason is to be here to support those that wish to try something other than surgery. When I read a post from someone who has scare and helpless in the name they need to know that they don't have to have the surgery.
As far as whether the treatment that I perform in my office works or not, it truly is not fair to condemn unless you have seen our work. You might be surprised. ;)