Newbie

[gillespie]

My daughter was dx with a 45 degree curve in Feb. and told that she would need surgery because of the quick progression. She had been complaining of back and knee pain for some time but she is very active in sports so we assumed it was normal aches and pains. One night she asked me to rub her back and I was quite shocked to see how out of align her shoulders and hips were. I took her to the Family dr the next day and he did an x-ray and called a few days later and told us she had a 18 degree curve and we should keep an eye on it. A few weeks later we took her to our chiro and he would not touch her he suggested we see a specialist as he thought this was probably a lot worse than 18 degree so we did, this was in Nov we did not get in to the specialist at McMaster Sick Kids until Feb and they did another x-ray that told a very different story her curve is actually 45 degree and the spine is starting to rotate causing a humped rib cage. He told us bracing would not help her and she would need surgery. He told me to go home and google it and come back to him with any questions or concern and we would go from there. We were in shock and the poor girl was horrified, she had been on the internet and had a sense what she was in for. She cried all the way home but went back to school to keep her mind off it, she is a very strong girl. Since then I have been researching and talking to everyone I know in the medical community, I worked as a Cardiac tech for 12 years so I have some contacts as well my husband has a very rare immune disease so we see alot of Dr. on a regular basis. This has been a heart renching situation she has been through so much with her dad being sick and she does not get why us and there is no anwser to that. We still have not decided what we are going to do, she wants the surgery asap she just wants it over with. We go back to the surgeon on the 23rd of April to discuss surgery and then a follow up x-ray on May 20, then to see another surgeon on May 21st. I am so confused as to what to do and what is best for her. My husband is not dealing well with this and stress can easily trigger a flare of his wegeners's disease which weighing on our whole family a great deal. I am going to talk to the Dr about putting it off for a year as she goes to highschool in Sept and that can be hard enough without being in pain, not playing sports and as I read sitting on those lovely chairs all day. Sorry for blabbering on but I have found alot of your stories to be very helpful. Any advise would be greatly appreciated. Thanks for listening.
Catherine

[Susie*Bee]

Catherine-- I'd like to welcome you to the forum. This is a really good place to find support and information. I am sorry for your situation-- I know it must be quite a lot to deal with. I can't help you much because I don't have a child with scoliosis... I'm an older adult that just had surgery. But there are a lot of caring parents on this forum who can share their stories and their knowledge with you. Best wishes as you begin exploring your options and make your decisions for your daughter. It must be so difficult on top of your husband's medical problems. Hang in there.

[swimmergirlsmom]

Catherine,
My heart goes out to you and your family. My 14 year old daughter was just diagnosed with scoliosis in Dec 2007 (48 degree thoracic curve), so I completely understand all the emotions and shock you are going through.

After much research and crying and more research, we began a non-surgical treatment approach for Lauren. She started wearing a cheneau-type brace in February and also started doing Schroth physical therapy exercises. We are very pleased with her progress.

If you would like to know more about Lauren's treatment, if you have questions, or if you just want to express feelings you're going through, please feel free to send me a Private Message.

Jackie

[Carmell]

Hi Catherine - Welcome. I know this isn't one of the places you'd like to be, but, its a great place to share experiences. It sounds like you are doing a great job.

How old is your daughter? There are many factors that need to be considered before deciding to have scoliosis surgery. This is not a decision to be made lightly. Recovery from scoliosis (fusion with instrumentation) surgery is often compared to having been hit by a Mack truck. It is potentially brutal. You must have 100% confidence in the surgeon, his/her recommendation, the timing of the surgery, etc. Scoliosis is rarely an emergent condition. You have time to research and find the right plan that works for her, and your family. Get more than one opinion from a PEDIATRIC orthopedic surgeon. You will likely get different answers, but more information that you'll need to make the best decision. Where do you live? I'm sure parents and patients here can recommend someone in your area, if you need.

Good luck and let us know how things go.

[gillespie]

Thank you Carmell. Danielle is 13 years old with a 45 degree curve as of Feb 2008. We live in Hamilton Ontario and fortunately for us there is a wonderful childrens hospital where we live. I have talk to alot of different people in the medical field as well as friends and family and they all agree that talking to more than one surgeon is the thing to do. We are seeing the second in May as well I have a referal in at Sick kids in Toronto. I know that knowledge is power but it certainly can make your head spin. I learned the hard way with my husband that you have to push to get the best medical care and be an advocate for our families, I am getting pretty good with that. It sounds like you know all about that Thank you for your well wishes and I will keep you posted.
Catherine

[gillespie]

Thank you Jackie. Danielle is my daughters name. As I said the surgeon said a brace may slow down the progression but feels she will need the surgery eventually due to the rotation. She is doing physio therapy so I will be interested to see what effect that has had. She will have a follow up xray with this surgeon and the we will see two more for their opinions. It is a lot to take in. We have been through the worst with her dad and if we all could come out of that a little stronger we can do this at least I tell myself that everyday. Thanks again for your well wishes and I will keep you posted.
Catherine

[Diane BCSW]

Gillipse

Sounds like you have a sad and very troubling situation, with your daughter and with her dad, your husband. Way too many decisions to make all at once. My heart just feels for your 13 year old having to go through this, but if she does, she will become a stronger, more mature person,and will have all kinds of life changes that will be changes that will last all her life. I myself didn't get the first bout of scoliosis (and I had kyphosis too) until I was 59 or 60 yrs. So is called Ideopatic Adult Scoliosis. I had developed the big rib hump on my back and was pretty deformed. Like someone else said, that first operation is like a Mack truck. I can't believe I was so helpless but after that the other surgeries have been a breeze. I see my doctor next week to find out my 2-3/4 month progress on the bone growth; He says if he doens't see enough bone growth (by using the BMP2 on the posteria), he might want to go back in and place ore of it on the anerior side

I've been thinking hard about that and if that is the case, Im thinking about turning down another surgery and just see what happens, realizing at the same time, that non-fusion is what causes the rods to break. I am employed and am ready to return to work.... If every goes fine, the 4 mo. recuperation will be up on June 1st

If exercise is an opition with your dauthter, I would explore that. It might hold off her probelms long enough for your husand to become well. But go to a specialist who knows the correct exercises she needs.

Will be anxious to hear how all this turns out. Good Luck

Diane in Dallas

[Neesasmum]

Hi Catherine,

I am sorry to hear about your troubles with both Danielle and your husband. You have come to the right place to discuss a potential spinal fusion as you will receive lots of good advice and excellent support from the people here.

My daughter Annessa had her op in February and I still can't get over the kindness and support I had from the forum which really helped. I felt like you and was shell shocked by it all as it is such a huge decision to make. The first few weeks after the fusion were very hard for Annessa but she is making a good recovery and is now back at school. She is really pleased with her new straight back and is glad now that she did it.

All the best
Anne

[scoliboymom]

Hi Catherine and welcome,

I know too well how overwelmed you feel and its only normal. You've come to the right place as there are a lot of caring people here.
My son, Patrick, had his surgery last May at Sick Kids in Toronto. We also went to Hamilton for a second opinion (Dr Peterson). If you want to PM me feel free, I would be more then happy to talk to you.

Ramona

[flowergardenj]

Hi Catherine

My 15 y.o. son has been seen by a surgeon at Sick Kids in Toronto and we are in the process of preparing ourselves for his surgery. I noticed his back hump in the fall of 06 and asked his paediatrician who had an xray done to confirm scoliosis. When a local orthopaedic surgeon told us he might not even look at our case for a year, we got a second referral to Sickkids. It took 5 months to get an appointment there. That was last July and we were told to return in 6 months for a follow-up xray. During this wait-and-see period, my son's curve progressed from 55 to 66 degrees (we didn't have an accurate reading from the original xray so I don't know the first 8 month progression). We saw the surgeon three weeks later and he said surgery was indicated but it can be done "whenever the patient decides it is right". This is quite an overwhelming decision for a 15yo to make and we have been doing our research as well. This forum has been very helpful and we have received great information from many members and posts.

I wish you all the best as you do your research and make the decision.
In the meantime, I am going to send you a personal message with a couple of questions.

Flowergardenj