Need input from people who had surery recently as well as many years ago.

[nickysmom]

HI Everyone,

As my husband and I prepare mentally for our appointment up at NYU on Tuesday my husband thought of a question and we hope someone can give a good explanation if possible.

There is a possibility our son Nick is going to need surgery. For those of you who have had surgery, how was the recovery?


Is there data out there that discusses the quality of life a person has after having had surgery?

We are aware that there have been many medical advances over the years. Our son is so active and we would hate for this to interfere with anything he would like to do as he grows up and becomes an adult.

Rosemarie

P.S. I ment to spell surgery not surery.

[Snoopy]

Rosemarie,

As people reply, you'll find that everyone's surgery, length of fusion and recovery are very different. When I first started posting of my daughter's experience, it seemed almost unimaginable to some that her recovery was so quick especially with such a long fusion. Her recovery isn't that unusual anymore. These kids are recovering faster and faster.

Jamie is 18 y.o. and will be 5 years post-op on December 7th. Jamie is fused from T3-L2 (without screws, which is very unusual). She was in the hospital 6 days, but was supposed to leave on day 5, but I asked that she stay one day longer to make sure her pain was well controlled on oral meds.

Her surgeon gave her permission to return to school half days at about 3 1/2 weeks. She returned around 4 1/2 weeks because of Christmas break. She was in school full time, with a few restrictions, at 6 weeks. Because of not being able to use screws in her back, some of her restrictions lasted for a full year. After that, there was no stopping her from anything!

Jamie is a freshman in college, works part-time, rides our 4-wheeler in the mountains over rough terrain without issues, started swimming competitively after her surgery, hunts with her dad, and does everything other teenagers do. About the only thing she doesn't do is jump on a trampoline. Her doctor HATES them and I've never been a big fan of them either, even before her surery. Her doctor also recommends that she not bungy jump and I think no skydiving, which for her are not an issue.

I asked Jamie a few days after her surgery and many times since then if she regretted having the surgery and her answer has always been NO.

Sorry for the length of this reply. If you have any other questions, feel free to ask.

Mary Lou

[scoliboymom]

As Mary Lou has said everyone is different in their recoveries.

My son's recovery was pretty standard, a week in hospital, then totally off pain meds within 2-3 weeks (can't remember exactly), wrote his final exams for school at 4 weeks, shorter ones were written at school while the longer ones were written at home. He needed a pillow to lean against and would never have brought one to school (not cool!!!)If I recall correctly he was starting to feel bored at around 2 weeks but wasn't ready to go back to school, had teachers come to our home instead.

He has been advised not to do contact sports which were never a big thing for him anyways. Otherwise he is able to do pretty much anything he wants. Skiing, running, badminton, It all works for him. He was climbing trees at a year post op (I had to look the other way).

Regarding quality of life I would give Patrick a 100% and he would too! It's been 2 1/2 years and no regrets!


Ramona

[WNCmom]

My son was fused a year ago at age 13--a very long fusion. At his check-up last week the surgeon said his x-rays look good and his balance is "excellent." He's allowed to do what he wants except tackle football and hockey, riding motorcycles, trampolines, bungee jumping, jumping out of an airplane and jumping on horseback (none of these are an issue for him).

He was off all meds at 2 weeks, and getting bored at home by about then, but not ready to go back to school. I think he went back at 3.5 weeks, but Christmas break followed soon after, so he had an extra few to weeks to rest up. He took a pillow with him to school the first week or two, but now he is able to sit through a 1.5-hr orchestra rehearsal with no difficulty. He has no pain. Last summer he attended a month of camp and then we went on a multi-day backpacking trip over difficult trails and he left me in the dust carrying a 25 lb pack.

He started high school this year and seems quite happy. I'm the one who's had the trouble adjusting--and I have to admit I still worry.

Mary Ellen

[Snoopy]

and I have to admit I still worry.

Mary Ellen

LOL I don't think we moms ever stop worrying about our kids. I have to admit, I do worry more about Jamie (the one who had surgery) than I do Tracy, my younger daughter. :o

Mary Lou

[nickysmom]

My son was fused a year ago at age 13--a very long fusion.

Mary Ellen

Mary Ellen,

What were his curves if you don't mind me asking.

Rosemarie

[gabs mum]

We are a little over a week away from surgery for Gabby. 1st December
We are starting to feel very nervous and question whether we really have made the best decision. After reading these posts(thankyou moms), I once again feel positive and feel like my baby girl will have her life back next year.
I really needed to read these posts.
Gabby was very emotional last night. As a mum you have to find the right thing to say.
I find myself thinking " what do I know?", I am not a psychologist. How do I find the right thing to say to make her feel more positive about this.
So I said to her...
"after this operation, you can't say to anyone anymore that you HAVE scoliosis!!"
"If this isnt the closest thing to a cure, I don't know what is"
Was this right in saying this?
What should we be saying to our children?
We may not get a 100% correction, but she will no longer be suffering from curvature of the spine...right?


For all of you that believe there is a Divine Being, please pray for Gabby.

Regards
Donna

[rachael]

For Nickysmom, just to cover the request for responses for the "many years ago..." part
My fusion was a little over 18 years ago and my recover was similar to what the parents wrote about already and I also agree that the curves and length of fusion will be the biggest factor. My stats are in my sig. I lead a very normal life and able to mountain bike, do triathlons and marathons, snowboard, ski, yoga...pretty much anything except some yoga/dance poses and crack my back:) I've even jumped on a trampoline, although I did not care for the post-op sensation of that. There is very little I can't do now, that I would be able to do without the surgery; and probably have a higher quality of life without much pain.

[rachael]

For Gabs mum...
I still have some curvature of my spine, and actually acquired a bit more after surgery when I hit another growth spurt post op, so I still consider myself to have scoliosis.
I would be careful saying that she would be able to say that after surgery and focus more on how the surgery can help her and how you and her family/friends will love her for who she is and will be there for this difficult challenge.
It helped me to realize that having a straight spine without surgery was not an option so not to consider that and look at the two choices I had...surgery or severe scoliosis.
Be proud of your scoliosis...you never know who else may have it, and how your experiences could help them!

[gabs mum]

You are probably right Rachael.
It is hard to know what to say.
I have done the "Tony Robbins" speech. Be positive, lets be grateful for what this experience will give us etc etc etc.
But at the end of the day who would choose this experience?
Especially for their child.
I have read that alot of members on this forum, after they have the surgery, leave the forum and get on with their lives. Is that because they feel they have been cured?
Even a partial cure?
For me this was just a way of giving her a different outlook on surgery.
She is a very scared girl at the moment. She needs every little bit of encouragement and is totally over the "lets be positive" approach that I have been using.
She is annoyed, angry, frustrated, scared... you name it.
I guess you know having been the same age when you first had your surgery.
Can you remember what you were feeling?
Would love to know, as now being an adult you have a different perspective on it.
Thanks
Regards
Donna.

[Kelsey's Mom]

We are a little over a week away from surgery for Gabby. 1st December
We are starting to feel very nervous and question whether we really have made the best decision. After reading these posts(thankyou moms), I once again feel positive and feel like my baby girl will have her life back next year.

What should we be saying to our children?

For all of you that believe there is a Divine Being, please pray for Gabby.

Regards
Donna

Donna,

Will be praying for Gabby. I can completely relate to you. Kelsey adamantly opposes surgery and says she would rather live with the scoliosis. It is hard when their fear puts them in direct contradiction with what we hope is a professional opinion, isn't it?! We have struggled also with what to say. So far, I've just told her that we have to trust that the doctor's know what is best and this will offer her the best possible life.

I am a strong believer that every circumstance we encounter is an opportunity for growth and is meant to develop something important in us. I don't know where this experience will take Kelsey, but am sure that someday she will be able to use it to help somebody else.

Be strong.

We will see the Shriners January 5. I have no idea what the schedule will be after that. It does help to come to the forum and see others going through the same thing.

I will be praying for Gabby; that she will overcome her fear and recover quickly.

Please keep us posted.

(Kelsey has already told me that she knows she will be cranky and hard to get along with when we get home! Would love to know if your daughter is similar in her personality.)

[nickysmom]

For all of you that believe there is a Divine Being, please pray for Gabby.

Regards
Donna[/QUOTE]

Donna, I do believe in a Divine Being. I have a deep faith in the Lord and know that he loves my son and He will always be by his side.

Over the last two months, I have spent a lot of time in prayer. Praying for a miracle. Be it a brace, surgery, or divine intervention.

I do not have the answers but know that God does. I have also prayed for peace for myself and my husband. Wisdom to be able to make the best decisions for our son and most importantly for him to take away my fear.

I must say, this past week was a lot better than the others.
I am confident that on Tuesday we will be told our options and from there we will take our next step.

We are so fortunate to have each other to lean on during this trying time. Keep on posting and know i will keep you in my prayers.

Blessings,

Rosemarie

[Snoopy]

Donna, I do believe in a Divine Being. I have a deep faith in the Lord and know that he loves my son and He will always be by his side.

Over the last two months, I have spent a lot of time in prayer. Praying for a miracle. Be it a brace, surgery, or divine intervention.

I do not have the answers but know that God does. I have also prayed for peace for myself and my husband. Wisdom to be able to make the best decisions for our son and most importantly for him to take away my fear.

I must say, this past week was a lot better than the others.
I am confident that on Tuesday we will be told our options and from there we will take our next step.

We are so fortunate to have each other to lean on during this trying time. Keep on posting and know i will keep you in my prayers.

Blessings,

Rosemarie

I've always been a strong believer, but had an extremely wonderful experience just before Jamie's surgery.

I had myself so stressed and worried that I was becoming physically ill. I couldn't sleep, I couldn't eat, I was grouchy and irritable, etc. Finally I just decided that I couldn't handle this alone and placed it in His hands. I almost immediately felt a great sense of relief. My physical problems stopped--my stomach was no longer upset, I slept like a baby and most importantly, I felt totally ready to face Jamie's surgery.

Prayer is a powerful thing and I know it has helped my family through this long journey with Scoliosis.

Mary Lou

[Snoopy]

I have read that alot of members on this forum, after they have the surgery, leave the forum and get on with their lives. Is that because they feel they have been cured?

People leave or stay for different reasons. I've been here for five years or more and don't feel the need to leave. I've made some great friends through this forum who helped me through Jamie's journey and I like giving that back to others.

Jamie use to go to the SpineKids forum, but stopped going there a long time ago. She just doesn't need the support. She moved on with her life a long time ago and usually only thinks about her Scoli when I mention she has a follow-up appointment with the surgeon or she chooses Scoliosis for a topic of a speech or paper. We've had an anniversary or two of her surgery go by without either of us thinking about it until someone mentions that date and it jogs our memory.

Mary Lou

[gabs mum]

Thankyou all.

[Pooka1]

Jamie use to go to the SpineKids forum, but stopped going there a long time ago. She just doesn't need the support. She moved on with her life a long time ago and usually only thinks about her Scoli when I mention she has a follow-up appointment with the surgeon or she chooses Scoliosis for a topic of a speech or paper. We've had an anniversary or two of her surgery go by without either of us thinking about it until someone mentions that date and it jogs our memory.


I have two daughters, one fused 20 months ago and one fused 45 days ago.

They both look and feel normal. The recently fused one claims she has no pain as of a few weeks ago. So they are both completely pain free.

They have no restrictions that matter in their lives. (ETA: My recently fused daughter can't do PE for 8 months but that doesn't really matter in her life.)

Nobody talks about scoliosis around this house. There is no need. My daughters certainly have no need. It is no different to them than my appendectomy was to me. You move on.

We have moved on as a family. I come on this forum to provide two testimonials for others.

[Pooka1]

So I said to her...
"after this operation, you can't say to anyone anymore that you HAVE scoliosis!!"
"If this isnt the closest thing to a cure, I don't know what is"
Was this right in saying this?


I can tell you what our surgeon told me of my first daughter. He said her surgery was "one stop shopping," she is not expected to need any more back surgery.

He does not call that a cure but I don't see why not.

[rachael]

She sounds like a typical teenager:)
My method of coping was probably more of a denial when I was 15. I didn't want to watch the surgery on PBS. My concerns were could I take driver's ed with my friend later that summer (which I did) and would I still be able to have kids (which I was too embarassed to ask at that age!). I was pretty indifferent to the whole thing, trying to put on a brave face for everyone, I felt slightly nervous on the inside, prayed a lot privately about it, and was even looking forward to getting some extra attention.
It wasn't presented to me that surgery was an option, more like a requirement, so I just accepted that. I could see your dilema now because there are a variation of opinions out there. The best advice I can give is for you and your daughter to pray (both together and individually), considering all that you have been told from your doctors, and see which way He is leading you and trust your decision.