Note from Joy's son.

[LindaRacine]

OMG, I am just sick. I really like your mom, and just can't believe this all turned out so horrible. When we didn't hear from your mom since right after surgery, I made the assumption that she had one of those remarkable recoveries and was getting on with her life.

As you mentioned in your post, we all need to keep the risks in mind when we're making the decision to have surgery. I don't think we take the risks as seriously as we should. Your mom knew there were big risks, and signed up anyway. The statistics are totally meaningless if you're the one that has the bad outcome.

I am so sorry for you and your entire family, and hope that things start looking better for you all soon.

Regards,
linda

[debbei]

Dear Joy's son,

I am so sorry to hear this news. Please know that your family will be in my thoughts and prayers.

[Singer]

I'm terribly sorry to hear this. Thank you for letting us know, and please continue to keep us updated. I hope and pray that your mom can make a complete recovery.

[Ballet Mom]

Dear Joy's son,

I don't read many of the surgical posts, but just your mom's screen name used to make me happy when I would see her posts. Joyfull. Really beautiful.

I am so sorry to hear what has happened. When I was driving this morning I was thinking of your mom and this music came on. I believe it was meant for you and your mom.

I will be praying for your mom and know that God and his angels are looking over her. God bless your mom and your family.

http://www.youtube.com/watch?v=PrrdLO8fie0

[lray]

To Joy's Family,

I do not know why but just this morning I was thinking of your mom and wondered why she had not posted on the forum since her surgery. I am so sorry and saddened to read of her condition. Your family is in my thoughts and I hope that she will fully recover. There are a lot of people on this forum wishing for the best.

[LynnMarie74]

Wow....how incredibly sad and horrible. Keeping you and your family in my thoughts and prayers......

[JennyRN]

Your family is in my thoughts and prayers. I am truely at a loss for words.

[Doodles]

This is so devastating for all of you. I am so sorry this has happened to Joy. I will keep you all in my prayers. Janet

[jChris]

I am so sorry this has happened to your Mother. You have all been in my thoughts and prayers and I hope she comes back to a normal state.

[ADMoul]

I am just shaken to the core reading this post. I spoke with your mother twice on the phone, first as a pre-op patient myself and then shortly before her surgery. She was so helpful to me in making a decision for surgery and I tried to be positive and encouraging when she was having second thoughts. Now I feel guilty about sharing my experience with her!! I can't even imagine what this has been like for you and your family. Don't give up --there are Powers well beyond our control and comprehension. You are all in my heartfelt prayers.

[Mojo's Mom]

I've done a lot of thinking about this post since it came up, and here is what I want to share, hoping that Joy's sons will read this. I imagine they may have posted partly to see what responses there might be.

I hear the bitterness in the son's posting, the anger. It's what anyone would feel in his shoes.

Those of us in this special, select group of adults with progressive scoliosis are really between a rock and a hard place. The years go by, the curves get worse. Maybe we have symptoms, maybe we don't, but the clock keeps ticking, and with every year that goes by, the curves worsen and we get older. And we know, the older we are, the harder and riskier a surgery will be. We must decide, at some point, whether to take action or let nature take its course. And the course is set, it's not going to change. Joy's curve was not going to get better, or even stay the same.

By some miracle she had no pain with a 90 degree curve, which is astounding...but without the surgery, the future was clear: eventually, pain, perhaps a great deal of it, dangerous lung and heart compression, potentially life threatening conditions at an advanced, but still relatively young age.

At some point, you roll the dice, and the odds are generally pretty good. But you know, you know that someone, somewhere, even the in hands of a great surgeon, is going to fall on the wrong side of the bet. You hope it's not you, but it will be someone.

I feel certain that Joy knew what she faced; her posts from before surgery reflect an optimism but a realism and a justifiable fear. This is as major as orthopedic surgery gets, serious stuff, a huge assault on the body. I think she knew the risks, and her posts reflected a concern for her sons and a desire to protect them. She may not have told them the full extent of the danger she might face.

But what choice did she have, really? Sure, she might have had another 5 or ten years without pain, maybe, and that's a big maybe. More likely she could find herself at an advanced age with horrible pain, with life threatening disfigurement. A 90 degree curve at 58 years old, with average life expectancies pushing ever longer, is not to be taken lightly.The grim future for her without surgery really is a known, the surgery is an unknown, but it offered the best chance of hope for a good quality of life into her later years.
I hope with all my heart that Joy comes through this, but to her sons, please understand, there were no good choices here. You just try to pick the lesser of the evils and hope for the best.

I lost a father due to the unpredictable variables of major surgery...the operation was a success, but the patient died. My heart goes out to Joy's sons, and we will all pray that she comes out the other side to play many more rounds of golf.

[Back-out]

A wonderful post, Stephanie, and thank you for taking the time to share your reasoning with us!

Like everyone I am heartbroken for Joy and her family -- and, frankly, for all of us. As I flew back from my last consult (more later) - very unhappy - I looked down at the clouds and thought of the basic example of cost: benefit decision making everyone on board the plane had made.

The difference is that the odds are much better when we fly in a jet, but OTOH the cost of NOT taking that journey are much less than the cost of not consenting to surgery.

If we don't fly, we can take a bus, car or train.
If we don't have surgery, we can.....?

With all shared pain for Joy's shattered family...She and you are in my thoughts and prayers too. And yes, it's true that people DO recover from so-called vegetative states. In fact, the understanding and treatment of such states is one of the areas of medicine that has most moved forward (by leaps and bounds) in recent years.

Amanda

[Davis]

My thoughts and prayers are with her and your family. I will go to sleep praying for you all this evening.

[gmw]

This is a very sobering post for all of us. Stephanie, you put it into words so well. The decision whether or not to have the surgery is a very difficult one to make. My surgeon told me before the surgery and keeps telling me now, this is a very difficult surgery. I am praying for your mom that she will get past this with time. As someone else posted, talk to her and let her know she is not alone. My heart aches for you and your family. I hope you will post periodically and let us know how she is doing.

[Pooka1]

Stephanie's post especially but also many others really lay the cards out well..

It has been very sobering for me to read these testimonials where people have to make a choice like that. It is obviously extremely difficult. It is a small mercy that there was no choice involved in the surgical decision for both my daughters. There was no second guessing the decision no matter what happened given the cards they were dealt.

Everyone has to play the cards as they lay. And I am convinced everyone makes the right decision for them or their kids at that time. Everyone is just doing the best they can under challenging conditions.