Surgery!!!!for Patrick

[scoliboymom]

Well it's no surprise to us that Patrick needs surgery but I was feeling very calm until today.
Last week we went back to Sick Kids in Toronto and Patrick's curves, as expected, continued to climb from his last x-ray. They now are T79 L43. So the surgeon wants to do the surgery soon.
Today I got a call from his secretary to set up a date. I was totally expecting them to tell me the date but instead she has asked me when we would want to have it done. That's when the calm I have been feeling turned off and on with the not-so-calm anymore. I think the reality of it all has just suddenly hit me like a ton of bricks.
Anyways I now have to decide over the next couple days what works best and I need some help to think rationally. Here are the options.

It can be done as early as end of April -yikes. Or in August. Or anytime in between but likely not mid-June to the end of July because of doctor vacations and other people who are already booked.
Patrick said to me a few days ago he wants it done ASAP.
He does well in school so missing some school is not big but missing 6-8 weeks (this is what the surgeon said) is big in terms of school, I think.
I haven't spoken to the school yet. And with march break starting after today I won't have a chance to talk to them before I need to let SKH know.
I can think of other pros and cons and will dicuss it with DH and DS this evening but I'd appreciate input from others who have or haven't gone down this road yet.

[Sherie]

We are also considering surgery for my daughter and are waiting for them to give us a firm date, either end of June or first of July, but now having second thoughts after some questions have arisen. I had thought if necessary, take her out the last few weeks of school, they would most likely not be booked at that time and your son may be able to take finals early if they are given enough advance notice.

By the way, what levels do they want to fuse? Have they told you how much correction they can get? That is where our questions are, we really like the place we went to but after coming home, realized we weren't given a very specific answer on the amount of correction. I think the general rule is 80% using all pedicle screws.

[scoliboymom]

I'm curious about your reasons for having second thoughts.
They want to fuse T-4 to L-1 but wont know for sure til they are there.His spine is quite stiff as seen from the bending x-rays. And his correction they tell me wont be fantastic. no specific number but i'm sure it wont be anywhere near 80%. Has your daughter had bending x-rays yet? He will have pedicle screws as well.
It's tough to see our kids go through this and reading posts from adults on this site who never had this surgery when they were young makes me realize that we are probably doing the right thing. Are your daughters curves still progressing?
AS for the timing of the surgery I think you are right about a few weeks bebore school ends even though Patrick would prefer to just get it over with sooner.
Keep us posted on your decisions and good luck.
Ramona

[Sherie]

I want to make sure that whoever we go to for surgery, they will try to achieve the most correction without compromising balance and I'm not sure if the place we've chosen is intent on that. They were saying 50% is max and I've already been told we can get more than that, so we may change surgeons depending on this aspect.

It's my understanding that the the more level the lowest instrumented vertebrae is, that will result in more equal mechanical pressure on the disc below it and hopefully, that will help in preventing disc disease in the future. I hope that makes sense the way I explained it.

Yes, my daughter's curves have been steadily progressing, so I don't really expect any miracles. We have given ourselves the option of opting out of surgery the month before it's schedule, but I don't expect that to happen and I'm not sure if this would be the right thing to do anyways.

[tulsamom]

I just wanted to share my daughter's story with you both. Shelby was 12 when she had her spinal fusion surgery June 19, 2006. Her curves were 44T and 64L and she also had severe rotation. Her surgeon told me also to expect about 50% correction as her curves were severe and it is worse when the bottom curve is bigger than the top curve. He really did not want to do surgery on her being only 12 but her health was starting to be compromised so we went ahead. The nurse checked in with us every 30 minutes in the family room and after 4 1/2 hours of surgery the surgeon finally called and said everything went very well. He said her spine was especially stiff for someone her age and he had to work very slow but he was very pleased with her correction. Her measurements after surgery were 10T and 10L!!!!!!! That is so much more than 50%. I think they give you the worst case so you are prepared. I am not saying that this happens with everyone, but there is hope for an awesome correction. Shelby is 9 months post op and she is doing great. She can't wait for her 1 year check up when her restrictions will be lifted and she can play basketball again. We chose to have her surgery during the summer and she went back to school at 8 weeks post op.

Kathy
Daughter Shelby 13 y/o
44T 64L Now 10T 10L
Posterior Spinal Fusion
June 19, 2006

[Alleycat]

I'm with your son, get it done ASAP.... When your talking school the earliest is possible. I had my surgery and missed six wks of 8th grade, but it was the very first six wks of school ( my surgery was on the first day of school) and it was harder trying to control myself, and get used to the new "me". Because in reality your son might not be able to do everything he used to, and if you do the surgery in April than it gives him that summer to heal, figure out his body, and not have all that peer pressure that is involved in high school. I mean you can not avoid it, he will have to go back to school, but at least than he will have had several months to mend instead of just a few weeks. Because trust me, I would have been better if I had not joined in on some pick-up basketball games, or soccer games, but thats school.
Have the surgery in April, your son will be home-schooled for the weeks that he is out. He will be able to have the summer to have fun and heal... and start to pick up some "light activites" like swimming, to get his body back in shape. Than when school comes back around he's the same old kid, and no one will be able to tell.
Best of luck with whatever you decide.
God bless, -Ali K.
18yr old~6 yrs post-op~
3/14/07-rod removal surgery

[scoliboymom]

Yes Ali I am seeing your logic and I know you speak from having been there. I think we are aiming now for early may (as we have to move my other son home from university at the end of April)
Do you mind my asking why you need your rods removed? Does it have something to do with doing too much too early after your last surgery?

And thanks Kathy for sharing your story about your daughter. I am not expecting a great correction for my son so if he gets it it will be bonus. Hope your daughter continues to do well.

Ramona

[flowerpower]

Patrick's Mom,

Just wanted to wish you and Patrick well with your decision to have surgery, it's not an easy one to make. My son had his surgery over Christmas break of his freshman year in high school. While he wasn't quite done with growth, I could see his curves/rotation steadily progressing the 6 months we waited for surgery day. I weighed the situation carefully and concluded (for him) it was best to have surgery done sooner rather than later as the academic load now is so much harder. By last summer, he was halfway healed and able to resume some activities, he even joined marching band (it is more grueling than you would think ). Anyway, he looks great, feels great and has pretty much put this behind him. I feel we made the best decisions for us, and you will do the same Good luck

Renee

[Alleycat]

I dont mind at all. The situation is very complicated but mostly you will find out that because your son has these rods in his back. Most of the time he will have some pretty bad back pain even well after the surgery and healing has past. Its mostly due to the muscles trying to strengthen and form around these structures that were not there before.
Now first off the surgery is NoT because I tried to do to much to early. I did jump right back into my life and dealt with the pain as it came.
Over Winter break (I'm a college freshman) I strained my back. My father is a pharmacist and also have an uncle who is a doctor. Everyone said it was just a pulled muscle and it would go away soon enough. Now, I have visited my scoliosis doctor several times over the years with different back pains, and every time the rods were fine, everything looked great and the pain is just a normal thing for post-op scoliosis patients. So, I heat padded up my back and took some tylanol and just dealt with the pain. Well, about the same time classes start back. The pain went away, and new one started....
This one way worse. The pain was a stabbing pain in my lower back and also slightly milder one in between the sholder blades. Besides that it killed me to walk, or (its hard to explain) "bend" or move, because it would spasm and the spasm itself would shoot pain through me that would catch my breathe and make me cry... By this point my father saw how much pain I was in but we both wanted to just wait for it to go away like it always does. But it didn't, soon the spasms became very frequent and started also causing slight paralysis... like if I was walking and it happened I would stumble and fall because I couldnt move my legs for a second. But the feeling always came back.
I waited three weeks than finally I saw my doctor. Now we took x-rays, and everything came out perfect, the rods still look fine. But the next thing to do is to take an Mri, or do a bone scan or ct scan. Now, Ive had problems with these, since having metal rods in and the doctors also will not do an mri on a back of a scoli patients with metal rods.
So I am having surgery to take my metal rods out so that if that is not the solution to the pain I am in than hopefully we will be able to than proceed in doing the tests necessary to find out. Also my doctor will be able to have a close up look during surgery to see if any thing looks abnormal anyway.
I hope this answers your questions, because my doctor loves that I am active. And this is a win-win situation because now he doesnt have to try a persuade me not to do activities because of my back. I am an active person, and death will be the only thing to keep me from having fun.
Hope that helps. God Bless. -Ali K

[Karen Ocker]

Thoughts about surgery in July

I do not know how it is outside the US but in the US new doctors and residents start new hospital assignments in July. There is a certain amount of normal confusion/disorientation from this transition so the resident docs helping your surgeon/anesthesiologists may be "new"--and less efficient.
I personally would have surgery done, preferably, in June or August.

[scoliboymom]

First off I want to say to Ali good luck with your surgery on the 14th. I do hope this helps to alleviate the pain you have been suffering so that you can happily continue to persue your active lifestyle. There is nothing worse then having pain stop you from doing the things you want to do.
Let us know, when you are up to it how things went and I will keep you in my thoughts.
And Karen I will inquire about resident transition in our hospital. And I can see how it would be confusion for a while until everyone learns the routines.
WE are now hoping the surgery date to be sooner then later (maybe mid May)because thinking that this way he has the entire summer to recover. Come September he should be feeling much more fit to go to school than if he had to return after 6-8 weeks. We should have our date in the next couple days.
Ramona