New here

[jachar]

Hello,

I am new here. My 13 year old daughter has been wearing a brace since 3rd grade and we just found out yesterday that her curve increased dramatically during her big growth spurt and is now 52 deg. They are scheduling surgery for October (she is in year round school and that will be her next month off). It actually caught us both off guard, we went in for the appt/xrays expecting it to be just like all the other appts. But her dr. recommended this site so I decided to check out the posts. It looks like there is a lot of helpful information and lots of experience here. I have only read a few posts so far, but the ones I have read, I can relate to.

Anyway, just wanted to introduce myself and I will most likely post questions as the date gets closer.

Thanks!

[mumof5]

Welcome jachar,
It's always a shock when you go for an appointment expecting the same old, and you get told the only option left is surgery. It's hard to come to terms with. But I think you've found a wonderful place to come with questions and any fears that you and any of your family have.
I was talking to our doctor the other day about this forum and said that if we hadn't been posting here he would have seen a lot more of us in the last few weeks, with all the little things that we weren't sure about.
I hope you find what you need here as we did.
Cheryl.

[jachar]

Thanks Cheryl. Yes, it was quite a shock. All of our visits had always gone exactly the same every time. I had no idea her curve had progressed that much. If I suspected it, I would have had my husband come to the appt too.

When the dr. told us, we were upset at first. But I knew deep down it was what needed to happen. I knew from the beginning this was a possibility, but hoped it wouldn't come to this.

I know from reading a few posts that we all have alot of the same concerns. Having surgery so close to the spinal cord makes me nervous, as well as anesthesia, infection, etc etc. But I know you can't think about that. I need to focus on the fact that this is going to fix the problem.

My daughter is handling it very well. She just wants to get in there and get it over with. Her main concern is getting an I.V.!!

I saw in someone's post that after ? days they were climbing stairs. I was wondering how long before they can do that. Will we want to make her bed downstairs for awhile? Also, after surgery, there will be no more braces, right? Was there a cast at first? How long before the worst of the pain goes away? Is there always going to be some sort of pain? Nichole has never had any pain with her Scoliosis, so the pain is hard for me accept.

I think I've probably gone on long enough for now. Thanks Cheryl for your reply. I noticed beside my user name it says junior member. I must have not signed up correctly! Not sure! Oh well.

Thanks again,
Jaci

[Alison]

: The junior member/member/senior member changes with the number of post you made, you start off as a junior member then progress to member than senior member

:For bracing and casting after surgery it seems to really depend on the doctor, the particular situation (surgery). There doesn't seem to be a particular pattern. Some doctors always use braces after surgery for awhile (usually 3 to 6 monthish), very few use casts these days and use the brace instead, wheareas other doctors don't use braces after surgery. I don't think it necessarily has to do with the length of the fusion either. I had a ten vertebrae fusion done in thorasic and I did not have a brace, there was a girl in my year who had a four verterbrae fusion and didn't wear a brace (we did have the same doctor). And there was a girl a couple of years below me who who five vertebrae fused and she wore a brace, and she also had the same doctor (not like a normal brace for her it was more like a large fabric corset) for a couple of months after

:I am now five years on from my surgery, at first I was very sore and stiff, not so much in the actual fusion area but around the fusion in the arms and in the muscles especially, and you feel rather tender. As time goes on the soreness goes away generally (I have found except when I am really tired or tense then I get sore and stiff) and you basically can "forget" most of the time that your spine is fused. Unless people have seen my scar they don't believe me, as there is very little that they do that I can't do as well. But I should mention that my doctor used all bone bank bone, and I know that people who have had bone taken from them ie pelvis, hips etc get pretty sore from this area also (some people reckon that this is more sore than the actual fusion site), also if they have some ribs taken out as well (bits taken out

Alison

[mumof5]

We also live in a 2 storey house. Amber's bedroom was upstairs. We have 2 bedrooms upstairs and 2 down. So we all had a change around. Amber, my youngest and myself all moved downstairs. The other 3 kids went up. Our doctor said no stairs for the first few weeks and I was so worried that she'd fall I wouldn't let her use them anyway. When she did start going upstairs I walked on the bottom side of her so that if she needed extra support I was right there. It got to the point where Amber would sneak away from me and she would tell me off for not letting her do 'stuff'. Then she almost fainted in a shop and she realised then why I was always so close to her all the time.
We were told pretty much from the start that Amber might need surgery. We went to one appointment and he said things are getting close to the need for surgery, start thinking about it. He told us all the ins and outs etc.. He actually didn't give her a very good prognosis if she didn't have the surgery.(If anyone wants details on that send me a private message). He also gave her a 1 in 20 chance of coming out in a wheel chair. It was a terrifying time for us. Then the hospital cancelled 2 surgery dates on us causing a change of doctor and hospital. (going from Newcastle 1/2 hour away to Sydney 2 hours away.)
Amber's surgery went from T4 to L4.
Amber has never worn a brace. I asked the surgeon about the need for one after surgery and he said no it would be solid enough. I think it is mainly surgeons preference.
I posted some about being in a two story and how I coped with being upstairs when she was down and not being comfortable leaving her. I am a single parent, I have 5 kids the youngest is 3. Obviously I couldn't spend every minute with Amber. Someone had to do haousework and look after the kids, cook meals, do washing etc.. I used a baby monitor. It was the best way to give me peace of mind. I knew that if Amber needed me I would hear her and she wouldn't have to try to yell and hope that I heard.
Amber didn't want any needles, so they put her off with a mask then put them all in.
Amber did have pain before the sugery and we were expecting her to be in a lot of pain afterwards. I couldn't understand how they could be in hospital on self administered morphine and be home a week later on paractemol. Amber says now (6 1/2 weeks out) that it is more being uncomfortable rather than pain.
Sorry if this is a bit all over the place. I have a lot going on and am finding it hard to keep a constant train of thought. I just hope I'm making some sort sense.
Cheryl.

[jachar]

From what I understand, she will be having bone taken from her pelvis. I did wonder if that was going to be as painful as the fusion.

A baby monitor is a great idea! Is fainting common?

Nichole is very thin and they did tell her she might feel the hardware if leaning up against a hard surface. (the least of concerns right now, but found that interesting)

I hope they don't postpone surgery on us. She is in year round school and they scheduled the date of surgery for the end of September so that when school is on break in October she won't miss much, if any, school.

I guess there are going to be 2 surgeons doing the surgery together as a team. One of them, we have known since the beginning, the other we just met on Wednesday. The new one is actually the one who broke the news to us. But we really liked him - he sat up on the table with my daughter and leaned up against the wall, telling me with body language that he was there for the duration to answer any questions we had. I really liked that. (of course, you can only think of so many questions right after finding out surgery is needed...the questions come later!)

Single mom of 5! Wow! You do have your hands full, huh?

I'm so glad her dr. recommended this forum.

[Carmell]

Hi and Welcome to the board.

There are many here who can share their experiences and help you understand a little more about what to expect during and after surgery. Remember that each patient is different. Nichole won't be a textbook case (as none of them are). The suggestions are good. You will be able to modify the suggestions to what is best for you and her.

My Braydon is 9yrs old and has had two vertical expandable rods placed in his chest and back to support his spine and keep the right side of his chest open as much as possible. In school, he has a pillow sewn on the back of his chair. His biggest complaint ever is that it hurts to sit against hardback chairs. He is still only 45 pounds, very lean. Nichole will make subtle (and sometimes not so subtle) adjustments in her life, but she shouldn't have pain continuously. This has been my biggest fear for Braydon. So far, so good.

Fainting (in our experience) is more from the fatigue from having major surgery. Some patients have more blood loss that needs to be watched carefully. It takes a while to get back on your feet... most docs suggest 6 weeks recovery before teens go back to school, but again each patient and doc is different.

Have they told you if the surgery will be both anterior and posterior? Or posterior only? Most posterior-only patients recover a bit faster because they didn't have the more invasive anterior approach.

Good luck and feel free to ask questions. It helps to gather information as you go. My best!

[jachar]

Hi Carmell,

When we first found the scoliosis 5 years ago, I surfed the web prior to bracing to learn about braces and I remember you. I remember your posts on a website (this one???I don't remember). I didn't keep up with the websites and such because I guess I was hopeful the brace would do the trick and we wouldn't get to the surgery stage. But when I saw a post from you on this site, I recognized the name and the signature at the bottom (which looks even longer now....or maybe I don't remember completely clearly) You sure have been through a lot!

Nichole is having posterior surgery. The dr. told me that since on her xrays they can see she has finished the major growing spurt and that growth plate is closed then she won't have to have both. From what I gathered, if her curve had progressed to this degree prior to finishing the growth spurt, she might have had to have both. I haven't done too much studying up on the surgical aspect of scoliosis, because like I said, I was hopeful or in denial that it would not get to this point. Now I'm learning all I can. Surgery is Sept 28 so we have some time to beef up our knowledge! I have also encouraged Nichole to read the posts here. When I find something I think would interest her, I call her in to read it. She doesn't ask many questions...yet. I think it is still sinking in. Like I said earlier, at this point her worst fear is getting the IV in.

You sound so knowledgable. Is that from experience alone, or are you in the medical field as well?

[Carmell]

Hi Nichole's mom...

Thanks for your kind words. And, yes, the signature line has grown... ugh. My "knowledge" (I use that word loosely, because I learn so much from other parents, patients and families like you) comes from experience only. Well, I am a certified phlebotomist, so I do have a little tiny bit of "official" medical knowledge. Braydon has rod lengthening surgery every 6 months. That means back surgery twice a year. Not fun, but necessary to keep him very healthy and strong and his body is thriving.

Please tell Nichole not to worry about the IV. You can request that there are no IVs placed until she is sedated (by using a mask). She will wake up with an IV in at least one place, but won't be awake for the procedure. If she's still worried about it, please call the surgery center and make sure you know the procedure that your hospital prefers. IVs and blood draws are a piece of cake - I enjoy the profession ;-)

Thanks for the details about her surgery. Posterior only surgery should be easier for her to recover from. She will have incisional discomfort besides the muscle soreness from being manipulated and "straightened".

If possible, it may be a good idea to have her do abdominal strengthening exercises (even if she's already athletic). Having strong abs will help her muscles support her newly positioned spine. Especially work on the concave side of the curve. I've heard PTs say that the biggest complaint from patients after surgery is their weak/concave side is very sore from near atrophy of muscles from the curve of the spine. Even in very young children like Braydon, there are exercises you can do to help those muscles. Hanging or pullup are great exercises... things like that.

Good luck and thanks for remembering us. We are doing well! My daughter is now 18 and will be finding out if her idiopathic scoliosis has progressed in September. Not sure what's going on there...

My best!

[mumof5]

Amber has only had the one near fainting experience. I think it was from over doing it. I have read on here about others that seem to have had more frequent episodes.
Amber is very thin and lost about 5 or 6 kgs during her hospital stay. she says she can feel 'something' in her back on occasions. Even laying in bed. We were a little concerned about this at first, but posting here helped.
Feeling comfortable with your surgeons is a big bonus because you are not resereved about asking questions. Both Amber's surgeons were wonderful and I found it helps for when you have post-op check ups because you are ok about brining up things that maybe you wouldn't otherwise.
As well as ab exercises our surgeon also suggested pelvic floor exercises (you can never start them too early anyway) it all helps.
Amber never asked many questions. Like you I have shown her relavent things here and sometimes she get on and have a look. With the doctors she left it all up to me.
Amber's incision has healed well and a lot quicker than I thought it would. She has not had any pain around the cut as it has been numb since the surgery. Her cut is 42cms ( 16 1/2 inches) long. Her curves were T 63* and L68* corrected to T 15* and L20*.
Yes I do have my hands full. 2 of my other children have slight curves, which are being monitored. 1 has asthma and croup. 3 have mild skin allergies to soaps etc.. 1 has a ligament problem that has been causing major problems she has also had 2 fits and almost drowned once. I am also going through a court battle with my youngest ones father. After 3 years of not hearing from him he contacted us and demanded the world. I allowed access and 3 days after I told him Amber's surgery date he filed papers with the court. The day after we got home I was served a court summons to be in court 5 days later. Like we needed that right then. ( my eldest childrens father died 10 years ago) On top of that I have just devoped something called 'fleeting' arthritis and am in constant pain ( either that or its Ross River Fever) I get test results next week. My thyroid also doesn't work and that is causing memory problems. Sorry about that, now I've got that out That's my excuse for being a bit 'flaky' and unorganized with my thoughts. I'm so glad that Amber is recovering so well. She is also very proud of her scar, which amazes me.
I think the best thing you can do now is find out as much as you can. Write down a list of questions to ask the doctor, that way if they throw something unexpected at you, you can just read them off without trying to remember.
Keep positive and organise her bedroom now.
Cheryl

[Alison]

Cheryl, I don't think you could ever say that you have a boring life , but try and keep a sense of humour agmost all the chaos, laughing is very helpful :-). Amber is probably very proud of her scar cause it's like a battle scar, and it impresses other people as well (well I find that always a laugh, when people say it's not that long, and then........they see me in bathers (swimmers)

Alison

[mumof5]

Thanks! The worst thing is that's only about half of it. I'm sorry for having a rant here. I was having a bad day and just had to get it out.
We are having a party for Amber's birthday and she has already said she wants to show off her scar.

Nichole, Amber has said about the hip pain that she had. It was more painfull to lay on that side at first. It took a bit of 'adjusting' to find a comfortable position. When we got home we found the best way to do this was to have a sheet folded in half and put across the bed. That way when you need to move a little bit someone can just pull on the sheet and not have to touch you. Sometimes Amber's hips needed to move the smallest amount this way or that. I didn't know where to 'grab' her to move her. I also found after we we were home if she needed to move her shoulders while laying on her back, I knelt on the bed next to her, lent over, grabbed my elbows to lock my arms together she then used my arms like those bar things on the hospital bed. I found this was better than giving her my hand as well as not being good for my back she could slip, she could also let go as quickly or slowly as she needed. Amber only needed this sort of help for the first week or two at home.
There is so much stuff on here about the actual surgery I thought I'd let you know of things for home as I think of them. They may help you they may not. They might give you ideas on other things to do. If you need extra surgery info though just ask.
The baby monitor... I also thought of using a bell as well... for if she wanted me in a hurry and I was being to slow..... But I have a 3 year old who just loved the bell.... I had to hide it.

Carmell, with Braydon having so much surgery, do they keep going through the same place or different areas. What about scar tissue? He must be a mentally tough little kid. Makes you proud.

I am a big believer that we are not given more than we can cope with, and it only makes you stronger. Being in the hospital and reading here makes you realise that there are a lot of people going through tough stuff as well, some more than others, it always makes me think I'm not bad off. Besides if you don't laugh you cry and who has time to feel sorry for themselves.

Does Nichole have any siblings? If so make sure you keep them up to date with what is happening, they'll be worried too.
Cheryl.

[Carmell]

Hi Cheryl,

I enjoy reading your posts. Your comments are great. I especially like the part about siblings and how its so important to let them know what's going on - they worry so much. Keep up the good work!

Yes, the surgeon uses the same incision site for each surgery (so far). Braydon is a very good healer, which helps a lot. Yes, there is scar tissue with each surgery, but so far, it has not caused a problem. Braydon has a thoracotomy incision (around the rib cage) on both sides. The incision from when he was 11 months old has healed very well. It is nearly invisible. With each surgery, I can see that his incisions are getting a bit wider each time and probably having more scar tissue issues, but the surgeon is still very pleased with his healing ability. Knock on wood!

Take care.

[jachar]

Hi there,

Yes, Nichole has a younger brother who will be 8 this year. He is a sweetheart. We talk to him and he knows what is going to happen. He was with us when they told us the news.

I have to make this really short. I just hopped on the internet briefly to check the posts. Will write more later.

Thank you so much for all your suggestions and replies!!

Jaci

[Peggy]

Hi,
Good Luck with your surgery. Everyone has the same worries, i.e., spinal cord worries, anesthesia, infection. Fortunately the risks are very small. Unfortunately the mom thing makes us worry no matter the percentages. I hope this helps you. I was probably the most basket case mom going. I didn't sleep for months. Lost 20 pounds. Thought of every possible scenario going..and it was all for naught! The surgery went great. My daughter was corrected from 60 degrees upper and lower to 12 and 10. She also had two surgeons during her procedure. She spent 6 days in Intensive Care and 9 days total in the hospital. She was on pain medication for 4.5 weeks. After she was home from the hospital she rarely complained of pain. We kept the medication right on schedule and it seemed to keep her comfortable. She is wearing a brace for 6 months. Every surgeon is different. She is required to wear it all day except for sleeping. She has her 3 month appt. next week and he said he will reduce the wearing time. We didn't discover the scoliosis till this past October. Surgery was in April so she never wore a pre-surgery brace. At diagnosis she was already at 42 degrees, 60 degrees thoracic and lumber by surgery date. She is at 10 weeks post-op and feeling great. Except for her limited movement (bending, lifting) you wouldn't know she had the surgery. Well, except for my 419 grey hairs still remaining on my head. The power of an adolescent to recover is remarkable. Keep the faith, say tons of prayers and keep lots of positive thoughts for your daughter and everything will go well. All of us here will keep you in our prayers.