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. :)

[jachar]

Thank you Peggy. How old is your daughter? She progressed very quickly! Ya know, I was looking for a way to lose a few pounds, but I could have found a better way! ha My luck, the weight will go up instead of down!

I received a reply to the email I sent Nichole's dr. asking a few questions. It sounds like he does not think Nichole will need a brace afterward.

Your daughter was in the hospital for 9 days total? I was planning on 5 or so. I know it will all depend on the dr. and how things are going.

Thank you for the thoughts and prayers. You are right, pray alot and keep the faith...as well as keep positive. I have really been trying to do that. We are painting her room tonight. (taking a break right now) She picked out the color and even though I thought we'd get a lighter shade, it is turning out real nice. She loves it. It is keeping our minds off things! Next is her brother's room!

Cheryl and Carmell, you must both be very strong. Lots of stuff going on to deal with. My son has epilepsy, which luckily he has only had 2 seizures, both of which were over 2 years ago. He was put on meds, and is controlled - thank goodness - that is SUCH a scary thing to watch. The kind he has is known to be outgrown around puberty. The neurologist told us at his last visit that even though the eeg was still abnormal, since he has been seizure free for 2 years we could do a trial weaning of the meds. We opted not to "wean", but we aren't increasing the dose as he grows and the level decreases in his system. So I guess you could say we are sort of slowly weaning.

I think it was Cheryl who posted that we are only given what we can handle. I believe that too.

[jachar]

Hi again,

I was just reading some posts and have a question. Some of you mentioned taking iron and procrit. Our dr. never mentioned that. Is that something I should be doing, or at least asking about? The only thing our dr. recommended was protein - he said it helped with the healing. Nichole is really thin, so maybe that has something to do with it. But maybe I should be making sure she is getting extra iron too?

Thanks,
Jaci

[Carmell]

Hi Jaci,

Iron is a good idea, unless it upsets her stomach. Sometimes iron supplements are hard on GI systems. If she's able to eat red meat, she should get enough iron and protein in her diet, without needing supplements. Procrit is mostly recommended for adults who's bones don't regenerate as quickly as young people's, but it won't hurt to ask about.

If Nichole is in good health, generally, she shouldn't need to adjust her diet (other than extra calories to add some weight, if possible) before surgery. Try extra calories without extra fat - fatty foods tend to sit in the stomach and make the person eat less because they feel full longer. Braydon is very lean too, so getting the extra calories in him is difficult, at best. Things like Carnation Instant Breakfast added to milk a couple of times a day is a great way to add calories, and its fairly cheap compared to other caloric supplements. She will likely lose weight after surgery because eating is a lower priority. If she's extra thin now, she won't be able to afford to lose much. Good luck!

[jachar]

Hi,

Thanks Carmell. Yes, we are trying to increase her calorie intake. And boost protein.

I scheduled her pre-op last week and found out some news that took me by surprise. When we found out that surgery was now necessary, a different dr. than we had come to know told us. We both liked him. Then the dr. we have known for 5 years came in and talked to us too. He said they work together as a team and do surgeries together and how nice it works out being two of them in there together. I have come to trust this dr over the years and I know he has a good reputation not only in the military world, but in the civilian world as well. Well....I found out that he is being deployed to Iraq for 9 months and won't be here for her surgery on Sept. 28th. The other dr. will be. Which I am sure will be fine, he is the new director at the hospital we will be going to. But I was a little upset that the "known and trusted" one won't be there. Nobody else is really bothered by it and I know this dr. has done these surgeries before. But when it is your baby, you just want everything to be perfect. I was taking comfort in the fact that there was going to be 2 surgeons at once taking care of her. Maybe there still will be someone else in there, I don't know. We go in for pre op toward the end of August. Her pre op is a month before surgery. I thought it might be a little closer to the surgery date, but I guess not.

I can feel the anxiety come on pretty strong some days and not so bad other days. I know nobody at work understands. I work with 3 other people, all of whom are at least 10 years younger than me and only one of them is married with a baby. The other two are single. Plus I've only been there for 6 months, since we moved up here right before Thanksgiving last year. I had worked at my old job for 12 years and BOY do I miss them! They had become like family. (all of our family on both my side and my husband's side live in another state. ) So our support team is not local.

Gee, I'm rambling. Sorry. Thanks for "listening" though!

Jaci

[mumof5]

I had a similiar problem to you in that I had minimal support. All of my concerns came to this forum and it helped me so much, I wish I could just give everyone here a big hug and say thankyou. It makes it harder if you don't have someone to talk to. It's a shame about the surgeon not being able to be there. I am a big believer in everything happening for a reason and that no-one is given more than they can cope with, even if they don't realize it. You don't know how strong you are until things like this happen. Most people without kids don't understand what it is like to have someone that you put before yourself and I have found that people with young babies believe that 'that won't happen to us'. (I used to think that myself until 10 years ago when I was 23 and had 4 kids under 5 and my husband died in front of us.)
It's good that you feel comfortable with the other surgeon and I'm sure your first doctor wouldn't work with the second if he wasn't sure of his abilities. Maybe you could talk to the surgeon about what you are feeling. I felt the same when we found out we had to have a different surgeon. I told the new one how I felt and he was very understanding. We meet him a few weeks before the surgery and the second time was the day of the operation. But I knew that our original doctor highly recommended this guy. I hope this has helped you some. Sorry I tend to ramble a bit as well at times. It does you good to get it out though.
Cheryl.

[jachar]

Hi Guys,

Another question (or 2 or 3!). How big are the rods they put in? Do they vary depending on the size of the curve? How many do they put in?

Also, how much more vulnerable will she be after surgery when it comes to getting hurt - is her risk higher of spinal cord injury if she should ever have an accident involving her back?


Thanks,
Jaci

[bryan]

Depending on the exact instrument to be used the diameter is not much bigger than a pencil and the length will very.

As far as the spine strength after surgery, and complete healing, my doctor explained it to me this way. With fusion of the vertebra, the structure of the rod and the related conective tissue, your spine in that area is much more resisant to failure than your femur (thigh bone).

[jachar]

Hello all,

I am having one of those "stress out" weeks about Nichole's upcoming surgery. We have the pre op next Friday the 27th. My husband is wanting to find out if we can try and move the surgery to someplace closer to where we live, but I don't know if that would be better. Chances are we would not be able to keep the same surgery date. And it probably would not be with the doctors we currently know. I want the date to stay pretty much the same as it is (Sept. 28) because she is in year round school and will have a month off at that time. I guess all we can do is ask and see. But I'm not sure I'm comfortable with changing everything all around. Sure, it would be more convenient to be closer to home. We've lived up here for less than a year so we don't know a whole lot about the hospitals/drs up here. Right now, we drive to San Diego, a little over an hour away. Which isn't that bad.

I have been doing fairly well with keeping my worries at bay, but they are creeping up on me now. I just wish we didn't have to do this. I wish there was some magic wand I could use to make her spine straight! She, however, is still dealing with it very well. She doesn't let me know if she is worried or concerned. She just says she wants to get it over with. She really doesn't like to talk about it. (she is 13)

Well, thanks for "listening". It is nice to be able to voice concerns to people who truly understand.

Thanks,
Jaci

[Alison]

..Gut feeling, go with what you are the most 100 percent comfortable with, who you know and the biggest thing who and where you have the biggest trust.

Answer to spinal strength/vulnerability

Suprisingly, the area where the spine is fused is quite solid and stable (after the 12 month mark), I know that this isn't a nice analogy but its the only one I know; that if you are in a car accident, the fused part is the part that would have the least risk of "breaking". The problems come from directly above and below the fusion because they have to do a bit more "work" then previously post fusion. But these areas can be strengthened through physiotherapy (physical thereapy), excersises etc. So overall yours spine strength pretty comparitve to a "normal" spine.

Number of rods put in
Depends on what's being fused and how its being fused, is often two rods, but can range from one to four.

Even though I'm an scoliosis oldie I think forums such as these are very good. You can find people who are going through similar situations (you can often feel very isolated) and can share advice, support and a venting post. As well the oldies, who have been there, done that and got the scar to prove it and who know lots of strange bits and pieces on what they experienced, what they learnt.

:-) Alison

[Carmell]

Jaci - it is very normal for you to have feelings of uncertainty, and even wonder if you are making the right decision, especially this close to pre-op and surgery time. Surgery anytime is a frightening thought and should never be taken lightly. As long as you have planned well, and discussed your options, and have 100% confidence in the surgeon, you and your daughter should be fine.

About traveling for surgery - I agree that you need to go with your gut feeling. Our "local" hospital is 2 hours away. We travel 2 hours one-way for Braydon's surgeries. We have also traveled from Utah to San Antonio Texas for back surgery (twice). It's not impossible, in fact, very do-able if you have to.

Just remember you have support here. You are not alone. There are many who have walked in similar shoes. You will do great. Take a few minutes each day for YOU - be it meditation, or a quiet bath, or to read a book... whatever. Good luck and keep us posted.

[jachar]

Thank you so much for the kind words. I really appreciate the support.

We are going to stick with the original plans and keep everything the way it is. I feel that is best. Changing things at this point would make it even more stressful!! I'm trying not to think about it constantly!! I'm not always successful...

Thanks again!

Jaci

[mamakay]

heelo again,
I would like you to know Jachar I feel very much like you have explained here about yourself. It is good you have gotten your surgery date. They told us more xrays at least 6wks before and blood donations 4 wks before so times is ticking!!!
Sometimes I feel like I am the weakest person for feeling so sad and the anxiety about the surgery and what my baby girl will have to endure.
All ready she has been thru more than most considering her age.
(not including Carmel's history.)
She had been in hospital twice already for dehydraation then hepititas, ambulance in June for allergic reaction!!!Not to mention her dental problems.
I feel like something might have been missing from her diet when she was younger.
Now this d@##$ scoliosis!! I feel frustrated as I suppose most of us mother's and I cannot take lightly the "ease" of surgery that my family thinks!! She is tall, thin and I guess this is good.. stubborn. I wish I was as strong as my children sometime.
There! I feel a litttle better bc I know someone out there feels like me. I hope..

I am so gratefull for everyone here coming back to support those of us who are not post surgery yet. We need you.
I know you all are tired and ready to get on with other things in life, but I never realized how informative and close I feel to so many people here.
Monday we will go to Houston for a 3rd opinion. As I sit and look at the envelope of xrays across the room here I am praying for strength not to cry and for "everyone" to be okay.

Thanks again for listening and I'll be back to let ya'll know the latest. Even though we already have made up our minds on alot of things I feel 2or 3 opinions should be considered.
bye

[jachar]

Mamakay,

I know what you mean! Nichole is tall, thin and stubborn AND she has had her share of medical history as well...asthma, hernias, adenoidectomy, much dental work, ear tubes. I have often wondered, as you have mentioned, if there was something missing in her diet in the early years. I find myself watching for similarities among other scoliosis patients to try to figure it out, even though "idiopathic" scoliosis is of unknown origin.

I also deal with some who really take this "lightly" compared to others. (my work being one of them) To me it is a very big deal. Of course, I work with mostly younger 20 somethings who are single with no kids yet (except one with a baby). They have no comprehension of what it might be like. So I try not to talk about it too much there. It only frustrates me. That is why this forum is so helpful!! All of our family lives elsewhere-mostly Kansas-so not a whole lot of "local" support.

[Carmell]

Hi all...

I just wanted to remind ALL the parents out there that scoliosis and any related issues are VERY serious! This is YOUR child, afterall. You wish only the best for your child(ren) and when that doesn't happen, you grieve for the loss of what may have been. It is normal and healthy to have these emotions. No one can tell you how you should feel, not even me. I'm telling you that your feelings are valid and that you have a right to feel however you need, in order to give your child the best care possible. If you didn't care about your child's health, you wouldn't be so passionate about how you feel and feeling that other people (even well-intended family members) are dismissing the severity of the condition or situation. Scoliosis is rarely an emergency situation, but that doesn't mean there should never been treatment, nor should the condition be taken lightly. Ever. Your feelings as a parent are real. Places like this messageboard are theraputic - it allows us to share intimate feelings that only another parent of a child with similar issues can understand. We NEED to feel vaildated. Hopefully we can continue to share with each other.

Done with my soapbox... ;)

[mamakay]

Carmell,
You are so right.
Thank you for putting this in the right perspective for me.
I will try and use your advice when I start to stumble.
... mamakay

[jachar]

Hello again,

Does anyone know if it is more common to use stainless steel rods or titanium rods? We had our pre op visit on Friday and were told they are using stainless steel. I thought they were using titanium. Does anyone know the differences between the two in regards to use in this surgery? This dr. says he prefers stainless steel.

Also, (just venting here) I found out yesterday that we have to go back in for more xrays because the tech did the ones on Friday wrong. Ugh! Apparently he was supposed to call the dr. in when he was ready to take the films so the dr. could help in placement for bending xrays. I told the tech that was what the dr wanted and I even pointed it out on the paperwork where it said Call dr when ready, bending xrays. The tech told me that just meant call when the films were ready and that they didn't need help with placement. I thought he was wrong, but wondered if maybe I had misunderstood what the dr had said. Nope, sure enough I was right and he was wrong. That really makes me mad. This tech's mistake now causes us to take another day off work and school and make another trip down there, not to mention even more xray exposure to my daughter. I am sure it will be fine, but when things like this start to happen, it makes it hard to feel confident about the surgery. You start to question their competence.

Well, just wanted to find out about the steel vs titanium issue. Thanks!
Jaci

[Carmell]

Hi Jaci,

Sorry to hear about the tech's mess up. I know how frustrating that is. Ugh.

Both stainless steel and titanium are used routinely in scoliosis surgery. My son's rods are 100% titanium, which means he does NOT set off the metal detectors at the airport or other security areas. Titanium is usually better tolerate by the body - the body doesn't reject titanium as often. Also, titanium is lighter weight than stainless. Several benefits of titanium.

If you are still concerned, please ask your ortho to re-explain the benefits of stainless (besides HIS preference). Make sure its the right choice for your daughter.

Good luck!

[Bill's mom]

Jaci,

Our ortho told us that the patient cannot ever have an MRI after the surgery if they have stainless rods. You might want to ask your doctor about that.

Susan

[DaveWolpert]

There aren't any important differences betweens using stainless steel versus titanium. Steel hardware does not set off metal detectors, either, and although titanium is a bit lighter, the patient would never notice the difference in weight. Also, a small percentage of the population has an adverse reaction to nickel, a component of stainless steel, but this will only affect the patient if the hardware is manufactured incorrectly and "sheds" nickel particles, which is very rare.

The biggest difference between steel and titanium is cost. Titanium is significantly more expensive. Many surgeons thus use steel to control costs, or because some insurance companies will not pay for titanium.

In short, I wouldn't worry about your surgeon's decision on which type of hardware to use.

Dave

[mumof5]

We went through Australia's public health system for Amber's surgery. We didn't have to pay a cent. We were not even told about using titanium. I had gathered by reading here that it would have been more expensive that is why the free system doesn,t offer it.
I would like to add though that Amber does set off metal detectors. It was in a court house and rather embarrassed her.
Cheryl.

[Karen Ocker]

I have stainless steel and have set off metal detectors once. I think, because so many people around the world have various implants of all sorts, the security people have re-set the sensitivity. I have flown 4 times since my surgery 23 months ago. It only went off once.

Karen

[Theresa]

I have just flown to Arizona and Conneticut from Texas and have set all the machines off. When they pass the wand over me it went crazy when they got to my back. I also think that due to all the security measures the sensitivity is higher now.

[DaveWolpert]

Whether or not your steel instrumentation sets off detectors has a lot to do with how deep it is placed, and where on your spine it is located. Your spine is "deeper" into your body in your lower back, so instrumentation there is covered by a lot of tissue that blocks the scans of most metal detectors. The vertebrae in your upper back are much closer to the skin and thus instrumentation placed there is less protected. Children and small-framed or very thin adults generally have less tissue to block the scans, too.

Also, bone blocks the metal scans well. Pedicle screws, which are placed deep into the vertebrae, may block the scans better than hooks. How much bone grafting material is placed over your rods may play a role, too.

I have all pedicle screws, from T6 to L1. I've been through several airports and never set off a detector, even when the wand is placed flat against my back.

Dave

[LindaRacine]

Hi...

I have a long fusion, and both anterior and posterior implant systems. I used to set off the alarms about half of the time, and I was certain it was the implants. Then, after 9/11, when we started having to remove our shoes, I realized that I never set the alarms off. Turns out that there's metal in most shoes.

Regards,
Linda

[Alison]

My experiences with metal detectors: I have flown in Australia before and after Sept 11 across country and found in Perth that I registered slightly on the walk through metal detectors and with the wand one (we asked them to do it we were curious) it went nuts when it went over my back. Flying back from Sydney and going through the metal detectors (the ones you walk through) they went off. Off went my glasses, belt, keys, spare change, hair clips, earrings, hat. And I still set it off. No problems being an English speaking country (I didn't explain until the very last time I went through that I have rods in my back, I was curious to see if it was something else) I'm stumped what else it could have been setting it off, I was wearing cotton clothing with no metal in sight (ie no zips, no buttons, clasps etc)

My surgeon did suggest to me once, and I think its a reasonable idea, If you have any doubts that you might "set off" the metal detectors, That if you are going into a non- English Speaking country and don't speak the language, to take a copy of your x-rays in your carry on luggage (we actually managed to get a reduced copy) with a letter from your doctor explaining about the fusion etc and if you do set it off and can't work out what else it could be (also found going into nightclubs which have metal detectors they get rather suspicious, even if your scar is in full view) to get out the xrays and letter and show them that.

Alison


Perth: Set off wand, not the walk through
Sydney: Set off the walk through
United kingdom: set off wand, not walk through
Tasmania: set off walk through

[LindaRacine]

Alison...

Next time, try taking your shoes off to see if that changes things.

I carry a copy of my x-ray as a photo. To get a photo of your x-ray, take it while the doctor has your x-ray up on the light box. Or, tape a white sheet to a sunny window, tape your x-ray over the white sheet, and then take your photo.

--Linda

[jachar]

Hi,
Thanks so much for all the responses! I took some comments and suggestions that I read here and sent an email to the surgeon with questions. His reply was that the instrumentation he uses comes in stainless steel or titanium, but he prefers the stainless steel because it is a little stronger and he is able to control the correction a little better with it. He assured me it has nothing to do with budget. He said stainless steel has been used in the body for 50 years and has stood the test of time.

Apparently, department heads became aware of the xray mistake and had a conference about it. They appear to be taking steps to make sure the technicians follow directions. He assured me our experience with radiology did not reflect the care she would receive during and after surgery. He said his post op nurses were great, and very capable. (Yes, I questioned him in my email about the quality of care my daughter was going to receive because I wasn't feeling very confident about it)

Thanks again for the responses! This forum is so helpful. I am so grateful to have this resource.

Jaci

[Alison]

Hi Linda

I thought i had included shoes in the list (but on second reading I saw I didn't put them in whoops :-), I always remove my shoes first, and in Sydney I was wearing Doc Martins (which have metal on the shoe lace holes) and I was wearing all the other things on my previous list (and some of them such as my glasses and money I could understand them triggering the metal detector) But when all I was left with was my clothes (with no metal stuff in sight, and i wasn't wearing an underwire bra) and nothing else I became stumped at what else it could be (and the fact that I did not set off the walk through in Perth, but did in Sydney was strange for me). And I have no fillings in my teeth, no braces on my teeth, and the only other bit of metal is three teeny tiny clips in my ankle from ligament reconstruction, but they are micro tiny. So I'm stumped on what else i can "blame" for setting off the metal detectors, but i always find it rather entertaining ;-)

Alison

[mumof5]

I asked Amber's surgeon about this. He travels worldwide quite frequently and has pins in his knee. He said that it all depends on how sensitive the machines are set.
When we went into court Amber set off the walk through detector and when they put the wand over her it went crazy near her back and didn't even blip anywhere else.
Cheryl.