New here

[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