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purplepixie
07-09-2009, 06:40 PM
I am new to this site, as well to this diagnosis. First of all I want to thank everyone here for the time they have put in to their posts. Having only had my daughter diagnosed 2 weeks ago I have devoted my days and nights to research. It was when I got here that I finally found info and people who understood what was racing through my mind. The knowledge I have gained so far has been invaluable to me.

My daughter's story so far. A month ago I got a message from her Dad saying he thought something was wrong with her back. It was only then that I learned he had scoliosis and had worn a brace when he was younger. when my daughter came home I looked at her back and discovered that indeed it did not look right. Shoulder and ribs sticking out, curve to the spine and her waist shifted to the side. I wondered how I could miss it - but with an 11 yo posture and clothes always on it had escaped me.

So, knowing something was not right - off to the Drs. As soon as she saw my daughters back it was off for an x-ray. I knew watching the x-ray come up that it was not good. Still, we expected a brace, something my child was not looking forward to. The next day her DR called, and told me that it as 58* and she needed to see the specialist, she also hinted at surgery but I still was thinking brace.

We saw the specialist the following Tuesday where he said the curve was 61* and that it would get worse. Surgery was the only treatment option. I thought I would faint. He did say we could take some time, he encouraged doing research and deciding when it would be right for us. My daughter wanted it done sooner rather than later. I agree.

This was a week ago. We have a tentative date, a great DR, and a wonderful hospital. Still, I feel as though I am suffocating. My child does not seem to care much yet. She talks a bit to me with general worries; when will I eat and do I have to wear a hospital gown. The big stuff. :)

Me? I am terrified, like most others were. This is my baby and they want to cut her open. Add to that I do not have a great relationship with hospitals. Two years ago I took my best friend in for surgery, and due to a rare complication and infection, I did not get to bring him home. This plays heavily in my mind. I cannot do that again. I know the likelihood is beyond tiny, but still it is the recurring nightmare.

My apologies that this was so long. Figured I would get the bulk of it out in one sitting. I am hoping by being here I can get the feedback to help get both of us through this. To have people to talk to who do understand what our day is like. I am lucky though, I have a friend here who has had scoliosis for over 50 years amongst other things and he is doing great. He is a great shoulder for me. Still, things have changed, and this is my baby. If I could wave the wand and make her better, it would be done.

I wish I had specific questions, and I am sure I will. for now just want to meet people.

Thanks,
Jules

titaniumtough
07-09-2009, 06:46 PM
Jules!
Welcome to the site!!!
I can't help you very much...so I hope someone else can!! Best of luck with what ever choice you make. :hugs: :)

titaniumed
07-09-2009, 08:12 PM
Hi Jules

Welcome. This is a great site with some great people. If you have any questions, just ask away. If they are dumb questions, thats ok, there is quite a bit to absorb.....

Here are some questions for your spine surgeon.

https://www.infusebonegraft.com/questions_for_your_surgeon.html
Ed

JenniferG
07-10-2009, 03:00 AM
Every day I read this forum I also wish I could wave a magic wand. For folks who have children with scoliosis and those in terrible pain.

You and your daughter will do fine, it will be over before you know it and you can both get on with your lives without this horrible fear and worry you have right now. At least you've got a good doctor and hospital sorted. Don't let any past experiences (which are very rare) scare you any further.

All the very best, and please keep us posted on how you (both!) go.

Jen

purplepixie
07-10-2009, 03:22 AM
I so appreciate the welcome and the encouraging comments.

Each day is anew moment and more deep breaths. I count my blessings as there are indeed worse things we could be facing. And of course new lessons to be learned.

One of the questions I have is in regards to blood donation. My daughters DR does not have the children donate their own blood as he prefers them to be as strong as possible, and I agree. I instead have chosen to try directed donation. Amazingly I already have at least 6 donors who want to give blood, some who do not know my daughter but their relatives do!! I was shocked to tears. What I am curious about is how easy or difficult any of you found this? I know many I have read did get to donate their own but am assuming someone has done directed donor before. I am just curious if anyone knows what the process is like? My donors for the most part have their donor card which I believe makes things a bit easier.

I am also curious about the reaction of my daughter. She does not seem concerned about this so far. It is still early I know, but other than those few details of food and such, the enormity or what have does not seem to phase her. Is this normal? I do give her info. I want her to be involved and know what is happening. She needs to have some control here. I just wonder if I am just missing how she is really feeling.

Thanks for all the input. So very much needed and appreciated.

Jules

Pooka1
07-10-2009, 05:48 AM
Jules,

Hi. You sound like you are doing a very good job managing this situation.

In the run-up to my daughter's surgery, she didn't want to talk about it. She asked a few questions but that was it. I think she was researching it herself online.

Our surgeon also didn't have my daughter donate blood. They used the cell saver but would have used the blood bank if she needed more. The blood bank is very safe.

I took my cue from my daughter in the weeks before the surgery. We tried to keep busy and that helped.

You and your daughter will come through this magnificently.

sharon

purplepixie
07-10-2009, 05:52 AM
Sharon -

Thank you for that. Right now my biggest goal is to be here if and when she does have questions. I don't want to force her into talking about it if she is not ready. Figure we have the summer so have her off doing all swimming, running, and camping she wants before surgery time.

I hope your daughter is or has made a speedy recovery. :)

Thank you...

Jules

Pooka1
07-10-2009, 06:02 AM
My daughter was fused on 26 March 2008 and is fully recovered.

Her curve was 58* on the table and had been moving at 5* a month for at least 5 months. We couldn't wait. She was corrected down to 5* which has been stable as of the 8 month mark several months ago which was her last check; the next one is in November. They were also able to remove most of the rotation.

Your daughter is in the same range so I'm thinking you are going to get an excellent result also in terms of stability and cosmesis.

Good luck.

purplepixie
07-10-2009, 06:11 AM
Sharon -

That is wonderful news! Glad to hear she faired so well. Out of curiosity, did they do anything to fix her rib-hump, if she even had one? I keep reading about how some have ribs cut down or something in order to help fix the rib mis-alignment but still do not quite get it. Seems others say that the fusion itself fixed that. Since Khya has the hump I am tring to sort out if I should ask or the surgeon or not.

Sorry if have too many questions. Guess it is nice to finally have someone that answers back. :)

Jules

Pooka1
07-10-2009, 07:35 AM
As far as I know, the rib hump is from the rotation.

Because they were able to almost completely derotate her, she has no rib hump that I can see, even in tight shirts.

I'm happy to answer questions but I hope others answer also so you hear a range of testimonials.

babachi
07-10-2009, 08:39 PM
welcome, Jules
This forum has helped me tremendously.


As far as I know, the rib hump is from the rotation.

Because they were able to almost completely derotate her, she has no rib hump that I can see, even in tight shirts.
.
My son Jesse's rib hump was also "fixed" during surgery. The surgeon (with Jesse as a model) explained very well how they planned to do it. I have not noticed it.
We received a booklet about the surgery, pre-op, hospital stay. Jesse (16) had his own list of questions for the surgeon, many of which were on my own list. Other than that, he did not want to talk about it, nor was he interested in checking out this site. Thankfully, he did have a friend who a year before had the same surgery, surgeon, etc that he was able to talk to.

Good luck and ask away any time you need to.
Bethany

Sherie
07-10-2009, 10:25 PM
Hi Jules

My daughter seemed to have no interest at all prior to surgery. I told her what I felt she needed to know. I wouldn't be too concerned about that, I think every kid deals with it in their own way. Spinekids has a forum for kids who are having spinal surgery if she's interested (mine wasn't).

Her rib/lumbar humps are completely gone. She still has some rotation in her shoulder but not bad at all. Her posture is perfect and she is 2.25" taller now after surgery.

Take care

leahdragonfly
07-11-2009, 12:30 AM
Hi Jules,

I'm so sorry to hear of your daughter's recent diagnosis and need for surgery. I know how shocking this is, even without having to deal with immediate surgery.

I had a spinal fusion when I was 17 and I know I didn't want to talk about it, or think about it. I had never had much contact with hospitals or sick people, so I simply didn't have enough life e_perience to have as many concerns/worries as adults do. I could definitely tell that the adults in my life were completely freaked out about it, so that made me want to know that much less! She will ask what she needs to know, otherwise, try to let her have some control by letting her decide what she wants to ask. You will both do fine I'm sure.

I noticed your signature line listing Emanuel--by chance are you seeing Dr Barmada or Dr Achtermann? We have seen Dr Barmada several times.

Take care, you can ask anything here,

purplepixie
07-11-2009, 06:56 PM
Wonderful info - thank you. Have to agree, giving her what I think are the important bits and letting her ask from there. Hoping that when we meet the Dr again she might have more questions to ask him.

@Leahdragonfly - Yes, her Dr is Dr Barmada. The pediatrician recommended both Dr Barmada and Dr Achteman but the Bone Clinic felt Dr Barmada would be best suited. If I might ask - what was your experience like with them? So far he seems wonderful to me, but then I so stressed out that I not sure how much I notice.

Jules

Beckymk
07-17-2009, 01:21 PM
I am also curious about the reaction of my daughter. She does not seem concerned about this so far. It is still early I know, but other than those few details of food and such, the enormity or what have does not seem to phase her. Is this normal? I do give her info. I want her to be involved and know what is happening. She needs to have some control here. I just wonder if I am just missing how she is really feeling.

Thanks for all the input. So very much needed and appreciated.

Jules

I can't help you much with the blood donation as Carolyn did not weigh enough and basically we realized no one in our family has her exact blood type. Weird. They don't want mothers donating for some rare blood reaction that can occur, I don't think I could have anyway as I'm RH + and she is RH -. I know in our case, they basically recycle her own blood during surgery (there is a name for it but I don't remember what cell saver? maybe) but she did need 1 unit of donated blood. We ended up just using the blood bank.

As for her reaction -- I think it can be normal. I'm not sure they ever really get how big of a thing this is. Carolyn never thought it was that big of a deal and even though she's already had the surgery STILL doesn't think it was that big of a deal to go through. :confused: She is doing a pageant and working with a coach. It drives the coach nuts when she is trying to get her to answer the questions such as "what is unusual about you?" and Carolyn answers NOTHING. She doesn't think having the surgery is something unusual. Carolyn is collecting DVD's for teens at the Shriner's hospitals & that is why her coach is wanting her to pull her surgery into it so she can talk about her Shows for Shriners she is doing. Carolyn doesn't mind talking about it but she has NEVER talked about it as if it was a big deal. She has always talked about it as if it's going to go get a hair cut or something.

Pooka1
07-17-2009, 01:35 PM
As for her reaction -- I think it can be normal. I'm not sure they ever really get how big of a thing this is. Carolyn never thought it was that big of a deal and even though she's already had the surgery STILL doesn't think it was that big of a deal to go through. :confused:

My two daughters were talking about the surgery. I had brought up the issue of someone here asking what it feels like to have a straight spine.

Savannah said she was glad to have had surgery starting basically from when she woke up from surgery. Now I think she is talking from the perspective of the present where she was corrected from 58* down to 5*, almost completely derotated, and is pain-free. I also think she was relieved to get through it.

I also think it is possible she doesn't necessarily remember the pain in the hospital, especially in the first few days. Willow and I both saw her then and we were surprised she said she was glad by the very next day. I can well understand why she is very glad now though.

Willow thinks she still doesn't want the surgery. Of course her 36* - 40* curve is barely noticeable, has virtually no rotation, and she has zero pain... totally different from Savannah's case.

Savannah said she knows what having a crooked spine and straight spine feel like and cited that as another reason she was very glad to have the surgery. So it must be very different.

Scolimomof1
07-17-2009, 08:38 PM
Hello Jules,
I am saddened to hear of your daughter's scoli diagnosis, yet I am excited for you and her to have a surgery scheduled.We do not have a date so I can not help you with that but I have some questions for you but first I will give you a little history of my daughter. My daughter is 8 and was diagnosed when she was 6 with a 48 degree curve, give or take a few degrees. She has been wearing a TLSO 20 hours a day, approximately. As you can imagine, this has been very difficult for her and myself. We live in Florida so with the heat here the brace is very uncomfortable. As of June her curve is 58. We have another appt. in September. We are considering growth rods as the doctor has recommended because she is so young she has so much growing to do. I don't know if you have heard about the rods but basically it requires a surgery about every 6 months to extend the rods so that we can get the height from her torso. Now, I would like to know if your daughters curve is "ridged". Has the doctor told you that? The reason I am asking is because they tell me that once Emily is "rigid" then it is definitely time for surgery because that means that they really can't get much correction if she is. I love our doc but I also have a million questions. When Em was diagnosed, I too spent many hours researching and posting here but I never really found a 6 or 7 year old with our prognosis. It seems that alot of the kids here are older than my daughter. So....another question, will your daughter have to wear a brace temporarily after the surgery? These are some questions that I am thinking about once Em has surgery. Also, what state are you in? I am sorry for such a long email but as you know, when it comes to our children, there is never enough time to talk about them:D
I look forward to hearing from you and oh yea, when is her surgery? Thank you.....
Betty Jo

leahdragonfly
07-17-2009, 11:40 PM
Hi Jules,

I am sure your daughter will be in very good hands with Dr Barmada. My daughter loves him, he always says "hi beautiful!" to her. We sought care from Dr Betz at Shriner's Philly because we are interested in VBS surgery (in an effort to avoid fusion--her curve is way below fusion levels currently), which is not available in the Northwest.

I have had issues with the x-ray techs at the office shielding my daughter's pelvic area incorrectly, so make sure and keep an eye on that. You want the shield on her back (to shield from the primary beam), they want to put it on the tummy (to shield from scatter), so I now insist on both front and back shielding. Judy the nurse can make this happen for you if you tell her what you want.

Good luck,

purplepixie
07-18-2009, 08:41 PM
@Scolimomof1

I am so sorry to hear about your daughter. That has to be so frustrating, especially at such a young age. Because of when we caught my daughters bracing was never an option. I can only imagine how hard that has to be, especially in the heat. Hopefully they can come up with an alternative, even the surgery that could eliminate a need for the brace. Though, I am unfamiliar with ones they have to go in and work on every 6 months. Seems like a lot of surgical procedures for anyone, but the ability to keep growing I think would help make it worth it in the end.

So far the Dr has not said whether she is rigid or not. We do not actually meet with him again until Sept before the surgery. Unless I call or meet with him before it means a lot of those questions still go unanswered for me. :( I do seem to think he was saying that she was still flexible though, which I gather is a good thing. Still, knowing that both her father and I are tall I wonder what it means for future growth for her. Right now she is just under 5'2" and we are 5'9" and 6'1".

I too have seen what you mean about the age differences though. Does seem that most are closer to my daughter's age, but I have read some threads both on here and on Spinekids about children closer to your daughters age. I didn't think they became rigid till at or after the end of their growth potential, but am not entirely certain. Hopefully someone else here will know more or you will be able to get more questions answered from her Dr.

As to whether she has to wear a brace after the surgery, that so far has not come up so I do not think so. I know that Khya would prefer not to have one. That was actually her biggest fear. She hates the thought of a brace, as I am sure most kids do.

Oh, and her surgery has now been officially scheduled!! The insurance authorization went through and the Dr office let me know Wed that her surgery is on for Sept 23rd. We are both very relieved to finally have it set in writing.


@Leahdragonfly

Thank you for the info!! It is wonderful to finally find someone who has experience with her Dr. He does seem quite nice, though we have only met him once. He did come highly recommended and Judy has been wonderful on the phone. I always feel bad keeping her on while I ask questions but she is great about trying to answer them or point me in the right direction. I shall indeed talk to her before Khya has more x-rays as I have noticed before that they only seem to worry about the front area and not the back. Important info to know and not something I was thinking about.

My apologies to all for being so long winded. :)

purplepixie
07-18-2009, 08:50 PM
Sigh. Deep breath.

We have finally have our surgery date set. Sept 23rd we go in. Her pre-op is scheduled a bit early apparently, on the 10th of Sept, as her Dr is on vacation the following week. Guess better he gone then than right after her surgery. I made it very clear that he had to be available after her surgery. When my friend has his the Dr then went out of town and things did not go well for us.

Now I just feel like I am in a holding pattern. 2 months till surgery, it is constantly on my mind, but nothing really we can do. We do have trips coming up that I hope help occupy our time. She is taking a trip with grandma to the Redwoods while I make my annual pilgrimage to the desert. Hoping the trip will help relax both of us before surgery and recovery.

Little stressed though about scheduling. I get back from my trip the day before pre-op so not a lot of time to prepare. Then we get just under 2 weeks to get things in order. Am still trying to figure out how to get a hold of the school to let them know about her surgery and find out what steps I will need to take to accommodate her for her return, as well as hopefully a tutor. I know I have seen a few threads on here about this, but dies anyone reading now have any tips for dealing with the school? Because her surgery is so soon after start of term it does not give a lot of time for talking to those I need to make arrangements with.

Am I just stressing myself out over nothing? Some moments it feels like it. Other moments I ask myself why I would put my child through this kind of torture. Believe, I know that in the long run this will be better for her and her body. It is just hard when I know that right now she is not in pain, she is just oddly curved. She just figures - get it over with.

Sigh...back to breathing. Thank you for listening to me babble. Somedays you just need that.

Jules

jrnyc
07-19-2009, 02:02 AM
hi jules
i was a special ed teacher for years..then a social worker..any child in this situation is entitled to home schooling when necessary..when the child cant come to school...& special services when they can return to school...these protections are part of the federal handicapped protection..& administered in EVERY state...your child will be considered temporarily handicapped until she is better...you can obtain info from special ed services in your school system...it is required by law...just the fact that your child will be out of school awhile will qualify...it is not supposed to be tutoring, but a full fledged teacher who comes to your home...would recommend contacting the school system as soon as possible to let them know what is coming up...& children are required to have individualized educational plans that outline what services they will receive & the time frame as well...

write any time
best of luck
jess

Pooka1
07-19-2009, 08:54 AM
Now I just feel like I am in a holding pattern. 2 months till surgery, it is constantly on my mind, but nothing really we can do. We do have trips coming up that I hope help occupy our time. She is taking a trip with grandma to the Redwoods while I make my annual pilgrimage to the desert. Hoping the trip will help relax both of us before surgery and recovery.

We had about a two month ramp up also. We just tried to keep the normal schedule and(or) stay busy, especially in the last few days.


Little stressed though about scheduling. I get back from my trip the day before pre-op so not a lot of time to prepare.

What do you have to do to prepare for this? We had a pre-op two days before and there was no prep I recall. Just showed up.

If you mean questions, I would email those as they occur to your surgeon. Don't wait until that one pre-op day. Our surgeon's asst. gets back to us with his answers usually by the next day.


Then we get just under 2 weeks to get things in order. Am still trying to figure out how to get a hold of the school to let them know about her surgery and find out what steps I will need to take to accommodate her for her return, as well as hopefully a tutor. I know I have seen a few threads on here about this, but dies anyone reading now have any tips for dealing with the school? Because her surgery is so soon after start of term it does not give a lot of time for talking to those I need to make arrangements with.

I strongly suggest you contact the school now. Don't wait until the year starts. They are there now, aren't they? I know I called in summer when I thought my one kid was going to need surgery during the school year to change her elective from dance to French. They were there and did it on the phone on my one and only call. The admin people are there doing scheduling, no?

In re the tutor, I never pursued that because the surgeon's literature said that only kicks in where we live at 4 weeks and most kids are back to school by then. Others have experience with that though.


Am I just stressing myself out over nothing?

Absolutely not. Your reactions are very normal.


Some moments it feels like it. Other moments I ask myself why I would put my child through this kind of torture. Believe, I know that in the long run this will be better for her and her body. It is just hard when I know that right now she is not in pain, she is just oddly curved. She just figures - get it over with.

If I were you, I would focus on the progression statistics and long term adverse consequences of for a 61* T curve. I don't see a choice just like in the case of my one kid whose curve moved ~5* a month for at least 5 months, was rotating before my eyes, and had growing pain. That's not considered having a choice in my opinion so that made it easier on all of us. She'd be dead by now most likely if she didn't have the surgery. Note to Weiss. :mad:


Sigh...back to breathing. Thank you for listening to me babble. Somedays you just need that.

Jules, please don't apologize for that. Folks are glad to listen and help.

Pouncy
07-19-2009, 03:36 PM
Pooka, I completly understand Savannah. Even though the pain can be intense I was also glad the minute I woke up from anesthetic that I had the surgery. The reason I was so happy after surgery was because even though I was in pain I was able to breathe and that made the pain well worth it. The Dr said my spine was so far in my right lung that it was only expanding 20% when I woke up from surgery it was such an amazing feeling to be able to breathe. I was in pain for as long as I can remember but never said anything because I thought everyone went through pain and just dealt with it so until I was diagnosed during a check at school I kept my pain to myself.

I was 11 when I had surgery and never thought of it as a big deal it was just something that I had to go do. After the first few months I adjusted to normal life (being able to breathe!) and basically forgot about what I had been through. Over the last 13 years I have had very little pain or physical limitations (except one single yoga pose) so I never really thought of the surgery as a major thing just something that happened thats over now. It wasnt until the last 2 or so years that I really became interested in the details and had the desire to help young people going through what I went through. I was never shy or embarrased about telling people I had surgery and explaining it to them and always felt like they were overreacting when they sounded shocked at what I had been through.

I truly think for most young people that have this surgery it is more stressful and difficult to deal with for the parents than for the child actually having surgery. At least it was in my situation. Parents are around to protect their children and it can be difficult when they have to hand over control to a Dr and sit by and wait.

Pooka1
07-19-2009, 03:44 PM
Pouncy,

Thanks so much for that post. That makes great sense. I really appreciate folks who have gone through this and can fill parents in like you have. Brad (Qikdraw) is another valuable person for me as he is an adult now and can say what he felt as a child.

Again, thank you. :)

sharon

Pouncy
07-19-2009, 03:46 PM
Jules, I had surgery the week before school started and was able to return to school on the 3rd monday after the start of school. My parents contacted the school to let them know what was going on but I don't remember if my assignments were sent to me or if I played catch up when I returned to school. I will ask my parents and see if they remember the process. :)

Pouncy
07-19-2009, 03:52 PM
Pouncy,

Thanks so mnuch for that post. That makes great sense. I really appreciate folks who have gone through this and can fill parents in like you have. Brad (Qikdraw) is another valuable person for me as he is an adult now and can say what he felt as a child.

Again, thank you. :)

sharon

No problem at all Pooka! Recently I was out with my mom and saw an older person with obvious severe scoliosis that was wearing a brace and I thanked my mom for getting me the surgery. She looked absolutly shocked and said she never thought I would thank her for it she thought I would always be upset that I was put through that process. It may have been a difficult few months of adjustment after the surgery but I have 0 regrets and am thankful for the Drs that did my surgery and my parents for being supportive of me after the surgery even though they knew I milked it occasionally (I was only 12 and liked attention!). :rolleyes: