What is surgery like?!

[Boo]

hi can n e 1 who has had surgery give me the details please?:rolleyes:

[dapsbounce8]

Details such as what? There is a ton of stuff I could tell you, so you need to be more specific.

[Boo]

i would like to know what happend to you in yor stay please:o

[dapsbounce8]

Oh my gosh - I just wrote you a huge response but it wasn't sent!!! Sorry about that - I don't have the energy to do it again, but I'll try to re-reply tomorrow.

[Boo]

ok then thank you;)

[mumof5]

Hi!
I just read your reply to me in 'shoes' and went looking for what else you had posted. My daughter has just had a double fusion 4+ weeks ago, if you read through my thread 'worried mum from Australia' you will see all about our experience.
Best wishes.
Cheryl.

[Boo]

Chryl you sound like a very supportive mum and i am pleased to think that beacause any girl/ boy needs a lovley mum to get through times like these!

lots of love Boo:)

[mumof5]

What a nice thing to say. Thank you very much. I hope that you get all the support that you deserve from your family. Don't forget there is lots of support to get here as well.
Best wishes
Cheryl.

[Boo]

thank you. :p

[Boo]

Can every 1 plz tell me their surgery story???:p

[bryan]

I had scoliosis sugery in 1976 and can tell you that it all goes by very fast. Those few days in the hospital will be a distant memory before you know it. I spent 10 days in the hospital and within 6 weeks after surgery I was doing most anything I wanted. I am now 44 years old and it is very, very rare that I think about having scoliosis or the surgery.

[dapsbounce8]

Ok, I'm going to try to tell it again! I hope nothing goes wrong...

So, I went to the hospital the morning before surgery, had a couple of blood tests done and then went up the the patient prep area. I had my own area sectionned off by curtains where I changed into a hospital gown. Then tons of people introduced themselves - surgeons, assistants, anesthesiologists, etc. I was given the choice to recieve initial anesthesia through a mask or an injection. The injection works quicker, but I thought the mask was cool so I chose that (orange scented gas, yum!). THey wheeled me into the operating room where there were lots of people and bright lights. They put on the mask and in about a minute, I was out!

When I woke up (8 hours later) my face was really swollen, so it was hard to see. I had a cathedar, iv, backup iv, oxygen tubes in my nose, a heart monitor, and a hemovac (blood drain). I don't remember much until several days after surgery. My parents took turns staying with me, sleeping on a chair that folds out into a bed. I didn't eat very much, just drank lots of water. I spent a lot of time sleeping, or listening to my parents read to me.

I had a visitors, but I didn't want to see anyone that much. I was in a lot of pain so I was easily irritated. I controlled my pain with a personal morphine pump connected to the iv. Later on (I had no perception of time!) I went on tylenol with codeine.

As for physical therapy, on day one I first stood up and took a few steps. The next day I walked to the door and back. Next around the unit, and finally up stairs. They also did leg and ankle exercises with me so my lower body wouldn't get too stiff. The tubes came out in this day by day progression as well - first the heart monitor and oxygen tubes, then cathedar, then iv and hemovac, and finally the back up iv.

The most painful part of being at the hospital was being rolled. You have to be rolled on your side every two hours to prevent bed sores and stiffness. That was hard because, though the nurses help, you still have to pull yourself a lot. The nurses also checked my vitals (oxygen percent, breathing rate, heart rate, temperature) every two hours.

I think I've said it all. Let me know if your have any questions!

[Boo]

do ur ribs grow back when they take them out?

[Boo]

hi every1.
I would like to know the following questions:

What do u do in the phisio training?
what do the nurces do when they come and check you?
Why wont i b able to eat?
what are ice chips?:confused:

[mumof5]

When you have surgery your whole body is 'shut down'. It takes a few days for everything to get going again. You will be on a lot of pain medication and you sleep a lot. The last thing to start working again is your bowel. So if you eat anything it will just sit in there, not move, and make you really constipated. Trust me that's the last thing want. You wont want to eat anyway.
Ice chips are small broken ice cubes.
When the nurses come in they will check your temp.( everyones seems to go up and down a bit with this surgery), blood pressure, your drainage bags, urine output, I.V. input, etc. Whatever you are conected to they will check. They will roll you. Ask about your pain and make sure that you are generally OK.
Australia seems to be a little different in regards to the physio. Amber had someone come and do lung exercises with her. The physio came past everyday but Amber and I managed on our own and didn't need a great deal of help getting out of bed or walking. I learned pretty quickly how to roll her and help her to move, so the staff let us go and got on with other things. They knew that we would call if we needed help. I was actually asked in the hospital if I was a nurse (I'm not), I've just been in hospitals lots and the rest was just instinct.
I don't know what happens with physio in other countries but that was our experience. Maybe someone else can answer more fully for you.
Cheryl.

[dapsbounce8]

I agree with Amber's mom on most points. For my physio, I was taught some leg exercises to do in bed - ankle stretches and muscle contractions for various leg areas to build up muscle. Other than that, the physio depended on my day by day progress. As I said, the first day I just stood up and took a couple steps, and each day I walked a bit further and a few more times a day. Near the end of my stay, I climbed up and down stairs. At the hospital I stayed at, the two physio requirements for leaving are that you can walk around the entire unit, and climb up and down one flight of stairs.

[mumof5]

The hospital that we stayed in didn't have any stairs. There were ramps everywhere. But Amber had to be able to manage the toilet and walk around the ward, no temperature for 3 days and to have eaten a proper meal.
Cheryl.

[Boo]

thanks you guys i have some more questions

This 1 is peronal and you dont hav 2 answer:

what if you Are on ur menstral cycle on the day of the op?


i am scared that an evil nurce might try to kill me. Did any 1 else feel this way? 9a nurce killed some one on the news the other day)

[mumof5]

If you are female and having surgery you are very likely to have your period while your there (in hospital). Even if you haven't started yet you may get 'it'. Don't be embarrassed. It happens to most girls/women. The nurses deal with it all the time. I said to Amber while she was in the hospital, 'wouldn't you much rather have it now, while your in bed and they are doing all the work and chances are you won't remember it anyway.'
Are either of your parents staying in the hospital with you? I don't think you need to worry too much about evil nurses. We have things like that happen in Australia as well. There will always be someone with you. Whenever you are about to go through a major time in your life (not only surgery) you take on everything that you hear and try to apply it to yourself. When the things that you are hearing are bad, you frighten yourself. Think of how many people get through things successfully and let that be your guide. The negative stuff doesn't happen that often. That's why it makes the news. Talk to your parents, siblings, friends, teachers about how you feel. You need their support too.
Keep positive and best wishes.
Cheryl.

[Boo]

ok then i dont feel so bad now

[Peggy]

Hi Boo,
My daugher started her period the morning of her surgery. They let her wear a pad during pre-op and the nurses took care of it from that point after. It was fine. It did take about 7 weeks post surgery for her to get her next month period. The trauma to the body and all. Good Luck, don't be afraid, everything will work out fine!

[Boo]

hi every one i havent been on here for a while an i thought i'd just say hello. My surgery is a month away and i am kinda lookin forward to it.

Today i was at my mates house and we were playing with her next door neighbor. I went to blow on the boys whistle and he shouted "DON'T I'LL CATCH YOUR DISESE!" I said what disese and he said your scoliosis thing. Then i shouted ouT "HOW DOES HE KNOW?" And my freind confessed that she told him.
i Dont know if this sounds stupid but i hardly knew this boy and my best freind told him somthing i didnt want him to know, She really upset me because usually i foget about it but every sec of the day she reminds me and it really makes me feel bad. Why do i hav to hav scoliosis what did i do Wrong?:(

[mumof5]

Obviously your friend didn't know what she was talking about when she told 'that boy', otherwise he would know you can't catch 'it'. Maybe he said it to get your attention. You know you have a back 'problem', you live with it. Maybe you should sit down with your friend and tell her that you haven't forgotten about it so she doesn't need to keep reminding you. It could be that she is scared for you with your upcoming surgery and she needs to talk about it. I think it's normal that you want to keep it to yourself and the people close to you. But really how much difference does it make if other people know? They will find out anyway while you are in the hospital and while you are recovering. Most people will be supportive and the ones who aren't are just misinformed selfish people anyway who are not worth bothering about.
Cheryl.

[Boo]

I dont y, but my friend wants scoliosis! once she said to me that she had it. She bent over and pulled one of her arms back deliberatley!
she goes around telling every one that i've got it. She seems to be proud of it.

[mumof5]

Maybe your friend is jealous of the attention that she thinks you are getting and is feeling left out. I don't think she really wants to have scoliosis, she probably hasn't even thought about the problems it would give her. It is just an attention thing. Do you have brothers or sisters? Have you ever noticed when one gets sick someone else has 'copycat' things! Some people like to 'hang around' with people who have 'something wrong' with them so that they get the attention as well. Personally I would just ignore it things may change after you have the surgery.
Best wishes.
Cheryl.

[kylie-ann]

Hello Cheryl (mumof5)

I too live in Australia and will be going for surgery in October. WHich hospital was your daughter in adn who was the surgeon? I will be heading to the Mater in North Sydney under Dr Andrew Cree. I am really scared to tell you the truth - more so worried about my children and not being their for them. I didn't realise that i would have so many tubes hanging out of me - do you know if this is the same for all patients? When do you recommend that my 4 and 2 year old come and visit me in hospital? Will someone (husband or family) need to be with me 24/7 for the first couple of days?

Thanks for all your advise - its wonderful!

Oh - where do you live? I am in Thirroul (Wollongong)

Kylie-Ann

[mumof5]

Hi Kylie-Ann,
We live in Swansea Heads, 30 mins south of Newcastle. We went to Westmead Childrens Hospital. Under Dr. Andrew Cree. He was wonderful, he actually has a very dry sense of humour that doesn't come out at first meeting.
How old are you? Obviously older than my daughter that had surgery. What degree are your curves? Life is going to change a lot for you after surgery and you will have to make a lot of adjustments. Learning new ways to do things will I would say prove a challenge. I hope in the time to come that I can help you with this but you have enough to deal with at the moment and it will be a while before you have to worry too much.
I went to Sydney with Amber and being away from my other children was very hard.
Dr Cree likes you to be in a full week before he will let you go home. Amber was done on a Wednesday (12th) and we went home on the next Thursday (20th).
Tell your children what is going on to the extent that they will understand. My 3 year old knows that Amber had to go to hospital for an operation on her back. We went to Sydney and we would look for 'NEMO' while we were there. She did not come to visit in the hospital, mainly because my parents who were looking after the other kids thought that there may have been a problem getting her out of the hospital again. Now that Amber is home Shayleigh (3 yr old) knows that Amber can't do some things because she has a cut on her back! She is very interested in it but will not touch it.
When is your surgery?
I personally wouldn't bring the kids in until day 4 or 5. Before that you will be sleeping alot ( and dropping off while talking like Amber did) that could scare them. You will also have in a catheder, fluid drip, drainage tube (from your back), morhine drip and usually a spare canula. Most of this gone around day 3 or 4, so I would leave it until then until you see the kids.
I took lots of photos while we were in the hospital and the kids do like to look at them. I took photos of the xrays which Shayleigh loves to look at even though she doesn't really understand that she is looking inside Amber's back.
When you get home you will need someone to help you move in bed, get up, shower (use a chair), getting dressed ( the kids could help with that, make a game of it). You should be 'ok' enough for your husband to duck out and shop etc.. but not for a great length of time. I asked people to ring me before they came to visit and I told them what groceries we needed and they picked them up on they way. It made life that little bit easier.
I hope that this has helped a little.
What else do you want to know?
Best wishes.
Cheryl.

[nanmccune]

I know it's hard to imagine before surgery, but the rest of your life will benefit from it. My daughter did not get her period while she was in the hospital, and she did not get one after surgery until 2 months later. I stayed at Children's Hospital in Pittsburgh with my daughter the whole 5 days that she was there, and the nurses could not have been nicer to her! They are specially trained nurses that help people through this type of surgery and are good at making them feel better. I would advise you though if you have long hair, french braid it or something so that it is not a mess to comb out after nearly a week. It is doubtful that you will feel like having it combed.

nanmccune

[nanmccune]

I'm sure that surgery is different for each person, but here is what my daughter went through. When she went in for her surgery, the nurse asked her if she wanted something to relax her, she said yes. They gave her a pill that made her groggy. Natalie is very afraid of needles, so we asked them to wait until she was sleeping to give her all but the one IV that she needed for the anesthesia. They agreed. Her surgery took 8 1/2 hours and she only lost about a tablespoon of blood, so she did not need any of the blood that we had donated for her. When she came out of surgery, her face and body were very swollen from the anesthesia and laying flat. This is normal and goes down in the first 8 hours after surgery. She was upset about having a catheter in her and it burned the first couple times she peed. The doctor wanted her to lay flat for 24 hours without getting out of bed. Natalie has never been able to sleep on her back, so this was uncomfortable. The nurses brought me pillows to prop her up so that she was not completely flat, but she was not allowed to roll over, unless they were changing her dressings. The next day, her doctor said that she could turn on her side if she wanted, he just said 24 hours so that the nurses did not try to get her up before then. She had a morphine pump, but was still some pain for the first 48 hours. Once that time passed, it was like night and day and she felt much better. When the nurse came in to get her out of bed on the third day, Natalie put the top of her bed up the whole way and got out of bed on her own and sat in a wheelchair for the nurse to take her for xrays. She started sitting up in bed for short periods and ate some jello. They took her IV and catheter out and she had to use the bed pan. Natalie was embarrassed and did not want to call the nurse every ten minutes when she had to go, so I put her on the pan when she needed it. On the fourth day, Natalie walked around the unit and a nurse helped her get a shower and wash her hair. We watched TV and Natalie ate Chicken strips and French fries from Wendy's. She did not eat much, but she was starting to want regular food. Natalie was able to leave the hospital after 5 days. The ride home was very uncomfortable for her. Once we got home, Natalie was able to get around on her own, but she needed help getting up. When her best friend's dad stopped in front of our house to ask about her, Natalie ran outside to see him. He was shocked to see her moving around so well. Natalie used baby wipes to wash herself off until she could get a shower, and could do bathroom stuff without help. At her own request, and with her doctor's approval, she went back to school after 30 days. The school nurse worked with us and arranged for Natalie to have a book in each classroom for her and a full set of books at home, so that she did not have anything to carry. She was given an elevator key and one of her friends walked with her to her classes 10 minutes before the bell so that she was not in crowded hallways. If she got tired, she went to the nurse's office to lay down, or twice I went and got her. She did very well and being back in school with her friends helped her a lot. Good luck with your surgery, and I hope this helps to answer some of your questions.

nanmccune

[Boo]

hi guys, my op has been moved to the 10th of August! Its somit to do with insurance:confused:

[drivergal]

Hi Boo,

I just had the surgery just about two weeks ago. Let me tell you, its really not that scary. When I first heard that the brace didn't work for me and that surgery was recommended, I was freaked out. I was depressed because I have never had surgery before. Turns out, the closer I got to the day of my surgery, the more excited and anxious I was. I went in positive and optimistic, because you just have to be. Went in on the 28th of June to Vanderbilt Childrens hospital and they put me on the IV and sent me back within a matter of minutes. The next thing I remember was the mask over my face and the doctors telling me to breathe deep. I couldn't have been anymore relaxed. What seemed like 5 minutes that I was asleep and having really good dreams, was actually about 4 to 5 hours. Then I came out of surgery, they put me into recovery and I really didn't have any pain. Just stiffness, and I felt like I was a pancake, just flat and all...but it wasn't that bad. I stayed in the hospital for a week, and that week was probably the easiest. Came home on saturday and took it easy. I'm limited to my abilities, can't drive for about 6 weeks, but its almost like a vacation...I don't have to pick up after myself. The whole thing was the easiest thing I have ever gone through, crazy as it may seem, it was a breeze. And I am sure you will be taken very good care of. Just do what the doctors tell you, take it easy, and don't stress about the surgery. If you stay positive and optimistic, everything will go great. I couldn't be happier, and I don't really have pain, just stiffness, but it will all go away in time and its not as scary as it seems. Really. And if you want to know anything else, please ask me. I am here for ya. :) Good luck!

[Boo]

Thank you soooo much! Iglad it has been good for u. I had some grat news today that I am going into a brittish championship 4 fencing (sword fighting) and i could fence for England if I win. Plus I havent been doing it for a year yet! Any hoo after the op every thing can go bak 2 normal.

see ya!

[drivergal]

wow! that is so awesome. I think sword fencing is just awesome. I would love to be given the chance to do that. I am so happy for you too! I hope your op goes great, you will do really good. I have found that looking forward to something big helps a lot. So hopefully your recovery will go fast and you will be able to continue fencing!

[Alison]

Hi Boo, what is your favourite weapon, my personal favourite is Epee even though I get very bruised from it :-). Is the British fencing championship before or after your operation. Just keep this is mind with fencing, you probably will be restricted in it for at least 3 months as with all the lunges and attacks it's not good for a recovering spine as you have to stretch out, bounce about etc. Once you are past the restrictions bit you will have little problem with fencing (you fencing side will build up lots muscle wise but personally except for that, I haven't experienced any physical fencing problems. Well done on making the British championships I know how tough it is to get there (and for doing it /less than a year you must be very very good)

Hi Drivergal
This is just my curiosity being curious, was your fusion double/single and is it long/short (number of vertebrae)

Alison

[Boo]

The comp will b after the op. I know that I wont b able 2 fence 4 at least 3 months but I am going to watch. My teacher was really upset wen he herd I was having the op and said that I was his secret weapond. Any way we are going to a junior comp so it wont be that hard. I've only done 1 comp and I won! I'll b getting my medal on monday.

I will make sure to do plenty of swimming to build up my mucles too.

Ps i have been fighting with a full size heavy foil so when I go to the comp it will be alot, alot easier!

[mumof5]

Congratulations! It will be good for you to have a goal to work towards during your recovery. I hope all goes well for you.
Best wishes.
Cheryl

[Boo]

hy very one. Who ever has had surgery like ages ago could you plz tell me how long it took you 2 recover?:)

[mumof5]

Hi Boo,
Amber's surgery was 10 weeks ago tommorrow. She is back at school now. She still has limitations but hardly any pain, though she has to be careful not to overdo it.
Best wishes.
Cheryl.

[Alison]

It has been almost 5 years for me post op (Nov 99), now i can basically do anything I like (and have done so for the last couple of years). This is how my recovery roughly went

0-3months: all restrictions were in place, still pretty sore

3-6months: able to carry a little bit more, gentle swimming, more uncomfortable from sitting for a long time rather than pain

6-12 months: more swimming, carrying basically normally (except really heavy things, still basically no sport allowed

12 months onwards: restrictions slowly lifted, I am basically normal, do everything (except horse back riding and bungee jumping), unless people look at my back they do not know. The only place I get sore is my right shoulder where they cut a lot of muscle

After about the first couple of months I felt pretty well back to normal, but you have to keep on reminding yourself not to overdo it, and that the back is still healing, and that the mind is there, but the body not quite

I was swimming States 1.5 years post op



Alison

[Boo]

hi every 1! my op is 2 weeks from 2morrow, just in case I fogot to tell you my op was moved to the 10th.;)

[gabrielle]

Hi Boo! I saw your nickname and began reading your posts. I have two sisters who call me Boo! I haven't had surgery yet, but am headed that way. I have an almost 80 degree lumbar curve. I am 42 years old and it has progressed at about one degree/ yr. since I was first diagnosed at 23. Anyhow, I mostly wanted you to know you have another "someone" in the world who'll be saying a prayer for you come Aug. 10th. I think you're going to be very happy after your surgery. As we all know here, scoliosis ain't no picnic! Best of luck at the competition!
Gabrielle

[kylie-ann]

Boo,

Good luck for the 10th August from Australia! I will be thinking of you! Who knows, in 4 years time we could be seeign you at the next Olympics!

Alison.. did you have a thoracoplasty? My doc told me today that he will be performing this - a little nervous to tell you the truth!

Cheryl - went to see Dr Cree today - all is well and I am on the countdown to sugery now :0

Kylie-Ann

[Boo]

hi, did n e one here have to buy button p.js 4 the op. I have to. And why do nurses have to turn you over every 3 hours. D they do this all through the night aswell?

[mumof5]

Hi Boo,
For the first few days you can not move yourself, at all. You are either to 'out of it' with morphine or just to stiff and sore. I have photo's of the first time that the nurses helped Amber get out of bed, everyone who see's them is shocked by the pain on her face, one of my friends had tears in her eyes looking at them. They have to roll you so often because 1. you can't do it and 2. to help you not to get pressure (bed) sores. Yes they come in and roll you every few hours day and night.
The button P.J.'s are easier to get on and off. For the nurses as well as for yourself. I know it took quite a while before Amber could lift her arms above her head, though your surgery is not going as high as Amber's did you may not have as much trouble.
Best wishes for the 10th.
Cheryl.

[Alison]

Hi Boo

Just a further suggestion, try and find button up pyjamas (assuming they are two piece) that are a little bit baggy and have a drawstring with elastic waist. It means that you don't have to wear them "touching" your back, they can sit loosely (for some people this is very tender to put anything on). If I had to have the surgery again, I would definetly take button up pyjamas, I did not (I had a nightdress) and even though it was extremeley comfortable once it was on (because it kinda just hung), it took careful maneuvering to get it on and off and I kinda winced (but I was also high up, being at T2 downwards)

Hi Kylie-Ann
No I did not have a thoracoplasty. I have always had a rib hump (since birth), and always will, but basically a thoracoplasty was not done in my situation as my fusion was only a holding fusion (no correction-this was because of a whole number of factors), and if I remember rightly a thoracoplasty would have been very difficult (was only mentioned once in discussions) as the spine itself was no different from before.

Some people say that a thoracoplasty is very sore afterwards, but for the results that they get from it, was worth the discomfort

Alison

[kylie-ann]

Alison

I am hearing the same thing -very painful but worth it! My Dr really wants to perform this on me but I don't know if I can cope with the pain:0

Any other suggestions for clothing? For your hospital stay, do you wear there gear or take your own?

Kylie-Ann

[Boo]

The doctor said to me they are gonna get rid of my rib hump by taking out some ribs, but I dont understand why it doesn't go away when they fix your back. Does n e 1 no????
:confused:

[mumof5]

Amber had thoracoplasty from T8 to T12. To answer questions for both of you. When the spine curves or rotates the ribs grow differently to normal and that causes the hump. (I don't really know why though). They take out part of the ribs to lesson the size and appearance of the hump. As you are healing from the surgery your ribs actually grow back STRAIGHT. You may still have a small hump. Amber does, the surgery has lessoned her hump to a little less than half the original size. The surgery does not correct the hump completely in most cases as far as I know. Amber is still very thin and so therefore the hump is still noticable. As she gains weight the hump will become 'covered'. But as it is you can't notice under her clothes unless you know about it and look hard.
Amber came home from the hospital 8 days after surgery taking panadol. 2 weeks later she was off pain killers all together. Although she was sore she said it was not unbearable. Now and for the last month or so she has said that it is more being uncomfortable rather than being in pain. As a 15 year old she says 'Yes! It was worth it' As her mother I agree.
As to clothing in hospital. Amber was in a hospital gown for the first few days. When she got up for the first time and had a shower, the nurses asked her if she wanted another of their gowns or her own. She chose her own. As well as button up P.J.'s she also wore a chemise. I loosened off the straps and after she was dry and still sitting I slipped it over her feet and as she stood up I pulled it up and she put her arms in when it was in place I adjusted the straps. To take it off I loosened the straps off and she dropped it to the floor. When she got cold she put the long sleeved button up ones over the top. Drawstring bottoms as well.
Best wishes.
Cheryl.

[dapsbounce8]

Boo:
The rib hump is caused by the way the ribs grow because of the spinal curve, not the fact that the torso is twisted. In other words, the ribs stick out because they grew that way, so rotating the torso can't fix this.

I don't know why Amber still has a small hump. I had ribs removed for mine and its completely gone, and I am very thin as well. I was really pleased with the way it turned out.

[Boo]

Hi every 1! I'm going to hospital 2morro, 4 all the tests and stuff, then I am staying the night for the op the next day. Wish me luck every 1!:D

[mumof5]

Good luck Boo. Amber and I will be thinking of you. I'm sure everything will go well.
Best wishes.
Cheryl.

[kylie-ann]

Good luck Boo

Kisses and hugs from Australia!

Let us know how you go!!

Kylie-Ann

[Jeannie924]

Hello. I have been reading the posts and I think that you are all so brave! My Jessika is 12 years old and has Prader Willi Syndrome. She will be having surgery September 1 and I am so scared! She has a high threshold to pain and I am afraid that she can hurt herself after. Also, How do you deal with comming home? Does someone come into your home to help? Jessika can be VERY stubborn and I worry about post op. She is 62 and 40 degrees. How long is the hospital stay? Sorry to be rambeling on.


Jessika's mom, Jeannie:(

[jc3]

hi this is for dapsbounce8, i read in your post that you had your rib hump removed, my daughter is having surgery nov 3rd and is going to have that done as well. Did you have alot of pain afterwards from having that done? I have heard that it is more painful, but the dr. said that it needs to be done.
thanks jennifer

[Amymichele]

Welcome, Jeannie:)
12 IS a tough age to be going thru this, huh? She may want to
handle recovery in a way that is scary for you. The upside tho...such a young body will recover all the quicker!
I am making a list of upcoming surgeries here, and would like to add Jessika to my prayer list, if you'd like.

**Boo**.....definitely praying for YOU today.
Hoping all is going as well as can possibly be for you, sweetie.
:)

[jc3]

hi amymichele
i read a reply to a post you wrote and i was curious as to what you meant by:

12 IS a tough age to be going thru this, huh? She may want to
handle recovery in a way that is scary for you.

what do you mean by scary for you?

thanks
jennifer

[dapsbounce8]

jc3:

Yeah it was pretty painful. It made breathing difficult at times because taking really big breaths hurting so I got into the habit of breathing very shallowly (is that a word?). I also got random shooting pains in my ribs - those hurt a lot. I'm now 6-months post-op and I have barely any remaining pain, except occasionally (once every two weeks) in my ribs. Even then, its only because I over work myself (back surgery + working at a stable...not a good combo).

I definately think the rib removal is more painful than the spinal fusion, but I am still glad I did it. I wouldn't want to carry that hump around and be insecure about it for the rest of my life and I'm very happy with the results. The extra pain was worth it.

GOOD LUCK BOO I CAN'T WAIT TO HEAR FROM YOU!!!!!!

[jc3]

hi charlotte
thanks for writing. Are you back to pretty much normal activities? When was your surgery? If it was during the school year how long were you out of school. My daughters surgery is nov 3rd. i hope her recovery won't be too bad.
jennifer

[Amymichele]

Hello All-

Just checkin in hopes of a good word on Boo.
Guess it's way too early yet to expect any news, even from her parents, huh?
Actually, I don't think we've heard from her parents here, just Boo, right?

*jc3....hey there, I was only thinking about how a 12 yr old's energy, need for motion, and CAN DO mindset may make it tricky to get them to patiently wait out the TAKE IT EASY time right after.
sorry for the confusion:)

[marilyn]

It was 1998, and I was 14. I had a 60 degree curve, and had the fusion surgery, rods and all..the whole shebang. While i was in the hospital, I had quite a few interesting experiences...some funny, some downright awful...
I woke up in recovery, and was obviously doped frome the tip of my head to the bottom of my toes. The anesthesia made my mouth bone dry, and I told my mom about it. She could not give me any water or anything for awhile(routine hospital procedure) and I misinterpreted it as me not getting my point across. So, I proceeded to lick my mom's hand. Funny, but not my best moment....:) My face was very swollen, and dad took that as an oppertune picture time. Good ole dad... the pics are good for a laugh now.
I had a reaction to the morphine, but oddly, only in my legs. It resulted in a rash that drove me nuts, and I had on those leg compressor things that keep your circulation going, so itching was a bit of an obstacle. (i know, you're not supposed to itch rashes, but i didn't!! I had mommy do it!!)
One night, I had a nightmare nurse...it was the middle of the night, and I was thirsty, so she brought me an ice water. I was on heavy drugs (morphine) and fell aleep, spilling the drink on on myself. (on top of an already cold hospital.) I couldnt get up on my own, and she was not responding to my calls.
When she finally did come in, she gave me a new blanket, but would not remove the old one or get me dry clothes. She said "its good for you to be cold, it fights germs," and then walked away.
Well, I passed out again, and when I woke, i found that miss sunshine had moved my automatic drip button and machine out of my reach, and the pain was so intense I could hardly breathe.
The next morning when my mom got there, we reported all of this to my doctor, who promptly did whatever he had to do to get her fired. Needless to say, I was very happy to go home, and parents, if you can, room in with your kids. The hospital I was at did not allow it, but some do!!!!

[jc3]

amymichele
thanks for the clarification. I got a little nervous about that. Now i understand what you mean. Yes, i'm sure that would make me nervous if my daughter felt so good that she was doing too much. I'm sure i will be a wreck the first time she feels okay to go out with friends or the first day back to school, but i on another hand hope she has such a great recovery and feels so good quick, but i definitely will be nervous. :)
thanks
jennifer

[dapsbounce8]

Hello!
Sorry it took me so long to reply - I've been busy with the end of summer/start of school year stuff. Anyway, my surgery was February 4th, so I'm almost 7 months post-op.

My current allowed activities include roller blading, biking, jogging, light upper body work, and horseback riding (no jumps). I feel pretty much normal, but my back still gets sore sometimes, especially now that I'm back in school and have to carry around all of those books!

I missed about a months of school - 6 days in the hospital. But, for the last two weeks of my home rest I had tutors provided by the school come and teach me.

How old is your daughter jc3? Catching up was a bit difficult for me because I was a sophmore in high school, but if she isn't in high school yet, making up the work shouldn't be too difficult at all.

[jc3]

hi charlotte
thanks for replying. I am glad to hear you are doing well and i can't believe how many activities you are doing already. That is great. My daughter is going into high school this year and will be having the surgery during school. I hope she doesn't fall behind. I guess i will be getting a tutor for her. I will have to talk to the school about that. I really wish she didn't need the ribs removed, but she does. It doesn't seem to bother her, but i keep telling her that it would later on when she gets older.

I am getting nervous, we just got a letter from the surgeon with all the appointments for her pre tests and for her to donate blood. I am going to see if either myself or my husband could donate for her, see doesn't want to do it and the letter also gave us the time of her surgery and what time to be at the hospital that morning. It is becoming real now. I just hope everything goes fine.
thanks again for writing.
jennifer

[Kim]

I understand that a person does so much better in healing and recovering when the blood they recieve is thier own blood. Also a machine that cleans blood is sometimes used for some of the blood loss during surgery.

I understand your feelings as a mother...you will do whatever to spare your daughter discomforts.

Please know I express my concerns...and soon we will be able to be in the cheering corner for you when this is all behind you.

[dapsbounce8]

What are your daughter's concerns about giving blood? It didn't bother me at all. It didn't even affect me - I felt a little bit dizzy the night afterwards, but nothing else.

The school is legally required to provide a tutor for your daughter to catch up, free of charge. I had one tutor per subject. The first week after surgery I was in the hospital, and the second week I still felt pretty weak, but the third, fourth, and fifth weeks I scheduled times for each tutor to come for one hour, once a week. I had a lot of homework to do from the tutors, but I had so much time on my hands that it wasn't a big deal.

When I returned to school, I had a couple of big assignments and tests my teachers wanted me to make up. I did most of these, but started getting really stressed out, so the surgeon's assistant sent out a note to my teacher telling them to give me more time and understand my situation. After that several teachers decided to excuse me from a few tests.

All in all, it wasn't that difficult to catch up. As long as your daughter is a hard worker, she'll do fine. Good luck!

[Kim]

I apologize that my statement was confusing....I am the one that had surgery at age 55. The doctor ask that I give 4 units of my own blood over a period of 8 months before my surgery.

I am a mother of 2 daughters...41 and 31. Just being a mother...you do whatever you can for your own daughter. I think it is wonderful that you are able to give blood for her surgery.

Well Wishes.....Kim

[mumof5]

In regards to keeping up at school.
I let Amber's school know as soon as we had a confirmed date. I had a meeting her year advisor and wrote a letter that he could show to all of her teachers explaining what she was having done, approx. how long she would be in hospital, then how long at home recovering, what her limitations were expected to be etc. They arranged for Amber to sit some of her exams early, some teachers decided to give her a 'make-up' mark. I felt that by doing this it would make them more aware of her needs and for them to prepare work to send home for her. (We had some problems previously in getting work sent home.) The whole school has been wonderful in their approach to keeping Amber up to date with her school work and making adjustments for her when she started going back to school.
Let your childs school know in advance and make sure they are aware of the length of time that will be involved and there shouldn't be too many problems.
Cheryl.

[jc3]

this is to kim regarding the blood donating. I never heard that a person heals better when they have their own blood. I will have to talk to the dr. about that. I don't even know if they would let me or my husband donate. I just got the letter to make the appointment and on it, it said if another family member will be donating make sure you let us know. So i thought that it would be easier on her.
thanks for telling me that though, if my dr. agrees with that then she will have to donate for herself.
jennifer

[jc3]

mum of 5,
tomorrow nicole starts high school and i guess as soon as possible i will notify them about the surgery and make arrangements for a tutor. I would think though the first week she gets home she will not be feeling up to doing work. That is a good idea to write a note to each teacher. I will definitly do that. I am so nervous about all this and she doesn't really talk about it, i don't think she really knows what she is really in for.

dapsbounce8
I guess my daughter is just very scared of needles and that's why if i could do it for her i would rather her not to have to go through with it.
how many weeks were you out of school? and do you take a bus to school, if you do when were you able to ride it again?
thanks everyone you all help very much, it makes it easier to go through this with people to talk to
jennifer

[mumof5]

The first week home for Amber.
She slept, watched T.V. etc.. It was hard enough to get her to get up for a shower, let alone anything else. After that week though she started to get up more and to be 'with it' enough to concentrate.
I think she started to do school work around the end of week 2 home. I was worried about her falling behind, but she hasn't.
Nichole will most likely start to get a little bored and will do her school work just to have something else to do.
Amber didn't talk about her surgery or her back before the surgery. It worried me, especially because we are close and she tells me almost everything, but it does seem to be pretty normal. Try not to worry too much about it, she will be taking everything in.
I took lots of photos before ( all 4 sides) and at the hospital, I photographed everything I could. Amber has really enjoyed seeing these and showing her friends. She didn't remember much about the whole week in hospital and I think she didn't really want to ask, so the photo's answered alot for her.
Amber is also scared of needles, they put her off for the surgery with a mask and put everything in when she was under.
She did not have to donate blood. They gave her 'packed cells' instead.
Best wishes.
Cheryl.

[leyvtl]

Hi, My name is Tiffany
first I wanted to know how your surgery went? I have had 3 scoliosis surgeries. I will explain them to you in another message if you are interested. Surgery is definitely no fun at all which Im sure you've realized by now. I would love to talk to you about it later...

[mumof5]

Tiffany,
How long ago were your surgeries? Why so many? I hope you are OK now.
Best wishes.
Cheryl.

[mamakay]

Hello All,

It's been a while since I posted.
We went to Houston for a second opinion.
Of course surgery but what type, what risks,how long, so on and so on.It seems like there's always something I meant to ask.
For example, the rod type? I have read no mri after a metal rod ?
It's cheaper? Hopefully Dr's call this shot more than insurance companys.
The blood donation.
Rib removal? This Dr didn't mention that part....yet???
How many will assist?
Alot of the answers were the same as the 1st Dr's.
Well I guess I am getting anxious and WORRIED about all the things that face us.
We set a surgery date for Nov 3!!!
My daughter is scared I know but is being brave. She is worried about her spinal cord and how they will not hurt it.
I wish I could get some weight on her.
Gosh I'm sorry to ramble but I just want to say hi again.
Thanks all for the listen ,
mamakay

[mumof5]

There will always be something that you forget to ask no matter how prepared you think you are. Just remember there are people here ready to listen and offer support. November will come around so quick you won't have too much time to worry.
Best wishes.
Cheryl.

[jc3]

hi mamakay
my nicole is also having surgery on nov. 3rd. As a matter of fact they just sent us the time, which is 8 am and we have to be at the hospital at 6:30. She also is 52 degrees and is having rib removal unfortunately. He didn't even give us really the option on that. He said this is what she needs. We can go through this together. They scheduled nicoles pre tests for Oct. 17th. I would like to get some weight on my daughter too. It seems like most of the girls with scoliosis are very thin.
well write back when you get a chance.
jennifer

[jc3]

hi cheryl
thanks for giving me some insight on what to expect after surgery. Did you stay with her the whole time in the hospital? I am planning to. I have my parents coming in from florida for the week to watch my other 2 children. I am so nervous, i just hope this all goes well. I told her that i want to take some pictures before and i don't know if she will want me to. I called the drs office yesterday and asked if my husband or i have the same blood as hers could we donate for her and they said yes so now i have to find out all our blood types, but someone here was saying that they have a quicker recovery with their own blood i don't know if that is true. I am going to talk to the dr. about that. I just figured it would be one less thing for her to have to go through.
thanks again for writing, it really helps
jennifer

[mumof5]

Yes I stayed in the hospital with Amber for the whole 9 days that she was there. My parents looked after my other 4 children.
I snuck a few photo's of Amber. I actually have a photo af Amber bending forwards (was playing with her 3 yr old sister) all you can see of her is her bare back, it really shows the problem. It shocked her to see it, she didn't realise how bad it looked. But she was really good about doing the before and after shots. I told her that later on she would want to know how much difference to her appearance the surgery had made.
In the hospital they let me take photos everywhere. I even have a photo of her with the mask on her face. They put it on her face to let her know what it would be like and so that she wouldn't be frightened. I took the photo, they removed the mask and told her that when they put it back on there would be gas coming out of it.......... It really helped her and I got a great photo that I wouldn't have otherwise had because once the mask went on for real I was holding her hand and talking to her.
If you want a photo of something just ask them. I was told that if you get anyone else in the photo you must ask there permission first. But in our experience everyone was fine. Back in the ward one nurse even jumped in the bed with her. To make her girlfriends jealous he said.
If you yhink of anything that you want to know just ask, I'm only too happy to help if I can.
Best wishes.
Cheryl.

[jc3]

hi cheryl
i would love to get a picture of nicole bending over, i really don't think she knows what her back really looks like or she is just in denial.
thanks for writing me and if i can think of any more questions i will be sure to ask and i'm sure alot more questions will come up in the near future.
thanks again
jennifer

[leyvtl]

Hi mumof5
I had one in 2001, one in January of this year, and then one about 7wks ago. The first one was to correct the major curve in my spine. After that I started curving again above the rod they placed in 2001. That time they put 2 more rods in (total of 3). Then July of this year they took out the very first rod because it was pressing against the main artery to my heart. But, through it all, I am doing awesome with God's help....

[mumof5]

Jennifer, I'm glad I can help a little. I"ll do my best to answer things for you either here or in a private message. Ask away.

Tiffany, Where were you fused during your sugeries? It's a shame you've had to go through it all so many times. Amber's surgeons have said it still is better to stop short and have more surgery than to go to far unnecessarily. You sound like a strong person to still be positve after three surgeries.

Best wishes.
Cheryl.

[leyvtl]

Hi Cheryl,
This is Tiffany. Yes I was fused. I have about 8 or 9 vertabrae that are fused.

[mamakay]

Hello Cheryl and Jennifer and others,

Thank you for you words of comfort,You are right Cheryl there is always something to ask.You are helping all of us not yet thru the surgery side and I appreciate your advice. I hope Amber is still getting better.
Jennifer,
Thank you for wanting to share this unfortunate experience with me. It really does help to know we're not alone.
Yes Nov 3rd and blood wise we are investgating if my husband and I can match her type then donate for her. Our pre op is Oct 21st bc our Dr goes on vacation a week before her surgery and he wants to do a new set of xrays since the ones we have are from June and you know how fast this curve can change.
He didn't mention any "bending xrays" as the other Dr wanted to do if we chose surgery with her. Are you aware of these type xrays?
I think getting a? rib taken out will be fine as they probably can use it for the fusion instead of another incision.
Many people here have had that done and are happy with the results. I don't know why they haven't said anything bc ste's hump is obvious and the rib from what I've read has grown crooked accomodating with the spine and they can't straighten them out.
Also we have to be at the hospital at 6:00am for the 8:00am surgery.
I'm sure I will get alot of sleep the nite before.....NOT!!!!
I'm worried bc we will have to stay at a hotel the nite before so we can be there on time as we are traveling 3 hrs from home for this and traffic can stop for hours so we don't want to be late.
Cheryl didn't you have to travel also?
Also I worry now that we will be sleeping in a hotel my Stephanie won't get a good night's rest and I think that could be important.
Plus!! The weekend before is Halloween and I know my husband will argue with me to let her have a fun (late and crazy) time then she will probably be rundown and catch her 2nd cold of the season like always!!! I know I sound like a worry wart but as a mom THESE THINGS I KNOW.

[mumof5]

Amber is improving everyday and is doing more and more things all the time.
Bending x-rays are done standing up and bending to the side. They do this to see how 'movement' is in the spine. The more movement there is the better correction they can achieve.
When Amber had her last bending x-rays done they showed that she was starting to 'fuse' she didn't have much movement left in her lower back and her L4 was 'quite oblique' which means rotated. But all that said they got better results than they told me they expected to get.
Amber had 5 ribs done to help with the hump. One possibly two haven't grown back as well as hoped and may need further surgery but as far as I know it is mainly a cosmetic concern now. I don't know if that will change or not though. She is happy with the result.
Yes we had to travel. The hospital is in Sydney and if there is no traffic you can do the trip in just under 2 hours. Then you have to find a park. That can take another 30 mins by the time you get back to the hospital. My father drove us down to the hospital. My car is a very sad thing that just wouldn't get that far.
Every time we have had to be at the hospital our appointment times have been between 8 and 9am. Which has meant leaving home around 5am to drop my other kids off with my mum and change cars. You can never pick the traffic.
Amber had to go into hospital a day early as she had to have some extra tests done. It was easier because we didn't have the worry of travelling the day of the surgery.
We didn't get much sleep the night before. Not that Amber remembers. But I think the next night is the hardest because you are already tired but in Amber's case she was in ICU and I didn't want to go to sleep in case she needed me. Silly I know but I'm just a mother.
As for Halloween, we don't celebrate it here so I'm not 100% sure on what goes on, but maybe you could set a strict curfew, Or organize to do something that could become a new family tradition.
Best wishes.
Cheryl.

[jc3]

hi mamakay
i am now investigating also if my husband or i are a match for nicole's blood so she doesn't have to donate. It will be one less thing that she has to go through. in order to find out i had to call the hosptial where she was born and they sent me some papers to fill out and they will mail me my blood type and hers and i have to find out my husbands, i guess for his dr and our next step is Oct. 11 she has to go for all the pretests; mri, ekg, etc.... they scheduled everything for us that day and then three days before the surgery she has to go to the hospital for more tests. My mother knows someone whose daughter had the surgery and as a matter of fact she called me today to talk to me about the surgery and she told me that her daughter's first surgery date was cancelled because the child got sick with a cold or something. So what you wrote about going out on halloween and getting run down is true. i really didn't think of that until she mentioned that to me. That has to be the worst to be all ready for this surgery and then they get sick and it has to be postponed. She also said when they rescheduled she kept her out of school for a week before so she wouldn't get sick.
Also, my dr. did mention when we go back to him that he will do the bending x-rays on her. I don't know what it is for though.
i wouldn't worry about being in the hospital the night before and her not getting a great nights sleep she probably wouldn't at home either. We may do that too, because we have to be at the hosptial at 6:30 and the hospital is alittle over an hour away. I can't even imagine that morning or that night before. I am sick thinking of how nervous i will be.
well, keep in touch it makes it easier talking to all of you.
thanks
jennifer

[mumof5]

I would just like to say that I found the hardest part, as a parent, was while she was actually in surgery. The night before, Amber and I didn't get much sleep. The morning of the surgery wasn't too bad because we keep each other occupied. I was by myself during her surgery and for the first 3 hours or so there was no-one else in that part of the hospital. I couldn't read or watch T.V., my mind just kept wandering and I was constantly looking at my watch. Other people started to come and go from the waiting room, which made me notice even more how long Amber's surgery was taking. If possible try to have someone with you while you are waiting or send sms' (mobile phone text messages) to each other.
While Amber was in ICU and I had to sleep was hard, because by the time I had gotten to my room I couldn't sleep because I was worrying again. I only managed about 2 hours sleep after I had called every one to let them know how she was. After that it was ok because from then on we were in the same room. I still didn't get much sleep because of her being turned all night, when I wasn't too tired I got up to help (I figured I would need to know how to turn her when we got home).
If I can help with anything else please ask.
Best wishes.
Cheryl.

[jc3]

mamakay,
where are you having the surgery? Just curious and i forgot to ask.
also, cheryl I just spoke to someone who's daughter had this surgery and she was out of school for 3 months. That seemed alittle long to me, what do you think on that? I am hoping nicole isn't out that long!!
also, what to bring to the hospital any suggestions. I know it is alittle early on that, but i'm thinking of all these things.
thanks
jennifer

[mumof5]

I don't think it is too early to start planning what to pack. It gives you a chance to get anything you don't have and to help make sure you don't forget anything.
Amber had 7 full weeks off school. She went to school Tuesday and Friday that week then school holidays started (2 weeks). Since then she has been going 4 days a week. Mon, Tues and Thurs, Fri. She has had the occasional extra day off if she has been sore or 'tired'. At first she was just going for as long as she could. The first day I think it was 90 minutes. Now she stays for the full day. She is almost 18 weeks post-op ( on Wed). It is just a matter of building up again. It was very (still is) hard for her to sit for too long.
What to take to hospital.
For the first 3 days Amber was in 'hospital gear'. After that she wore a chemise, with long button up pyjamas with a drawstring waist over the top. To get the chemise off I loosened the straps and she dropped it to the floor. To put it on she stepped into it I pulled it up and adjusted the straps. For about 4 or 5 weeks she could not get her arms above her head. This does depend on how high up the fusion goes. The pyjamas were easy to get on and off with a little help.
Slip on shoes with good grip. Amber found shoes hard to deal with for quite a while. Make sure your daughters have some slip on shoes for when they get home as well.
If you are a reader take books. Amber slept a lot, and complained if the T.V. was on. You will lots of time to yourself for the first few days.
Amber did get a little 'snappy' which caused a bit of friction between us which would upset her because she didn't want to upset me. But everyone gets cranky when in pain. It was one of the things I wasn't really prepared for though.
I ended up buying from the hospital a few pamper things for her. Which would have been cheaper if I had of thought it of before. Leave in hair treatments. All the items needed for a manicure and pedicure. It gave me something to do and made her feel good. Well worth it.
I'll add more as I think of things.
Best wishes.
Cheryl.

[jc3]

thanks cheryl for your suggestions. They were great. I will keep everything you told me in mind. I think today i will call the school and make an appointment to talk to the guidance counselor and the school nurse to let them know about this.
nicole is very mad about having to have the surgery. I just wish this was over already. I am very nervous about the recovery.
thanks again
jennifer

[mamakay]

Hello Cheryl and Jennifer,

Wow thanks for all the info on packing and hospital sitting.
Yes, I have been thinking what to pack bc the weeks are going by fast and like Cheryl and Amber we will not be a hop and skip from home but in case something is needed my mother in law lives in Houston so I know it will be easier for me to have some thing bought and brought to us.
(I'm sorry you had to sit alone Cherly, I'm sure I was thinking about you since I have been reading these posts for many many months.
Just this morning I started a list to begin putting things side. Someone mentioned pillows for the ride home so good thing we have a suburban.
Jennifer the surgery will be in Houston at the medical center downtown. (which is a city in itself!)
(I will be glad to answer more detailed questions if you want to email me.)
She will be out of school Nov-January when school begins again after holidays. We tried to plan it this way.
Iam so concerned about her return as it is high school (10thgrade) and with stairs and crowded hallways I am scared she will get pushed down stairs or smashed in her back since everyone is carrying backpacks thanks to no lockers this year.
I don't know yet what pre tests they will require from us.
We have already had a MRI done on her (neck to feet).
It was a little intimidating bc of the size and noise of the machine but I was able to sit in the room w/her. I think this was important and hopefully as the parent of a minor you can request that.
At least to ease Nicholes fears. Also no needles were involved tell her.
Well I must find about the blood today (I pray we can donate for her.)
Sorry for the long post..
write again and take care all, Kay

[jc3]

hi kay,
i figure nicole will be going back to school around that time also. My worry is also getting bumped in the hallways and i guess she will not be able to ride the bus to school in the beginning so i will drive her. I called today and spoke with the guidance counselor and she told me that it is good i called now so they can get the ball rolling with the tutors. I have to have the dr. fax a letter to them saying approximately how long she will be out and they said when she comes back she will get a set of books for home and an elevator key. this i am worried about also, my daughter is petrified of elevators, so i don't know if she will go in it. You know those school elevators look like a hundred years old as it is. so we'll see about that. That should be the least of my problems.
how long did the mri take? Nicole had one when she was first diagnosed with scoliosis and she did fine with it, but i think this one may be longer and more involved.
thanks again for writing, keep in touch
jennifer

[mamakay]

Hi Jennifer,
I don't know if she will have another MRI or not. Ste also had hers in the very beginning when diagnosed.(June 2004).
It took aout 2 hrs max.Is that how long Nichole's mri was?
I wish I knew what pre-test things will be needed. I don't think we will know untill our visit 2 wks before surgery and all I know is that is when they will expect blood.
What if we are not the right type?
What kind of X-rays?
How do I know what anesthesologist to choose?(I have to pick from a list!!)
etc..etc...
Seems like alot to figure out in one day.
My head is starting to spin with all this happening now.
So I have a call in now about all our blood types. What have you decided on that subject?
Also I know my baby gets upset about the surgery too but I told her she will have so many presents to open it will seem like Chrismas.
My motherinlaw gave us the idea and is also giving her a present for everyday she's there to open.
Maybe that will help Nichole feel better about it if you want to try that.
Yes those elevators look and at our school probably are 100 yrs old!Plus they are gross from all the construction and guys that use them for that.... She'll probably take the stairs and not tell me.
I guessI better call the school and get the ball rolling from what you said they need to know now.
Thanks for writting,Kay

[Bill's mom]

Mamakay,

I thought I just posted something to you but have no idea what happened to it, so I will try again. (My apologies if this ends up being a duplicate post.)

My son is 15, was diagnosed in June, and is also scheduled for surgery on Nov. 3rd. And we have to be at the hospital at 5:30 a.m.!

He is having his surgery in San Antonio. I was wondering why you decided to go to the Medical Center instead of staying in Austin.

Susan

[mumof5]

The week before Amber was ready to go back to school I went to see her year advisor and deputy principle of the school. They suggested that Amber leve class a few minutes early each lesson and / or she could arrive a little late so that she would not be in the hall ways when they were crowded. They also gave her an elevator pass and made a special exemption for her to have a locker. I think as long as you keep them informed they will do their best to help make thing easier and safer.
Amber came home from hospital in a patient transport ambulance, which was good because she got to lay down for the whole trip.
It seems like you have so much to do but you will be suprised how smoothly and quickly it will all go. There are a lot of people around waiting to help, you just have to ask.
Best wishes.
Cheryl.

[mamakay]

Hi Susan,
My motherinlaw lives(my husband is from there also) in Houston and asked her Dr for a name since we were trying to get more than one opinion.
At first we went to a pediatric ortho here, then to another Dr in the same practice.
Then the other group of Dr's in this town that we have heard high marks of does not take our ins. So as a result of getting one more opinion outside practice here,we found this Dr in Houston and felt his practice deals with more cases on a monthly bases.
Does that make sense? I'm sure the surgeons we talked to here would do a good job but it 's not that far to Houston from here and I was impressed by all the medical world there. Also he did not expect to have her in icu either, his practice was inherited from the Dr who invented the Harringtonrod.
It's hard to know if we've picked the right Dr for our child's life .
I would still like to go to Dr Kurt von Ruden as many people have and Dr's have told me he is a very good surgeon, but again the ins thing.
We considered S.A. bc I'm sure they have a big medical area there too but had no name to go on. I guess we could go on more "opinions but I don't see any reason to keep stressing my child out if we've made a surgery date.Besides they are at a point where the x-rays are not up to date enough and also want to do more of those, which I find uneasy to keep subjecting her to.
So long storey but that's about it.
How did you decide on your surgeon? I read there are somethere from the srs site.
Did you know Carmell flew there from a long way for her son's surgery too! I think he was an infant and the Dr may have retired now.
What is the degree of your son's curve?
Is he in high school?
Are you having any ribs removed?
What does he feel about all this and is he in any sports?
You are the 3rd person to say your childs surgery is on Nov 3rd also!! We must stick together here!!

Write when you can..Kay

[Bill's mom]

Hi Kay,

Everything you said makes sense. I just was curious about the travel. We live in New Braunfels and it seems we are going to San Antonio on a regular basis (additional x-rays, his MRI, follow-up appointments, a pulmonologist, etc.) I’m grateful to not be driving to Houston on a regular basis. (We used to live there.)

We were referred to our doctor by our pediatrician. He seems very competent and confident. I do question whether anyone ever feels 100% comfortable with a decision like this, but for the most part we are at peace with the surgery with this doctor.

Yes my son is in high school – 10th grade. He’s a very bright boy but a horrible student so I think he’s looking forward to the time off from school. Last night was open house at the high school and I spoke with each of his teachers about his upcoming surgery. They were all very supportive. Additionally, at the time of his diagnosis, I emailed his academic advisor and she told me that he will be eligible for a home study program that will send someone to our house four hours a week. The week of surgery I’m sure he’ll be too out of it, but after that I’m sure he’ll think this tutor stuff is the way to go. His doctor told us he’d be ready to go back after Thanksgiving. I don’t really believe that, but it’s encouraging.

Early on, Bill said he’d rather live with this than have the surgery but he’s going along with our decision. He seems OK with the whole thing although I think he just doesn’t think about it. (How he can do that is amazing to me.)

He has an S curve with one curve at 53 degrees and one at 28 degrees. He will not need to have any ribs removed. We’re still debating what bone to use for the fusion. The doctor has left that decision up to us. More and more I think that we’ll go with cadaver bone since his fusion will be long – T3 to L3. We are planning to have him donate at least one pint of blood. I work with someone whose daughter had this surgery in June and he said that their doctor felt it reduced the risk of any additional infection if their blood is used. How he does after the first donation (needles really freak him out) will determine if we try to get him to donate more.

He was diagnosed with asthma several years ago and hardly ever has problems with it, but because of the condition we went to a pulmonologist a few weeks ago to make sure his lungs were OK for surgery. We were amazed to learn that his scoliosis is affecting his lungs. One lung is smaller and the other is compensating. What a shocker. That definitely confirmed that we need to proceed with the surgery as planned.

So that’s where we are. (Pretty long answer!) Our next appointment with the pulmonologist and the surgeon is on 10/4. And, like most people on this board, we continue to pray for a miracle.

Keep in touch. (I haven’t posted very often, but I monitor pretty much daily.)

Susan

[jc3]

i can't believe there are three of us whose children are having surgery the same day. I know this is great support for me. Thank you all so much. I can't imagine not being able to share and ask questions. I talk to friends about it, but i don't think anybody really understands how big of a surgery this really is.
susan, i understand you contemplating which bone to use for the graft. In one sense you probably want to use his own, just because it is his own but also i understand it is one less pain he will have to go through. They say the graft is painful. I can't believe that the scoliosis is affecting his lungs. My daughter has a large rib hump, which means her ribs are rotating. I am curious to find out if it is effecting her lungs. I will find out i guess when she has her pretest at the pulmonologist on Oct. 11th.
cheryl,
how were you able to get amber to come home in the ambulance? That may be something to look into.
kay,
i don't think nicoles mri took that long, but it was quite a while. It was about 2 years ago, but they said they need a new one before the surgery. I thought since she already had one we wouldn't need a new one. They scheduled all her pretest appointments for me all in one day, which is the ekg, echocardiagram, mri, pulmonary function and one other one, which i forget. I would ask the dr. which anesthesologist they recommend, instead of just choosing one off the list. i think with the blood if my husband or i could donate we will do it for her, but i'm not sure yet. I will let you know what we do on that. My head is also starting to spin. That is a good idea with the presents i know my nicole would love that.
did you call the school yet? Don't forget to do that.
susan,
That makes me feel alittle better that your dr. thinks he may be ready to go back to school after thanksgiving. That is a big worry of mine, i just want her not to have a long recovery.
I wish this was all over already and it was next summer already.
thanks everyone
jennifer sorry this is so long

[mumof5]

Everyone recovers at their own rate. I know you 3 are going to 'compare notes' the whole way, but just remember that different length fusions and different people will heal differently. There are a lot of things that will determine how quickly they heal and it's not just the physical healing there is also the mental aspect.
In Australia we have ambulances that are mainly for taking patients from one hospital to another. When we saw the doctor that did Amber's surgery I said to him that we would be dropped off at the hospital and we would be left there with no transport. My car is a little sick (has been for months) and wouldn't make it that far, so my dad planned on taking us down there. I said to the doctor that if we couldn't get someone to come and pick us up we would have to use public transport to get home. That meant a bus from the hospital to the train station. A train into a different part of Sydney to get on the right line. The a train into Newcastle, then a bus home. All up taking about 9 or 10 hours. He just looked at me and said she can't do that we'll organise something.
They use the patient transport a lot for older people with no transport to get to and from hospital for tests etc, so I knew that they could be used for getting people home. I wasn't sure if we would qualify or that they would go that far. The only way to find out is to ask. I mean they can only say no.
A lot of doctors have a 'team' that they like to work with. I think it is best to ask the surgeon which anaesthestist they like to use.
Best wishes.
Cheryl.

[acl_04]

Well, for me, the worst part was either... Being in ICU or not being able to drink for the first couple of days. I stayed in ICU longer than I was supposed to (4 days) and I didn't like it because it didn't give me a lot of privacy and it was sort of stuffy and loud. My mouth was SO dry those first couple of days when I wasn't allowed to drink. My dad would say: "Oh, well, I'm gonna go and get a SODA." and I'm growling at him, because at that time I would kill for a soda. After ICU, I got to move up to the rooms with only 2 people in it. First there was this quiet girl... Then she moved and then my roomate was a cute 3-year-old Hispanic girl who was in a lot of pain during the nights (Ah, the nights, they took my vitals every 2 hours, which was kind of annoying, and they asked me on a scale of one to ten, what was my pain level). I didn't like turning either. It hurt a lot. AND, since my bowls didn't work, I felt really bloated and my stomach was so round! As I got weened of the morphine (which I got to press a button for!!) I started taking medicine by mouth. Then, the physical therapist (who was WAY too happy) came. First I sat up in bed. Sat on the side of the bed. Stood up. Walked a couple of steps (using walker). Walked to bathroom and back. Walked to chair. Walked up and down the halls. And finally, walking up the stairs. I accomplished all that, and after a week in the hospital, I got to go home!!!! I started wearing a brace 23 hours a day. I just kept laying down the entire day, reading, watching TV... Some of the nights I woke up, but now, I still wear the brace (my surgery was the 25 of August), I'm still not allowed to go to school (October 11, they said), but I'm doing my homework! Since I had two high-degree curved, when they were straighten, I was 1 and a half inches taller!!!!! I was so happy! Then, I noticed that the shoulder blade that used to stick out didn't stick out anymore, and my butt didn't stick out, and now that I'm taller, I actually look thinner!!! I keep thinking, even though I can't DO anything like sports or PE, this is all going to pay off (In a way, it already has). So I hope you weren't nervous, because it's ALL worth it. :)

[janneboud]

I have a question also. how do you go to the washroom? it it in a bag, or in the washroom??? :confused: Just trying to find out what I can.

[xLinda]

During the surgery, after you've fallen "asleep" you should have had a foley catheter put in (I think that's what it's called). This is put right into your bladder, so you won't have to get up to go pee. As for number 2, you probably won't be going for the first couple of days seeing as you're system is still waking up. By the time you do need to go, you should already be up and walking and the catheter would most likely be out by then so you'll probably be able to go to the washroom...but it'll be a bit hard =/

[janneboud]

thank you xLinda