Hi Everyone

[gabbysmum]

I am new to this forum although I have been following an American forum similar to this one all year. It is wonderful to see an Australian one.
I am a mother of a 14 year old. We discovered her scoliosis on her 14th Birthday this year in Feb. Since then we have spoken to many people.
I havent stopped reading about scoliosis since February. We have looked at just about every alternative therapy. Then we made our decision with Gabbys help.
Gabby is scheduled to have her scoliosis surgery on the 1st of December in Brisbane.
I have a friend on this forum, Jen, who has been so helpful and supportive. We have the same surgeon. So she has helped me feel confident we have made the right choice.
I realise you cannot name surgeons. But I would love to shout to the world about this one. He is such a GENTLE MAN. He has been so compassionate and understanding. It made our decision alot easier.
We have definately gone through the five stages of grieving and are now at "acceptance' and are ready.
Forums are wonderful places and I cannot wait for this one to get into full gear.

Australia..... wake up! Why is there no longer testing in schools for scoliosis. This is a condition that if discovered early enough can be treated.
We didnt find Gabbys until it was too late.
If only there was more awareness out there.
Please post. We need to get this forum alive!!! It will help us Aussies being affected by scoliosis.
Regards
Donna.

[Rodverta Braefusion]

Hi Gabs Mum,
Welcome to the forum. I thought I recognised the name. I'm hoping this forum kicks off as well.
Good Luck with everything.

[Scarlet-Sunset]

We only just discovered this site yesterday. My 16yr old daughter is having her surgery on 5th December in Brisbane too. My daughter and I were both shocked at the beginning of the year when the first specialist we saw said surgery was the only option. We went to another surgeon who did say the same thing, though had a more gentle, caring approach so have decided to go with him.
We are both very nervous about the big day, and have many worries - just like all the other patients and their parents. It is good to find a way to contact others in the same position. Not just for us mums, but for the girls so they can talk to people who are feeling just like they are.
Hope to talk again soon.

[gabbysmum]

How is your daughter going? Is she prepared.
I guess she is coping similarly to mine. Good days and bad days hey!
We are starting to get orgainised now.
I put a couple of memory foam mattresses on layby at Target the other day because the people on the American forum commented on how wonderful they are.
I am looking into what to do about minimising constipation now.
I have read that taking "movicol" a few days before the op helps alot.
Aparently the constipation can be the worst.
Have you checked out the American forum. It is full of wonderful information. I am hoping that our forum will one day match up.
Keep in contact.
Regards
Donna.

[Jen]

I agree, the constipation can be worse than the surgery if it goes on and on. The hospital gave me everything in their repertoire but nothing worked. A friend brought in some Nulax (from the chemist) and it worked within three hours. This was Day 9 for me.

[Scarlet-Sunset]

HI again,
I am glad you mentioned about the memory foam from Target...I am going to have a look at them today. Hadn't really thought about L's bed, but I guess when they come home from hospital, their bed needs to be super comfy. L has had the same bed for many years now, so probably not fantastic.
Yes we are both having good and bad days. It all seems unbelievable that she has to have such a big operation. I fear the time of the surgery...the waiting around, wondering how it is going. I noticed on the American site, that you have the same surgeon as us (Gabby) so we might even get to meet. (L's on the Sat)
The doctor had mentioned about the constipation. Sounds like we need to be armed with all that we can to alleviate the problem.
Great to have this contact point!

Bye for now.
:)

[gabbysmum]

Hi,
I was wondering about that. (If we had the same surgeon.) Another mother that I have spoken to that had the same surgeon operate on her son said that the staff at the hospital have an extremely high amount of respect for him because of is bedside manner and of course his skill. I think we have both made the best decision with choosing him.
Perhaps if Lauren is up to it the two girls could swap contacts and have a chat.
I asked Gabby how she feels about talking to another girl that is having the operation a few days after her and she thought it would be good.
As long as Lauren feels comfortable.
We are admitting Gabby on the Monday and she is first up on the Tuesday.
I am so far behind being prepared. I really need to write a list and start crossing things off. Jen sent me a wonderful list to use as a guide which will help alot.
Donna

[Alexandrasmum]

Hi all,
I've just been made aware of this forum and have just read some of the posts. My 13 year old daughter is booked in for surgery on the 7th Dec in
Brisbane. We too only discovered her problem around 6 months ago and were shocked and devastated by this. My daughter is resigned to the fact that surgery is the only option for her and she's keen to have it over and done with. The hospital staff have been wonderful and the doctors fabulous. Am keen to get any tips on after care from anyone. I can't believe a simple test taken in years 5-7 at schools isn't implemented thus saving the heartache for all included ! Looking forward to sharing thoughts with all of you. Jo

[gabbysmum]

Hi Alexandras Mum,
Well it looks like we have 3 December surgeries, all in Brisbane.
Alexandras, Laurens and Gabbys.
I would love to be able to give you heaps of information in preparation, but I am flying blind here.
I guess if you ask a question on the forum I know of at least 3 members that may be able to help.
You are right in saying that there should be scoliosis testing in schools.
I want to video Gabbys operation and send it to Anna Bligh. Perhaps she will consider it then.
I certainly want to get on the bandwagon about this and I probably will eventually, but right now my whole focus is on getting Gabby through this with the least amount of pain and mental anguish as possible.
Stay strong and keep in contact. Talking to people affected by scoliosis will help so much. That is what I have found anyway.
Hope to hear from you again
Regards
Donna.

[Rodverta Braefusion]

Welcome to the forum Alexandras mum.
To all the mums, if you have any questions in regards to surgery, pre-op, post-op, whatever it may be, just ask. I had surgery on June 1st, 2009,
T11-S1 posterior and anterior fusions at L4/5-L5/S1. I'm no expert, but i can only offer you guidance based on my experience. As a parent, i know all too well about helping your children and so, if i can help you in any way, please ask.

[Scarlet-Sunset]

HI All,
Your words Jo, that you were shocked and devastated is exactly how we felt too. It is not that I didn't know about Scoliosis (a friend many years ago had a daughter diagnosed, but it wasn't severe), but as Lauren was maturing, (a bit later than some girls) I just didn't notice the hips, shoulder blade etc as she was always covered up. Even swimming, my kids have always worn sunshirts, so that too hid the problem. Yes, if they still had checks in the schools like we did many years ago, this may have been noticed a lot earlier.
As far as asking questions ... I guess I just want to know what we can possibly do to make everything as comfortable as possible for Lauren when she comes home. I am assuming that in the early weeks, lying around in bed most of the time would be expected? I was hoping when the Doctor sent out info to us it might have included some info about returning home after the op, but there was nothing. I thought that seeing there are many young people going through this, it would be good to be given an information booklet. What to expect, like handling dressing, showers etc. Any thoughts?
Bye for now,
Judy

[Rodverta Braefusion]

Hi all,
Most time is spent in bed. In fact my surgeon said, "if you are not walking, you should be lying in bed". Sitting is not allowed for more than 10 minutes (or just enough to have something to eat-check with surgeon, they all differ).
If your dressing was removed in hopital and all is well, you can shower. Someone must be nearby, when your in the shower. Due to the pain medications being so strong it is advisable in case of dizziness, sometimes assistance may be needed for hair washing. Assistance maybe required drying (back or hair) and dressing (underwear etc). No heavy lifting, twisting or bending. Appetite may be little, to keep up strength, I took whey protein smoothies. Drugs can upset you bowels (constipation). Prune juice, stewed apples or fibresure in the smoothies can be helpful. If all else fails, try coloxyl.
No sitting in sofa chair or any type of slouchy chair. A chair with armrests (if you have one) is very handy. A toilet raiser seat. These two items are handy because the leg muscles become very weak. A couple of grabbers just in case something falls on the floor and you need to pick it up. My mind has gone blank now, will post again if i remember more.

[gabbysmum]

Hi,
What about a recliner. We are thinking of getting one for Gabby.
Thanks.

[gabbysmum]

Hi Judy,
I have sent you a PM.
Donna.

[Rodverta Braefusion]

Hi Donna,
Iwas looking forward to using my recliner (new modular delivered just before surgery has three), but was told I couldn't. I told them, that it reclines pratically into a bed, but they still said it was not a good idea. My advice would be to check with your surgeon or speak to the PT at the hospital you are going to. I was looking forward to playing games and watching Fox during recovery - ah well, its all good now! By the way Donna, what levels are being fused? Have a great day!

[Scarlet-Sunset]

Hi,
Thank for the info re lying in bed. How long did that last for? We are considering buying a table on castors for Lauren so she can sit and have meals in bed/play games etc. Looks like the 'games' might be out for a while.
Lying around in bed, especially in summer will be rather hot! Lauren doesn't have an air conditioner in her room. I guess she could go in our room during the day if the days are too hot.
The grabbers sound like a good idea. Where do you get that sort of thing?
FYI Lauren is having a T5 to L3.
Regards,
Judy

[gabbysmum]

Hi Judy,
You wont believe this but that is exactly the levels Gabby is having.
Her curves are 58 and 54.


So what about a lounge chair. Just laying flat on a 3 seater, i mean.?
We were kinda hoping our rumpus room, which has an aircon. would be like her recovery room.

I thought I would check out a couple of chemists for a grabber.

Donna

[Rodverta Braefusion]

Hi Donna & Judy,

The lying in bed lasts for at least 6 weeks, which is about when you see your surgeon for a post-op visit. He will then advise you further.

As for the grabbers, you can purchase them from Bunnings for about $10?
Mine is called - Craftright pickup and reaching tool.

As for the lounge chair, personally I would think it great, however I never asked due to the fact they said no to the recliner. I think its more to do with the fact that your body sinks into it.

The trolley would be a great idea, however, I was told to not sit in bed to eat, but to perch on the side of the bed, so as to keep a lumbar lordosis. I am fused T11-S1 and am not allowed yet to sit at a 45 degree angle, which is what sitting up in bed would be. Once again check this out with the discharge nurse or surgeon.

Thanks
Vali

[Alexandrasmum]

Hi girls.
Thanks for all your after-care tips. Thinking of moving my eldest daughter out of her downstairs room to make way for Alex. It has aircon and a TV perched up on a stand - hopefully she'll be able to watch it whilst lying down all day ! Besides it's near my home office and not too far away from the all important kitchen ! We take for granted the fact the kids can just run here and there and it will be a task to try and get things comfortable for Alex so that she's not stressed out anymore than necessary. I agree that there should be an aftercare booklet provided. I'm going to follow up on this with the hospital and see if we can't get this done for future patients.
thanks for all your insights it's much appreciated.
JO

[Rodverta Braefusion]

Hi Jo,

You may find that the hospital may in fact already have a booklet. The hospital i went to gave me a booklet at my pre-admin appt, one week before the big day. ................Hospital Patient Pathway - Spinal Fusion - Anterior/Posterior. This gave me a day by day account of what was going to happen post-op in regards to excercises I was expected to do hourly, when the physio was coming in, the surgeon visits, when the dressings come off - I'm sure you get the gist.
On discharge - another booklet was given to me entitled - Discharge Information for patients who have undergone spinal fusion. I was also given a two page instructional sheet by my surgeon, with the required fields filled out specifically for my care at home.
If you have any questions, please do not hesitate to ask.

[Alexandrasmum]

Thanks for the info. I did receive a " Parent Info " booklet today in the mail stating what will happen after surgery but nothing yet about at home care - so i'll be on the lookout for that. Not long to go now - just have to give Alex the news about no mobile phones in the room - mmm 13yr olds would love that news ! Now all we have to do is find some night wear for hospital. Can't figure out if she'll need a nightie or shorts and top or just a pair of undies ? Can you give some adivce on this?
thanks
Jo

[gabbysmum]

Hi Jo,
Well I went shopping last night for Gabby for clothes for hosp.
I tried to convince her to buy loose clothes but she wouldnt and we ended up buying singlets etc. Just normal pjs. Long pants and tops.
I figured if we havent the right things I am sure Big W or KMart will only be a train ride away.
Can I Pm you about the surgery details. Just wondering if we all have the same surgeon.
Regards

Donna.

[Rodverta Braefusion]

Hello Ladies,

The singlet top is a great idea, because for a couple days you will be attached to possibly a drip for fluids. I also had an IV in my other arm for antibiotics,
a drain in my spine and a catheter until you can toilet on your own. My suggestion would be a long t/shirt type nightie until at least the catheter is removed, then you can wear pants/shorts as well.

I was allowed mobile phone in hospital. whats their reason for not ?

Tip for when coming home for the mums. Grab a slippery satin pillowcase or similar. This is so when they get in the car, they can sit, then turn without too much effort or hurting themselves.

If you require any questions or queries, please do not hesitate to ask?
Glad to help.

[Scarlet-Sunset]

Hello All,
We bought Lauren's nighties from Best and Less, which are like long tshirts as you suggested. The dresses we got for when she comes home (usually a tshirt & shorts kinda girl) just go over the head - no zips up the back etc.
The satin pillow case or the like sounded a good idea. I wondered about the trip home in the car and how awkward it will be.
Is it just the drip for the first few days, or are you able to eat?
Lauren is a very slim girl, not weighing a great deal, so I guess she will probably loose some weight in hospital which would be a shame. I've been trying to encourage eating up big to fatten her up before the surgery, but she just isn't a big eater.
Thanks for all the tips you are giving us 'Rodverta'.

Regards,
Judy

[Rodverta Braefusion]

Hi Judy,

Thankyou for your appreciation.

With regards to the shorts, she may be able to wear them after a couple of weeks, but get the kind that has ties not elastic. I found that when i put on my elasticised trackpants (it was June - Winter), I sort of walked a little hunched over but not with the other kind, because i could wear them fairly loose.

Oh, i nearly forgot, she may also have tubes in her nose for oxygen delivery because of the strong pain medications.

In regards to the eating, she will be allowed to eat, as soon as they hear 'bowel sounds' (passing wind, stomach grumbles), could be as early as day 3. I started with stewed fruit, fruit juices and yoghurt to keep it light.
You don't eat alot. The pain meds sometimes make you nauseas (sp?).
When she gets home, she may still not be eating alot, so try some smoothies (if she likes them) with whey protein, strawberries, milk or icecream.

On the way home - easy does it. There ae some things you juwt can't avoid (potholes). Hope you are not too far from the hospital. Mine was a fifteen minute ride home, I just cushioned myself with cushions.

If i can help any more please let me know.

[jess's mum]

Hi All,

I have just become aware of this site and my 15 year old daughter had surgery in Sydney on OCT 20 this year. She was in hospital for 11 days and had her ups and downs and since we have been home she has slowly been moving more and each little thing that she can do on her own now is a big thing. They do go through a lot of pain expecially once they come off the morphine drip and they go on tablets. We had the best care in the hospital and the best Dr. The time at home afterwards is hard for them until they start to become more mobile and go out after the 6 week period. Good luck to the girls about to have surgery, it is worth it

[Rodverta Braefusion]

Hi jess'mum

Welcome to the forum. Hope everything is progressing well.
what were her curves?
It does get better (healing) but it does take time.
Pass on my best wishes of a speedy recovery.

[Alexandrasmum]

Hi Jess's mum .
Thankyou so much Rodverta - we're lucky to have you on this forum :)
I just bought Alex a nightie with adjustable straps so that she wouldn't have to put her arms over her head to get it on - we did a mock test in the shop and i found that those loose jersey nighties were really easy to slip on an off. Thanks for the tip re - satin pillow. I've got an hours drive home to the Gold Coast so any tip for the drive home is welcome. Alex like Lauren is very slim as well and i'm not looking forward to her loosing anymore weight.Eating sometimes seems a task for her ( as i think most 13yr olds ! ) --- nothing ever tastes good ! So I'm hoping to try to convince her to " fatten up " prior to the op as well - wish me luck .
Not long to go now - getting a bit nervous but i know it will be fine in the long run.
Donna you're most welcome to email me .
regards
Jo

[Scarlet-Sunset]

Hi All,
It is good to see more people discovering the site.
Hope Jess is progressing well. Hope you don't mind... wondered if I could ask a few questions. Lauren (16yr old daughter) is having her surgery on 5th Dec. I feel we are going into it still not knowing quite enough. How soon did they get Jess up walking? 11 Days was quite a long stay in hospital, did she have complications? I have wondered about the adjustment to when they are taken off the intravenous medication. We have been told she will have an epidural in for 3 days so thought it might be quite difficult when they comes out.
Jo - I can understand you getting nervous. I sent you a PM a while back.
How is Alexandra feeling? Has she had any contact with other girls...it might help her. I know Lauren likes talking to Gabby as they feel the same way about the surgery.
I contacted our hospital yesterday and they were surprised that our doctor hadn't given us a handout about what to expect after spinal surgery. I do wish we were a bit more informed. I am wondering if Xmas day will have to be spent around Lauren in bed, not that that is a problem if needs be.
Bye for now,
Judy

[Rodverta Braefusion]

Hi to all mums,

Walking is initiated the next morning, starting with a few steps increasing to walking the halls in the hospital. The aim then is to achieve at least 30 minutes everyday, within 4-6 weeks after surgery. It does not have to be all at once, can be broken up. If you are able to walk for an hour per day, you can. Use commonsense, if pain is aggravated then spend more time resting.

They can lie on their side or their back, whatever is comfortable. In fact the nursing staff came in to change my position every two hours.

Exercies done, were Deep breathing & coughing, ankle exercises, hip and knee flexion, abdominal bracing. You get shown how to tighten your abdominal muscles, to help you move in and out of bed, how to transfer from a side lying position to a sitting position, how to perch sit, so that your knees are below your hips.

If i think of any more, i'll post later, have to run an errand. Be back soon.
Post any questions and i'll see if i can help you further. By the way, the above was taken from the handout i was given by my surgeon. You should always check with your surgeon, nurse or physio, what is required for your care. Just thought this may be a little help.

[Rodverta Braefusion]

Hi Donna,
in case life gets a bit hectic this week, I just wanted to pass on my best wishes to Gabby on her surgery on Tuesday. To you Donna, I know how hard it can be sometimes to be a mum, but hang in there. Its a tough hurdle for you and your family, but you will get over it. I'll be lighting a candle for you all. Once again, Good Luck. Let us know how she went after the surgery when you can.

[gabbysmum]

Thanks Vali,
We are in hospital right now. She is having an MRI as we speak.
She is nervous but on some drugs which are helping.
I am very nervous and anxious and just hope from the bottom of my heart that i have made the best decision.
This is very surreal and we cannot believe we are here going through with it.
I am just praying heaps and hope the "big fella upstairs" comes through for us.
Gabby went to a youth group night on Saturday night with another girl.
She told me she met a girl there that has spina bifida and another brain disorder. In total so far she has had 36 brain operations and more to come.
She said she is happy and positive and that meeting her helped her feel better about this.
We will keep you all in touch.
Thankyou for everyones prayers and please keep praying.
Lots of love
Donna and Gabby.

[Alexandrasmum]

Hi Donna and Gabby. Hope all is going well -- my thoughts are with you both.
Please let us all know how Gabby is doing.
Hope Lauren isn't getting too nervous now. Let us know how she goes when you can. We went shopping for another nightie yesterday for Alex- seems to lift her spirits somewhat.
Getting nervous now but determined to keep positive and smiling !
Jo

[Rodverta Braefusion]

Hi Donna,
Hope everything went well and that she is resting comfortably.

[Rodverta Braefusion]

Hi Jo,
Sorry i'm late. Best wishes for Alexandra on her surgery today. Hope all goes well. Please post as soon as you can.

[Godiva]

Australia..... wake up! Why is there no longer testing in schools for scoliosis. This is a condition that if discovered early enough can be treated.
We didnt find Gabbys until it was too late.
If only there was more awareness out there.
Please post. We need to get this forum alive!!! It will help us Aussies being affected by scoliosis.
Regards
Donna.

I was tested at school (Russia) at 10yo and nothing was noted but managed to develop a 30degree curve within 3 years upon moving to Australia. Some curves can be very aggressive. It is sad that most people don't even know what it is here!

[Alexandrasmum]

Hi everyone. Well it's just now i've had a chance to get back to this site. Alexandra had her op on the 7th Dec and is now recovering well. It was a harrowing experience , however the positive outcome will over time outweigh the negatives. Alex is now taller by a couple of cm's of which she is rather happy about - no doubt as she's now taller than her mum ! The hospital staff and doctors were fantastic but we were happy to leave after 7 days. Alex managed her meds at home quite well and is now off everything except for something every now and again. We've been on a couple of " mall " outings which last around 30-40 mins at a time. Her scar is very fine and has healed remarkably well. She feels not too bad but has described herself as feeling as though she is constantly carrying around a heavy backpack. I guess over the coming months her back will strenghten and she will cope a lot better. Her mood is rather depressed as she can't go out of the house for any long period of time and she must have watched a 100 movies !! Once she get's back to school at the end of the month i'm hoping she won't focus on this so much. Thankyou for everyones imput over the last month it was very helpful.
kind regards
Jo

[Rodverta Braefusion]

Hi Jo,
Good to read that all went well with Alexandra. Great to also read that she is off all pain meds. How does she like her new height?I noticed in your post, you said she is becoming a little depressed, with not being able to go out more. Is this because she is tired or doctors orders? Will she be returning to school fulltime immediately or gradually. Those bags can be damn heavy! I would also like to take this opportunity to wish you a late Merry Xmas (hope you had a good one) and a Happy New Year, may it bring you wishes of health, wealth and happiness.

[Alexandrasmum]

Hi Rodverta,
Best wishes to you also for the New Year ! We are going to have to take each day at a time with schooling. She has told me that sitting for any extended period of time is a "no go". I'm sure her on off sour moods will disappear when she starts to interact with her school friends and she won't be depressed about not being able to go to the movies etc because of the nagging pain. These have been rather long protracted school holidays to say the least. Anyway it's a pity none of the other mums have come online as I would have liked to hear from them. Hopefully we'll hear from them at a later point. Meanwhile take care.
kind regards Joanne

[kaitlins mum]

Hi Joanne, yes i remember Kaitlin was very up and down after her surgery. It actually took about 6 months until the moods evened out. I wasnt sure if it was the age or the surgery!! Am sure things will be better once school goes back. What are you going to do about the heavy school bag? Kaitlin refused to take a wheely bag and i got her friends to take it in for the first few weeks. Now the thing weighs so much i must admit to worrying about it! Take care , Melinda

[Rodverta Braefusion]

Hi Kaitlins Mum!

Hi Jo, good to 'read' from you again. I hope Alexandra cheers up soon. I make it thast she is about 7 weeks post-op. I remember the eight week mark being a significant turning point for me. Hopefully going back to school should see her spirits lift. Does she still have a 10minute time limit for sitting? I found the more i sat down the worse i felt. Laying down or walking was the best for me. Hope she keeps on improving! Keep us posted.

[Scarlet-Sunset]

Hello people,
I am Lauren and I had my wonderful surgery on December the 5th. I am quite good except for that I get spams of pain. I really want to talk to Gabby but we couldn't find her phone number for a while. I have a backpack which seems to get really heavy but I'm not sure how any why. Sometimes I feel really lonely because none of my friends really can get how I felt about the surgery and comprehend how massive the surgery was. I hope all is well with the others whom had surgery and sometimes I wish I was still in hospital because then I could walk to see Gabby :(

[Rodverta Braefusion]

Hi Lauren, sorry to read that you are a little glum. Hopefully Gabby pops up somewhere on the forum. In the meantime, if you wnt to talk to someone about your experience, just pour your heart out on the forums. I'm sure we can all give you a little 'pick me up'. so long as you don't mind adults chiming in! To me whether you're a child,adol or adult, surgery is all the same - only that kids heal faster! Cheer up Lauren! Positive thoughts = positive outcomes!
Best wishes

[Scarlet-Sunset]

I'm curious does anyone who have had the surgery get the spasms of pain? Like someone is stabbing you in the back with a knife? I get it at school and the chairs are really not helping. Lying on the ground helps but then I look like a hobo. Any suggestions? :confused:

[Jen]

Most patients of scoli surgery seem to get muscle spasms and there is medication (Lyrica being one) that helps to control these. I think they disappear with time. I did not get any spasms so I'm no expert, but I am sure your surgeon or GP can help you with those painful spasms.

I heard a few times from Gabby's Mum but my last email went unanswered so I am also wondering how she is. Let's hope she's well and just getting on with life since recovering.