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Old 02-03-2011, 09:57 PM
Rach's mum Rach's mum is offline
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Post Waiting for a surgery date

Hi everyone,

It's been a while but an update on my daughter Rachael. I previously posted under 'observation' about the constant pain that Rach has in her back. She also started to complain of numbness in her legs and feet. I rang the hospital she attends for her appointments and got her in 3 months early to get it all checked out. The doctor thought that her curve had progressed from looking at her back and ordered another x-ray. Sure enough her thoracic curve is now 60 degrees and her lumbar 53 degrees (was 45 and 37 degrees 7 months ago).
We were told that she has to have surgery and are waiting for a date although have been told it could be around June/July.
This is such a rollercoaster ride and we are now facing what, 12 months ago, we thought was a distant option and not one we thought we would ever seriously consider.
Very much a case of mixed emotions. Rach still has a lot of pain and is glad to have a solution offered to her but is also starting to get a bit scared and worried now the reality has hit home that this is actually happening (as is her mother!)
I hope the surgery will mean an end to her pain. Does anyone have any advice on preparing for surgery? (for the parents and the patient)
Also are we going to need anything special at home to help with her recovery?
It is really encouraging to read all your posts especially the ones that report such postive recoveries post surgery - aren't our kids amazing!

Sonia
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Old 03-03-2011, 12:52 AM
caysula caysula is offline
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Default Re: Waiting for a surgery date

Hi Sonia

The best way to prepare for surgery is not to worry too much. I drove myself insane with all the doubts and questions in my head, dont do that to yourself. Whatever is going to happen will and worrying doesnt change it. In preparation for surgery we took a nice holiday to the goldcoast, we figured there would be no rollercoasters for a while so my daughter was very pleased with that. We also bought some nighties that were easy to slip on and off and that was about it. I think communication through these forums are a great start, they really helped to put my mind at ease. "Doms mum" had a thread about preparing for surgery which had great information. We bought a mattress underlay which we never used, but raised toilet seat and shower chair were very useful, we had them already but I think you can get them via the hospital, which state are you in? We are in Melb and they asked if we had them so possibly you can borrow or hire, I wouldn't buy one as they dont get used for too long. Tell Rach not to worry, positive attitude is the key, get her in touch with other kids. There is a website called spinekids, where kids can communicate and she could read these forums too, lots of video's on youtube also, warning though don't watch any of the medical surgery/educational videos, just stick to personal experiences. You can watch the others after your daughter has recovered. Good luck with everything and please keep us posted on any progress.
regards Sue
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Old 03-03-2011, 09:15 AM
Georgia Georgia is offline
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Default Re: Waiting for a surgery date

Hi Rach's mum,
Surgery was also a distant option for me about a month ago, and now I'm sitting here 3 weeks post op! (yes my surgery went unusually fast, as we only knew the surgeon for 2 weeks before having surgery!)
I think the hardest part is the part you're in now - the waiting. My main advice for your daughter is to keep fit right up until surgery, because this helps ALOT in the recovery. The only other advice I would give is to keep a positive attitude and to trust in the physio therapists and nurses because they know what they are doing and won't let anything bad happen to her.
I hope all goes well and if you have any other questions, feel free to ask.
Georgia
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Old 09-03-2011, 05:59 PM
Dom's mum Dom's mum is offline
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Default Re: Waiting for a surgery date

Welcome Sonia,
Have a look at the thread I started "Tips to help get through surgery" it is one I hope others will add to as they get through.
I think all us parents will agree that the waiting is the hardest - it really does your head and heart in! Try to keep going with all your usual activities as long as you can and look after yourself through the process too. Keep us posted with progress.
Best wishes
Annette
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Old 17-03-2011, 02:47 PM
Rach's mum Rach's mum is offline
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Post Re: Waiting for a surgery date

Thanks for your comments everyone. The idea about the slip on nighties was good and something I hadn't thought about. I have read a few comments regarding mattress underlays or foam toppers, not sure whether to get one or not. I would be interested to hear any points of view on this, whether you thought they were useful or not.
Also shower chairs and toilet raisers -are these a must have?

2 weeks to rach's next appointment when hopefully we will have a surgery date - we are all sick of waiting especially Rachael.

Sonia
xx
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Old 19-03-2011, 04:05 PM
Jen Jen is offline
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Default Re: Waiting for a surgery date

I had a foam overlay years before my surgery and I have to say coming from the hospital bed which was terrible with bumps and hollows, to my lovely flat mattress with foam overlay was heaven on a stick.

So that's one thing I would recommend.

The others, I'm not sure about. I was almost 58 when I had my surgery but didn't need a shower chair or toilet seat raiser...I think perhaps find out where you can get one if you need one, ahead of surgery, but don't buy it until you need it because the chances are, you probably won't. You will have your hand in your pocket for enough things without buying stuff unnecessarily. Save the money for a new dress for after the surgery, because she's going to look a million dollars.
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Old 19-03-2011, 09:24 PM
Georgia Georgia is offline
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Default Re: Waiting for a surgery date

I didnt need a raised toilet seat, and i just used a cheap plastic chair in the shower, but I didn't need it for long. When I came home, I found my bed was too soft! It's very comfortable for my back, but very hard to roll without twisting but thats ok because I've gotten used to it now! If you had a very hard bed I would recommend a matress topper, and make sure you have pillows if you go anywhere in a car for the first few weeks
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Old 30-04-2011, 05:36 PM
Rach's mum Rach's mum is offline
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Default Re: Waiting for a surgery date

Hi everyone,

An update on Rach- we had her appointment and are still waiting for her surgery date! (been waiting since December)
Rach was not very happy to hear the Dr tell her that they were booked out for the rest of the year and it may not be till early next year that she can have her surgery. There is a slight (and I mean slight) possibility that it could be August but we won't know until 6 wks before. We have to wait for a letter from the hospital which they will send out 6 wks before the scheduled surgery. I have noticed her running to check the mail each day and I know she is hoping the letter will be there.
She is in the public system and whilst they have been fantastic the wheels grind slowly!
She is still getting frustrated with her pain and it makes it worse now that she knows there is no immediate end in sight. She got quite upset the other day after trying on clothes at the shop and getting a look at her back in the mirrors in the change room. She told me afterwards when we got home that she was quite shocked and upset because she didn't realise that it looked that bad. A heartbreaking moment for mum - and one I didn't see coming, I didn't even think about the mirrors when I sent her in on her own.
Thanks for those who gave advice on getting a foam underlay. I bought one for Rach now as I thought with all her pain and night times being difficult for her sometimes she could probably benefit from it now. She loves it, says it is heaven to sleep on and helps quite a bit. So thanks for the idea!

Sonia
xx
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Old 30-04-2011, 06:04 PM
Jen Jen is offline
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Location: Sunshine Coast, Queensland,
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Default Re: Waiting for a surgery date

Yes, the foam is great, for all of us.

Sonia, I'm sorry to hear the wait is so long. It's hard when you're in pain. I hope they can fit Rach in early and get this over and done with so she can get on with her life.
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Old 02-05-2011, 03:11 PM
LynBB LynBB is offline
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Default Re: Waiting for a surgery date

Sorry to hear of your wait. We to had a long wait, Laura was first told she required surgery in Aug 09 when it was discovered her 50 degree curve. Oct we recieved the pre admission forms from the hosp we then had a pre-op clinic in early March and assumed surgery would be within the next month. More waiting and finally saw our surgeon in June to be told the curve had progressed rapidly from 50 to 100 and required 2 surgeries we waited again with Laura in continual pain and having problems with her lungs attempted in Nov to see our surgeon due to Laura's lungs and was unable to get app't till March. Finally had another pre-op clinic in Feb this year with her surgery in March... we got a weeks notice of the date. After our 19 month wait we are now being told we were private patients (thats another story) My only regret is I didn't ask more questions relating to surgery waiting lists I assumed as a public patient your just put on a list but the surgeons also have waiting lists, we were in a ward with a boy that had same surgeries and only waited 12 months as a public patient. Another girl who had the surgery your daughter is having had a 9 month wait. Laura ended up with permanent lung damage and her back is still deformed I know her scoliosis was severe but I just want everyone going through this to ask questions and keep hounding something I regret everyday. I had sought a second opinion but stayed with our surgeon who was the best ( but at what cost ). Sorry I didn't want this to be an alarming note but now our surgery is complete I'm angry with the health system and how long we had to wait. Good luck with your journey.
Lyn
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