anxious mum

[elsa]

I have been reading this forum for some months!! I am from the UK and my 13 year old daughter is scheduled for surgery November 12th. I have never experienced so much worry and anxiety. She seems to be coping OK but doesn't want to talk about it or look at this forum. What I wouldn't give to be able to have this surgery for her.. You wait for the doctors appointment yet when it comes you dont want to go - perhaps it might all go away?? silly I know but its strange how your mind copes with things. Are there any other mums out there feeling the same? i'm sure there must be. I like to read the reassuring stories but some seem quite dismal and frightening!! anyway pretty desperate...

[Pattyz]

I am taking my daughter in for surgery tomorrow. I had the chance to read other people's comments and stories of recovery, my daughter chose not to read any books of visit any websites. I think I am more stressed out over the operation than she is, she is very relaxed and is being very brave about the whole thing. We agreed that the surgery needed to be done the curve progressed so quickly she accepted she needed the surgery wanted it as soon as possible. I needed to come online tonight and read a bit more it made me more at ease. What made me feel better was reading books or websites, talking to the doctor, or to a few people I know who have had family members go through the surgery. I hope what I had to say helped somewhat.

[elsa]

I was relieved this morning to have received a response to my first message. I wish you all the best with your daughter and it is reassuring to know mums are going through the same as me. I'm thinking about you and your daughter and all the other kids going through surgery every day!! let me know when you are out and how everything went. Keep your chin up x

[KRIS ATKINSON]

There are people out there on this forum who gave me great support all through my ordeal with my daughter. I even met one mom in the hospital and we supported (and still do support) each other daily as our kids were in surgery and during follow-up. I look at the "problems" reported on this forum as possible things to be prepared for and not as things to panic me. This surgery is definitely serious and I would not have had it for cosmetic or pain relief. My daughter was increasing her curve so quickly that the future looked very grim without the surgery. The ability to prevent her from having to use a lung machine as an adult, etc., made surgery a definite choice for her and me. The forum helped me prepare for the things the medical staff would not be concerned as much about, like writing down the medicine schedule and preparing myself for waking constantly 24 hours a day to help her with pain management. Others telling about their experiences post-surgery also helped me prepare mentally for what is happening now: finding ways to enjoy life without sports for a year.

[KRIS ATKINSON]

My daughter hated talking about scoliosis (still does) and hated the idea of using this forum, so I had to only use the forum when she was not around, to avoid upsetting her. I found out through the forum that others react like she did and that it was ok. I did and still do have to remind myself that most people come here because they have problems. I found that as long as I keep the "what if's" in perspective and center on sharing experiences, I can get alot out of the forum. There is someone here in my city that I know of who had this type of surgery, but it was still not the same as hearing from NSF people, who gave me a multitude of ideas to help me through. We will help you two all the way through if you continue communicating! God bless you with your upcoming situations and keep in touch! My daughter is 3 months post-op now and recently went on a girl scout sleepover. She is looking forward to going on a hike with the girl scouts this fall sometime and enjoys PS-2 nowadays as a reward for finishing homework. It used to be basketball in the driveway but recently is video games, at least until the fusion is finished, and no more worries about her curve getting really severe! Ok, I'm done yakking! Kris

[marmyte]

i sent you a private message elsa, i'm from the UK too and have not long had surgery (12 weeks ago) i'm a bit older than your daughter but i've been where she is and as kris said, scoliosis was a banned topic in my house too - denial is easy when you're a teen i think :D

a big plus is i asked my parents how it was looking after me and they said not as bad as they expected. i left my email address in the PM so feel free to ask me absolutely anything

[elsa]

hanks for replying. I think my daughter has definately resigned herself to surgery but doesn't neccessarily want to be reminded of it by talking!! She seems quite able to put it to the back of her mind which I suppose is a blessing. I'm glad your daughters surgery went well lets hope my daughters will too... its nice to talk to someone who has 'been there, done it and got the t-shirt' (not sure whether that is a Brit saying)!!
I am struggling a bit with the worrying, not sleeping etc etc and wish this hadn't ruled my life. We are no stranger to scoliosis. My elder daughter has suffered with it for 5 years but no longer visits the doctors as they said it wasn't bad enough for surgery even though she seems to get backache almost daily. Strangely enough my younger daughter who is having the surgery - her scoliosis is much less noticeable than her sisters that is why it was such a shock when we were advised on her first hospital visit that surgery was really the only option..
Anyway i look forward to talking to you again..

[nikyergen]

Elsa,
Surgery is a scary thing to see you child prepare for. My daugther had accepted surgery. She wanted it badly because her back hurt all the time. She actually put her whole surgery thing in God's hands. She used to tell me everynight "Mom, you have to let go of it and let God take care of it." About three days before surgery I was finally able to let go of it and put it in God's hands. But, at that point I was absolutely exhausted from lack of sleep from worry. The morning of surgery I went into the prep room with her and stayed until I couldn't hold back my tears any longer. When I went back out in the hallway, my husband was waiting, and I just bawled. I am so glad to have the man I have, he was my strength on that day. When her surgery was done and we went into the recovery room to see her, I cried again because she was doing okay. The best part was that even with her lying on her back in recovery, I could already see the change in her back. You will have feelings of fear and feelings of joy. If I had to do it again, and go through all the turmoil I put myself through, I'D DO IT. To see my 17 year old daughter stand up straight and tall (she grew 2 inches from surgery) is well worth it. She wears clothing now that she would of never worn before. She always wanted to conceal her back. She's proud of her scar. Even if someone asks her about it, she'll always stop and talk to them about it.

A few quick suggestions. Get a body pillow and take it to the hospital for your daughter. It will be her best friend. When she is rolled up on her side, it will be long enough to lay behind her and go the full length of her back. Be prepared for the fact that she may get very dismayed if you leave her room for a break. Do it anyway, you need to get out of the room. I was 5 hours from home, so couldn't even go home and see my husband and other children. I spent 7 days in the hospital with my daughter. I could of gone shopping, as the Shriners men would of taken me anywhere I wanted to go. But, I had made some friends in the hospital and we would eat together and support each other, go for walks in the hospital, etc. But, be sure to take a break. If you need to leave, just let the nurses know you are leaving, it's okay to do that. Get e-mail addresses of those you meet and bond with in the hospital. You will develop amazing relationships with them. I have gained one incredibly wonderful new friend from this experience and we keep in contact all the time.

Of all the things we took to the hospital, the only thing my daughter really used was her CD player. So, take one for her and buy lots of batteries. Listening to the music they like makes things easier for them.

You'll do great, even though it doesn't seem so right now. You'll be on the other side of surgery soon.

God Bless You.

'til later,
Nikki

[KRIS ATKINSON]

Nikki, I am glad to see you offer your thoughts here. I was hoping some of the people like you would chime in and help these two moms on this thread with their worries, as you and others did daily to me when I was worried and counting the days until surgery. Feels weird being post-op like you were when you consoled me when you were just a few months post-op, telling me about your daughter jumping over the dishwasher and "crashing" with daddy on the sofa. Erica recently got shoved against a wall by her brother and for a change, I didn't stop what I was doing and run to the rescue. I figured the damage was done or not done by that time and she has to get out of the action herself if she doesn't want to risk spine damage. She hates to back out of physical/verbal debates with her brothers. I came back in the house after hearing from her brother how the other brother had slammed her against the wall (he was sick of her attitude and I think finally gave in, could have been worse). When I saw her, she was glued into whatever a brother was doing on the computer by then, so obviously she must not have been hurt too bad! Definitely reminded me of you at 3 months post-op when I was praying to be on this side of surgery and out of worry ASAP. Again, thanks for joining in on this thread, I hope it helps these ladies like it helped me. Kris

[elsa]

Thank you so much for your response. I'm so glad everything went so well for you and your daughter. Yes I am very frightened and i'm sure my daughter is to but I will have to pass over care of my daughter to the surgeon I have no choice. Being mum you feel like you should always be able to make it better!!
As much as I am dreading the whole thing the other side of me just wants to get going with it. My husband is a very emotional person and will probably not be that much use. However, my sister will be with me throughout surgery which should be a help. My elder daughter is already feeling very emotional about the whole situation and we've agreed she will come and visit her sister once she is out of intensive care. I am very fortunate to have a close and loving extended family who all want to help. I've never really been a believer in god but when things like this happen you start to question the whole meaning of things. I have a good friend who is a very spiritual person and has helped me alot. I think perhaps peoples good thoughts and positive thinking can help. I hope I can muster the strength for my daughter and keep controlled for her sake - I wont be much use to her if I'm a gibbering wreck!I was planning on taking a CD player with us as it seems to be my daughters nightime buddy anyway.
I hope this forum will help me through and will perhaps glue my fingers to the keyboard!!! Thanks for your thoughts x d to go.
write back soon
Nikki[/QUOTE]

[elsa]

Marmyte
Im not sure you have got my private e-mail so I thought I'd post on the forum as well. My daughter is having her surgery at RNO in Stanmore as well. Her surgeon is a David Harrison.
What was the hospital nursing staff like?
I'd really appreciate your response..
Til later x

[marmyte]

i replied to your private message elsa :)

[phaden]

I have been reading this forum for some months!! I am from the UK and my 13 year old daughter is scheduled for surgery November 12th. I have never experienced so much worry and anxiety. .

Hi Elsa:

My daughter had her surgery on 2nd May. In the weeks leading up to the surgery date, I was a complete loon bucket. I've never been so scared or worried in my entire life, and I am an Olympic class worrier to begin with.

Looking back on the experience now, the worrying in advance was actually the worst part. The upcoming surgery looms over everything, and yet there's not anything you can actually do to improve the situation. Once you get into the hospital and the surgery is happening, there's lots to do. After the surgery, when you're living at the hospital and taking care of your child, it's really much better because you have some control over things.

So, to a certain extent, I think you just have to suffer through the pre-op anxiety a bit. Won't do you any lasting harm, most likely. As far as specific recommendations, I have only a couple:

1) The doctors will tell you these horrible "odds of bad things happening" numbers. Something like a 1 in 2000 chance of spinal cord damage, or whatever. I hated those numbers. I wanted 1 in a bazillion gajillion. However, I found it helped to think about the fact that, if 1 child in 2000 has a horrible outcome, that means that 1,999 of 2000 don't. It sounded a lot better that way. I have been active on this forum, and on www.spinekids.com, for two years now (since Caitlin went into the brace), and have followed the stories of probably dozens of idiopathic scoli procedures. Every single child has survived, none of them have been paralyzed. This is a well-understood and often performed procedure. While it would be better not to have to have it, those odds are really in your favour.

2) Try not to cry in front of your wee girl. Many of the girls on spinekids talk about their fear of seeing their Mum cry before the surgery. Through SuperMum self-control I managed to stay laughing and perky all the way into the operating room (there ought to be an Oscar for this) and only finally broke down after Caitlin was unconscious. (Don't bother doing your eye makeup on surgery day......)


3) If you can do anything to treat your anxiety directly -- warm baths, jogging, yoga, whatever -- it's probably good to do so, because you've got a lot of work ahead of you once your daughter is in recovery. There are several weeks of broken sleep, waiting on her hand and foot, not losing your temper when she's cranky, etc.

Wishing you all the very best during this trying time. Keep us posted.

Cheers - Patricia

[elsa]

Thanks so much for you notes. Yes i'm sure you understand it is a very scary time. I dont think i've experienced anything so difficult.
It does help talking to other mums and i am sure i will keep mailing this site. im really glad everything went well for you daughter.
im off to bed now and hope i can get a decent nights sleep
xx
til later

[dancermom]

I'm dealing with fear and worry too as my 14 year old daughter will have the back surgery on Nov. 28th. We don't know how much the doctor will have to fuse yet as we go in for bending x-rays on the 7th of November. It is just very hard to know that your child has to face this type of major surgery and will be in so much pain.

It does help to read the suggestions that you have given each other and know this is a place where others understand the same type of worry and concerns.

[lorrie]

Hi Elsa
I've a feeling I might have been one of the dismal and depressing stories which helped frighten you out of your wits and I just wanted to try to reassure you! In spite of the complications we had, Genevieve is now doing well and is back at school (just - went back yesterday) and we've been cleared to do bathing and hydro therapy and some physio - basically 'virtually anything goes but stop if it hurts and let her have a rest when she's tired'. we don't have to worry about lifting restrictions etc as Genevieve's disability precludes that anyway.
In spite of the dreadful time we had I do think it was worth doing - Geeve's back is a beautiful shape and she can sit more easily and it will protect her future quality of life. Also, we were in hospital for a whole month and fair number of other young people were in having spinal fusions: we were the only ones with problems - the others came and went and left us behind. All I want to say is that our experience was far from typical and Genevieve was always going to be a high risk patient because of her other problems.
Best wishes
Lorrie

[phaden]

It is just very hard to know that your child has to face this type of major surgery and will be in so much pain.


Surprisingly, considering what they do to the child, there really isn't that much severe pain. Caitlin experienced a great deal of soreness and stiffness, but, due to the aggressive pain management policy at our hospital (PCA, epidural, paracetamol suppositories), she was never in real anguish. In actual fact, the greatest source of discomfort Caitlin had was post-surgical constipation, which was a real pain in the tummy. (You can read Carmell's posts about her experiences with this problem as well.)

Perhaps you would find it reassuring to talk to your hospital about their pain management plan?

Hang in there - Patricia

[marmyte]

the anaesthetists at stanmore are great, mine was fantastic, he visited me every day and answered even the most basic questions, spent a fair amount of time with me. amongst patients, anaesthetists are often known as "good cop" and surgeons are "bad cop" :D

[dancermom]

Thanks for the reassurance. Our doctor told us that he usually goes by pulse rate, blood pressure and physical signs versus rating the pain on a scale from 1-10. He said the nurses don't always like him, but he prefers to go by the stats. I do know that my daughter will have the pump at first anyhow. I don't know how long that stays in. We still have to call the hospital to set up a time to go in and visit the ped ICU and see where things are located. I guess we will try to do that at the beginning of November.

[LeaEvelyn]

Hi Elsa,
I am a mother to a 13 year old boy, who has also struggled with scoliosis. He also had to have the surgery. In our case, we didn't have a choice. His curve was progressing very quickly. He was braced for 18 months. The brace only slowed the curve down, it did not stop progression. I'm not sure if you would like to read the story he wrote about his experience with scoliosis and his surgery, but if you do, it is located at www.spinekids.com. Just go under stories and click on Shane's story {his is one of the newer stories featured on this site}. I can understand everything you are saying about the anxiety we parents go through. I still can't believe we made it through everything ok. And believe me we had our share of hardships, but we made it through, and you will too. I found, the hardest thing I ever had to do in my entire life, was to leave the pre-op room, and trusting this man, his surgeon, to take care of my child. But trust him I did. Please know that what you are feeling is so normal. If you ever need to talk, you may e-mail me anytime at llentz5525@yahoo.com. As I said, we have been through alot, and I'm sure I could help you through this if you feel you need it. Take Care, and sweet dreams, for one of my problems was also not being able to sleep.

[elsa]

It seems we are both experiencing the same feelings at the moment. It is very reassuring to read other peoples success stories - lets just hope ours will be the same!!
I feel an affinity with Phadon from New Zealand when she said she is an olympic worrier - I know those feelings only too well being a person who has worried especially about her girls since the day they were born. !
Your daughter obviously used to dance so did my Hannah. She danced 'hip hop' at a class and has always loved dancing before she could walk. However the scoliosis has meant she gave it up about 6 months ago because her back just became so sore. We are all hoping after her recovery she will be able to resume her dancing.
I think the key is we must keep positive about all we are about to undergo and think it is for the long term good even though I still have feelings of why!
- but who are we to question we must just make the most of it and look forward to the day when scoliosis can be a thing of the past.
Take care and keep in touch
elsa x

[marmyte]

Thanks for the reassurance. Our doctor told us that he usually goes by pulse rate, blood pressure and physical signs versus rating the pain on a scale from 1-10. He said the nurses don't always like him, but he prefers to go by the stats. I do know that my daughter will have the pump at first anyhow. I don't know how long that stays in. We still have to call the hospital to set up a time to go in and visit the ped ICU and see where things are located. I guess we will try to do that at the beginning of November.
here in the UK PCA (patient controlled analgesia, morphine) tends to stay in until the chest drain comes out. i had my drain out at almost 4 days post op :)

[Lura]

Elsa,

Hi I am Lura. My son Alex had surgery March of 2005. There were several of us "moms" who were terrified and going through the surgeries around the same time, this site helps!! I've been negligent at keeping up on this site, life gets busy and the relief after surgery tends to keep thoughts of it at bay.

No matter what, moms seem to bear the brunt of the fear and the unknown and none of us want our babies hurting. Following surgery you will go from fear mode to survival mode where you will make you daughter do whatever she has to do to heal. This side of surgery is 100 times better!

Know that our thoughts and prayers are with you, and we are here for you and can actually say "we know what you are going through"! Have your emotions, cry, throw tantrums (away from your child preferably) you deserve it and it may make you feel better.

Keep in touch!

Lura