Sorry i havn't visited for so long.

[Deb_angel]

Hi every one. Just letting you know that i feel great . I cant believe i'm five months post up already. I feel pretty normal except that parts of my back still feels a little bit numb and sore, and it feels a bit stiff too. I'm open to questions so feel free to ask.

[firestorm530]

surgery

So you had your sugery how did it go. I will have mine mabe in july

[UKMum]

Annie's surgery March 23rd 07

Hello Deb and all,
Great to hear that life going well for you Deb.
I also haven't visited this site for a while but I thought it would be worth updating on daughter Annie's surgery. Annie's 14 and had rapidly worsening double curve last measured at 61T/41L plus significant rib humps. Her 6 hour anterior fusion T6-T11 op was 13 days ago -she spent 8 days in hospital including 5 days in high dependency (more typically 2-3 days in HDU in UK) as she had minor problems with her chest drain and a slight chest infection. We haven't measured the correction yet but I can say that the ribcage/rib hump correction is extremely good - it's almost "normal" now. The actual thoracic curve correction is probably about 60% so the curve is now down to an acceptable level and, hopefully, arrested. The lumbar compensatory curve has almost self corrected which is great. We could have chosen a much longer fusion, but for an active and sporty girl that would not have been the right choice, we thought.

Annie came home 5 days ago and looks pretty normal but obviously gets some pain and gets tired quickly. She won't be back at school for about 3 more weeks I guess.

One thing we haven't quite got to grips with is the lack of support and physio once you leave hospital here in the UK. We do feel a bit like there are questions we want to ask, and no-one to ask. Apart from that, a pretty good outcome so far..... but more to do to get Annie back to full health and activities.

Thank you all for your support and being there. I never met ANYONE with scoliosis till we went to hospital, but having you all to "talk" to does really help.

[Sherie]

I'm very happy for your daughter and you too. We are in the process of selecting a surgeon now for my 14 yo daughter so I'm always relieved to hear how well some of the other kids are getting along.

Best wishes,

[Cassmom]

Cassmom

Hi, I am new to the site but I have learned alot just from reading many the messages.

I have a 17 year old daughter who is having surgery the end of May in Atlanta GA and I was wondering if you have any advice for her or me.

Lot's of dumb questions.
What to take to the hospital? She wants to know if she will be in a hospital gown the entire time she in in the hospital? Could you wear regular clothes when you got home from surgery. Did you sleep well after you got home from the hospital? etc.

Any other advice to help her with the recovery would be great.

[UKMum]

Stuff to take to hospital

Hi, Cassmom,
I realise that UK and USA may be different but here's some advice from a UK perspective.

Yes, they wear a hospital gown for the first 4 days or so, but after then if you're still there it's nice to have a decent pair of pyjamas - well actually two pairs, as daughter was inclined to be sick occasionally (painkillers). You really don't need that much - we took books, CD's etc but for the first couple of days Annie was really groggy, and after that alert but very easily tired. An IPod or similar might be nice however, and it was permitted in hospital.

Annie has slept pretty well at home, as although she wasn't super comfortable, she gets tired and sleeps like a log! The pain relief obviously helps - she was on dihydrocodeine and paracetamol initially, now mainly paracetamol. It's been much better than we all expected, now we are home. She has been mobile since hospital and able to look after to herself in almost every respect, though rather slowly and carefully.

In hospital however, if you are staying in with your child, the experience is intense and quite tough, staying eternally cheery for your kid - if you can share duties with a partner/relative it really helps. Also you will find fantastic support from the other parents and kids. I don't know if your older daughter will be on a children's ward. At my daughter's hospital, on the children's ward the teenagers had a separate area from the "little ones", which seemed to work well.

The scoli patients don't eat much in hospital so don't bother bringing in loads of treats - they won't get eaten! I think the digestion tends to grind to a halt for a few days. Just some nice drinks would be appreciated (fruity smoothies etc).

My daughter won't forgive me for mentioning this, but she did get her period in hospital.... which she had dreaded... but it was no big deal as the nurses sorted the pads out (not tampons). Bring your own nice pads though as the hospital pads were not the super slim modern kind! Basically, bring what you may need, and don't fret about this tiny matter.

Anything you want to know, ask!

[SARAHK]

things to take to hospital

Hi Cassmom,

I've had this surgery twice and both experiences were pretty similiar. Your daughter probably won't want to do anything but sleep the first 4 days or so. The younger you are, the quicker you bounce back though so she could be different. With my 1st surgery I did wear my pajamas I brought after about 3 days. When you're a teenager you care more about how you look in front of visitors! With my 2nd surgery I stayed in the hospital gown the whole time.

Definitely have people who can trade off with you so you can go home and get some sleep! As much as my mom wanted to stay with me 24/7, it's a lot to handle being there all day and all night. The nurses come in throughout the night to check vitals and IVs and it can be exhausting.

Also something very important and not always mentioned by doctors, (sorry this is gross), but make sure she takes some kind of laxative like PeriColace (can be bought at the drugstore) once she's eating again. Those drugs are rough on your stomach and it's not fun, trust me. This time I was fine because the nurses gave it to me in the hospital. That's a big thing that they sometimes overlook. You want to make life as easy as possible after going through something like this!

Stay on top of the meds! The nurses won't come in every 4 hours so as soon as it starts wearing off, don't wait, go ask the nurse because it will take them awhile to bring it. The longer you wait, the harder it is to get the pain back under control.

Hope that helps, good luck!!

[susannajon]

Helpful list for before, during, and after surgery

Cassmom, I PM'd you but decided I'd just go ahead and post this list despite it being really long. I hope this helps.

For Your Daughter Before Surgery:

1) Don’t stop exercising. The stronger she is the faster she will heal. If she's having muscle spasms and getting out of breath doing normal sports, try a stationary bike or an elliptical for cardio, and do some light strength training. She needs to stretch her hamstrings and strengthen core muscles (the ones that support your belly and back). Pilates is excellent for strengthening the core muscles, and yoga is great for stretching. Walking and swimming are also good options.

2) Both of you, try your best to get enough sleep before surgery, although it is really tough because you’re nervous. Your daughter should make sure to take her iron and multi-vitamin. She should stop iron supplements a day or two before surgery and have light meals the last day so she doesn’t have problems with constipation after surgery.

3) Make sure she eats plenty of fruits and vegetables, especially right before surgery. That first BM can be brutal, and if she's been good about getting fiber before surgery, and minimizing red meat and dairy, it can make the first few days after surgery much more pleasant.

4) No aspirin, Nuprin, Aleve or ibuprofen for two weeks before surgery. Also, stop St. John’s Wort, vitamin E, Ginkgo Biloba, garlic pills, or anything else that thins the blood.

Some of the Things Your Daughter Might Want for the Hospital:

1) A comfort item from home, like a stuffed animal. She might think she's too big, but trust me; it will be immensely comforting when she first wakes up from surgery

2) Your daughter's basic toiletries (deodorant, tooth paste, tooth brush, soap, shampoo, conditioner, face wipes, acne cream, hair brush, covered elastic bands)

3) Some water free soap, like Cetaphil

4) Gold Bond body lotion to banish the pain med itchies

5) A small bottle of mineral oil to help get off the tape adhesive (she'll have patches of adhesive all over her from all the Band-Aids, tubes, IV's etc.)

6) Little tube of A&D ointment for her bottom or any rough sore patches (she might be quite sore after that first BM); also, a little tube of antibiotic cream to dab on old IV holes and such

7) If her hair is long, put it in two braids, and try to brush it out every day and re-braid it. If it's short, get it cut even shorter right before surgery, because she's going to get a big rats nest on the back of her head if not.

8) Slipper socks with sticky bumps on the bottom. Regular slippers fall off and/or trip you.

9) Portable music (an I-pod, radio, or CD player with headphones).

10) A laptop computer or portable DVD player, as well as some movies or computer games (Even if your daughter’s not feeling up to it, you might need the distraction). Also, ask at the hospital if they have a computer or game system you can use. Many have them available for patients.

11) A couple of mushy pillows from home (comforting and familiar). My daughter loves those bead filled bright colored pillows you can get at the department stores. Also, ask the hospital for extra pillows.

12) The hospital might give you these lemon glycerin swabs to wipe her mouth right after surgery because she can't eat or drink until her bowels "wake up". Don't use them, they feel good for a minute, but then they make her mouth feel sticky. Wet a paper towel, and let her wipe her lips and tongue and suck on it a little. It's enough moisture to make her mouth feel better, and wet her mouth and throat a little, but not so much water it will hurt her.

13) Feminine supplies (even if she just got her period, she'll get it again. This always happens to women/girls after surgery). You will probably want to warn your daughter to expect this, so she will be mentally prepared. Tell her not to even think about it or be embarrassed. The nurses all know the deal.

14) Soft loose PJ's for your daughter (after the catheter comes out). Loose soft clothes and slip on shoes for the ride home. Jeans are NO GOOD.

Pain Management:

If your daughter starts to feel anything other than mild discomfort (3-4 out of 10) and the nursing staff does not immediately resolve the issue, insist on paging the pain management team, day or night. Even if she's on the pump, they can come and give her a little extra zap. There is always a way to make her comfortable, so don't take "No" for answer. Pain slows healing and there is no reason for her to suffer, or for you to have to watch her suffer. The squeaky wheel gets the grease, so SQUEAK.

Stuff for the Caregiver:

1) VERY important. Keep a journal while you go through this experience, especially in the hospital and when you first come home. Start it now if you like. Write down any questions you want to ask a doctor. In the hospital, write down doctors and nurses names as they enter the room. Write down any good or bad experiences. Make a note of when medication was administered. This will save your sanity. You will be exhausted and stressed, and the journal will help you keep it together. It is also a really good way to look back on the experience, and see how far you’ve both come in a few months when this is all a memory.

2) Comfortable, washable clothes, along with sweats or PJ bottoms and t-shirts for you to sleep in. Comfortable shoes, and sleep socks or slippers.

3) Knitting, Sodoku, crossword puzzle books, magazines, or whatever you find comforting and distracting for long hours of sitting. You might not be up to reading books or studying/working because you will be tired and distracted.

4) Healthy portable snacks, like instant soup, granola bars, bottled water, nuts. There’s nothing but candy, chips, and sodas in the machines.

5) Benadryl (2 x 25 mg) to help you sleep, Tylenol or Advil for aches, pains, and headaches, and Visine or saline for your eyes, multi-vitamin and Airborne to keep you strong and healthy. You don’t want to get sick.

6) Your basic toiletries.

7) If you don’t have a web-based email, set one up now. Add all of your personal contacts, and create a distribution list for the surgery. When you are in the hospital, there will probably be a computer you can use and/or wireless access for your laptop. You can log on periodically, and send a bulk email to friends and family with updates. Let them know to expect to hear from you this way. This will reduce the number of phone calls you need to make with status updates.

8) Cell phone and/or PDA (WITH chargers), phone list, addresses, post cards, and stamps.

9) Camera so you can remember the JOY! Actually, it’s pretty great to look back and see the progress they make as they recover. Also, first steps after surgery, favorite docs and nurses, visitors, and fellow patients.

10) Package of pens/pencils, small scissors, nail file and clippers, Ziploc bags.

11) RESPITE PLAN: You don't need flowers, you need a break once in a while. Ask your friends and family to visit, even if it's for a couple of hours so you can take a walk, or take a nap. If at all possible, have someone you can alternate nights in the hospital with, because otherwise you will be exhausted.

Stuff for Homecoming:

1) A raised toilet seat with arms so she can get yourself up off the potty by herself. VERY important for self esteem.

2) A chair for the shower, because it's hard to stand for long periods in the beginning, and the combination of low blood volume, pain meds and heat can make you dizzy.

3) A comfy chair. Some people like a straight rocker with pillows. Many prefer a recliner. I got a LaFuma recliner, which is meant as a deck chair. It is small and light, and easy to move, not to mention you can get them on the internet for about $150. We put a couple of pillows in it, and my daughter lived in it after surgery.

4) A memory foam bed topper, at least three inches thick. If she can't sleep in bed at first, that's OK. Have her try her recliner, the sofa, whatever works. It's not where you sleep that matters, just that you get some sleep!

5) One or two body pillows. They are easier to position than a bunch of bed pillows, and they make her feel safe and supported.

6) A grabber so she can get things off the floor, or pull up a sock

7) Lots of DVD's (we belong to Netflix which was great because I didn't have to leave the house to get movies)

8) You might want to rent a hospital style table for a month or so.

9) Walkie Talkies or a baby monitor so you can "page" without screaming. Our portable phones have a pager feature, so we used them instead. You can also use a bell.

10) I know thi is nasty, but glycerin suppositories will be your daughter's best friend if she gets constipated. They work immediately and are very gentle and have no side effects.

[mel48315]

Hello,
My daughter is having surgery in June. I too am trying to find out what to expect as far as pain goes. Our dilemma is a bit different in that my daughter in mainly in a wheelchair and has left sided paraylsis from a stroke 2 years ago (she is 15). She can walk short distances with a cane and a gait belt that I usually hang onto from the back. Can anyone tell me if the recovery is going to be worse due to the fact that she has little exercise? Also my daughter is inconninent and wears Depends. I worry about accidents (with stool softeners) and it possibly infecting the surgical area. Sorry too for being graphic but I have yet to find anyone in the group with similar issues. Wondering if anyone can give me better insight even if you don't have the same issues.
Thanks,
Melanie

[emmalouise]

Thankyou so much for your post Susanna, what a comprehensive list! I'm having surgery this year, I have already printed out your list and have put it in my diary

[susannajon]

emmalouise, glad to help. Everyone on this forum was so wonderful when my daughter had surgery two years ago. These ideas were mostly gathered from them. Another great resource is LindaRacine, who is a moderator on this site. She has a great website, and there is a page on her site that has a list of things to prepare for surgery. I definitely suggest looking at her website and reviewing her list as well. She has some great stuff for everyone impacted by scoliosis, adults, children, and families of people with scoliosis. Here's the link:

http://scoliosislinks.com/PreparingforSurgery.htm