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**flowerpower** · 09-23-2005, 12:18 PM

Sorry, can't answer your questions, my son is in the same boat as you. His surgery is scheduled in mid-December. Let us know when your surgery date is scheduled-we'll be praying for you.

Renee

**susannajon** · 09-23-2005, 04:07 PM

Hi ScolioGirl,

My daughter had surgery in March. I will try to answer your questions. If you want to ask her any questions directly, just ask, and I'll talk to her. I will ask her to get on here and talk to you.

Q: When surgery's really close and you start to get nervous, what helps you relax?

A: We did a lot of talking. My daughter doesn't like surprises, so we spent lots of time researching and then talking about what to expect. She felt prepared, and although she was scared, she felt like she knew what was coming and that helped a lot. She finds that her music, drawing, reading, and writing make her feel more relaxed. I like to work out, do yoga and pilates, and listen to my music. Everyone is different.

Q: What's it like for the first day or so after surgery? How do you feel?

A: OK, bad news first... the first couple of days you will feel like you've been hit by a freight train. The good news? You will be on really strong pain medication, and you probably won't remember much of it at all. My daughter, when she first woke up, was is terrible pain. A couple hours later, after she was hooked up to her pain pump, she woke up and said, "Hi Mom, have I had my surgery yet?" So she had forgotten all of it!

Q: Do you have much energy to do stuff (read, have a long conversation with someone, etc.) in the hospital?

A: You are going to be wiped out. I would suggest you take some really low stress stuff to do, like magazines, music, and DVD's. Ask your mom to pack stuff for a mini-massage, or maybe a manicure. I wouldn't try to read too much, nor would I expect to be able to carry on a really long visit or conversation. Your body will need to rest. I would limit visits to immediate family the first three days, and after that keep friends' visits to a minimum. Make a pact with your family before surgery, and make up a code so you can tell your mom and dad when you've had enough, and they need to send a visitor on their way. You will find that you get really tired very easily.

Q: How bad is the ride home? My hospital is two hours away.

A: Fill the car with TONS of pillows, and take your dose of pain meds about thirty minutes before you leave. My daughter said the worst part was actually the wheelchair ride through the hospital to the car. We drive 4 hours from NYC to Baltimore, and my daughter slept most of the way.

Q: What type of things should I bring to the hospital?

A: Feel free to PM me with your email address, and I'll send you a list of stuff to take.

Q: What were things generally like? I love to hear stories.

A:You and my daughter should probably chat. She'll tell you what it was like for her.

Q: Is your mobility as good as it was after surgery? Will I still be able to play sports well?

A: Flexibility after surgery is going to vary from person to person. My daughter is fused T11 to L3 and she feels very flexible, and she should be able to play sports in about 6 months. You surgeon should be able to answer questions about your specific case.

Best of luck with everything, and please let us know if you have any questions, or if you want me to email you the list of stuff to take to the hospital.

**ScolioGirl** · 09-23-2005, 08:30 PM

Thanks so much for your reply, Susanna. I'm like your daughter in liking to know everything. Actually I've made researching scoli a bit of a hobby. Anyway, that was a great help to me. Thanks

**Kimberly7** · 09-24-2005, 09:34 AM

Hi ScolioGirl,
I am a 34 year old female who had a full spinal fusion 3 months before I turned 17. Back then, we didn't have the internet for easy access of information and support groups. And because I was so distraught over the surgery, I didn't speak with anyone about it. I was too embarrassed. So I commend you on your curiosity and research. And although everyone reacts differently to the surgery (2 other 16 year old girls had the surgery within a day of my surgery and we were all on the same floor) you should be curious about other experiences. It feels like a long time ago, but besides the morphine comas

, I remember most things.

Q. When surgery's really close and you start to get nervous, what helps you relax?

A. I remember being soooo nervous. Probably because I had absolutely no idea what was about to happen. I hadn't spoken to anyone who had the surgery. I do regret that b/c most people get nervous their first time (doing anything) b/c they don't know what to expect. You seem like you are doing a lot of research and your knowledge should help you relax. But the main part is to picture the outcome. Whenever you get nervous picture yourself after the surgery and see yourself healthy and happy. Just fast forward to how you want to look and feel post surgery.

Q. What's it like for the first day or so after surgery? How do you feel?

A. I agree with Susanna, it does feel like a freight train hit you. I was pretty much clueless and in a lot of discomfort. And yes...the meds are good! But the first week will proabably be the most uncomfortable. After that, is does get easier

Q. Do you have much energy to do stuff (read, have a long conversation with someone, etc.) in the hospital?

A. I had no energy for most things. Although I did take up walking around the hospital floor. They called me the marathon walker

I was in the hospital for 10 days (not sure how the surgery has changed today) and the only thing I wanted to do was to see my friends and family. Even though I don't remember certain people visiting, subconciously I knew they were there. I wasn't much of a conversationalist, but having them around was my only form of relaxing

Q. How bad is the ride home? My hospital is two hours away.

A. The car ride home for me was uncomfortable, but I got through it. Don't sweat the small stuff!

Q. What type of things should I bring to the hospital?

A. Hopefully Susanna will have a nice long list for you, but I just remember wanting my slippers. For all of the walking I did around the hospital, I needed to have my slippers.

Q: What were things generally like? I love to hear stories.

A. Hard to answer in an email. But I remember feeling just about every emotion.

Q: Is your mobility as good as it was after surgery? Will I still be able to play sports well?

A. Great question! Since I had a full spinal fusion, my 2 rods go from the top of my spine to the bottom, so I don't have the normal flexibility. Not sure how your surgery will be and I had read something recently that says for full spinal surgeries, they don't use full rods anymore. Regardless, my advice is to keep doing EVERYTHING you do today. Yes, it might be harder and more frustrating, but don't stop your life. My mom was so scared that I would hurt myself, that she didn't want me to do anything athletic. So, I stopped playing soccer and all other sports for years. It wasn't until I was in my early 20's that I realized how depressed that made me. So over the past 10 years, I have practiced Kung Fu, Tai Chi, Yoga, tennis, pilates and other sports. Some things are more frustrating that others. Yoga, for instance, is very mentally frustrating b/c I have a hard time doing a lot of the back stretches. But it doesn't stop me. This opeartion shouldn't really stop you from doing anything! The only thing that will stop you is yourself.

As for your surgery date, my advice is that you wait until both parents are available. You will need both of their support and they will definately need each other.

Much luck, healthy and flexibility! My prayers are with you.

Kim

**marmyte** · 09-24-2005, 07:32 PM

hope i can help a bit...

1. When surgery's really close and you start to get nervous, what helps you relax? i was very lucky, i didn't suffer from nerves as i was preparing myself for surgery for just over 4 years. the best thing i think you can do is remind yourself that you're in the hands of experts whose job it is to do their best for you. and take every pre-med drug they give you (i didn't think it would have a huge effect but i was pretty dozy on that stuff!)

2. What's it like for the first day or so after surgery? How do you feel? groggy, achy, tempremental...i remember everything apart from recovery (immediately after coming round from surgery) however your pain should be well managed, and if it's not, complain about it. you shouldn't be in huge amounts of pain, the hospital should be giving you everything they have. remind your parents that they don't have to be there the whole time. it's like having a baby - sleep when the baby (or in this case patient) sleeps, take the opportunity to get some rest. when you're asleep is when you won't miss their absence, so impress that upon them, they have to take care of themselves too

3. Do you have much energy to do stuff (read, have a long conversation with someone, etc.) in the hospital? depends very much on how you are. i was happy for visitors 24 hours post op but some people aren't. in my experience the best thing to do is line up visitors but prepare them for cancellation at the last minute if you're not up for it (it can be bad for them as well as you if they're visiting someone who isn't really up to it)

4. How bad is the ride home? My hospital is two hours away. interesting you ask as my journey home should have been a little over an hour and a half but ended up being three hours. make sure you have a car you can be pretty much horizontal in, and stuff it with pillows. take time to ensure you're as comfortable as possible before you set off and then just focus on getting home as fast as possible (doesn't matter about bumpy roads, you probably won't care!) try to travel at a time of day when there is little traffic

5. What type of things should I bring to the hospital? you don't need as much as you think! music, pyjamas, shower gel, lip balm and moisturiser, loose clothes to travel home in (nothing that has to go over your head, can be tricky initially)

6. What were things generally like? I love to hear stories. eep mine's so long! email me if you want more: yourmatemarmyte@hotmail.co.uk

7. Is your mobility as good as it was after surgery? Will I still be able to play sports well? most surgeons say no exercise for 6 months, though i've almost got away with murder: at my 6 week appointment my surgeon practically ordered me to start swimming and even said i could ride a horse and drive again!

(NB - i'm 18 so used to a lot of independence plus my fusion is only T11-L3 and my recovery has been pretty darn good, from what i hear, it's quite rare for restrictions to be lifted so early, so don't expect too much) but regarding flexibility, i've lost very little and eventually i should be pretty much as i was, just straighter, in no pain and having a waist on both sides of my body!

good luck, i hope it goes well for you

**carolnj** · 09-25-2005, 11:01 AM

Hi Scoli-girl,

My son had anterior surgery on June 22, 2005, and is doing really well. Here's my answers and if you would like to get feedback from my son (17 now, 16 at surgery time) I'll ask him as well. But here is what I learned and observed:

1. When surgery's really close and you start to get nervous, what helps you relax?

I am a tense person to begin with so what really helps me is a good physical outlet like a long walk or a run or taking an aerobics class. My son did not appear to be that nervous - he is the type that just accepted it had to be and wanted to get it over with. The morning of the surgery, the anesthesiologist (sp?) came in to get him ready and gave him a relaxant of some kind which really took the edge off before he headed down the hallway. You may want to ask or have your parents ask about that.

2. What's it like for the first day or so after surgery? How do you feel?

When he came out of surgery and into recovery, he was happy to learn it was over and was still in la la land for the most part. The first 3 days (which he spent in ICU) alternated between terrible and okay. It was a bit strange because during the day, he seemed okay although with all the medications he was still not himself. He watched a movie the afternoon of the first day after surgery and received some text messages from his friends on his dad's laptop. But then, he would crash and be out of it and sick from the medication. I don't want to sugar-coat it for you. He wasn't in tremendous pain because the pain management team was totally awesome, but the first few days are a challenge. After that, it was like someone flipped a switch, they pulled the chest tube, removed the catheder, got him on his feet and then it was straight uphill from there. He was moved into a regular room at the end of the 3rd day and came home on the fifth day after surgery.

3. Do you have much energy to do stuff (read, have a long conversation with someone, etc.) in the hospital?

He really didn't. He would appear like he was but then when you would talk to him, you realized he wasn't really himself due to the medications. He wanted to read the first night because with all the noises and stuff in ICU and some anxiety from the medications, he couldn't sleep. But, he couldn't hold the book or even focus on the words. In fact, at first, I was afraid his vision was affected somehow but it was just the medications. So, I read to him through the first few nights. He said that the sound of my voice was calming to him - just knowing I was right there and hearing something familar.

4. How bad is the ride home? My hospital is two hours away.

We were concerned about the ride home too but it turned out to not be that bad. By the time he came home, he was only taking tylonel with codeine for pain. He took two pills 30 minutes before we left and I drove slowly and tried to avoid the bumps. He sat in the front seat with the seatbelt on and was fine.

5. What type of things should I bring to the hospital?

Well, it might be different for you since you are a girl, but really, we didn't need to take anything. I packed a bunch of stuff and we never even opened the bag. He took boxers as they provided him with more privacy under the hospital gown - made a big difference when he was able to get up and walk in the hallway because he's a big guy, those gowns don't cover as well as with a petite person. So, he felt like he was wearing shorts and didn't feel self-conscious when the gown parted in the back when he walked.

6. What were things generally like? I love to hear stories.

The care he received was phenomenal. I have so much respect for the nurses. The surgeon and the doctors' skill are amazing, but it is the nurses who do all the hands on care and they are simply tops in my book. I was so scared and cried when he was wheeled down the hallway into surgery, but once he was out and I saw him move his fingers and toes, I knew we were on the upside and just stayed positive for him. He, for his part, did amazing. I am so proud of him. He never complained and just did what he had to do to get out of the hospital. He really took it all in stride and just got through it.

7. Is your mobility as good as it was after surgery? Will I still be able to play sports well?

He wasn't a sports person so I don't have an experience to share with you, although he was told no contact sports for a year (maybe more but as I said this isn't an issue for him) and no roller-coasters or any type of jarring activity. The doctor wrote him out of gym for the year. His doctor told him he could start walking outside and encouraged him to do so around 2 weeks. At 3 weeks, he told him he could start swimming for exercise. It took a while for him to be able to sleep in his own bed due to issues getting back out once he was in. By 8 weeks after surgery, he was able to sleep in his own bed again. Now he is back in school, working a part-time job and driving (!!). I think it all depends on the person and what your doctor allows.

**starchild_81212** · 09-25-2005, 06:59 PM

1. When surgery's really close and you start to get nervous, what helps you relax?talking to your friends about nothingness and being really like goofy helped me

2. What's it like for the first day or so after surgery? How do you feel?
first day or so your all drugged up so you feel really tipsy sneakers make ur feet feel like bricks just a tip

3. Do you have much energy to do stuff (read, have a long conversation with someone, etc.) in the hospital? i didn't read i talked forrever with my friends and family on the phone but you will get really tired doing it

4. How bad is the ride home? My hospital is two hours away.
mine was 3 hours away its not so bad if ur in the front seat its tilted back and your on your sidei had a posterior also with bunches of pillows

5. What type of things should I bring to the hospital?
clothes,cds,game systems, crosswords,movies,anything that makes you happy i took my blanket cuz i've been in the hospital before with a head injury and it gets cold and there blankets suck
well my hospital
6. What were things generally like?well my hospital sucked i didn't get a privet room i shared an obs unit wiht 2 guys which is against the law.the little button i had was linked to the outer desk instead of the inner one.there was barly ever a nurse in the room. i had some wako room mates i had like i think 4 total some wako who just woke up from a coma and was eating something thaty made my stomach do flips.one who was in a car accident,one who had another scoliosis surgery cuz he crashed his dirtbike and broke a rod and my friend who lives in like a different state who has a scoliosis surgery i was outa there in 3 days....i am so glad

7. Is your mobility as good as it was after surgery? Will I still be able to play sports well?well im 4 months post op i got up and walked around the 2nd day alot went down stairs in a wheel chair ate lunch.third day walked around the top ward (at denver childrens you have to do that before you cant leave the hospital after scoliosis surgery) i dive,do back bends,marching band, tennis,soccer, i play sports pretty well still

hope this helps!!!! good luck

it'll all be cool! smile be happy and hang in there!!!

**ANIMAL LOVER12** · 09-25-2005, 07:48 PM

1. When surgery's really close and you start to get nervous, what helps you relax?

I talked to my freinds, and sometimes my parents. My freinds were really good at making me not think about it because we laugh a lot, so they made me feel better and forget about it.

2. What's it like for the first day or so after surgery? How do you feel?

When I woke up in recovery I was pretty sore, but I was also pretty out of it. For the majority of the time that I was in recovery, I was asleep. The day after I was pretty sore, but the medication helped a lot. If you're in a lot pf pain and your pain isn't being managed, speak up! They can do something to keep you comfortable. The pain won't be completely gone, but it can be managed. When I woke up I had an IV (there might've been two..I forget) I think a mask for oxygen (then it was changed to the little prong things later on), a little clip on my finger and a cathetar.

3. Do you have much energy to do stuff (read, have a long conversation with someone, etc.) in the hospital?

I didn't have the energy to do any of that. I flipped through the pages of a magazine about 5 or 6 days after surgery, but I didn't read much of it. Even during movies, I'd stay awake for about half of it and then I'd fall asleep. I had visitors when I was in the hospital, but I didn't have any long conversations with them. I'd talk for maybe a minute or two and I'd fall asleep again. Walking around after surgery gets you tired too.

4. How bad is the ride home? My hospital is two hours away.

The ride home wasn't too bad. My ride home was about 45 minutes to an hour. I brought two pillows with me, and I sat on one and put the other behind my back. I was pretty comfortable to whole way home.

5. What type of things should I bring to the hospital?

You won't need much. I brought a bunch of clothes and I didn't even put my own clothes on until the day I left. I brought chapstick with me, and I used that a lot because my lips were all dry. I also brought my body pillow, and I used that a lot. Oh, and my teddy bear was good to have!

6. What were things generally like? I love to hear stories.

Things were okay. I was in pain, but it was well managed. I was in the recovery room for about 3 or 4 hours following surgery, then I was moved to a constant observation room for the night. In the morning, I was moved to a private room, where I stayed for a week. My mom stayed with me the whole time I was in the hospital.

7. Is your mobility as good as it was after surgery? Will I still be able to play sports well?

It's been 5 months since my surgery and my mobitlity seems pretty good. I can bend forward (not as much as before, but I still can) at the waist. I'm not allowed to play sports yet, but once I am I'm sure I'll be able to play fine.

Hope that helped!

**violinprincess3** · 09-27-2005, 04:55 PM

I had spinal fusion surgery about three years ago, and I'll try to answer your questions as good as I can.

1. When surgery's really close and you start to get nervous, what helps you relax? a week before i had my surgery i went on vacation with my best friend and her family. she has other medical disabilities, so we have a good support system for eachother

2. What's it like for the first day or so after surgery? How do you feel? i was in the hospital for twelve days after surgery, mostly because i couldnt keep anything in my stomach. there's a lot of pain, so you won't feel like doing much. and depending on what hospital you're at, the nurses will come in at least every half hour to take your vitals

3. Do you have much energy to do stuff (read, have a long conversation with someone, etc.) in the hospital? i didnt really feel like doing any of those things, because i was in pain and really tired, so i guess the best answer would be 'probably not'.

4. How bad is the ride home? My hospital is two hours away. mine is about one and a half. it may hurt if there is a bumpy road, you may want to avoid being in the car for the first few weeks after surgery. of course, you can't really avoid the drive home, so just have whoever's driving go as slow and carefully as possible, take pillows to help you be more comfortable, and try to take smoother roads

5. What type of things should I bring to the hospital? i brought a picture of my dog that was taken the morning of my surgery because i knew i would miss him, also a picture of my brother who was dressed up as a girl. i did that the day before my surgery :P. i also took some board games and some paper and pens because i like to draw, along with some of my favorite movies to watch, since each room at my hospital had a tv and vcr

6. What were things generally like? I love to hear stories. um... painful is the best way to describe it. im not trying to scare you, but it does hurt. i was in the icu (intensive care unit, not sure if you knew what it meant) for 6 days and i had a chest tube in one of my lungs because they had to deflate a lung. some occupational and physical therapists came, the occupational mostly to test my motor skills and the physical therapists to torture me lol. i finally left after 12 days, which was the happiest day of my life.

7. Is your mobility as good as it was after surgery? Will I still be able to play sports well? mobility is a bit restricted, especially if you are wearing a brace. also, depending on your doctor, most doctors don't want you to play sports for at least 6 months after your surgery, i think mine said 6-9 months.

so, if you want to know more or if you just want to talk, write back

btw what hospital are you getting your surgery at? mine was at children's hospital of philadelphia

**ScolioGirl** · 09-27-2005, 05:18 PM

Thanks for all the informative replies everyone! I appreciate it sooo much. I'm getting surgery at the Cleveland Clinic, which has a HUGE campus! lol we got lost trying to find the orthopedic building. Anyway, I want to thank everyone for the great responses

**thesatindoll** · 09-28-2005, 12:28 PM

hey hey

i'm waiting to have surgery too....my curve is 70*!!!

I can only really answer the first question....

i feel nervous whenever i think about the operation but a good time with my friends or if i sit in bed and watch a movie with a lot of chocolate it always makes me feel better, sometimes all you need is a bit of comfort..

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