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ksmom0611
11-25-2014, 12:04 PM
Hello, this is my first post,though I have been lurking for a while. I have been scared, relieved, and inspired by so many things i have read here. There is so much strength expressed by everyone! I was braced for 2 years starting at age 12 and have had worsening back pain and an increasingly miserable back since then. I'm 42, working, and my back is now at 61 and 47 degrees (where is that little circle thing?) thoracolumbar curve. I have seen Dr. Errico, Dr. Lonner, Dr. Cunningham, Dr. Schwab, Dr. Propisaltis in NYC. I've been told it's inevitable and that I need fusion from T4 through S1, hoping it's only posterior but maybe anterior as well. I also have every kind of problem between discs: stenosis, spondylolisthesis, osteophytes, facet joint disease, etc. I've had every pain management technique done. I am not a fan of painkillers and try to avoid them. So I have been crying every day for 2 months at the thought of this surgery looming. I haven't officially scheduled it yet, but it will probably be in January or February 2015. I'm telling myself it will be a bad year, but that the next one will be better. I have 2 young children and the thought of not being able to pick them up, have them sit on my lap, rock them, bring them to school, participate in school functions, and scaring them with all of this is just heart breaking. I feel like I'm going to explode a bomb in their lives. I have a good support system and we will all cope together. I'm hoping this forum can add to that because no one can really know what it's like unless you've been through it.

I do have some questions. For those who have seen both, why did you choose Errico over Lonner or other way around? Any feedback on NYU hospital vs Beth Israel in NYC? Would you recommend a private room? A private nurse? (I almost died from a gallbladder procedure and no nurse was around. My husband literally saved my life, so I'm really uncomfortable with just being on a regular floor). Does anyone know the rates for those two things?

I'm concerned about the immediate and 2 month periods after surgery. I've read something about not being able to move your arms much, but don't know the details. Can you fill me in? Are you very bruised? (not that I will care, but I want to warn my family). Do you stay on your back in the hospital bed? I know they move you and want you to stand/walk, etc., but I mean times other than those. Are you flat on your back or angled? How long does the catheter stay in? Did anyone use an enema before surgery to avoid bowel problems? I know I will have many more questions, but these are the starters.

I'm worried about tush wiping. Anyone willing to say how the "assistive device" works? Was it awful?

What happens if you ever have to throw up the rest of your life? Strange question, I know, but we do get stomach bugs. :)

Did you find yourself inadvertently bending in the first few months? After all, it's a lifetime of habits to change.

Can you sit with your legs crossed?

Do you feel like your life changed into the "before" surgery and "after" surgery categories? Is one better than the other? I know what my life is like now, but not what it will be like, and I'm so scared to make that change.

How do people have sex afterwards? I've read all the info, and no doctor wants to talk about it - ugh! But it's reality, and it's an important part of married life (any life).

Any other words of wisdom? Anything you wish you would have known before you had the surgery? Any suggestions on how to prepare?

Thank so much!

PeggyS
11-25-2014, 01:12 PM
Welcome to the forum! I'm almost a month post-op & I can answer a couple of your questions.
I was able to lift my arms to put on a shirt a week after surgery. (T3-S1) I was fretting about not having enough button-down tops.
The bottom buddy has been a necessity for me. My advice is to practice using it at home prior to surgery!
Good luck with your decision!

ksmom0611
11-25-2014, 02:05 PM
Oh boy! The Bottom Buddy! I guess we have to keep our sense of humor! I can honestly say I never thought I would need a buddy there! So, I looked at it, and maybe I'm just not very good at 3 dimensional visualization, but do you reach back with your arm and use it around the side? Sorry for the details....If you can't move your arms, how are you supposed to do that??!! I'm going to have to think about this...lol

PeggyS
11-25-2014, 03:47 PM
There's a little groove to stick the t paper in & then wrap it around a few times. I can use my arms, so for a BM, I reach from the back & wipe forward - contrary to previous teachings on "how-to" wipe. I use flushable wet wipes. You can ask nurses or techs to wipe you, but that isn't much fun! You're right, this is a weird conversation, but where else can ask?!

ksmom0611
11-25-2014, 04:12 PM
Thank you so much for your openness!! I really appreciate it. It's a silly thing, but it's been on my mind.

Rise
11-25-2014, 05:05 PM
Hi KS and welcome! Your post reminds me so much of me. I was terrified and put off the "inevitable" for years (35 of them!). I think you do reach a point where it just becomes a quality of life issue and the decision kind of makes itself.

I'm 4 1/2 months post op and 49 years old.

I had my surgery at HSS in NYC and from my experience the care just doesn't get better than I received there. I found that I definitely did not need a private nurse (although it was always an option). From the moment I woke up in PACU I don't recall ever being in pain. There was obvious discomfort and very weird and frightening sensations but not really pain. My surgery was all posterior T9-sacrum, and lasted about 6 hours. There was significant swelling (facial) but it lasted only until day 2. After that I looked perfectly fine. They got me up on day 1 but literally only for a couple of steps. PT went slow with me and I was walking by day 3 and doing stairs by day 4. As far as a private room goes I opted not to go that route - VERY expensive. I had one roommate for my entire stay and was extremely lucky as we were very compatable and actually looked out for each other when my husband wasn't there.

I had no problem at anytime lifting my arms and dressed myself to go home in sweatpants and a t-shirt. Shoe tying was and still is tough but doable.

Getting comfortable is a challenge. You can turn and sleep on your side but it's a bit of an ordeal and not comfortable for very long. Sleeping on your back is just something you get used to. I've always been a stomach sleeper and while I still can it isn't quite as comfortable as it used to be.

In the very beginning wiping myself was awkward and I even bought one of those bottom buddies. It's still in it's package. I never used it and don't need it. You learn to adjust.

One of the biggest complaints I have is sitting for extended periods is tough and not real comparable with a desk job but I'm only 4 months along so I'm sure that too will improve.

Feel free to PM me with any questions.

Best of luck.

Risë

susancook
11-26-2014, 12:21 AM
The butt wiper? I learned from an OT in SF just how to do it. Here is the Mercedes Benz way.

Use the salad tongs (not the ones from your kitchen because when you need them from the kitchen, you can't go back). I own about 5 sets of butt wiper tongs.

Take 3 sheets of LARGE baby wipe sheets (Costco), lay them one on another and make a taco around the tongs.

Stand up, reach w-a-a-a-ay back and do your hygiene.

I will try to add a post of a video on how to made a wet wipe hygiene wiper when I figure out how to do it.

Also, throw in the garbage, because it can stop up your toilet.

Susan

mabeckoff
11-28-2014, 12:02 AM
Welcome to the forum.

This is the place where you can get all of your questions answered.

I am sure that I am fused more than you will be. I am fused from C2 to my pelvis.

Yes , after healing, you will be able to have sex again. You will have to try to find what positions work for you.

Melissa

green m&m
11-28-2014, 07:13 AM
I'm not fused to sacrum and it was never offered as an option for my curve levels thankfully (For now...haha).

I'll second Rise and only have excellent things to say for HSS staff. Going in I was a bit scared after witnessing nursing care I've seen received by other family members at other hospitals and was scared not to be able to afford a private nurse.

HSS staff were fantastic, my nurse or tech wasn't more than few minutes away if I called them. Most I'd wait was around 10 minutes during shift changes -- esp if it overlapped any meal/vital signs times. The PT department knows what they are doing since after all they are exclusively orthopedic. All the nurses are well aware of the don'ts spine patients. After the first day I didn't feel I needed a private nurse. Most of my night nurses actually enjoyed the night shift and wanted to be there. I had one shudder at the though of day shift and say Oh no, I can't work the day shift, there's just to much going on. I had two different roommates; one was cervical and the other lady was two-stage scoliosis fusion.

As for NYU, though I've never had anything major done there I no longer have anything good to say about them. All my doctors used to be at NYU for seven years but I left/fired them all December 2013 and switched my care over to Cornell-NYP/HSS/MSKCC. Long story short, NYU didn't have it together in my case, no one saw the entire picture and all had their own little drums out. I wish I had seen all the holes earlier and switched years ago because I made the switch during one of the worst times in life (in terms of medical stuffs). In a weird twist of faith my main doctor that was at Cornell-NYP is now at NYU to fix the clinic I had left... so looks like I'm going back to NYU but I'm keeping every other doctor uptown.

For arms I had pain when I'd move them up to wash hair/tie hair up for two weeks after. Pain didn't fully go away until maybe week... 4? Pain was around the spine and scapula, particularly worse under the scapula. I could with care wash hair on my own at week 3, as long as i had some help in the shower.

I can cross legs and even sit 'indian style' but I also have free levels and am very hypermobile in all my joints. I could put on socks by myself in the hospital by putting one foot on the other knee which brought my foot in the reaching distance of my hands.

Don't use butt buddy or any other bottom aids, but do use lot more wet wipes.

Installed handheld shower head and a suction-cup shower head holder. The suction cup allowed the holder to be mounted anywhere so I could keep the shower head within my reach while sitting on the stool. The item in this link is what I have. http://amzn.com/B001CFACMI

HSS makes you do fleets enema night before surgery. (Didn't do much for me, just pooped water out). Still had bowel issues in the hospital of not having a real BM but severe abdominal pain. My main problem in hindsight may have been not eating much, thanks to nausea. But the small food intake I think prevented constipation. In the hospital I mostly stayed reclined, only went flat on my back to log roll in/out of bed. My nurses/tech eventually learned my preferences and helped me get in 'my' position after bathroom/chair time. You are supposed to sleep/rest in different position at times to prevent bed sores but I was just too uncomfortable on my sides -- to the point where I'd sit up for dressing changes instead of staying on my side.

I couldn't walk until day 2/3 because I was anemic and hypotensive, even just sitting up made me dizzy and nauseous. The first time I did manage to walk a few steps away from bed and back I vomited on the return trip... Blood transfusion helped getting rid of the dizziness and nausea plus returned my BP to normal.

ksmom0611
11-30-2014, 10:56 AM
Are there any parents of younger children on here? My kids are 3 and 8. I'm concerned about how to be s good mom through all of this. Any suggestions?

LindaRacine
11-30-2014, 01:16 PM
Are there any parents of younger children on here? My kids are 3 and 8. I'm concerned about how to be s good mom through all of this. Any suggestions?
Sorry I didn't notice this sooner. You started this thread in the Adult Patients forum (though most of us pay little attention to which forum a post is in.) The forum you want is this one:

http://www.scoliosis.org/forum/forumdisplay.php?101-Idiopathic-Scoliosis

Pooka1
11-30-2014, 01:29 PM
Sorry I didn't notice this sooner. You started this thread in the Adult Patients forum (though most of us pay little attention to which forum a post is in.) The forum you want is this one:

http://www.scoliosis.org/forum/forumdisplay.php?101-Idiopathic-Scoliosis

Linda, she is the patient and was wondering how to take care of her kids through her recovery as far as I can tell. She is not saying her kids are the patients.

ksmom0611
11-30-2014, 03:15 PM
Yes, I am the patient (42 ) and my kids are 3 and 8. Could my 3 year old sit on my lap when I get home from hospital? I knee I can't pick him up, but what if he climbs onto me? Or is placed in my lap?

Also, I am going to see the Dr for the official "this is it, I'm ready to schedule" appointment. I have a long lost of questions to ask, but are there any specific questions you'd recommend? Something you didn't think of before surgery that you wish you would have asked? Did anyone ask about the actual hardware used and the placement of it?

Thanks.

LindaRacine
11-30-2014, 11:00 PM
Linda, she is the patient and was wondering how to take care of her kids through her recovery as far as I can tell. She is not saying her kids are the patients.


Doh...................................

LindaRacine
11-30-2014, 11:05 PM
Yes, I am the patient (42 ) and my kids are 3 and 8. Could my 3 year old sit on my lap when I get home from hospital? I knee I can't pick him up, but what if he climbs onto me? Or is placed in my lap?

Also, I am going to see the Dr for the official "this is it, I'm ready to schedule" appointment. I have a long lost of questions to ask, but are there any specific questions you'd recommend? Something you didn't think of before surgery that you wish you would have asked? Did anyone ask about the actual hardware used and the placement of it?

Thanks.

It's totally up to your surgeon, but I'm guessing they'll say it's fine for your 3 year old to sit in your lap. Something to consider, however, is what happens if she decides to do a backflip off your lap. You will not be able to grab her. You'll need to either hold her securely, or risk a fall.

Not to throw a monkey wrench into the fray, but you might want to consider waiting to have surgery until your kids are a little older. I think it might be beneficial to have them in school for much of the day so that you only have to worry about their care when they're not in class.

--Linda

leahdragonfly
12-01-2014, 07:58 AM
Hi there,

I had surgery 4 years ago at age 42, and my kids were 5 and 8 at the time. It is definitely more difficult with little kids, because you will not feel very good for …several weeks… at least, and there will be a lot of things you can not do with your kids for quite awhile after surgery. You will not be able to pick up your 3 y/o after surgery. You will probably not be allowed to do that for 3-6 months, or maybe longer than that. For me I was never again able to pick up my 5 y/o after the surgery, due to a 6 month lifting restriction. By the time my 6 months restrictions were up, he was over 50 lb and over my permanent weight limit. This includes not being able to pick them up off the floor/ground when they get hurt and want to be comforted, as well as not being able to lift them up onto the counter if they need a bandaid, or into or out of the car if they fall asleep, out of the bathtub, etc. This was sad for me, and my son was 5. I think it would be even harder for a 3 year old because they just have such a hard time understanding that you won't be able to do all the things they are used to.

I used to spend a lot of time sitting on the floor playing with my kids…games, cards, etc. It is now not comfortable or easy for me to sit on the floor, so we play games and cards at the table. It is difficult after surgery to pick up stuff from the floor, so unless your kids are exceptional about picking up all of their stuff it can be hard to get down to pick up stray Lego pieces, dropped crayons, etc. A grabber stick is good for this type of thing. It can be hard during recovery if you are used to keeping a very clean house, because you will physically not be able to do the cleaning chores for months while you are under activity restrictions. Someone else will need to do the cooking, shopping and cleaning for a few months.

I had my surgery Oct 10, and we went out trick or treating for an hour on Halloween of that year. Lots of meds were involved, but it was good to get out as a family that soon after surgery. Outside of that I did a LOT of reading aloud to my kids while recovering, since I could do it while laying down and still do an activity with them. My husband and I made sure our kids knew that I would not be feeling good for awhile after surgery, that I would be sore and tired, and that they needed to help a lot around the house. They were very good about it but it was still hard. As Linda suggested, if waiting a few years until they are a little older is an option you might weigh this in to your decision.

How much help will you have with the kids during your recovery? Is your little one in preschool? Is there someone else to drive the kids around for a couple of months? Many people don't drive until 6-8 weeks post-op, or longer if they are still on narcotics. Is your hospital close to your home, and who will take care of the kids while you are in the hospital? These are all details that should factor in to your decision. I had never been away from my kids before my surgery. My in-laws came and stayed at our house with them while my husband and I were two hours away at the hospital for a week, which was tough on me and my husband.

I don't mean to sound negative about the recovery with small kids…it can be done, it makes it harder but if now is the right time for surgery you and your family will find a way. But if there's any way to postpone for a couple of years, it might be easier.

I am happy to answer any questions you may have about surgery and recovery … please feel free to send me a PM or post here.

ksmom0611
12-03-2014, 02:59 PM
Thank you for the responses! I do have to have surgery now because of the pain and increasing disability. The only things I can do are go to work, come home, and go to bed. I do get the kids breakfast in the mornings but it is getting harder and harder. I have to walk my 3 year old to his classroom at preschool and it is becoming unbearably painful. I can still sit in the bathroom with the kids for baths, and help with soaping, but that's it. Luckily, they get in and out on their own (and my 8 year old does her own bathing/showering).

I really appreciate your honesty, Leah. I hadn't thought of a lot of what you listed. It definitely makes me sad and want to cry. Those are the little things that make me feel like my life will be so different. They have loved with my back problems for a long time, so they know they sometimes need to do things on their own. But not being able to comfort them if they fall, that's heartbreaking.

Linda, I hadn't even thought of the issue of grabbing him (my 3 year old) if he slips off of me. :( I'll have to see what the doctor says and just be careful I guess.

Luckily, my mom is around to help out. She'll basically be moving in with us for a couple of months. Oh boy....lol. The hospital is about 1.5 hours away, so we will have to figure out some logistical things. Both kids go to school, we will have someone help to clean. My husband is amazing and does everything. I'm concerned about the stress on him.

I'm trying to think of everything we need to set up and figure out ahead of time. I'm sure there are things I haven't thought of. Any other tips on things to plan for?

And...I scheduled the surgery for January 21. The countdown has begun.