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twistedRN
03-22-2012, 12:19 PM
Hi Everyone,
I'm new to the site, so please forgive me if I am posting in the wrong place or in the wrong way. I just joined, but have to say thanks for all the reading I have been able to do before I created a login and password. Everyone who has shared their experiences has helped me in so many ways - and I don't even know (most of) you! I formally joined to say thanks for sharing and also to share my story so it might help the next person coming along.
So here is the short story: diagnosed at 19 -no idea what the curves were, but because I had stopped growing at 5'10", they said it would not progress and I was good to go. By my late 20's I noticed some changes and began having regular x-rays. I am currently 49 and my curves are : left thoracic 52ish, right lumbar 59 with significant rotation in the lumbar area. My left scapula sticks way out and I have a right lumbar hump. About 4 yrs ago I had a few consults in the local area (Atlanta) and then went up to see Dr Bridwell about 2 yrs ago. I have seen him 3 times and , long story short, am now scheduled for T3/4 to sacrum fixation next week! I am osteopenic and have also been taking Forteo since December. I'm likely to be on it for at least 6 months postop too. Dr Bridwell felt that my scoliosis, given the progression in the last 20 yrs, would progress significantly in the next 10 yrs. Also, because of the bone density issue, there may come a time when surgery might not even be a possibility. So it's pretty much now or never! :) Anyway, I'm pretty much scared to death, but am trying my best to maintain a positive attitude and just keep putting on foot in front of the other all the way to the preOp room....
I have been in touch with a few lovely ladies from this forum and they have been SO helpful (you know who you are out there!!) - I'd love to hear from anyone/everyone with any advice on how to control these nerves - and what on earth did you do the day and night before surgery to keep from totally freaking out??

loves to skate
03-22-2012, 01:05 PM
Welcome twistedRN,

Wow, It's very hard not to freak out, but strange as it seems, the closer I came to my surgery date, the calmer I became. I listened to Peggy Cuddleston's CD every afternoon. I had friends call me and offered to pray with me over the phone. The day and night before surgery, you will need to shower and apply antibacterial soap. That procedure changes over the years, so what you will do will probably be different than what I had to do. Also, I would recommend that you eat light meals and drink plenty of fluids the day before surgery so that it is easier for the nurses to start IV's on you. (but you probably know that) I also wrote a journal of all of my fears and messages of love to each of my family members. The day of surgery, I was very calm.

You will do just fine. You have a great Doctor and you are way younger than I was by 18 years. I will be praying for you.

Sally

Marina63
03-22-2012, 03:37 PM
Wishing you all the best for your surgery next week!! If it's any consolation, it sounds like you are not only making the right decision in having the surgery done but the only decision. If your curve is projected to worsen in the next ten years, sounds like now is the best time. Mine probably would have worsened but maybe not. I had/have all kinds of doubts. Normal, I guess.

You'll be in great hands and I look forward to hearing updates on your progress.

Best,
Marina

twistedRN
03-22-2012, 03:38 PM
Hi Sally,
Thanks for your kind words! And I sure can use any/all prayers at this time. I kind of know what you mean about calmness. Weird as it sounds, I have felt some of that. I think more like an acceptance, you know? At this point I just really want it over with. I also have that CD but have not listened to it yet....guess I will go download it to my iPod now!

twistedRN
03-22-2012, 03:41 PM
Marina, you look great!! I can only hope and pray my end result will be as good as yours. Thanks so much for all your support.

Doodles
03-22-2012, 03:42 PM
Twisted RN--
Welcome to the forum. All of your concerns sound so familiar. I know it sounds weird but the calmness came for me too before the surgery. I went to St. Louis for the port on a Friday and we kept busy more or less most of the weekend there. I also read Peggy Huddleston book and listened to the CD's a few weeks before. If nothing else, that time spent calmed me and I wasn't obsessing during that time. I always have a terrible time sleeping before something important--let alone major surgery and having to be there at 5:30 AM. I figured it didn't matter much since I'd get a 10-hour "nap" the next day--which I got. Also, I was totally shocked that I did sleep for about 4 hours the night before. Very best to you with your surgery! Janet

JenniferG
03-22-2012, 04:30 PM
Not sure if this might help you, but when I was in my last week pre-op, whenever I found myself focusing on the surgery and the what-ifs, I would force myself to look past the surgery and picture myself living life with this surgery all done and dusted. Straight, pain-free, able to do anything. Taller. Feeling young again. Feeling the relief of no longer worrying about what the future held as my curve progressed. It helped me.

Wishing you the very best outcome and a smooth ride through recovery!

rockycarm
03-22-2012, 07:35 PM
Hi All,

I was just reading all of your posts and thank you too for your input. Today I received my appointments for pre-op testing, mri, ekg, pft, bone, density, blood donation. I am scheduled May 16th and have been doing fairly well up to this point. Seeing this I think has put me over and feeling a bit emotional right now. I have been really trying to stay positive and thought I was until today. HELP! Will I feel like this to the day of? How do I get that calm feeling. I am spiritual and have been praying quite a bit which has helped. I don't want to be an emotional mess.

rockycarm
03-22-2012, 07:36 PM
Hi Everyone,
I'm new to the site, so please forgive me if I am posting in the wrong place or in the wrong way. I just joined, but have to say thanks for all the reading I have been able to do before I created a login and password. Everyone who has shared their experiences has helped me in so many ways - and I don't even know (most of) you! I formally joined to say thanks for sharing and also to share my story so it might help the next person coming along.
So here is the short story: diagnosed at 19 -no idea what the curves were, but because I had stopped growing at 5'10", they said it would not progress and I was good to go. By my late 20's I noticed some changes and began having regular x-rays. I am currently 49 and my curves are : left thoracic 52ish, right lumbar 59 with significant rotation in the lumbar area. My left scapula sticks way out and I have a right lumbar hump. About 4 yrs ago I had a few consults in the local area (Atlanta) and then went up to see Dr Bridwell about 2 yrs ago. I have seen him 3 times and , long story short, am now scheduled for T3/4 to sacrum fixation next week! I am osteopenic and have also been taking Forteo since December. I'm likely to be on it for at least 6 months postop too. Dr Bridwell felt that my scoliosis, given the progression in the last 20 yrs, would progress significantly in the next 10 yrs. Also, because of the bone density issue, there may come a time when surgery might not even be a possibility. So it's pretty much now or never! :) Anyway, I'm pretty much scared to death, but am trying my best to maintain a positive attitude and just keep putting on foot in front of the other all the way to the preOp room....
I have been in touch with a few lovely ladies from this forum and they have been SO helpful (you know who you are out there!!) - I'd love to hear from anyone/everyone with any advice on how to control these nerves - and what on earth did you do the day and night before surgery to keep from totally freaking out??

All the best to you, my prayers will be with you! Keep us posted.

JenniferG
03-22-2012, 11:27 PM
Rocky, there's no easy solution to this. I am sure most of us here have been through it. Like many others, I did feel that calm acceptance closer to my surgery date so it's likely this might happen to you, so now is probably the worst you'll suffer, more so than closer to your date. Perhaps like Melissa, you can hand it all over to a higher power and stop worrying. It's certainly worked for her and I can completely understand how. Or like me, you can spend the time getting as fit as possible. Odd as it may sound, this makes you braver. I had bad anxiety about this surgery, but getting fitter made me feel I could cope with anything. I felt so strong. (I'd love to get that feeling back, but it took 4-5 hours a day exercising to get it and I'm not that devoted any more!) I had a partner who drove me on. I just did as I was told, so in a way, he was my "higher power!"

Keep in mind this surgery is just one day. And you'll sleep through it, with others taking care of you, others who are highly qualified and experienced, and have Just one aim in mind that day: keeping you safe and ensuring the best possible outcome for you. So, I think trust, is key. If you're happy with your surgeon, I think you can have that trust.

Do everything you can to make yourself healthier so that your body tolerates the surgery as well as possible. Eat fresh food, lose weight if you think you need to, get fit, stop smoking if you smoke, cut back on alcohol, you know the drill. This will help give you confidence in yourself. You'll go into surgery knowing you've done everything you can for yourself, to give the best oucome.

The only other thing I can think of, is ask every question that comes into your mind, someone here is bound to be able to answer it for you. The fewer question marks in your head, the less anxiety you'll feel. Go into this thing with all the knowledge you need. Be organised and prepared for recovery. All these things help that little bit towards a calmer, more confident you.

rockycarm
03-23-2012, 05:59 AM
Rocky, there's no easy solution to this. I am sure most of us here have been through it. Like many others, I did feel that calm acceptance closer to my surgery date so it's likely this might happen to you, so now is probably the worst you'll suffer, more so than closer to your date. Perhaps like Melissa, you can hand it all over to a higher power and stop worrying. It's certainly worked for her and I can completely understand how. Or like me, you can spend the time getting as fit as possible. Odd as it may sound, this makes you braver. I had bad anxiety about this surgery, but getting fitter made me feel I could cope with anything. I felt so strong. (I'd love to get that feeling back, but it took 4-5 hours a day exercising to get it and I'm not that devoted any more!) I had a partner who drove me on. I just did as I was told, so in a way, he was my "higher power!"

Keep in mind this surgery is just one day. And you'll sleep through it, with others taking care of you, others who are highly qualified and experienced, and have Just one aim in mind that day: keeping you safe and ensuring the best possible outcome for you. So, I think trust, is key. If you're happy with your surgeon, I think you can have that trust.

Do everything you can to make yourself healthier so that your body tolerates the surgery as well as possible. Eat fresh food, lose weight if you think you need to, get fit, stop smoking if you smoke, cut back on alcohol, you know the drill. This will help give you confidence in yourself. You'll go into surgery knowing you've done everything you can for yourself, to give the best oucome.

The only other thing I can think of, is ask every question that comes into your mind, someone here is bound to be able to answer it for you. The fewer question marks in your head, the less anxiety you'll feel. Go into this thing with all the knowledge you need. Be organised and prepared for recovery. All these things help that little bit towards a calmer, more confident you.


Thank you so much for all of your input. I value this tremendously and will probably be leaning on you all more so thank you for being here, truly. Feeling a little better this a.m.

Doreen1
03-23-2012, 10:36 AM
Hi Everyone,
I'm new to the site, so please forgive me if I am posting in the wrong place or in the wrong way. I just joined, but have to say thanks for all the reading I have been able to do before I created a login and password. Everyone who has shared their experiences has helped me in so many ways - and I don't even know (most of) you! I formally joined to say thanks for sharing and also to share my story so it might help the next person coming along.
So here is the short story: diagnosed at 19 -no idea what the curves were, but because I had stopped growing at 5'10", they said it would not progress and I was good to go. By my late 20's I noticed some changes and began having regular x-rays. I am currently 49 and my curves are : left thoracic 52ish, right lumbar 59 with significant rotation in the lumbar area. My left scapula sticks way out and I have a right lumbar hump. About 4 yrs ago I had a few consults in the local area (Atlanta) and then went up to see Dr Bridwell about 2 yrs ago. I have seen him 3 times and , long story short, am now scheduled for T3/4 to sacrum fixation next week! I am osteopenic and have also been taking Forteo since December. I'm likely to be on it for at least 6 months postop too. Dr Bridwell felt that my scoliosis, given the progression in the last 20 yrs, would progress significantly in the next 10 yrs. Also, because of the bone density issue, there may come a time when surgery might not even be a possibility. So it's pretty much now or never! :) Anyway, I'm pretty much scared to death, but am trying my best to maintain a positive attitude and just keep putting on foot in front of the other all the way to the preOp room....
I have been in touch with a few lovely ladies from this forum and they have been SO helpful (you know who you are out there!!) - I'd love to hear from anyone/everyone with any advice on how to control these nerves - and what on earth did you do the day and night before surgery to keep from totally freaking out??

Hi Suzanne!

This is what Jeremy and I did the weekend before my surgery:
Sat - walked in Forest Park and then watched some movies we brought from home
Sun - went to the History Museum, it was too cold to walk outside but I would have if it was warmer, watched movies, took valium about 9p and went to sleep early since we had to get up at 4:45a.

Don't forget, you've got the easy part in your big day - show up at hospital, go to sleep and wake up!

I hope Kevin can send updates. Praying for safe travels and a successful outcome. :-)

Warmly,
Doreen

Doodles
03-23-2012, 10:38 AM
Everyone heading for surgery should read Jennifer's post #10 above. She nailed it!! Janet

Doreen1
03-23-2012, 10:41 AM
Hi All,

I was just reading all of your posts and thank you too for your input. Today I received my appointments for pre-op testing, mri, ekg, pft, bone, density, blood donation. I am scheduled May 16th and have been doing fairly well up to this point. Seeing this I think has put me over and feeling a bit emotional right now. I have been really trying to stay positive and thought I was until today. HELP! Will I feel like this to the day of? How do I get that calm feeling. I am spiritual and have been praying quite a bit which has helped. I don't want to be an emotional mess.

It may be helpful for you to write down which tasks need to be done on which days and then focus on one day at a time; today. Crossing things off my To-Do List gave me a sense of accomplishment and I was actually very excited when my big day came. I only had 6 days to plan for my out of state surgery because I took a cancellation slot that opened up. Continue to pray for you to receive strength, peace and comfort.

Warmly,
Doreen

golfnut
03-23-2012, 03:47 PM
Hi, Suzanne,
You will do fine. You have a good attitude and an excellent surgeon. I tried to not think about the surgery, but to think positive thoughts like, "A week from now my back will be straight" or as they say on this forum "A week from now I'll be on the other side and start my recovery". I noticed Jennifer said about the same thing in her post to you. She is probably the one who gave me the advice before my surgery and it seemed to help me. I was still totally scared, but just knew that my future was going to be better if I had the surgery. I'll be sending postive thoughts and prayers your way.
Karen

P.S. Welcome to the forum!

twistedRN
03-23-2012, 07:29 PM
Hi Everyone!
Thanks so much for all your great advice - I definitely plan to put it to good use. I am leaving for St Louis tomorrow morning, spending the night in Nashville to arrive in SL Sun. Mon is all my preOp stuff and Tues is the big day. I will definitely keep you all posted and will write more from SL. rockycarm - please don't let my rambling worry you!! I have good days and bad, like all of you. The past couple of days have actually been quite peaceful. I have been nervous, but almost kind of (and I hate to use this word) excited??? I mean, I am just so glad that it is finally here and about to be over with. I am glad that I am almost ready to get on with the rest of my life. Make sense? I liked the visual of imagining the rest of my life with a straight(er) and stronger back!
The only downside is that I am having to leave my sweet dog of 9 years home, and sick. She has been urinating blood for 2 wks and antibiotics are not working. She will have an ultrasound next week and they are hoping (best case) it is stones or (worst case) a tumor. We both need your prayers next week! Thanks again for everyone's support - you guys are truly a Godsend.
Suzanne

scooter950
03-23-2012, 11:47 PM
Hi Twisted RN, I'm a nurse too and my dog had bladder stones too how strange we have that in common!

Well I have no advice, my surgery date is not set yet, but it sounds like everyone gave you good advice already. Ask the surgeon for po Valum so you can relax the night before surgery. maybe that will help? and please keep us posted! God bless and travel safe! Jamie in Texas

kootenaygal
03-24-2012, 02:19 AM
Welcome to this forum! I can totally sympathize with you...as I will be having surgery this year.
I'm 61, have a kyphosis & scoliosis. My spine has collapsed, and my ribs are now sitting on my hips. Very painful. This surgery is a "must", so prevent anymore collapse. I will be seeing my surgeon for another consult in May. I've been waiting for a long time...and that's the worst. So hopefully my surgery will be shortly after my consult...I hope. But whenever, it has to be done. I'm looking forward to my consult...another step closer. Like you, it frightens me...but after reading so many replies, & the advice offered here, I know I'll be ok.
I pray that your surgery goes well. We'll all be looking forward to your next posting!
Thinking of you!
Kootenaygal

rockycarm
03-24-2012, 06:34 AM
Hi Everyone!
Thanks so much for all your great advice - I definitely plan to put it to good use. I am leaving for St Louis tomorrow morning, spending the night in Nashville to arrive in SL Sun. Mon is all my preOp stuff and Tues is the big day. I will definitely keep you all posted and will write more from SL. rockycarm - please don't let my rambling worry you!! I have good days and bad, like all of you. The past couple of days have actually been quite peaceful. I have been nervous, but almost kind of (and I hate to use this word) excited??? I mean, I am just so glad that it is finally here and about to be over with. I am glad that I am almost ready to get on with the rest of my life. Make sense? I liked the visual of imagining the rest of my life with a straight(er) and stronger back!
The only downside is that I am having to leave my sweet dog of 9 years home, and sick. She has been urinating blood for 2 wks and antibiotics are not working. She will have an ultrasound next week and they are hoping (best case) it is stones or (worst case) a tumor. We both need your prayers next week! Thanks again for everyone's support - you guys are truly a Godsend.
Suzanne

Suzanne, It sounds like you are in a good place mentally. I am sorry to hear about your dog, been there too. It's like having another child for sure. My prayers to you all - may time pass quickly. I want to tell you all that I feel much better because of all of you, so again thank you all for being here.

titaniumed
03-24-2012, 05:00 PM
Just wanted to chime in on those going in.....remember, deep breaths! things are going to be fine.

Always have a positive attitude. Never think back, always look forward.....think healing thoughts.

And since there are a few nurses here, be thankful that medical science has improved so much from the old days.....here is a pic of the old days..... Chuckle, chuckle



Ed

jrnyc
03-24-2012, 05:46 PM
Suzanne, prayers for you and puppy too....
may you both be fine...

jess

nanlo
03-24-2012, 07:48 PM
twistedRN: So nice to see you here!! I hope you can feel all the love and support coming your way from those of us who have "made it to the other side"! I have one more silly thing to add that I did to help me calm down. I pretended that it was 2 weeks post op, and wrote daily journal entries starting with the night before surgery. It sounds funny, but it helped me to visualize details about waking up and being in the hospital, daily progress in my recovery, and homecoming. Of course it was all best case scenario (!)
Looking forward to hearing great news on Tuesday!
Nancy

Doodles
03-24-2012, 09:06 PM
Suzanne--
Positive thoughts and prayers coming your way. Best wishes. We'll be anxious to hear how you did. You'll do great! Janet

twistedRN
03-24-2012, 10:25 PM
Hi Everyone,
I was so looking forward to logging on tonight and hearing from all my new pals! Thanks again for all the wonderful advice and support. We are in Nashville and spent some quality time browsing through a great mall today (my hubby is being unusually accomodating to such things this past week, ha!). Didn't buy much but it did take my mind off of things for a while. Tomorrow we'll drive the rest of the way to St Louis and settle in to the Residence Inn. I heard the other day that on Monday my schedule will be as follows : meet with the doc at 7, cardiology at 8:30, anesthesia at 9:30 and central line at 10:30. Someplace in there I am also supposed to be doing a treadmill test because I am part of an adult scoliosis study...not sure when that is happening? I am tentatively thinking about hitting a late aft/early evening show of Hunger Games on Monday night to keep me focused on something other than what is happening on Tuesday...I'll be in touch!
Suzanne

Marina63
03-25-2012, 12:06 PM
Thanks for keeping us posted, Suzanne!! Will be (and have been!) thinking about you!

backissues
03-25-2012, 03:19 PM
It's all been said above. But, I'll reiterate a few things.

Listening to the Huddleston CD before surgery and after was really helpful for me. Having your iPod with music in the hospital is really all you need. Somehow, with all the drugs, it isn't easy to concentrate.

All you have to do is "show up" for the surgery. You've chosen a great team. It isn't easy but, "Let them fly the plane." It was difficult for me to "surrender" my control, but I did it and I'm glad.

You'll be in my thoughts and prayers.

Good luck!!
Irene

golfnut
03-25-2012, 07:48 PM
Suzanne,

I am in the "Treadmill Study" as well. I think Doreen might be, also. I just got a letter yesterday telling me to wear tennis shoes to my 2 year appointment so that I can do the treadmill, again.

I think Jennifer nails great advice possible 100% of the time. In fact, I was thinking tonight that she should author a book with questions and answers about scoliosis surgery using all of her posts from this forum.

I want to read "Hunger Games" now that I've heard so much about it. Let me know what you think of the movie.

Best of luck with your surgery. We'll look forward to hearing from you "from the other side."

Doreen1
03-25-2012, 09:07 PM
Suzanne,

I am in the "Treadmill Study" as well. I think Doreen might be, also. I just got a letter yesterday telling me to wear tennis shoes to my 2 year appointment so that I can do the treadmill, again.

I think Jennifer nails great advice possible 100% of the time. In fact, I was thinking tonight that she should author a book with questions and answers about scoliosis surgery using all of her posts from this forum.

I want to read "Hunger Games" now that I've heard so much about it. Let me know what you think of the movie.

Best of luck with your surgery. We'll look forward to hearing from you "from the other side."

Yup, I'm participating in the Bridwell/Lenke study too. Lizzie has the Hunger Games trilogy which I read last Sep/Oct. I was shocked at how I couldn't put the books down! Lizzie was on a Girls Retreat in Charleston SC this weekend and she got home too late to catch the movie tonight so we'll see it tomorrow. Jennifer Lawrence, actress who plays Katniss, was trained by a female Olympic athlete; Lizzie is a member of the Junior Olympic Archery program and has been trained in the same style. This will be my second postop movie. :-)

Warmly,
Doreen

mabeckoff
03-25-2012, 09:47 PM
Suzanne,

I am in the "Treadmill Study" as well. I think Doreen might be, also. I just got a letter yesterday telling me to wear tennis shoes to my 2 year appointment so that I can do the treadmill, again.

I think Jennifer nails great advice possible 100% of the time. In fact, I was thinking tonight that she should author a book with questions and answers about scoliosis surgery using all of her posts from this forum.

I want to read "Hunger Games" now that I've heard so much about it. Let me know what you think of the movie.

Best of luck with your surgery. We'll look forward to hearing from you "from the other side."

I did not see the movie but my 17 year old son did. He was very impressed with how much of the book came thru into the movie

Confusedmom
03-25-2012, 10:02 PM
Hi guys, I'm back! I'm in that study, too. If it's the one I think, you have to have 80+degree curves to qualify.

Anyway, one point I'll add about pre-op jitters. Mine never did go away. But I kept reminding myself what would happen if I didn't have the surgery. Most likely debilitating pain, possible osteoporosis (I have osteopenia now), and who knows whether I would have gotten a second chance with dr. Lenke. Then there were all the scheduling nightmares to consider.

Honestly, I was in tears up until the point where they put me under (and I'm not normally a cryer), but deep, deep down, I guess I just resigned myself to the fact that it had to be done. The good news is, the surgery itself is easy. You don't feel them putting you under, and then you wake up several hours later with someone telling you tommove your toes. I'm not sure how much all this helps, except to say: think about the risks you would be taking by NOT having the surgery.

Best wishes,
Evelyn

titaniumed
03-26-2012, 12:38 AM
Evelyn

You sound fantastic! Are you back home?

Ed

Doreen1
03-26-2012, 06:50 AM
Hi guys, I'm back! I'm in that study, too. If it's the one I think, you have to have 80+degree curves to qualify.

Anyway, one point I'll add about pre-op jitters. Mine never did go away. But I kept reminding myself what would happen if I didn't have the surgery. Most likely debilitating pain, possible osteoporosis (I have osteopenia now), and who knows whether I would have gotten a second chance with dr. Lenke. Then there were all the scheduling nightmares to consider.

Honestly, I was in tears up until the point where they put me under (and I'm not normally a cryer), but deep, deep down, I guess I just resigned myself to the fact that it had to be done. The good news is, the surgery itself is easy. You don't feel them putting you under, and then you wake up several hours later with someone telling you tommove your toes. I'm not sure how much all this helps, except to say: think about the risks you would be taking by NOT having the surgery.

Best wishes,
Evelyn
Hi Evelyn

Are you home yet? I hope so. The Lenke study I'm in is to gauge how patients respond to either having surgery or not having surgery in terms of how their pain changes or doesn't change. I did not have 80 degree curves so maybe u are in a different study?

Welcome to the other side!

Warmly
Doreen

Confusedmom
03-26-2012, 12:04 PM
Hi all,

Yes, it's me and I'm home!!!!!! I tried to post a big, long blow-by-blow of everything that happened. But between me working on an iPhone (can't sit up for long yet) and all the post-op medication, I think I never got it posted. Anyway, long story short I am home and doing well. I am in pain, especially sitting, but coping. Doing my little walks, taking my meds, stretching my legs, using the spirometer and napping a lot. I will write a longer message on my usual thread when I am up to it. Nap time now. :)

Btw, I did get 1.5 inches taller. Now if I could just get rid of that 4-5 months pregnant look. Oh, and washing the hair might help, too.

I want to figure out how to change my username to "straightenedoutmom." what do you think?

Best,
Evelyn

mabeckoff
03-26-2012, 01:22 PM
Glad that you are home and are doing OK

BetsyK
03-26-2012, 01:44 PM
Suzanne,
I've been thinking about you the past several days, wondering how you're doing with the anticipation. Let us know how you are!
Betsy

BetsyK
03-26-2012, 02:05 PM
Hi All,

I was just reading all of your posts and thank you too for your input. Today I received my appointments for pre-op testing, mri, ekg, pft, bone, density, blood donation. I am scheduled May 16th and have been doing fairly well up to this point. Seeing this I think has put me over and feeling a bit emotional right now. I have been really trying to stay positive and thought I was until today. HELP! Will I feel like this to the day of? How do I get that calm feeling. I am spiritual and have been praying quite a bit which has helped. I don't want to be an emotional mess.

How are you doing after the weekend? I'm scheduled for April 17, so hopefully in early May I can tell you something that will help. For now I'm so caught up in preparing my house, (maybe that's to keep my mind busy, too)it's almost like I've forgotten what I'm preparing for. I think I've convinced myself I'm arranging the house for someone else!
Each step, like when I realized it was only 4 weeks away, or when I got the FMLA paperwork from my HR person, I felt sick. I picture myself with knees too weak to walk into the hospital. At the same time I'm anxious for it to be over. Enough worry already! We've decided it's the best thing to do, so look ahead, and look forward to getting stronger.
Betsy

LindaRacine
03-26-2012, 02:21 PM
Hi...

I think they're two separate studies. The 80 degree + study is probably ScoliRISK-1 and the other one sounds like the Multicenter Prospective Study of Quality of Life in Adult Scoliosis (ASLS).

--Linda

scooter950
03-26-2012, 02:38 PM
Hi, just following this thread, we're going all over the place it seems, but I was wondering if TwistedRn is back home? Is your name Evelyn? I don't remember seeing your name on your posts! well I bet you're still in the hospital, I hope your husband logs on and gives us an update! (And how is your puppy?)

BTW TiEd, loved the three stooges ! U r crazy! ;D Jamie

Doodles
03-26-2012, 02:42 PM
Evelyn--
So glad you are on the other side and home! Sounds like things sound pretty typical so far. Take care and have a smooth recovery. Janet

jrnyc
03-26-2012, 02:44 PM
hey "straightened mom"
welcome home..congratulations...
wishing you an uneventful and smooth recovery....

jess...& Sparky

BetsyK
03-26-2012, 04:17 PM
How are you doing after the weekend? I'm scheduled for April 17, so hopefully in early May I can tell you something that will help. For now I'm so caught up in preparing my house, (maybe that's to keep my mind busy, too)it's almost like I've forgotten what I'm preparing for. I think I've convinced myself I'm arranging the house for someone else!
Each step, like when I realized it was only 4 weeks away, or when I got the FMLA paperwork from my HR person, I felt sick. I picture myself with knees too weak to walk into the hospital. At the same time I'm anxious for it to be over. Enough worry already! We've decided it's the best thing to do, so look ahead, and look forward to getting stronger.
Betsy

I thought later that sounds a little harsh: "Enough worry" - I'm not saying that to you as much as that's what runs through my head. (You know that OTHER little voice that argues with you?) If we can just make it to surgery day, then the day after, and the week after...... everything will be much better! (there goes that voice again)

Doreen1
03-27-2012, 11:55 AM
Suzanne asked me the other day to share her hubby's updates...

Kevin said the surgery is going as planned and is expecting another update soon.

Warmly,
Doreen

Doreen1
03-27-2012, 12:14 PM
Kevin rec'd another update; almost all the screws are in and proceeding normally.

Doreen1
03-27-2012, 07:01 PM
Kevin said Suzanne came through with flying colors and total surgery time was less than 7 hours. Suzanne was talking quietly, but swollen and tired and then was sleeping at 6:30p. Dr. Bridwell had a minor concern related to her lower back so Suzanne will not be standing tomorrow but will stay on her back for 24 hours. If all looks good tomorrow, she will get into the standing/stepping schedule.

Thanks for all of your thoughts, prayers, and support.--Kevin

Doodles
03-27-2012, 07:17 PM
Suzanne--
Sounds like you are doing quite well. Hang in there and just heal and recover! Janet

golfnut
03-27-2012, 08:05 PM
Suzanne,
We are so happy to hear that you are doing well. I have received emails from your husband during the surgery. What a sweetie! You are successfully on the other side and can soon start your recovery.

Doreen1
03-28-2012, 01:09 PM
Just a quick message to say that all is still going well, though not much has changed since last night. Suzanne is still in the post-op Critical Care Area (CCA) and is being watched closely. This morning early, Dr Bridwell and his surgical fellow, Dr Mesfin, visited Suzanne. We all discussed how well everything went during surgery. Dr Bridwell also talked with us about the need for Suzanne to stay flat, but rotate to her side, return to her back, and to the other side on a 2 hour rotation for each position. That's to address the minor lower back issue with her dura and sacrum that he observed and treated during surgery. He feels very confident that by staying flat through tomorrow morning will allow for full healing of the Dura and she will be on schedule to sit and stand tomorrow. The rotation is a new twist and will help her feel better than being on her back for many hours in a row.

Pain reared its ugly head a bit this morning for Suzanne but we are all being better about staying on a regular schedule of using the pump for pain meds which seems to be really helping the past several hours. Nausea meds have helped her feel much better when taking sips of water, ice chips, and her oral meds. I couldn't begin to list all the meds she's been on today, but its all good.

A physical therapist came in briefly today to do light movement exercises which I think felt good but made her tired quickly. Dr Bridwell's Nurse Practitioner also visted a few hours ago too to make sure all was well and discuss the plan for moving Suzanne to a room on the ortho floor later today.

Suzanne still speaks very quietly, naps most of the time, but stays strong and positive. When the nurse listened for sounds in her belly last night after no food for a few days, Suzanne said "Must be deader than a doornail in there." When the docs and nurses ask how she's doing, she usually says "I've had better days but not too bad".

I'd better go to make sure she hit the button again on the pain med pump. Hopefully in her room, I won't have to leave her to send these messages. Until next time, Suzanne thanks you all for the positive thoughts and kind messages.

Kevin

scooter950
03-28-2012, 07:15 PM
oh my prayers are with her! it's rough to be a nurse AND be a patient HA! Sorry to hear about the complication with her dura, thx for keepin us informed - both Kevin & Doreen or posting his notes! God bless xxx Jamie in TX

Doreen1
03-28-2012, 07:49 PM
Well, Suzanne is finally in her own room on the ortho recovery floor and looks to have a private room, at least for tonight.

She is sleeping pretty soundly right now... start IV nutrition in about an hour which should help her energy level and recovery. Her pain has gone from an 8 or 9 out of 10 this morning to a 2 or 3 most of the day... Everyone on the staff that she has seen today have said that everything seems to be going very well for this stage of the recovery process. We should see Dr Bridwell early tomorrow morning and hope to have a little more news to report then. She may sit and stand for the first time after surgery tomorrow or Friday, depending on Dr Bridwell's observations and gameplan. We'll see.

Suzanne took a call from her Mom and Dad tonight and mostly listened but was very aware of the love and support coming through the phone. She continues to charge ahead with strength and courage in the early recovery phase. Her positive attitude and good rest she's getting can only help from here.

Thanks as always for all of your thoughtful messages and prayers of support.

Kevin

rockycarm
03-30-2012, 03:10 PM
Hi all,

Yes, it's me and I'm home!!!!!! I tried to post a big, long blow-by-blow of everything that happened. But between me working on an iPhone (can't sit up for long yet) and all the post-op medication, I think I never got it posted. Anyway, long story short I am home and doing well. I am in pain, especially sitting, but coping. Doing my little walks, taking my meds, stretching my legs, using the spirometer and napping a lot. I will write a longer message on my usual thread when I am up to it. Nap time now. :)

Btw, I did get 1.5 inches taller. Now if I could just get rid of that 4-5 months pregnant look. Oh, and washing the hair might help, too.

I want to figure out how to change my username to "straightenedoutmom." what do you think?

Best,
Evelyn

Wonderful! all the best on your recovery. It sounds like it is going pretty good. Love to hear more - May 16th is right around the corner!

rockycarm
03-30-2012, 03:22 PM
Just a quick message to say that all is still going well, though not much has changed since last night. Suzanne is still in the post-op Critical Care Area (CCA) and is being watched closely. This morning early, Dr Bridwell and his surgical fellow, Dr Mesfin, visited Suzanne. We all discussed how well everything went during surgery. Dr Bridwell also talked with us about the need for Suzanne to stay flat, but rotate to her side, return to her back, and to the other side on a 2 hour rotation for each position. That's to address the minor lower back issue with her dura and sacrum that he observed and treated during surgery. He feels very confident that by staying flat through tomorrow morning will allow for full healing of the Dura and she will be on schedule to sit and stand tomorrow. The rotation is a new twist and will help her feel better than being on her back for many hours in a row.

Pain reared its ugly head a bit this morning for Suzanne but we are all being better about staying on a regular schedule of using the pump for pain meds which seems to be really helping the past several hours. Nausea meds have helped her feel much better when taking sips of water, ice chips, and her oral meds. I couldn't begin to list all the meds she's been on today, but its all good.

A physical therapist came in briefly today to do light movement exercises which I think felt good but made her tired quickly. Dr Bridwell's Nurse Practitioner also visted a few hours ago too to make sure all was well and discuss the plan for moving Suzanne to a room on the ortho floor later today.

Suzanne still speaks very quietly, naps most of the time, but stays strong and positive. When the nurse listened for sounds in her belly last night after no food for a few days, Suzanne said "Must be deader than a doornail in there." When the docs and nurses ask how she's doing, she usually says "I've had better days but not too bad".

I'd better go to make sure she hit the button again on the pain med pump. Hopefully in her room, I won't have to leave her to send these messages. Until next time, Suzanne thanks you all for the positive thoughts and kind messages.

Kevin

My prayers are with her to get stronger day by day.

JenniferG
03-30-2012, 03:55 PM
"sleeping pretty soundly" That's got to be good!

Doreen1
03-30-2012, 04:06 PM
Yesterday's Update:
Suzanne's progress following her back surgery day before yesterday continues very well. Dr. Bridwell felt that all was indicating normal recovery but that he wanted to take things slowly and cautiously. However, he did allow the head of Suzanne's hospital bed to be raised up to 30 degrees while she's on her back to allow her to take pills a bit easier and let the swelling in her face subside a bit more quickly. She is still rotating to each side then back to her back every 2 hours.

Also, added to her fruit salad of medications and fluids were nasal spray to help with some stuffiness, a blood transfusion which was completely expected, lasix for swelling, liquid nutrition through IV, and various others. Even now, I'm sure Suzanne could tell you all of their names and functions but she will have to list them for any interested medical people later. The pain and anti-nausea meds are still the fan favorites and continue to do the job. They still aren't letting her have fluids to drink other than a few ice chips at a time. That may be a day or two away yet after some type of gas passing event.

Suzanne still sleeps a majority of the time, which is very good, but seems much more alert and able to talk to family very briefly on the phone today. I think some of the meds cause pretty lively dreams, though, as she twitches a fair amount while sleeping and woke once today asking "when did we get to Germany?" Nice that she's able to take a quick trans-Atlantic journey every once in a while to escape her current locale.


Today's Update:
Today has been a really great day of progress for Suzanne, a day we'll talk about for a long time. The day's events started at about 6:30 am when Dr Bridwell and his team stopped by to let Suzanne know that her time of loafing in bed for 24 hours a day were over. Dr Bridwell came into the room and the 2 docs helped Suzanne to her feet with a walker used for leverage in standing and support. She took a couple of small shuffle steps then with a little help from her doctors sat back down on the bed. I can say that she has grown some since Tuesday but no official measurements yet. Her back looks great, there were no headaches and just a little dizziness (completely normal after 3 days flat in bed), and all signs are that she is on track or a little ahead of schedule.

She took a quick nap before the Physical Therapist came by. The PT had her sit, stand, and shuffle again then had her sit in a chair by the bed for a little while. Seems her pain is a little worse sitting than standing but that, too, seems to be expected. After another short nap, Suzanne learned that her restrictions allowing only ice chips and no water had been lifted. She can now have clear liquids, to include juice, sprite, jello, and broth. Big step up from tiny ice chips. She is still taking it easy though as her plumbing needs to slowly wake up again still.

So we will see PT again one more time today and expect we may see Donelle, Dr Bridwell's Nurse Practitioner, one more time. Full day. But more than anything else, today has been good because Suzanne is really starting to seem like herself again. We've been chatting about what she remembers and doesn't about the past few days and about the outpouring of support she's been getting from all of you. She hasn't started reading through emails, but I'm letting her know about them and reading several. The pain meds still let her sleep for much of the day but today has been small steps and giant leaps at the same time.

Doreen1
04-01-2012, 10:58 AM
Hi Again from St Louis,

It's a sunny Spring day here that Suzanne's been enjoying through the window of her room between naps and planned activities. We're having another day of firsts, including some solid foods, a 1 hour sit in a chair in the room, a hike down the hall, up/down 3 steps. She was pretty wiped out after her walk and stairs but really hung tough and even impressed herself, I think. Other than a bit of nausea during the long sit, things are going well and even the nausea passed pretty quickly.

Her pain pill, which we are still working to find the best dose, has been causing the walls to change colors and continues to cause very realistic dreams. She's not really enjoying the color tricks her brain is playing on her eyes though so I'm considering setting her iPod up with some Pink Floyd or Jimi Hendrix to help get her in the spirit. Seriously though, the nurses have told us that the pain pills commonly cause some side effects like what Suzanne is experiencing. We started with one pill, went to 2, and are now at one and a half.

We saw a new fellow from Dr Bridwell's practice early this morning who let us know that the current plan is still for Suzanne to be released from the hospital on Monday. We'll see if that stays in place or if it slides to Tuesday based on the early delays, but Suzanne seems to be charging through the program so far so think it will certainly be Monday if she has any control over things, which I think she does.

JenniferG
04-01-2012, 06:43 PM
Sounds like Suzanne's going along just fine and her doctors are keeping a close eye on her. Hope things continue to move along smoothly!

Had a good laugh at the following comments:

"Nice that she's able to take a quick trans-Atlantic journey every once in a while to escape her current locale."

"She's not really enjoying the color tricks her brain is playing on her eyes though so I'm considering setting her iPod up with some Pink Floyd or Jimi Hendrix to help get her in the spirit."

:D

rockycarm
04-01-2012, 06:50 PM
Hi Again from St Louis,

It's a sunny Spring day here that Suzanne's been enjoying through the window of her room between naps and planned activities. We're having another day of firsts, including some solid foods, a 1 hour sit in a chair in the room, a hike down the hall, up/down 3 steps. She was pretty wiped out after her walk and stairs but really hung tough and even impressed herself, I think. Other than a bit of nausea during the long sit, things are going well and even the nausea passed pretty quickly.

Her pain pill, which we are still working to find the best dose, has been causing the walls to change colors and continues to cause very realistic dreams. She's not really enjoying the color tricks her brain is playing on her eyes though so I'm considering setting her iPod up with some Pink Floyd or Jimi Hendrix to help get her in the spirit. Seriously though, the nurses have told us that the pain pills commonly cause some side effects like what Suzanne is experiencing. We started with one pill, went to 2, and are now at one and a half.

We saw a new fellow from Dr Bridwell's practice early this morning who let us know that the current plan is still for Suzanne to be released from the hospital on Monday. We'll see if that stays in place or if it slides to Tuesday based on the early delays, but Suzanne seems to be charging through the program so far so think it will certainly be Monday if she has any control over things, which I think she does.


Thanks Kevin for the beautiful narration. I will be sure to read it to my husband so he knows what he can expect. Suzanne, keep rocking it and prayers continue to come your way. Best.
Rockycarm (jean)

Doodles
04-01-2012, 09:06 PM
Suzanne--
You are coming along very well it seems. I know it might not always seem like it but it's part of the proces. Hang in there and continue to improve step by step. Your husband Kevin is a riot. I love the Pink Floyd/Jimi Hendrix reference. I hope he's writing a Caring Bridge type deal for friends and relatives. They are so helpful. My husband loved doing that. I think it was his therapy while I was healing and gave him an important job. He always managed to make them pretty funny too and friends said after I was a few months down the road they really missed the reports! Janet

Doreen1
04-02-2012, 08:43 AM
Another warm day here in St Louis and a busy one for Suzanne. Suzanne will be released from the hospital tomorrow, Monday. She was also taken off the IV pain meds, which is kind of scary, and is just on a moderate level of oral Norco (hyrdocodone?) every 4 hours. Another stronger pain med (Oxycodone?) is prescribed and in reserve if she needs it though she wants to get by without if possible.

She walked all the way down the long hall on the floor to the PT room/torture chamber they have set up. She said she walked several stairs on their stair simulator contraption and walked back down the hall. As soon as she got back to the room, Occupational Therapy came in to show her how to put on socks and shoes, pick up dropped items, and get in a car seat the right way. That all has to be done with keeping back and legs aligned and without bending at the waist. I can foresee many games of fetch in my future where I'll be the fetcher. She says she's starting to feel what she thinks are some of the screws in her lower back but not really sure what part of the operation would be causing the real pain. Sitting still seems to be the hardest thing.

Now Suzanne is napping while I make out my to do list for tomorrow. We're both looking forward to getting out of the hospital room but know that challenges are ahead. I expect Suzanne will be sending an update in a few days as she is tired during the day now but not completely zonked the way she was on the IV pain meds. She'll be able to correct my errors in reporting and give her first person view on things she remembers or might have imagined while on heavy drugs. Things are definitely on an upward flight path still.

JenniferG
04-02-2012, 04:34 PM
"Sitting still seems to be the hardest thing." That's not unusual. I think most of us have reported that sitting is difficult for a few weeks, that standing/walking/lying down is more comfortable.

Suzanne's doing extremely well. I do hope the meds prescribed will be enough. Will they send her home with the Oxycontin - I mean, not just a script? Because going home before finding out what her non-IV pain levels are, means she'll need to have extra on hand quickly, if needed.

If she manages on the Norco, this would be great because it might avoid that sleepy bowel that the Oxycontin seems to cause.

All the best with your trip home and the "fetching" you'll be up for. Just think of the brownie points you're accumulating. ;)

golfnut
04-02-2012, 05:07 PM
Yes, Kevin, you are accumulating lots of "brownie points" as Jennifer said. My husband was the self proclaimed "Husband of the Year", so when I was six months post-op we had a party and I presented him with a plaque.

Doreen1
04-02-2012, 05:09 PM
Yes, Kevin, you are accumulating lots of "brownie points" as Jennifer said. My husband was the self proclaimed "Husband of the Year", so when I was six months post-op we had a party and I presented him with a plaque.

I love that idea!

Confusedmom
04-02-2012, 05:13 PM
Suzanne is exactly 2 weeks behind me in St Louis, though I think she had Bridwell(?) and I had Lenke. Please tell her sitting is the bane of my existence, as well! Kelly told me she wants me to sit up an hour at a time. I'm having trouble with 10 min!

Also, OT never showed me how to get in and out of the car. Any tips there? I have just been trying to sit sideways, then sort of swing my legs and shoulders in at the same time. I fear I am twisting unintentionally all the time (especially in my sleep), but what can you do? I'm trying to stay straight! Anyway, tell her to post when she can. I would love to share experiences.

Thanks,
Evelyn

golfnut
04-02-2012, 05:52 PM
Evelyn,
I got a "Fusion Booklet" from Dr. Lenke's office that had directions and pictures on how to get in and out of the car. I'll send you an email.

Doreen,
John was totally surprised and had tears. I also gave him a chef's apron (since he grills almost every night) with his name, "Husband of the Year" and 2011. I warned him (joking) that since there were six months left in the year that the awards could be taken away at any time.

Suzanne,
I had trouble sitting for very long periods at first. The good news about it was that I was ready to take lots of walks instead. Even at a year, I had a tender tailbone after sitting for 30 minutes or more on our couch. I thought it would be forever, but it doesn't bother me at all any more. Standing for long periods of time was an issue before surgery and I think I could stand for as long as I would need to now.

TwinmomTN
04-02-2012, 06:54 PM
All this talk about difficulty with sitting for long periods, even at a year, makes me wonder how those cope
with returning to all day desk jobs even at 6-9 months??? And I will be one of them. Yikes!

golfnut
04-02-2012, 08:07 PM
I need to clarify that I wasn't having any trouble sitting at a year, but that my tailbone was just slightly tender. It was not any type of pain that would have kept me from sitting if I had a desk job.

JenniferG
04-02-2012, 11:16 PM
Yes, Kevin, you are accumulating lots of "brownie points" as Jennifer said. My husband was the self proclaimed "Husband of the Year", so when I was six months post-op we had a party and I presented him with a plaque.

Love that idea! Wish I'd thought to do it.

Doreen1
04-03-2012, 09:55 AM
Hi Again Folks,

Just a quick evening update to say that Suzanne was discharged from the hospital earlier today.

Once at the hotel, we moved in and promptly went for a short walk. Suzanne is determined to put some serious miles on her new walker. I'm not too proud to say that I then washed Suzanne's hair (first real hair wash in a week) and I'm not sure I've ever provided her with as much joy. After a soup and salad dinner brought in from Panera bread, we are now watching Kentucky roll in the Nat'l Champ hoops game.

We have the pill schedule down but are working through best seating arrangements in the room. Suzanne is already missing the adjustable bed but we'll figure things out.

As I can hardly keep my eyes open after the week that was, I'll sign off now. This will probably be my lasy entry and I expect Suzanne will take over for her own update starting tomorrow. Without formal physical therapy and vital signs being taken every hour, she'll need something to do. Again, Suzanne and I appreciate all of your positive feedback and words of support. We will continue to work together to make her stronger and healthier than she was before this long week began and are confident that she's well on her way.

mabeckoff
04-03-2012, 10:29 AM
I don't know how long you are going to be in the hotel room but you can get a hospital bed delivered from a medical supply store.

Glad that you are feeling so good

JenniferG
04-03-2012, 02:14 PM
Great news, including the pleasure you gave Suzanne with her hair-wash! You've come a long way in that week. I've enjoyed your commentary and wish you both well in the coming weeks at home.

BetsyK
04-03-2012, 03:06 PM
Sounds like you made it over the first big hurdle with flying colors! (Both of you!) Keep up the good work, and keep us posted. I'm 2 weeks away......

twistedRN
04-05-2012, 02:49 PM
Hi everyone! Sorry, a bit loopy currently but am now concerned about a red spotty rash all over my back! Looks like chicken pox, is very itchy. Am very concerned about hardware or bmp allergy! They wante to take Benadryl twice and then come in tomorrow @ 730. Anybody have anything similar??

Confusedmom
04-05-2012, 09:29 PM
Is it ONLY on your back? Some of the meds can cause all over itchiness. Also, I am allergic to steri strips, and they cause small red itchy bumps for me. (I guess it's the adhesive in the strips.) I really hope it's nothing serious. I will pray for you!

Best,
Evelyn

Marina63
04-06-2012, 08:19 AM
They thought my rash might be shingles at first which scared me to death. But it ended being some inexplicable rash. Took a long time to go away. Fortunately, it never itched or burned.

twistedRN
04-06-2012, 11:51 AM
Hi Everyone!
OK...so the rash: It really looks like I have chicken pox all over my back. Anyway, I emailed the nurse a pic of it (don't you just love technology) and she wanted me to come in this morning and have Dr B take a look at it. So we made some med adjustments - hard to travel when you are at a "trough" on the med regimen- and we were at his office at 7:30 this morning. He wanted x-rays and the whole kit and caboodle.

Anyway, long story short, he feels this is a contact dermatitis of some type, and likely one from hotel sheets. I didn't get the rash until the day we got to the hotel, although it was a bit itchy and uncomfortable back there prior to that.....so anyway, we are adding Benadryl to the pill cocktail I am taking and hopefully it will resolve He says that these things take time to resolve and it may fluctuate better/worse before it completely goes away. He did not seem at all concerned about a hardware or BMP allergy at all, which was a relief. He feels the best thing for me now is to get home to familiar detergents, soaps etc, soo.....he cut me loose! He canceled the Monday appt we have an we are about to hit the road home. I came back to the hotel and took a long nap after breakfast and Kevin spent a couple of hours packing up around me. He is currently packing the car. We will try to drive as far as Nashville today and stay at the same hotel we did on our way up here. It is about a 4.5 hr drive, so hopefully all will go as planned and we will be there late afternoon.

OH! BTW, my height measured 5'9.5" today - a full inch taller than last week! My x-rays look very bizarre, kind of hard to believe that is me. I will try to post them (before/after) sometime in the future, but the pics are on Kevin's phone and I need to get them to my computer first. I definitely look straighter, although not completely straight, which is what he had predicted.

Better run and supervise the pack-up! :) A beautiful blue clear sunny day here in SL, but anxious to be home!

Doodles
04-06-2012, 01:46 PM
Twisted--
You must be so excited to go home. Keep the meds close and be sure to stop every hour or so and walk around. Hope the trip goes OK and your rash is resolved soon. You'll be ready for a very long nap when you get home. Janet

leahdragonfly
04-06-2012, 05:11 PM
Hi twisted (no more),

I am so happy to hear of your progress and that you're going home! Like the others, keep up with those meds because the car ride will not be too comfortable.

I had an allergic reaction to some adhesive that they put under the steri-strips or the steri-strips themselves, and it was torture...cherry red and very itchy. I found relief with Benadryl spray on the worst itchy areas, and a couple of really hot showers per day took a lot of the itch away for a few hours. It took about 10 days - 2 weeks to go away.

Good luck,

twistedRN
04-08-2012, 10:58 AM
Hi Everyone!
We arrived home last night - and it is sooo great to be back in "normal" surroundings. Of course there is so much to do and only Kevin to do it, so I feel badly about sitting around watching him run around getting stuff done. The car ride home was pretty uneventful except for the change in time from central to eastern time zones. Somehow we forgot about that and got the med schedule off a bit, so there was one time that was quite uncomfortable. One thing I found VERY effective (for those of you about to undergo surgery) : We went out to Kohls and bought a memory foam mattress pad (2") which we also took up to the hotel. We also bought a memory foam pillow that is contoured (it has a valley in the middle running lenghthwise along the pillow) - that fit my back perfectly during the car ride and made it so much more comfie. I also had a neck pillow which really helped. Kevin strapped me in with pillows on each side (and the memory foam one on my back), so I pretty much couldn't move if I wanted to! As far as getting in and out of the car, PT told me to put a garbage bag down on the seat, back up to the seat, sit down and have your driver lift your legs and you turn your torso at the same time. The garbage bag really helps slide you into place. The rash is still there, probably slightly better, am taking benadryl every 4 hrs. I figure it is something I will have to live with for the next few weeks anyway. It is no longer itchy, thank goodness. Thanks for all your support out there - again, I will try to post before/after pics shortly!
Suzanne

djkinkead
04-08-2012, 11:29 AM
Glad to hear you made it home safely and without any incidents, Suzanne.

I know it is bothersome to see the beloved spousal unit run around and do a bunch of stuff for you, but please keep in mind this is your time to heal. Try to squash any feelings of guilt for at least a month...and just rest, heal and getting up and moving around to start that part of your life again.

At seven months post surgery, it has seemed amazing how much more limber I have become in the past three months. It also reminds me how UN-limber or agile I was the first three to four months. I didn't think I would ever be able to empty the lower dishwasher rack...but it will come. Your body will tell you when it's time. Just don't push too much. Remember, you spine has to fuse!

I still use my shower chair--partially because we have a very small shower area which makes any kind of body contortions impossible and it allows me to use the long bath brush I have so I can actually reach my feet and give them a decent cleaning. It is silly to think you can barely reach your feet unless you are sitting or putting your feet up on a chair or something (Which will take a few months of healing, I might add/suggest).

Best wishes--am saying prayers for you and your family.

Dollie

BetsyK
04-09-2012, 01:47 PM
Hi !
I'm glad you arrived home safely- I was beginning to worry! You must be doing well if the doc let you leave, I thought you were planning to stay a week after your discharge from the hospital. And I thought the ride in the car would be much more difficult. You've got some beautiful weather this week.

jrnyc
04-09-2012, 02:03 PM
hi Suzanne
congratulatins on getting home...
hope your recovery is uneventful...the rash sounds like all the excitement anyone
could handle!

how is your sweet dog? i remember you mentioning problems before you left...

hope you feel a little better every day...

jess...& Sparky

mabeckoff
04-09-2012, 02:28 PM
So glad to hear that you are doing ok and that you made it home safely

rockycarm
04-09-2012, 07:49 PM
Hi Everyone!
We arrived home last night - and it is sooo great to be back in "normal" surroundings. Of course there is so much to do and only Kevin to do it, so I feel badly about sitting around watching him run around getting stuff done. The car ride home was pretty uneventful except for the change in time from central to eastern time zones. Somehow we forgot about that and got the med schedule off a bit, so there was one time that was quite uncomfortable. One thing I found VERY effective (for those of you about to undergo surgery) : We went out to Kohls and bought a memory foam mattress pad (2") which we also took up to the hotel. We also bought a memory foam pillow that is contoured (it has a valley in the middle running lenghthwise along the pillow) - that fit my back perfectly during the car ride and made it so much more comfie. I also had a neck pillow which really helped. Kevin strapped me in with pillows on each side (and the memory foam one on my back), so I pretty much couldn't move if I wanted to! As far as getting in and out of the car, PT told me to put a garbage bag down on the seat, back up to the seat, sit down and have your driver lift your legs and you turn your torso at the same time. The garbage bag really helps slide you into place. The rash is still there, probably slightly better, am taking benadryl every 4 hrs. I figure it is something I will have to live with for the next few weeks anyway. It is no longer itchy, thank goodness. Thanks for all your support out there - again, I will try to post before/after pics shortly!
Suzanne

Hi Suzanne, so nice to hear that you have arrived at home. Let the healing begin! I hope you continue to post on your progress as your tips are helpful to me in knowing what I can expect for my upcoming surgery and recovery (May 16th). I liked your suggestion for the memory foam mattress cover and garbage bag for the car. Boy, such little things it seems that will really be a big deal once this is over. God Bless You and Your husband he was terrific in keeping us all posted. Keep the comments coming and hope that your itching is soon to be a thing of the past!

mdtaffet
04-09-2012, 08:30 PM
I'd love to hear from anyone/everyone with any advice on how to control these nerves - and what on earth did you do the day and night before surgery to keep from totally freaking out??


I am a mailing list volunteer for a number of mailing lists hosted by Rootsweb (a free genealogy site). Between my job keeping me extremely busy until January 20th (surgery was the following Monday January 23rd), and working like crazy to find volunteers to babysit the lists that I usually manage in my absence, I barely had enough time to finish all the pre-surgery tasks on my list of things to do. I was busy most of the day before surgery trying to take care of the technical details of turning over list management responsibilities and informing my subscribers of the temporary change in management. I had NO TIME to be nervous at all -- I was too busy to even think about the surgery itself until that morning.

-- Mary

mdtaffet
04-09-2012, 08:48 PM
Yes, Kevin, you are accumulating lots of "brownie points" as Jennifer said. My husband was the self proclaimed "Husband of the Year", so when I was six months post-op we had a party and I presented him with a plaque.


Your plaque idea has possibilities....I've been trying to think of an appropriate way to thank and reward my husband for all that he has done for me so far and will continue to do for the time being. Thanks for the idea...

mdtaffet
04-09-2012, 10:43 PM
Also, OT never showed me how to get in and out of the car. Any tips there? I have just been trying to sit sideways, then sort of swing my legs and shoulders in at the same time. I fear I am twisting unintentionally all the time (especially in my sleep), but what can you do? I'm trying to stay straight!


They never showed me that either, but what I did was have my back to the seat, then put my left hand on the flat panel on the side of the dashboard, and my right hand on the edge of the seat, then I lowered myself down slowly to where my butt was on the seat. Then I reached in above me, grabbed the handlebar at the top of the inside of car just above the door (if your car doesn't have a handlebar, the roof of the car door might work as well), then lift first one leg and then the other into the car as I slowly turned to the front of the car with my back still straight. At first I was unable to lift my right leg into the car by myself, so my husband had to lift that one up for me, but now I am able to lift it up by myself.

If you have a choice of cars, opt for the one with the highest seats that are still low enough to get into easily. It was much harder for me to get into the Subaru Legacy (my car) than it was (and still is) for me to get into either the Subaru Forester or the Subaru Outback, which both have higher seats than the Legacy does.

But it does get easier over time.

-- Mary

mdtaffet
04-09-2012, 10:54 PM
beloved spousal unit


Dollie,

That one is priceless! I LOVE IT!

twistedRN
04-11-2012, 11:02 AM
Hi Everyone,
Just thought I'd give you an update : things are going well, although am starting to realize that weaning on meds and increasing activity is not necessarily a comfortable thing. It does seem like my doc relies on minimal pain meds (recommending 1 tab of 5/325 Norco q. 4 hrs as needed along with prn baclofen for muscle spasms and gabapentin for nerve pain). I am definitely a hurting unit and can feel my anxiety creeping up by hour 4 when pain meds are due. I have not even tried to increase the time yet.
And thank you for all your concerns about my sweet dog, Moxie. I guess we never let the forum know, but the day before my surgery (as I was having my central line put in), we found out that she had a kidney tumor that had burst and she was bleeding internally. I was pretty much a total mess between my anxiety over her and the surgery combined. Anyway.....Kevin told me he would take it all on and I trusted him to make any decisions he had to. Long story short, she was put down that Monday night. So she was gone before I even went into surgery. I didn't know about it,and Kevin had asked people not to ask me, until about 4 days postop when I was lucid enough to ask him about her. Of course we are devastated and heartbroken and coming home without her here was extremely difficult. Thank you all for your concern and for asking....

Doodles
04-11-2012, 07:35 PM
I so sorry about your little dog. How very sad. It sounds like your husband managed a very difficult situation very well, however.
Also, you seem to be progressing like you are supposed to. I remember those anxious moments waiting for the "pill" time. Hang in there! Janet

mdtaffet
04-11-2012, 11:07 PM
Just thought I'd give you an update : things are going well, although am starting to realize that weaning on meds and increasing activity is not necessarily a comfortable thing. It does seem like my doc relies on minimal pain meds (recommending 1 tab of 5/325 Norco q. 4 hrs as needed along with prn baclofen for muscle spasms and gabapentin for nerve pain). I am definitely a hurting unit and can feel my anxiety creeping up by hour 4 when pain meds are due. I have not even tried to increase the time yet.



My experience may perhaps be unique, but I thought I should let you know that most of the pain I experienced post-op once I got home just about completely disappeared after the dressing was removed. It turns out that the plastic cover over the dressing was pulling my skin really tight. Once the dressing was removed, I had no problem at all backing way off of the pain meds, and at that point only used them at night just before I went to sleep, and then ONLY to help me get to sleep and hopefully stay asleep at least a little while.

My surgery was 1/23 and the dressing was removed 2/09, so about 2 1/2 weeks later.

Sorry to hear about your dog; I know that must have been doubly hard for your husband.

mabeckoff
04-12-2012, 08:38 AM
I am so sorry about your dog. I have 2 cats so I know how you felt about your dog

djkinkead
04-12-2012, 08:26 PM
I do remember waiting for every four hours to go by for the next pain killer. I would only take the meds for muscle spasms mostly at night--it helped me get to sleep as well.

It took me a while (a couple months) to start weaning off the four hour meds to longer periods of time and going onto tylenol.

As I had mentioned in a post I made about two months post surgery, the best thing to do is to get a four hour schedule where you only have to wake up once in the middle of the night to take the four hour med. I think it was: 10 p.m., 2 a.m., 6 a.m. 10 a.m. 2 pm 6 pm.

Best wishes and prayers for your recovery. Sorry about the pup crossing the rainbow bridge. One of my dogs is twelve and I know I'll be a complete wreck when he goes.

Dollie

mdtaffet
04-12-2012, 10:23 PM
As I had mentioned in a post I made about two months post surgery, the best thing to do is to get a four hour schedule where you only have to wake up once in the middle of the night to take the four hour med. I think it was: 10 p.m., 2 a.m., 6 a.m. 10 a.m. 2 pm 6 pm.



Dollie,

You must have a way different sleep schedule than I did initially! I tried to make sure I was in bed by 11 p.m., and I usually didn't get out of bed until at least 7 a.m. if I could manage to stay asleep that long. So given that schedule, both your 2 a.m. and 6 a.m. time slots would have been "middle of the night" for me. Given my schedule at that time, I took the pre-sleep dose just before 11, and then generally woke up between 3 a.m. and 4 a.m. at which time I might take another dose of meds early on so that it would help me get back to sleep and try to stay asleep. I didn't really need them for pain in the middle of the night -- only for sleep. Otherwise I would be out of bed at least once an hour. By 2 1/2 weeks out (just after the dressing was removed), I only took the pain meds at night -- never during the day. Saving them for bed time allowed them to last just over a month after the surgery. Then I was out of pain meds and didn't request more. At that point, I switched to the sleeping pills that I had used prior to surgery -- Sonata or Ambien.

Now I'm getting back closer to my pre-surgery night-owl schedule. I'm usually up these days until 1:30 a.m. or even later (the release of the 1940 census is partially responsible for those late hours), and rarely get out of bed before 9 a.m. [That's better than when I was still working before surgery and tried to be in bed by midnight or shortly thereafter and had to be up between 5 a.m. and 5:30 a.m. every day.]

There was a time when I could easily sleep until noon or later if nothing woke me up (i.e. alarm clock, my husband, the dog). Though one Saturday recently I was actually still asleep after 10 a.m. and my husband did have to wake me up so he could make my breakfast before he left the house (he's made me breakfast every Saturday and Sunday for many years). But most of the time I'm lucky if I manage to stay asleep until 9 a.m.; my sleep is very restless these days.

I start out the night in my Golden Technologies zero-gravity power lift recliner in the spare bedroom (no room for it in the bedroom), where I'll sleep for anywhere between 1 to 5 hours; 2 to 3 hours is usually par. Then I go to the bedroom and get into my bed and try to sleep the rest of the night there. If I do that, I can generally manage to sleep, though fitfully at times, until 9 a.m. or even a bit later. Otherwise if I tried to sleep in my bed all night, I'd probably be up 2 to 3 times in the middle of the night and wouldn't be able to stay in bed as long in the morning because over time it gets more and more uncomfortable sleeping on my back in my bed. Not painful really, but uncomfortable.

I look forward to the return of the old days, where I only got up once in the middle of the night, and then only because I needed to use the bathroom. And when I was in my bed, I was sleeping mostly very soundly. Hopefully that will happen again at some point, but who knows how long that will take....

golfnut
04-26-2012, 08:59 PM
Suzanne,
How are you feeling? Do you have before and after pictures yet? I know that the first month is the toughest, so keep your positive attitude and you'll gradually notice improvements.

susancook
04-27-2012, 02:10 AM
Suzanne: I have been following your surgery and recovery blog and am pleased to hear that you are home safely and that you are feeling well. So sorry about your dog. I have not had surgery, I am the 65 YO that posted about how to make the decision whether to have surgery or not, so I learned alot from reading about your experience. As a Nurse Practitioner, my only advice is to take time now to take the best care of yourself that you can. Eat well, relax, get lots of rest. Healing always takes longer than we think that it should. Listen to your body. I wish you a speedy recovery and I hope that your contact dermatitis is better.
Susan

twistedRN
05-09-2012, 05:17 PM
Hi Everyone,
Thanks for your concerns and well wishes! I am 6 weeks postOp and am actually doing really well, have weaned off all the gabapentin, am down to two muscle relaxers and 3 half-doses of my hydrocodone in 24 hrs. I hope to be totally off the Rx meds in the next few weeks - we'll see! I am walking about 1.5 miles a day and am able to sit for about an hour at a time. I'm sleeping through the night (except for the turning which still takes concerted effort) and am eating pretty well. I have lost about 12 lbs through this journey and, despite everyone force feeding me high calorie foods, still haven't gained it back. I guess my body just needs it for healing right now. I would rate my pain on a daily basis at about a 2, maybe a 3. Of course some things make it worse (prolonged sitting, standing from sitting etc), but I have to say it is sooo much better than it was. My 8 wk follow up is May 21st and I am anxious to get some "after measurements". Yes, I do have some before/after pics but the after ones are 2 wks postOp and I still had all my steri-strips and stuff. Need to get my hubby to take some new ones. One thing I seem to be noticing, though, is that the more my swelling goes down on my back, the more I am noticing that it doesn't seem as straight as I orginally viewed it week 1...I am guessing this is from swelling going down and not from rods bending/screws loosening and the curve coming back?? I sort of think I would feel some intense pain if either of those was the case? I definitely can feel some "shifting" in my back when I move certain ways. It's not painful, just a little unnerving. Thoughts?

rockycarm
05-09-2012, 06:25 PM
Hi Everyone,
Thanks for your concerns and well wishes! I am 6 weeks postOp and am actually doing really well, have weaned off all the gabapentin, am down to two muscle relaxers and 3 half-doses of my hydrocodone in 24 hrs. I hope to be totally off the Rx meds in the next few weeks - we'll see! I am walking about 1.5 miles a day and am able to sit for about an hour at a time. I'm sleeping through the night (except for the turning which still takes concerted effort) and am eating pretty well. I have lost about 12 lbs through this journey and, despite everyone force feeding me high calorie foods, still haven't gained it back. I guess my body just needs it for healing right now. I would rate my pain on a daily basis at about a 2, maybe a 3. Of course some things make it worse (prolonged sitting, standing from sitting etc), but I have to say it is sooo much better than it was. My 8 wk follow up is May 21st and I am anxious to get some "after measurements". Yes, I do have some before/after pics but the after ones are 2 wks postOp and I still had all my steri-strips and stuff. Need to get my hubby to take some new ones. One thing I seem to be noticing, though, is that the more my swelling goes down on my back, the more I am noticing that it doesn't seem as straight as I orginally viewed it week 1...I am guessing this is from swelling going down and not from rods bending/screws loosening and the curve coming back?? I sort of think I would feel some intense pain if either of those was the case? I definitely can feel some "shifting" in my back when I move certain ways. It's not painful, just a little unnerving. Thoughts?

Hey! So glad you are doing so well. I am scheduled a week from today and have my ups and downs. Do you have any words of wisdom for me in staying CALM! I seriously can't wait until I am on the road to recovery as this is really getting to my head. Just returned from a day of post op and now filled with a lot of thoughts on how to get ready at home, work, etc.

mabeckoff
05-09-2012, 06:34 PM
Hey! So glad you are doing so well. I am scheduled a week from today and have my ups and downs. Do you have any words of wisdom for me in staying CALM! I seriously can't wait until I am on the road to recovery as this is really getting to my head. Just returned from a day of post op and now filled with a lot of thoughts on how to get ready at home, work, etc.

Keep busy is my advice. Make sure that things in your home are where they need to be so that it is easy on you when you return. Good luck

twistedRN
05-09-2012, 06:40 PM
OK, not sure I would be the poster child for staying calm, but (someone on the forum told me this) I tried really hard to focus on what my life would/will be like a year from surgery. If I had let it go, I know my spine would have become more deformed and I would have been in more pain. So I concentrated on knowing it was the right decision at the right time. I also really focused on making sure I got my body in as good a shape as possible prior to surgery, walked every day, ate healthy foods and got lots of sleep. I didn't work for 10 days prior because, as a nurse, I didn't want to be exposed to any illness. Hey, we also went out to the movies the night before (central line and all) - just to take my mind off things for at least a couple of hours!

mdtaffet
05-09-2012, 07:29 PM
Hey, we also went out to the movies the night before (central line and all) - just to take my mind off things for at least a couple of hours!

What do you mean by "central line" here? I had pre-op testing (blood drawn, etc.) about 2 weeks before my surgery, but otherwise, I checked in to the hospital at 6 a.m. and the surgery started just over 2 hours later.

If I had a "central line", it wasn't added until the morning of the surgery. Is this the same thing as a PIC line? I think I had a PIC line (or something that sounded like that) that was added sometime just before or at the beginning of my surgery, but after I was already asleep. Whatever it was, it was removed about 24 hours after I woke up in the recovery room, as I was being moved from their post-surgical ICU to the regular Orthopedics floor. The nurse had to very carefully cut the visible bits of it out of the area at the junction between my left palm and wrist with a knife of some sort (there were probably somewhere between 6 to 10 visible chunks of it just above the skin). Whatever it was, that area and parts of my arm that it must have gone through are still somewhat numb. And I'm just over 15 weeks post-op now.

-- Mary

walkingmom
05-09-2012, 08:47 PM
. One thing I seem to be noticing, though, is that the more my swelling goes down on my back, the more I am noticing that it doesn't seem as straight as I orginally viewed it week 1...I am guessing this is from swelling going down and not from rods bending/screws loosening and the curve coming back?? I sort of think I would feel some intense pain if either of those was the case? I definitely can feel some "shifting" in my back when I move certain ways. It's not painful, just a little unnerving. Thoughts?
Hi Suzanne,
Soinds like you are doing really well! Just remember that you have lost 12 lbs and with your new alignment, your remaining weight has redistributed itself too. When I look in the mirror, I don't see that straight spine either but part of that is because there is no large muscle mass back there. So I am going to notice every flaw in my thin back area.

Donna

Doreen1
05-09-2012, 09:15 PM
Hi Suzanne,
Soinds like you are doing really well! Just remember that you have lost 12 lbs and with your new alignment, your remaining weight has redistributed itself too. When I look in the mirror, I don't see that straight spine either but part of that is because there is no large muscle mass back there. So I am going to notice every flaw in my thin back area.

Donna

I'm curious to know, for those who are post op, what does the top of your incision look like? As more time passes, the top of my incision area seems more "hollowed" out. To me it looks like muscle was scooped out up high between my shoulder blades. I took some pix today and will post to my blog soon. I've also noticed the bump near the top of my incision is now there 24/7. Is this the top of my rod? One of the many questions for Dr Lenke next week.

So happy to hear about your progress Suzanne! Look forward to seeing u and the ladies soon. Betsy isnt responding to my emails. Have u heard from here?

Warmly
Doreen

Confusedmom
05-09-2012, 09:49 PM
Hi Suzanne,

I think others have posted on here before about not looking as straight after the swelling goes down. So I think it's normal. I can see on myself a little more definition below my ribs that isn't perfectly symmetrical, which I couldn't see at first. On the other hand, I have also seen people post that some cosmetic issues take several months to resolve. Example: sometimes a higher shoulder will settle down, or so I've read.

It sounds like you are doing Awesome!!! You are ahead of me and I am 8 weeks along. I am weaning, but not as fast, and can only sit about 1/2 hour. But, that 1/2 hour isn't as painful as it used to be. So, yay! Are you wearing a pedometer, or how do you measure your mileage? I still can only do 1/4-1/2 a mile at a time, but I think I'm getting enough in over the course of the day.

Mary, Dr Lenke's patients get central lines in their chests for fluids, transfusions, etc. a day or two before surgery.

Rocky, we also went to a movie the day before with the central line! I forget if you're going to St Louis. If so, there's a movie theater in walking distance. Beyond that, I would consider Valium. Seriously. They give it to you afterwards, anyway. So why not ask for some before if you're really freaking out. (I was.) Best wishes & prayers for a great outcome!

Evelyn

golfnut
05-09-2012, 09:52 PM
Doreen,
My back looks so much better than pre-surgery, but it does have kind of a hollowed out look like you mentioned between my shoulder blades. I've been doing lots of exercises that I hope will eventually build up some muscles to fill in the space so that it's a better appearance.

mdtaffet
05-09-2012, 10:59 PM
Mary, Dr Lenke's patients get central lines in their chests for fluids, transfusions, etc. a day or two before surgery.

[snip]

Beyond that, I would consider Valium. Seriously. They give it to you afterwards, anyway. So why not ask for some before if you're really freaking out. (I was.) Best wishes & prayers for a great outcome!



Evelyn,

It's interesting how different doctors approach things. I don't recall ever receiving any Valium. Certainly not orally. If they gave it to me at all, it must have been via IV, but I don't think they ever gave me anything like that.

-- Mary

twistedRN
05-10-2012, 09:10 AM
Hi All,
Mary, Dr Bridwell (and Lenke probably others also) like to use central lines (basically large bore IV's with 2-3 ports placed into a large vein in your upper chest). It allows for rapid infusion of meds, blood etc into a big vein so that smaller veins in your periphery aren't irritated by all the stuff flowing into you. Mine was taken out the day I left the hospital (day 6) and had been put in the day before I went in for surgery.
I guess you are all right about the weight loss and uneven distribution of weight/fat on my back. I am sure it will be at least a year before things settle in. Either way, it is definitely a cosmetic improvement over the way my back looked before!
Any thoughts on that "shifting" feeling I sense when I move? Anyone else ever feel that?
Doreen, I sent a msg to Betsy last week and haven't heard back either...I will try emailing her directly again now. I know she was taking it slowly to avoid nausea and pain.

LSKOCH5
05-10-2012, 04:11 PM
[QUOTE=Confusedmom;139051]Hi Suzanne,

I think others have posted on here before about not looking as straight after the swelling goes down. So I think it's normal. I can see on myself a little more definition below my ribs that isn't perfectly symmetrical, which I couldn't see at first. On the other hand, I have also seen people post that some cosmetic issues take several months to resolve. Example: sometimes a higher shoulder will settle down, or so I've read.

I noticed this to be true w Jacob - his shoulder was much higher up after surgery and has already settled down a good amount in these few months.
You seem to be doing so well! Very happy for you - just don't overdo & keep focusing in on each day being better than the day before.

Confusedmom
05-10-2012, 10:28 PM
Suzanne,

Now that my back is less numb and I am reducing pain killers, I am also starting to feel more movement in my back. It feels like muscles. Either trying to heal or learn how to cope with hardware. I wonder when they all "knit" back together--how many weeks/months does that take?

Evelyn

Marina63
05-11-2012, 10:55 AM
I was told it could take up to a year for everything to sort itself out. At 10 months post op, I believe it.

Jenna.KB
05-22-2012, 09:25 AM
Hi All,
Mary, Dr Bridwell (and Lenke probably others also) like to use central lines (basically large bore IV's with 2-3 ports placed into a large vein in your upper chest). It allows for rapid infusion of meds, blood etc into a big vein so that smaller veins in your periphery aren't irritated by all the stuff flowing into you. Mine was taken out the day I left the hospital (day 6) and had been put in the day before I went in for surgery.
I guess you are all right about the weight loss and uneven distribution of weight/fat on my back. I am sure it will be at least a year before things settle in. Either way, it is definitely a cosmetic improvement over the way my back looked before!
Any thoughts on that "shifting" feeling I sense when I move? Anyone else ever feel that?
Doreen, I sent a msg to Betsy last week and haven't heard back either...I will try emailing her directly again now. I know she was taking it slowly to avoid nausea and pain.

Hi Twisted (or untwisted as you are now)

I've just read this whole thread and am so pleased to hear that you are improving day on day. I'm currently awaiting full fusion and possible pelvis fixation so its really good to hear someones journey pre op and into recovery.

How did your app go on 21st? hope the surgeon answered your questions regarding feeling movement from the hardware in your back. That's sound a little scary so I hope you can confirm that the feeling goes eventually.

I've seen some pictures on the forum of people with a rash following surgery and I have psoriosis (a skin condition) so if possible I am going to ask my surgeon if there is anything he can do in an attempt to avoid me getting this as I already think the trauma of surgery to my body will make my psoriosis flare up.

Well done on getting through your surgery and I look forward to hearing more about your improvements into good health

Jenna

twistedRN
05-27-2012, 07:46 PM
Hi Everyone!
Sorry I haven't been on the forum in awhile....but I wanted to catch you up to date on my 8 wk checkup with Dr Bridwell last week. Basically it all went very well : He watched me walk with and without walker. He checked out my x-rays and my incision and said all looks great. We discussed a few things : official weight is now still 11 lbs under preOp weight, height is 1" taller (now 5'9.5"!)am cleared to drive whenever I feel like I am able, can dip in the pool but no swimming, no exercise other than walking, nothing to exercise arms or legs either, can now put sunscreen on the incision, numbness that I have may or may not resolve but end date of that would be about 18 mo postOp. I am numb in parts of my back, left shoulder and the lower half of my buttocks. I have been having some numbness/tingling in my left fingers which the Fellow told me was related to possible arthritis in my neck or the way I am holding my left arm..... I did not have it prior to surgery. I will see what happens in the next few months with that. I have a feeling it is related to the swelling and numbness I have in my left shoulder, so am not freaking out.....yet.

No official word about the "shifting" I felt, but I have to say that feeling seems to have resolved. I haven't felt it in weeks. Maybe it was just a phase of the healing process, the "snap, crackle pop" of healing?

They didn't take any official measurements of my curves (guess they don't do that??), but he guesstimated that I went from 59 lumbar and 55 thoracic to somewhere around 25 degrees with both. They were able to correct about half the rotation - they purposely do not do more than that in adult patients because it can really tweak the spinal cord and do longterm damage. I guess with kids they will try to correct all rotation.

I also asked about "breaking 90 degrees" between my torso and thighs. He said not yet because it flexes L4/5.....arrggh. I am quite the inpatient patient, I guess.

Anyway, I am basically off of all narcotics now, only take half a Norco as needed, which is rare. I take about 3 ES Tylenol a day. I would say the sensations I have in my back are more of a pulling pain in my pelvis (related to the screws into my pelvis?) and a burning in between my shoulder blades. My most comfie position is laying flat on my back or on my side, worst position is probably sitting, although I can sit for about an hour at a time (preferably with my memory foam pillow behind me)!

Hope everyone is doing well!

mabeckoff
05-27-2012, 08:09 PM
Glad to hear that you are doing so well Yes, recovery can be test of patience

walkingmom
05-27-2012, 09:00 PM
Hey Suzanne,

Congrats on reaching the milestone of being able to drive again. It means that you are one step closer to returning to a normal routine. Do you return to st. Louis at 4 mos. post-op? You sound like me because bernie always reminded me that the months following surgery always tested the patience of the patient! It sounds like you are doing great. So take care and just keep on walking....

Donna

loves to skate
05-27-2012, 09:21 PM
Glad to hear you are doing so well at only 8 weeks. The worst is over now. It gets easier as time goes by.
Sally

Jenna.KB
05-28-2012, 05:42 AM
Hi TwistedRN

Glad your app went well and your managing your pain. Sounds like they achieved really good results for you, you must be so pleased.

Didn't think you would be ok to drive at 8wks post op so thats good news and that the snap/crackle/pop sensation stops after a while.

Please keep me updated with the pulling pain you think your getting from your pelvis fixation, as this might help me understand what I'm in for :-)

Keep going with your recovery and keep that walking up :-)

Jenna

twistedRN
05-28-2012, 08:32 AM
Hey Suzanne,

Congrats on reaching the milestone of being able to drive again. It means that you are one step closer to returning to a normal routine. Do you return to st. Louis at 4 mos. post-op? You sound like me because bernie always reminded me that the months following surgery always tested the patience of the patient! It sounds like you are doing great. So take care and just keep on walking....

Donna

Hi Donna (and everyone!),
Thanks for the kind words of encouragement! Yep, Dr B said he would normally see me at 4 mo but said that if I felt ok about it all, he would be ok with me just coming back at 6 months postOp. Initially he said maybe he would have me send x-rays from here, but then he said there was no need for that as long as things were going well. So far so good! :)

twistedRN
06-22-2012, 07:20 PM
OK, quick question out there for all of you who are fused to the sacrum and/or have pelvic fixation....do you ever get to the point where you can tie your own shoes? After a particularly frustrating episode today trying to work with elastic shoelaces and a shoe horn in my athletic shoes, I about gave up and yanked out the shoelaces, put the regular ones back in and (with HUGE difficulty) attempted to tie my own shoes with a straight back. Please tell me that eventually we can squat or lift our feet up to a chair we are sitting on or something...?? Thanks for any advice and/or encouragement!

mdtaffet
06-22-2012, 08:10 PM
OK, quick question out there for all of you who are fused to the sacrum and/or have pelvic fixation....do you ever get to the point where you can tie your own shoes? After a particularly frustrating episode today trying to work with elastic shoelaces and a shoe horn in my athletic shoes, I about gave up and yanked out the shoelaces, put the regular ones back in and (with HUGE difficulty) attempted to tie my own shoes with a straight back. Please tell me that eventually we can squat or lift our feet up to a chair we are sitting on or something...?? Thanks for any advice and/or encouragement!

I wish I had encouraging news for you, but I don't. I still can't tie my shoes yet, and I'm almost 5 months out now (surgery January 23rd). What I did in the early days was get either my husband or my son to tie my shoes for me on the days that I really needed to wear shoes to go outdoors. Now I can handle my own shoes, but I had to start wearing a completely different kind of shoe. Right now I have two pairs of shoes that I can slip my foot into and out of, and only have to fiddle with the backs of one of those pairs of shoes which sometimes need straightening after I put my foot in.

One of the pairs that I wear, only during much colder weather when I have on a pair of over-the-calf Nike Dri-Fit socks with a small pair of footie socks over top the longer socks, is the one at the following link : http://www.footsmart.com/P-Orthofeet-Mens-525-Thomas-Shoes-71374.aspx. Once I found the right spot to have the loop set to, I leave the loop closed and slide my foot in or slide it out. But those shoes don't work for me now that it's warmer, because they are too deep when I only have one pair of socks on, and I can't adjust them to where they will fit fairly snugly but comfortably.

The other pair that I wear is similar to a pair of shoes that I bought for work before my surgery, but has a similar velcro closure. The model I have is the 927, but the current version is the 928: http://www.newbalance.com/New-Balance-928/MW928-V,default,pd.html?dwvar_MW928-V_color=Black&start=9&cgid=102000. Once I found just the right spot to place the velcro loops, I leave them there. I just put my foot and and take my foot out. It's not as easy to get into these shoes as it is the Orthofeet shoes, but one very important factor is that the tongue of the shoe stays where it's supposed to, as opposed to getting pushed into the shoe, which is what was happening to me when I tried elastic laces in my regular shoes.

This velcro model is OK, but not nearly as comfortable as my regular tie-up shoe: http://www.newbalance.com/New-Balance-1012/MR1012,default,pd.html?dwvar_MR1012_color=White_wi th_Silver_and_Blue&start=19&cgid=101000. However, I have been using the velcro shoes on some longer walks recently -- like 2 miles at Taughannock Fall State Park just north of Ithaca this past Sunday.

One thing you might notice if you look at those shoes is that they are all men's shoes. I can only wear men's shoes because my feet are too wide for most women's shoes. My shoe size is 8 EEEE in men's shoes. I also have to wear motion control shoes, because my feet are too unstable without them, even with the inclusion of my prescription orthotics.

I don't know how long it will be before I will be able to tie my own shoes, but I certainly hope it happens at some point, because these velcro models just aren't as comfortable over the long term.

I am not able to cross either leg over a knee, but even if I could, that wouldn't help, because I really can't tie a shoe at an angle. Normally I would have tied my shoes while sitting on my bed, leaning over to reach my feet on the floor, but I don't know if that will ever be possible again. I'm guessing that at some point it might perhaps be possible to prop my foot up on something, like a footstool maybe, and then lean over far enough to tie them, but if that is ever possible, I don't know how long it will be. I specifically asked about tying shoes at my last follow-up visit, and was told that I should not yet be trying to lean over to tie my shoes.

Another one I also have difficulty with is my hair. I have longish hair, which at this time of year, I used to wear up in a ponytail that was clipped just below the top of my head. But the only way I could clip it up like that was to lean over far enough that I could actually look backwards through my knees. I would let gravity bring all my hair down towards the floor and comb it, then gather it when it was in that position. My part would no longer be visible once my hair was clipped up. But I can't do that anymore. The best I can manage now is a clip down near my neck, and I can't gather my hair together in the same way, so my part is still there. It's a completely different look for me that I really don't like, but there's nothing I can do about it until I can once again lean over and let my hair hang down to the floor -- if in fact that EVER becomes possible again. If it won't, then I may have to plan a completely different look for my hair, because I hate the way it looks right now when it's clipped back as opposed to clipped up.

-- Mary

golfnut
06-22-2012, 08:20 PM
Suzanne,
Eventually, you will be able to tie your own shoes. I didn't even attempt to do it for a long time (wish I could remember how many months) I wore slip on tennis shoes unless my husband was around to tie my regular tennis shoes. When I started tying them on my own, I propped on foot up on something and lowered myself by bending the knee of the leg I was standing on. Now, I can sit and tie if I have something to prop my leg up on. I can also sit and put on foot over the other knee. My bows were usually lopsided at first. Everything (eventually and gradually) gets easier. As you know, the recovery takes lots of patience. Today, I thought about how far I've come since last summer when I was only 5 months post-op . . . I played 18 holes of golf, watered the flowers, trimmed bushes, pulled weeds, and a few other things that I couldn't have done last summer. Nice to hear from you.

Confusedmom
06-22-2012, 11:16 PM
Hi Suzanne,

I COULD do this, but I don't think I'm SUPPOSED TO yet: lie flat on my back on a bed or couch, bend at the knees and prop one foot on one knee--then tie shoes. I do use that method to put on body lotion on my lower legs after shaving, but I don't have to stretch like I would to tie shoes. When I get to 1-year post op I will do this to tie shoes. In the meantime I pretty much use the long-handled shoe horn combined with the grabber to hold up the tongue. I am late everywhere I go!!! Lol.

Best,
Evelyn

titaniumed
06-23-2012, 03:02 AM
The shoe tying subject. Ahh.....I never thought I would ever be able to get down to my feet again. Very scary.

I wore slip on shoes for a long time....but eventually started the bending process at around 9 months. I didn’t want to take any chances, you only get one chance at this. Bending and pulling down can trigger soft tissue injury which is extremely painful. I had this happen at 23 months post, so be careful. (Bending down and holding position to clip toenails) Stretching takes patience.....

A long shoe horn is good to have. They have them about 18 inches long. Pre-tie your shoes or sneakers and use the shoe horn.

After 9 months, I started with a stool around 30 inches tall. Set your foot up there and lean into it slowly to tie shoes.

Now, I just squat to tie shoes. Squat with one knee on floor and hang arms down. I don’t need a stool anymore. It took over 12 months for me to get to that point.

Ski boots are a challenge.....(smiley face) Getting fins on while scuba diving is also a little challenge......but possible. All involve the “extended” reach.

Ed

twistedRN
06-23-2012, 10:20 AM
Hi Everyone!
It is so encouraging to hear from everyone and to believe that one day I will actually be able to reach my feet again (no more great excuses for pedicures!)! I have to tell you that I took all your advice and this morning for my walk I pre-tied my regular shoes and then used the long shoe horn and a hook thingie to put them on. I held the tongue in place with the hook and used the shoe horn and it worked great! I had been given that hook tool in the hospital and had never used it before, now it is invaluable! I had been using my slip on shoes, even walking 2-3 miles in flip flops (shame on me), but am now so excited to be back to my regular athletic shoes. Ed, it is so encouraging to hear you talk about fins and ski boots - I was very active before surgery and am anxious to resume some of those parts of my life. I know I am not even 3 months postOp, so I am tring to be patient with myself. I can tell that is going to be one of the hardest things for me! Again, thanks to everyone for the advice - you made my day!
Suzanne

mdtaffet
06-23-2012, 11:20 AM
A long shoe horn is good to have. They have them about 18 inches long. Pre-tie your shoes or sneakers and use the shoe horn.



Ed,

I do have a long shoe horn (hospital supplied me with one to take home), but it wouldn't help me with that task because even if I could figure out just how tight to pre-tie my shoes (a challenge in and of itself), I would never be able to pull the shoe tongue back out after jamming my foot into the shoe.

How did you manage to get the shoe tongue back out after your foot pushes it into the shoe? That is the one thing that kept me from trying to use elastic shoe laces. I've tried trying to hold onto the shoe tongue with the grabber while putting my foot in the shoe, but that doesn't work long enough to keep the shoe tongue out. I've tried grabbing the shoe tongue with the grabber to pull it back out after putting my foot in the shoe, and that doesn't work either.

-- Mary

twistedRN
06-23-2012, 12:29 PM
Mary,
The thing that worked for me is like a long stick with (literally) a hook at the end of it. I hooked it into the area where the laces pass through the tongue and held it there while I used the shoe horn. I think you could hook it anywhere on the tongue to hold it still. If you don't have one of those, maybe a medical supply store would have one or you could easily make one by screwing a cup hook into the end of a wooden dowel? Good luck!
Suzanne

mdtaffet
06-23-2012, 12:37 PM
I hooked it into the area where the laces pass through the tongue and held it there while I used the shoe horn.

Suzanne,

One of the first things I do when I get a new pair of tie-up shoes is remove the laces from the slots on the tongue, because I can't stand them to be laced up that way -- it drives me bonkers! I remove the laces from all pairs of new shoes, then relace them, bypassing the tongue slots. I won't even try on a new pair of shoes without doing that first.

So I don't have the same type of anchor to hold on to that you do with that long hook. I only have the tongue itself to hold on to.

-- Mary

rockycarm
06-23-2012, 03:25 PM
Suzanne,

One of the first things I do when I get a new pair of tie-up shoes is remove the laces from the slots on the tongue, because I can't stand them to be laced up that way -- it drives me bonkers! I remove the laces from all pairs of new shoes, then relace them, bypassing the tongue slots. I won't even try on a new pair of shoes without doing that first.

So I don't have the same type of anchor to hold on to that you do with that long hook. I only have the tongue itself to hold on to.

-- Mary

Hi Mary,

When I was in the hospital the physical therapist suggested that I put the elastic shoelace under the tongue. This has allowed me to slip on my sneakers without the tongue moving forward - truly invaluable. Hope this helps.

rockycarm
06-23-2012, 03:31 PM
OK, quick question out there for all of you who are fused to the sacrum and/or have pelvic fixation....do you ever get to the point where you can tie your own shoes? After a particularly frustrating episode today trying to work with elastic shoelaces and a shoe horn in my athletic shoes, I about gave up and yanked out the shoelaces, put the regular ones back in and (with HUGE difficulty) attempted to tie my own shoes with a straight back. Please tell me that eventually we can squat or lift our feet up to a chair we are sitting on or something...?? Thanks for any advice and/or encouragement!

Hi - see my reply to Mary. Put the elastic shoelaces under the tongue. This will allow you to put the sneaker on without the tongue moving. Good luck!