Scoliosis Support  

Go Back   Scoliosis Support > Scoliosis > General Discussions

Notices

Reply
 
Thread Tools Display Modes
  #1  
Old 11th June 2014, 08:00 PM
danielblack2002 danielblack2002 is offline
Junior Member
 
Join Date: Jun 2014
Posts: 14
Default Surgery next Thursday

Hey all I am new to this website. I have been doing alot of research on spinal fusion. I am getting it next Thursday (19th). I am absolutely starting to poo it. nerves are getting the better of me and im not sure what to expect when it comes to pain etc as ive never broken a bone in my upper body or a bone that i can feel. i am a wheelchair user with spinabifida who is paralysed in a wheelchair but i lead a pretty active sporting life style (basketball, swimming, athletics, archery and cycling are just a few of what sports i do.). any tips or experiences would be helpful. oh and i just found out yesterday that the surgeon that was meant to do it has now passed me onto someone else as he isn't available so this has worried me even more.
Reply With Quote
  #2  
Old 12th June 2014, 06:36 PM
danielblack2002 danielblack2002 is offline
Junior Member
 
Join Date: Jun 2014
Posts: 14
Default Re: Surgery next Thursday

Saw my new surgeon today. He is fab. put my mind to rest about alot of things. i now know how far rods are going up my back (below my neck down to pelvis). looking at just a week in hospital and 3 months off work. still really nervous about it. has anyone else had this length of fusion before?
Reply With Quote
  #3  
Old 12th June 2014, 07:00 PM
tonibunny's Avatar
tonibunny tonibunny is offline
T Sr: Admin, Big Sister and Da Police!
 
Join Date: Jan 1970
Posts: 15,399
Default Re: Surgery next Thursday

Hi there Daniel, welcome to SSO

One of our mods, Ali, also has SB and uses a wheelchair. She's had surgery - hopefully she'll be along to chat to you soon do you know which vertebrae you are having fused? From what you've said, I'm assuming it will be something like T1 down to S1 or into the pelvis with pelvic anchor instrumentation. That is a really long fusion; has your surgeon said whether it will impact your ability to do your sports? Obviously this is very important to you, so it's important that you discuss this with him. Once you've had a fusion you can't bend or twist your spine, and whilst that doesn't necessarily prevent a mobile person from doing sports it might make things different for you. I'm glad you're happy with your new surgeon, that is really good news!

Toni xx
__________________
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
Reply With Quote
  #4  
Old 12th June 2014, 07:22 PM
danielblack2002 danielblack2002 is offline
Junior Member
 
Join Date: Jun 2014
Posts: 14
Default Re: Surgery next Thursday

im not sure exactly the name of it but its from shoulder height down to my pelvis with hooks. yes i know that my spine will be stiff and no movement but it will hopefully not impact too much in my sport as he knows how important it is to me.
Reply With Quote
  #5  
Old 12th June 2014, 10:13 PM
HayleyM's Avatar
HayleyM HayleyM is offline
OrangeL
 
Join Date: May 2014
Location: Texas
Posts: 50
Default Re: Surgery next Thursday

Good to meet you Daniel! As someone who had also never broken a bone I was absolutely petrified too. Lo and behold I had the surgery last Monday and am feeling really good! (For reference- I'm 21, female who had an 88* thoracic 60*+ lumbar curvature) For me the pain never got severe. and the meds took it almost all away. The pain pump they gave me in the hospital kept it consistently around a 3 or 4, sometimes down to 1. It felt like a general soreness or cramping between my shoulder blades, as if I'd put in a long day of lifting heavy things, nothing acute or radiating. I also had some shortness of breath immediately afterwards that was resolved with extra oxygen and deep breathing exercises- none of that was painful, just made me sleepy. I guess overall lethargy more than pain was my main complaint.

Your PT will be different from mine, but the sitting up and becoming more mobile part wasn't bad either. It just felt like I had duct tape all over my back, very stiff. It's also a little dizzying when they lift you after a day or so of lying flat. My eyes were a tad unfocused.

Since getting out of the hospital my energy is coming back swiftly- the first couple days I was getting a bit uncomfortable between my med dosages (as in looking at the clock, wanting the next round to hurry up so I could get rid of the discomfort), but since then it's been getting better day by day. Today I found myself pacing around the house as I was thinking about something, and I've been able to sit up each day and watch quite a lot of TV/surf the internet in between mobility exercises. I hope I don't sound like I'm sugar-coating the process- I know not everyone feels ship-shape immediately, I just want to reassure you that it's probably not going to be half as bad as you think.

Also- and I'd recommend this to everyone with upcoming surgery- have a few protein shakes in the days before to build up your vitamin stores. You won't be able to eat for a day or so and you don't want your body running on fumes trying to rebuild muscle! Calcium is probably good to load up on as well, and maybe some iron.

You'll do fine, I know it. And another tip someone one this site had that I found really useful was getting a foam topper for your existing mattress- the softer your healing-bed the better.
Reply With Quote
  #6  
Old 12th June 2014, 11:29 PM
danielblack2002 danielblack2002 is offline
Junior Member
 
Join Date: Jun 2014
Posts: 14
Default Re: Surgery next Thursday

Hey. Ive been taking vitamins and iron regularly anyway so im good on that front. i also drink lots of milk (probably a litre a day or more). The hardest thing i think im going to find is taking it easy for a while as im used to cycling and gym most days. lol. Im not going to lie im pooping it abit. but my surgeon is really nice and has reassured me that it will all be okay in the end. I will be able to get access to internet so i will keep everyone informed of my progress while im in. i also dont know how il do without food for a few days lol i love my food especially pasta and chicken.
Reply With Quote
  #7  
Old 13th June 2014, 12:13 AM
HayleyM's Avatar
HayleyM HayleyM is offline
OrangeL
 
Join Date: May 2014
Location: Texas
Posts: 50
Default Re: Surgery next Thursday

Quote:
Originally Posted by danielblack2002 View Post
Hey. Ive been taking vitamins and iron regularly anyway so im good on that front. i also drink lots of milk (probably a litre a day or more). The hardest thing i think im going to find is taking it easy for a while as im used to cycling and gym most days. lol. Im not going to lie im pooping it abit. but my surgeon is really nice and has reassured me that it will all be okay in the end. I will be able to get access to internet so i will keep everyone informed of my progress while im in. i also dont know how il do without food for a few days lol i love my food especially pasta and chicken.
That's great- we'll be eagerly reading! I think they have you on a vitamin drip as well, but I say more is better- and the hospital nurses agreed that protein supplementation is really beneficial- they told me to try to get about 60 grams per day. And don't worry- you won't be hungry, the anesthesia puts your digestive system to sleep so you won't even feel like eating for the first day. For the first week or so I ate just to keep up my health, but sometime this week I had my old ravenous appetite back. You'll be tucking into a chicken & pasta dinner in no time. (I'm hungry now)
Reply With Quote
  #8  
Old 13th June 2014, 12:46 AM
danielblack2002 danielblack2002 is offline
Junior Member
 
Join Date: Jun 2014
Posts: 14
Default Re: Surgery next Thursday

lol any time ive had major surgery ive always been really really hungry after it.. but i guess its not possible to eat right away after this type of surgery. I know the nurses all very well too so that will make things so much easier. I just hope i can cope with it all.
Reply With Quote
  #9  
Old 13th June 2014, 08:04 PM
GillyG's Avatar
GillyG GillyG is offline
Admin & Da Police Force!
 
Join Date: Jan 1970
Location: Sheffield, UK
Posts: 16,217
Default Re: Surgery next Thursday

Hi Daniel

I'm glad you've had the chance to meet your new surgeon beforehand and feel comfortable with him. Personally, I think this is hugely important. Have you asked him what impact the fusion would have on your sports? He would be the best one to advise you on that.

Hope all goes well and that you come back here and tell us all about it!
__________________
Me, a Mod? Nah ... I'll always be a rocker
Reply With Quote
  #10  
Old 14th June 2014, 12:42 AM
danielblack2002 danielblack2002 is offline
Junior Member
 
Join Date: Jun 2014
Posts: 14
Default Re: Surgery next Thursday

he told me that il be stiff so not much bending or flexing in my back. so i have a fair idea myself.
Reply With Quote
  #11  
Old 18th June 2014, 01:56 AM
danielblack2002 danielblack2002 is offline
Junior Member
 
Join Date: Jun 2014
Posts: 14
Default Re: Surgery next Thursday

so ive found out a bit more about what they are going to do. they are doing a fusion from my shoulder blades right down to my hips with a plate where my spinabifida scar is. and they are also tying off my spinalchord as well.. im not so sure what to think of that as ive heard it can make your bowl and urine function worse. anyone had this done?
Reply With Quote
  #12  
Old 22nd June 2014, 06:33 PM
HayleyM's Avatar
HayleyM HayleyM is offline
OrangeL
 
Join Date: May 2014
Location: Texas
Posts: 50
Default Re: Surgery next Thursday

I guess you're in early recovery mode right now Daniel! Hope all went well. Fingers crossed that you'll bounce back quickly
Reply With Quote
  #13  
Old 24th June 2014, 05:43 AM
danielblack2002 danielblack2002 is offline
Junior Member
 
Join Date: Jun 2014
Posts: 14
Default Re: Surgery next Thursday

Hi thanks all for support. cant believe i had worries. pain wise the illiac screws in my pelvis which i hope will pass as its excruitiating been off pca pump day 3 after surgery. nurses have been great source of fun and help calm my anxiety. overall im shocked that im not getting spine pain. the pain in my pelvis really had worried id broke something. but overall i wish i went for it sooner. id go through it again without question. i have been spending lots of time in my wheelchair 4th day after surgery i spent 3 hours and regretted it next day lol. now spend about 45 mins to an hour much easier. anyone any tips for the illiac screw pelvis pain or any other tips wud b great. im recovering faster than hoped. surgery lasted 9.am till 8pm. again only big pain i get is from pelvis no massive pain in spine. need new seat and back. feel slow pushing because seating an back is all wrong. overall i feel silly for stressing. any tips wud b great
Reply With Quote
  #14  
Old 24th June 2014, 04:52 PM
HayleyM's Avatar
HayleyM HayleyM is offline
OrangeL
 
Join Date: May 2014
Location: Texas
Posts: 50
Default Re: Surgery next Thursday

Quote:
Originally Posted by danielblack2002 View Post
Hi thanks all for support. cant believe i had worries. pain wise the illiac screws in my pelvis which i hope will pass as its excruitiating been off pca pump day 3 after surgery. nurses have been great source of fun and help calm my anxiety. overall im shocked that im not getting spine pain. the pain in my pelvis really had worried id broke something. but overall i wish i went for it sooner. id go through it again without question. i have been spending lots of time in my wheelchair 4th day after surgery i spent 3 hours and regretted it next day lol. now spend about 45 mins to an hour much easier. anyone any tips for the illiac screw pelvis pain or any other tips wud b great. im recovering faster than hoped. surgery lasted 9.am till 8pm. again only big pain i get is from pelvis no massive pain in spine. need new seat and back. feel slow pushing because seating an back is all wrong. overall i feel silly for stressing. any tips wud b great
Wonderful news Daniel! I'm so happy for you- you made it through, no more worrying, no more stress, now it's just about waiting, taking it slow & improving day by day. Sounds like you're recovering wonderfully- 3 hours of sitting on the 4th day!!! I think I managed an hour at that point.

I think I was off PCA about the same time- sorry to hear about your pelvic pain- As I'm only fused to L2 I can't help with the iliac screws. I do know that one area tended to hurt significantly more than the rest of my back (my upper right back), but I arranged my pillows as I slept, took my meds & the pain in that area just steadily faded after about a week and a half. Hopefully the pelvic pain will resolve similarly!

My only tips are to set phone alarms for your med doses- maybe get someone to bring you your meds for the first few days at home. I'd recommend a foam topper for your mattress, or lots of pillows. Eat lots of nutritious food- get your protein, Calcium, iron if they recommend it. Get plenty of rest, don't push yourself too hard.

Congratulations! Don't feel silly for stressing- I think true bravery is being scared and going through with what scares you. It's such a relief when it's all over Post when you can!
Reply With Quote
  #15  
Old 24th June 2014, 06:27 PM
GillyG's Avatar
GillyG GillyG is offline
Admin & Da Police Force!
 
Join Date: Jan 1970
Location: Sheffield, UK
Posts: 16,217
Default Re: Surgery next Thursday

Great to hear you're doing so well Daniel
__________________
Me, a Mod? Nah ... I'll always be a rocker
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump


All times are GMT +1. The time now is 06:50 AM.


Powered by vBulletin® Version 3.7.1
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.
(c) Scoliosis Support