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View Full Version : 3 Years and 7 Months Later...



BendyBill
08-05-2015, 07:43 AM
Dear All,

It's been a while since I've posted here and for that I apologise. For the pre-op forum trawlers, I'm well aware of the importance of finding positive posts within the plethora of those regarding complications, pain and revision surgery. Here is mine.

My Scoliosis journey has been rather fortuitous thus far. I was diagnosed with scoliosis at 12 years old after getting checked out for some on-off back and shoulder pain I was having. The double curvature was fairly mild and, like many, I was advised to return to the hospital every year to check for progression - this went on for another 12 years. Over that time my back pain worsened and my stamina in daily life decreased. Giving up contact sports at school, limiting the hours I could practice music (my posture whilst playing the 'cello seemed to aggravate things and I eventually had to give it up), needing to stop and lie down multiple times a day and sometimes just needing to stay home altogether when I should have been at university lectures etc... These things are often part and parcel of the scoliosis journey.

At age 23 I had the appointment with my surgeon (Gavin Bowden) that determined my curvature was not going to stabilise, and at 60deg thoracic and 40deg lumbar it was time to operate. A daunting prospect for all.

I spent most of my time researching after that, watching videos of the operation and spending hours searching through forums trying to work out what I should expect. Most of the time I'd come across horror stories regarding paralysis or chronic pain and, although these things CAN happen, no one ever told me that a lot of the time those with successful outcomes go off and live their lives and don't post any more.

My surgery was on the 3rd January 2012, they fused T3 to L1 and it took 9 hours. The first few days afterwards were probably the hardest of my life so far. The pain is pretty astounding but, for me, the hardest part was, when the anaesthetic had subsided and I was wheeled into the ward, I had an overwhelming sense of aloneness and a total lack of control. This was probably not helped by the hospital staff who, bar one, rarely spoke to me with compassion or made me feel looked after.

It seemed like progress was slow for the week in hospital and although I didn't feel ready, I headed home with my parents. This was when things took a turn for the better. It must have been my mums cooking. Day 1 at home was tough as I spent it throwing up from the medication (bad idea... pain...) but form there I made unbelievably swift progress. I was walking more and more every day and feeling happier and more comfortable by the hour. The pain was subsiding at such a rate that in under 3 weeks I was completely off any pain medication (having been given 3 months worth..). After 3 months I moved out of my parents back to London and instantly got back to work going on a 2 month tour singing.

Since then I haven't been restricted once. Physically I've been able to do everything I want to - surfing, climbing, hiking, skydiving etc... with next to no issues. After particularly intense days I sometimes find my lower back takes a bit of time to ease in when I lie down so I know I need to address this and strengthen it with exercises. I'm sure it's because those lumbar vertebrae and discs are taking all the strain now that most of the rest of my spine is fused (do you think this is a fair assumption?). Every few months I may also experience a short sharp pain in my ribs but that used to happen before too. Apart from these minor issues I'm trouble free and often forget about what happened completely.

So that's about it. Away from the spine related, all is going well. I'm still singing and loving my new-ish lung capacity. Things are busy and I'm getting to sing all over the world with trips to Morocco, Portugal, South Korea, France and Costa Rica coming up in the next few months, then I'll be taking a little time off at the beginning of next year to go and see the world on my terms :)

I hope this has helped a little bit to convince anyone who needs convincing that this operation can fix you. I know things can go wrong, drastically for some, but it can also go very right. Thanks to wonderful forums like this everyone is able to make an informed decision and, whatever it is, I wish every one of you all the luck in the world.

Billy x

mabeckoff
08-05-2015, 10:32 AM
I am so glad to hear from you Bill . I am equally glad to hear that things are going so well for you. You are correct that people tend to disappear after surgery. Please keep in touch to continue to let others know that you are doing well.

Doreen1
08-05-2015, 11:43 AM
Great to hear!

golfnut
08-05-2015, 09:43 PM
Bill,
It is great to read that you are doing well after your surgery and back with your singing career! Wonderful news!

titaniumed
08-05-2015, 10:16 PM
Yes, great news Bill.....

How long did it take till you felt you weren’t improving anymore? Or at least 95% completed with your recovery?

Ed

JenniferG
08-06-2015, 04:24 AM
Great to get your follow up Bill! Have wondered how you were going. Enjoy your life!

BendyBill
08-06-2015, 09:59 AM
Thanks for your replies and kind words everyone.


Yes, great news Bill.....

How long did it take till you felt you weren’t improving anymore? Or at least 95% completed with your recovery?

Ed

Ed, It was probably around the 3 month mark if I'm honest. The only thing holding me back then was the mental worry of, because I felt fine, doing too much too soon. I could still feel the metalwork as I still can but there was no discomfort or any negative feeling towards it.

B

dailypain
08-06-2015, 05:33 PM
Bill...glad to hear you are doing ok.

But most severe pain post surgery patients, I believe, have been fused all the way down to sacrum.

My first surgery 40 years ago was down to L3.

Was ok for probably 30 of those years.

Now since I am fused now down to sacrum, pain and limitations are constant.

Thanks for your input.

titaniumed
08-07-2015, 12:09 AM
Age 23, 3 weeks of meds, and a 3 month recovery.....

Its almost hard for me to believe.....I just started flapping my wings a little bit at that point. Well, only one wing since the other was broken.

Thanks for posting.....Its nice to read these testimonials....

Got any more music vids?

Ed

Scoligal85
08-08-2015, 12:40 AM
Billy,
I understand completely what you mean and why you started this thread....I am 29 and hit my 1 year anniversary July 28th. In fact my 1 year check up is this Monday. I am on the forums often but no longer with all the questions, mostly just browsing now. I am fused T4 to L5, I chose to not fuse to my sacrum.... not sure how that'll pan out but I have high hopes. I am back at the gym at least 4 nights a week, lifting again "no squats or dead lifts' and I began running again 6 months post op. My stamina is back and my core is back to itself again. I am a cosmetologist and am feeling well enough to open my own salon at the end of the month!
I guess what I am saying is....I too read so many posts that make me so sad for people, pain sucks...hurting sucks! I have bad days, mostly if I over do it and 9 times out of 10 it's in my shoulder blade area at the top of my fusion. But I would say I am doin alright! :)
I am so glad to hear your doing well! I found your story to be quit uplifting! Keep on livin!!!! :)

jackieg412
08-08-2015, 08:29 AM
Very nice to hear that both of you are doing really well. Young people getting on with their life . It is great!

titaniumed
08-08-2015, 09:59 AM
Very nice to hear all three of you are doing very well. Young people getting on with their life. (smiley face)

Well there Mrs Krier, so glad to hear that things are fantastico! Whoo Hoo! Still waiting for those Belize photos.....

Jackie, Its hard to comment on your situation being such a rare thing......maybe one in a billion? I guess when you think about how special we all are, we are all one in a billion.....

Ed

BendyBill
08-14-2015, 06:25 AM
Bill...glad to hear you are doing ok.

But most severe pain post surgery patients, I believe, have been fused all the way down to sacrum.

My first surgery 40 years ago was down to L3.

Was ok for probably 30 of those years.

Now since I am fused now down to sacrum, pain and limitations are constant.

Thanks for your input.

I'm sorry to hear of your discomfort and am aware that for some who have been fused to sacrum, the pain is debilitating. I hope you know I'm not trying to pull the wool over peoples eyes that their are risks - I just wanted to give testimony that things can go well. Might I ask what happened that meant you had to have surgery to sacrum after your initial fusion?

-

Ed, I'm sure there are plenty of videos knocking around, yes! I'll have a look and post one soon for you guys.

-

Yes Mrs. Krier! Glad to hear you're moving on with things :) I'm looking to get into some kind of exercise regimen specifically to strengthen the rest of my back that isn't fused... Any ideas what would work best? Should I be looking for a yoga/pilates route? Have your sessions at the gym been helping?


B

Scoligal85
08-15-2015, 11:38 AM
Billy,
YES! Since I've started back up at the gym my flexibility has improved greatly! As far as your workout, I was told that I needed to keep a strong core and work the hip and butt muscles because all of them will play a huge role in supporting the fusion. I saw a sports medicine doctor just for input and he agreed with all the above. Start with cardio, stick with an elipticle or eliptamill because there's less impact on the lower back, for your core....a stability ball is going to be you very best friend! It'll support you back completely while doing ab workouts. I even lie on the ball while I do presses because the pressure feels way better then that of the actual bench used to bench press. Planks are a big one too, there's a ton of diffrent versions of the plank to keep it changing! Best of luck....I can't wait to hear how you feel after starting, I had a huge burst of energy and regained some of the old me!!

titaniumed
08-15-2015, 10:33 PM
I had a huge burst of energy and regained some of the old me!!

This is so nice reading this.....I am so happy for you Ronee......

Ed

Scoligal85
08-18-2015, 11:14 PM
Aw shucks Doc Ed....never could have gotten through half of it without you allowing me to pick your brain as often as I did!! Your the best!! ;)

susancook
08-19-2015, 12:27 AM
Billy, so glad to hear that you are doing well. I think that you owe your recovery to you mum's good cooking. Make sure that you give her a big hug tonight!
Keep enjoying life!
Susan

dailypain
08-21-2015, 05:43 PM
I'm sorry to hear of your discomfort and am aware that for some who have been fused to sacrum, the pain is debilitating. I hope you know I'm not trying to pull the wool over peoples eyes that their are risks - I just wanted to give testimony that things can go well. Might I ask what happened that meant you had to have surgery to sacrum after your initial fusion?

-

Ed, I'm sure there are plenty of videos knocking around, yes! I'll have a look and post one soon for you guys.

-

Yes Mrs. Krier! Glad to hear you're moving on with things :) I'm looking to get into some kind of exercise regimen specifically to strengthen the rest of my back that isn't fused... Any ideas what would work best? Should I be looking for a yoga/pilates route? Have your sessions at the gym been helping?


B

Well what happens is the disc's of the non fused vertebrae over time wear out. Which then causes various painful problems. Ie: Stenosis, sciatica, etc. Then the doctor will tell you the only way to fix it is a new fusion down to sacrum. You will try PT and pain management first but usually with most severe scoliosis cases it will come down to a revision surgery. So enjoy your life now. I hope yours never gets any worse but for many of us it did.

Daily Pain

Scoligal85
08-25-2015, 10:05 AM
Dailypain?.....
I, and I am certain Billy have been made well aware of what happens.....also what has happened to many of you here. I've also seen a PT and a sports med specialist and them along with my surgeon have assured me that a strong core greatly increases my odds of success, that being said.....if in 10 years I have to go back in.....thank you God for the 10 years of being strightened out and strong.
Best wishes daily pain....stay strong and active Billy! Ed....I'll load of pics for you soon!!!

green m&m
08-25-2015, 09:03 PM
I share similar sentiments Scoligal85.

I was fully aware of the possibility of revisions when I finally set the date for surgery. Actually I knew about revisions years before surgery was even a definite possibility.

Part of my decision was to go ahead was due to deciding either I have pain always for rest of my life or have a period that my spine wasn't causing me pain and discomfort. It only became obvious just how much pain I had due to scoliosis when the pain went away. Shoulder pain I had prior to surgery I thought was a separate issue is gone... so I guess it was my twisted spine and rib hump causing the shoulder pain.

Also, I am hoping if I need a revision, by that time there'll be better technology available for revision/fusion overall.

Scoligal85
08-25-2015, 10:39 PM
Green m&m
Yes mam...I hope the very same thing! When I hurt now, it's mostly in my shoulder blade area. I wish you the very very best of luck!!!!!

LSKOCH5
09-09-2015, 11:53 AM
Congrats on all you've been accomplishing, Bill. It's been a long time since I've been on here as well, but you were a huge beam of light when Jacob had his surgery exactly a year to the day after yours. He's very much like you, all about music & outdoors; percussion, singer, pianist, hiker, SUP, traveling, etc. Sure would love to see another of your videos! You all have so much talent.