Other Spinal fusion for scoliosis?

[bellbird]

Hi all,

I am considering a spinal fusion for my scoliosis - 54 degree lumbar and I think 37 thoracic causing chronic discomfort and pain.
I'm trying to inform myself as best as possible before making a decision on whether to go ahead, so wanted to ask if anyone else on here has had the procedure / knows someone who has, and if so, what your/their experience was? I realise that it's different for everyone :)

 

[whiteraven]

Hi @bellbird - I have scoliosis, too, but not nearly the curvature you have. I'm sorry you are experiencing a lot of pain; I know how disabling chronic back pain can be.

I haven't had the surgery, but whenever I need to have surgery (I had brain surgery in 2006), I look for forums where folks who have the condition post. Spine-health has one specifically for scoliosis, and there are people who have had the surgery there, also.

What I discovered when I had my brain surgery is that preparing a LOT in advance made it really easy emotionally. I have DID and insiders who thought the surgery might kill them or one who thought she might fall out during the surgery. We became completely familiar with the operation, asked smart questions of the surgeon, and solicited support in advance so people were there for us after. I didn't do all of that when I had my hysterectomy and the experiences were worlds apart in terms of how well I recovered.

Best of luck to you!

 

[bellbird]

I look for forums where folks who have the condition post.

preparing a LOT in advance made it really easy emotionally

Hey @whiteraven , sorry you have scoliosis too. Thank you for the advice I'll definitely check out spine-health.
I'm already compiling a list of questions for my surgeon (my doctor wrote my referral letter today). I'll make my final decision after speaking with the surgeon.
Glad to hear that preparation helped to settle you (I'm assuming 'you' is the correct second person pronoun to use when talking with someone with DID, but please correct me if otherwise :) ); brain surgery is no mean feat either!
Wishing you good health :hug:

 

[whiteraven]

I'm assuming 'you' is the correct second person pronoun to use when talking with someone with DID, but please correct me if otherwise :)

:-) Since you can be both singular and plural, absolutely!

 

[Fadeaway]

Gawd no, dont do it. I know to many people who reggreted it and scoliosis can be cured with a good chiropractor. I had it pretty bad as a kid and young adult. Luckily I got some treatments on jr. High, and then a friend married a chiropractor.

Please dont do a spinal fusion. My best friend is suffering horribly from one last febuary.

You are looking at still a still treatable condition, but a spinal fusion cant be reversed.

 

[bellbird]

Hey @Fadeaway , I'm sorry that your friends had bad surgery experiences :( Is it a lot of pain that they're dealing with post-op?

 

[AverageBear]

My scoliosis matched your numbers, but a bad wreck a year ago has "tipped" my rib cage over so it now rests on my pelvis. My numbers have worsened in the months since the last scoliosis survery xrays were done, so of course I'm too scared to get new xrays with worsening numbers. I'm avoiding it, but good lord I joined this forum for my CPTSD and I run into scoliosis!? WTF? Funny...so my heart went out to you and here I am posting about scoliosis. In a PTSD forum.

For me, even with THAT dramatic change from my wreck injuries, I will not have spine surgery. No way in hell! And yes, I've gone to surgeons to explore this option. I don't believe a spine surgery will lessen my painful condition.

But we are different ages, different bodies and different lives. I've always kept the 25% rule in mind when spine surgery is considered:
25% improve, 25% have no change, 25% are worse, and 25% have a whole new set of problems aside from the problem that surgery was supposed to fix.

Muscles, ligaments, nerves, vertebrae and bones are involved, as well as the hardware they install in the surgery. You can NEVER know what the surgery will screw up in all those potential categories!

I live daily with pain in all those parts of my spine. For me, submitting to surgery is a fool's errand. Instead, I gotta figure out how the hell to deal with my ribcage now resting on my pelvic crest...

 

[Deleted member 47099]

Hey Bellbird,

I've had a lot of spine issues over the years. It's okay---ish now, but when it was horrendously bad, I found a really good resource for spine stuff.
It's: www.spine-health.com/forums
It's an amazing place, IMO. Totally scienced based and a wealth of knowledge in that community.
There'd be tons of peeps there who have had the operation you're considering and could talk to you about pros and cons.
Hope it helps! :)

Edit: Oh, whoops - didn't read everyone's posts yet! I see someone's already recommended it!

Spine-health has one specifically for scoliosis, and there are people who have had the surgery there, also.

Another edit: Most of the folks on spine-health who had had surgery also said "don't do it" to those who hadn't, if I remember correctly from about 7 years ago.
At the time, I opted against surgery too.
I was told I might need emergency surgery, if my spine starts impinging a nerve that goes to my bowels or to other inner organs - and that's fine, of course I would've done that!
But the suggested operations for "less pain" - I refuse all those and am glad that I did. Doctors *claim* to know far more than they do :meh:
If you don't have a choice - then trust in them to do the best job they can tho!
But if you have a choice, I'd be wary.
Talk to the folks on spine health tho - maybe the surgery you're considering is well-managable for surgeons these days - there is constant medical progress, so sometimes info that is 5 or 10 years old is already outdated.

Wishing you lots of luck! :)

 

[Abstract]

No, non surgical options won't address the issue for those who are severely enough affected. At all. What is severe enough? I couldn't say as I am not an expert and it depends how it manifests. Scoliosis can be critical life and death choice for some people.

I do know 3 people who have done it and all are extremely "happy" they did it. One of them had a 90%+ situation. The modern approach to the opp is much improved apparently. I think its all a matter of evaluating the possible repercussions and balancing out options.

 

[bellbird]

I've always kept the 25% rule in mind when spine surgery is considered

Will keep it in mind, thanks!

Instead, I gotta figure out how the hell to deal with my ribcage now resting on my pelvic crest...

Gahh. I empathise. I can't bend very far towards the right because my hip and rib knock into each other. It's an odd concept to explain to straight-spined folks!

Oh, whoops - didn't read everyone's posts yet! I see someone's already recommended it!

Hehe, yeah, thanks for posting though @Sophy !

there is constant medical progress, so sometimes info that is 5 or 10 years old is already outdated

Defo a possibility! It's a useful resource though for sure :)

non surgical options won't address the issue for those who are severely enough affected.

Yeah agreed. I think I'd tentatively put myself as bordering towards that category. Particularly given the knowledge that my curve is and will continue to increase for the rest of my life, so while I fit into the conventional surgery-is-recommended degree range now, god knows where I'll be 10/20/50 years down the track

I do know 3 people who have done it and all are extremely "happy" they did it.

Really glad for them that they had positive experiences.

I think its all a matter of evaluating the possible repercussions and balancing out options.

Absolutely

 

[MellyLou81]

Hi :)
Am a newbie and a friend of a PTSD sufferer.
However, as a mum to a teenage boy (16) who also has autism alongside scoliosis (idiopathic and picked up as a 15 year old), we gad no choice but to go down the road of a spinal fusion. When he was finally diagnosed and saw the scoliosis specialist at the Royal Children's Hospital in Melbourne, in Nov last year, his curvature was 59 degrees. By March this year it was 61 degrees. And as an already tall and big boy, who was nearly fumly grown, the surgeon told me he'd get progressively worse by at least a degree or 2 a year. By 30 he'd be incredibly bent to the side and irreparable.
June 5th this year, he had the spinal fusion. T4- L3.
Everything went well (a part from not being listened to properly in regards to the dire need of pre- med and an acute anxiety attack), was done on a Tuesday morning and we left the hospital late on the Thursday night. Drove 3 hrs home, with pain meds and no issues at all (other than redressing his wound twice the next day). Was like having a newborn again for the first 2 weeks- log rolling in and out of bed multiple times a night but quickly his ability to do it himself came (he just wanted cuddles lol) and he quickly got back into his usual routine.
6 weeks after his op, he had medical review- he gained 5-6cm and was a shade under 6 foot. Best thing was seeing the huge difference on his spine. He was and is pretty damn straight! I have the comparison pics available if anyone wants to see.
Very rarely complains of back pain and was off all opioid pain meds after 2 weeks and now rarely has any type of pain meds- ie panadol or nurofen.

Was it worth it? YES! Does he wish he can bend his back again- yes, but he has an excellent handle on bending his knees properly to achieve the same action. Also, 4 months on, he can do almost everything he did before surgery.
Originally, I was really astounded by the mere fact according to the scoliosis specialist nurse, kids dont need rehab- or even physio/ OT afterwards (out of hospital), mainly due to kids naturally being motivated and obeying their inner urge to move around frequently. Really tripped my mind! But it is pretty much true.
However, adults are different, in that they are more reluctant to mobilise after surgery, mainly due to the fear of pain when moving. Therefore more complications happen with adults.

The surgery scared the crap out of him- poor guy, but as the first thing he said in recovery "I'm not dead!"

World class surgeon, world class and renowned hospital and best of all- public hospital which embodies world class healthcare that didnt cost us anything for the procedure or hospital stay. Just a bomb in carparking fees lol

This is just our scoliosis success story and of course, you have to do the best thing for you. Research, get numerous opinions from top surgeons and please don't rely solely on the internet or Dr Google graduates. Whatever you do or don't do, there are always differences in opinions and personal experiences. So again, do what you yourself need to do- for you x

Thank you x

 

[bellbird]

Hi :)
Am a newbie and a friend of a PTSD sufferer.
However, as a mum to a teenage boy (16) who also has autism alongside scoliosis (idiopathic and picked up as a 15 year old), we gad no choice but to go down the road of a spinal fusion. When he was finally diagnosed and saw the scoliosis specialist at the Royal Children's Hospital in Melbourne, in Nov last year, his curvature was 59 degrees. By March this year it was 61 degrees. And as an already tall and big boy, who was nearly fumly grown, the surgeon told me he'd get progressively worse by at least a degree or 2 a year. By 30 he'd be incredibly bent to the side and irreparable.
June 5th this year, he had the spinal fusion. T4- L3.
Everything went well (a part from not being listened to properly in regards to the dire need of pre- med and an acute anxiety attack), was done on a Tuesday morning and we left the hospital late on the Thursday night. Drove 3 hrs home, with pain meds and no issues at all (other than redressing his wound twice the next day). Was like having a newborn again for the first 2 weeks- log rolling in and out of bed multiple times a night but quickly his ability to do it himself came (he just wanted cuddles lol) and he quickly got back into his usual routine.
6 weeks after his op, he had medical review- he gained 5-6cm and was a shade under 6 foot. Best thing was seeing the huge difference on his spine. He was and is pretty damn straight! I have the comparison pics available if anyone wants to see.
Very rarely complains of back pain and was off all opioid pain meds after 2 weeks and now rarely has any type of pain meds- ie panadol or nurofen.

Was it worth it? YES! Does he wish he can bend his back again- yes, but he has an excellent handle on bending his knees properly to achieve the same action. Also, 4 months on, he can do almost everything he did before surgery.
Originally, I was really astounded by the mere fact according to the scoliosis specialist nurse, kids dont need rehab- or even physio/ OT afterwards (out of hospital), mainly due to kids naturally being motivated and obeying their inner urge to move around frequently. Really tripped my mind! But it is pretty much true.
However, adults are different, in that they are more reluctant to mobilise after surgery, mainly due to the fear of pain when moving. Therefore more complications happen with adults.

The surgery scared the crap out of him- poor guy, but as the first thing he said in recovery "I'm not dead!"

World class surgeon, world class and renowned hospital and best of all- public hospital which embodies world class healthcare that didnt cost us anything for the procedure or hospital stay. Just a bomb in carparking fees lol

This is just our scoliosis success story and of course, you have to do the best thing for you. Research, get numerous opinions from top surgeons and please don't rely solely on the internet or Dr Google graduates. Whatever you do or don't do, there are always differences in opinions and personal experiences. So again, do what you yourself need to do- for you x

Thank you x

Hey @MellyLou81 :)
First of all, welcome to the forum! And secondly, thank you very much for taking the time to write your post here; it's always helpful to hear from those who have (directly or indirectly) been through this process themselves.

It sounds like your son was an absolute champion in the post-op recovery and I'm really glad to hear the surgery went well for him.

do what you yourself need to do- for you

:hug:

Where things stand currently with me: I'll be meeting with an orthopaedic surgeon at a scoliosis clinic in about 4-5 weeks.
I've been doing a lot of reading online and have been compiling a list of questions to ask the surgeon. I've also got a good friend coming to the appointment with me so she'll be able to pick up any questions or information I might forget in the moment.
I'm still at this stage thinking I will go through with the surgery given the pain and discomfort I've been having despite doing regular exercises for my back, but of course won't make any decisions until after meeting with the surgeon.