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  #1  
Old 8th July 2014, 04:28 PM
Paul Baker Paul Baker is offline
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Default Older people and Scoliosis surgery

Hi

Just wondered if anyone else is like me ... 53, 84 degree S curve brought about by neuro-muscular issues?

Just returned from the RVI after a whole bunch of tests .. basically Mr Gibson says I'm in pretty much uncharted territory .. he is prepared to operate but feels the procedure may be risky and likely to have recovery times of 12 to 24 months to get back to where I am now ... anyone else faced similar decisions? Which way did you go?

He wants to start with a stenosis op to decompress spinal cord .. anyone else (particularly of my age and with a large curve) had this done? Did it help back and leg pain? can't help thinking the compression of the spine is caused by the curve

Probably a 1000 more questions!

Cheers
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Old 9th July 2014, 03:55 AM
Rod Stewart Rod Stewart is offline
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Default Re: Older people and Scoliosis surgery

Paul

Yes. Been there done that. But short of any “Neuro” issues. Was there a specific diagnosis on this from your surgeon? Neuromuscular disease’s are not easy to diagnose....and are very specific. What does he mean by “uncharted territory” ? I am wondering about this.

I too was warned...and actually rejected in the end because of it being too dangerous. It’s a heavy decision. My operative notes are on my public profile. I had a huge multi-level open anterior ALIF surgery....these are serious surgeries. I had 2 scoli surgeons, and a vascular surgeon on that one. It was a 2 day stage with the posterior following.

Many of us elder scolis have stenosis....overgrowth of bone and herniated discs just seem to happen with age.

I think you should know exactly where he intends to cut...Some surgeons will take their finger and draw the lines on you. Did he draw any lines on your front side? E-mail with your surgeons nurse or assistant is a good way to communicate. If you do this, keep it simple as they cant possibly answer too many questions at a time. Just limit to 2 or 3 questions at a time.

I did a 2 year recovery. 10% per month roughly.....90% in a year, the last 10% took another year.

999 more questions to go....keep em coming.

Ed
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  #3  
Old 9th July 2014, 12:50 PM
Paul Baker Paul Baker is offline
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Default Re: Older people and Scoliosis surgery

My neuro issues stem from a childhood illness .. akin to polio ... that left me paralysed from the neck down and in hospital for a year. I ended up walking again with a limp but resulted in some muscle loss in my back - particularly around my right shoulder. I think its this muscle imbalance that has caused my curve which has worsened as i age .. now have an imbalance which has my head over my right hip and a bit of a backwards lean

No lines were drawn on me ... think he wants to do the stenosis op and is willing (ish) to do the bigger op but feels with my medical history, age and curve that there are no 'text book' examples to give a good %age indication of likely outcomes

Did you get any complications? What are the risk factors you weighed up before deciding to go for it? Its reassuring to know that someone of similar age etc has been there and done it ! on balance do you now feel it was worth the 2 year recovery hard work? Do you work if so what was your return to work timescales? I'm rather lucky in that I get up to 12 months on full pay (might need to check this - pretty sure thats right)

Was your surgeon NHS? Didn't realise they took email queries .. might have to get his secretaries address. I assume you can just ring for this?
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Old 9th July 2014, 03:37 PM
Rod Stewart Rod Stewart is offline
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Default Re: Older people and Scoliosis surgery

Paul

I don’t know what he means by a stenosis op.....is this possibly a clearing on 2 or 3 levels from the back without addressing or straightening the curve? I would ask him to define exactly what he wants to do. Small surgeries are being done on us older patients, the surgeons mentioned it at the last UCSF meeting I went to in San Francisco. Addressing just the pain areas. This also has to be weighed because I have seen small shorty fusions create more problems as far as curve acceleration....Tough choices. In general, less surgery is better, and surgery is usually a last ditch effort. I think this is carved in stone someplace....

On complications, I was warned and guaranteed 100% that something would go wrong. In the end I was lucky and lost my gall bladder. Gall stones formed from being fed as I was NPO, Nil per Os which means no food by mouth. Being fed superfood that has no fat leaves the gall bladder stagnant, and cholesterol forms stones. This happened 14 months post, and verified by CT before and after my scoli surgeries. The radiologist caught that one.

My decision was solely based on pain and couldn’t wait anymore. I was dying. It was 9-10 level sciatica for 6 years, used NSAID’s but no Opoids to quell the pain. In the end, long term med usage is tricky because you can compromise your liver and kidneys....and pay a price.

I was a Luque wire candidate when I was 15 and rejected surgery back then in 1974. I waited 34 years. I watched the evolution and the launch of the pedicle screw....it was my disease and I paid attention. My pain dictated my decision. There was almost no decision.

I did work from home for 18 months and made major decisions from home. I would stare at drawings multiple times during the day and made no quick decisions. If I didn’t have an answer, I didn’t have an answer. Everyone was very patient and understanding. I had just sold my precision manufacturing business and had 53 employees. I was also heartbroken on the inside along with dealing with a really tough recovery.

In the end it was worth it. I didn’t have a choice as I was long overdue. Pain made my decision, major pain is quite effective in deciding for you.

How is your pain? Have you had any major pain events? Electrical, burning events?

I’m in the US. I live near Lake Tahoe....I spent 2-1/2 years discussing my surgeries with my surgeon.

998 to go.

Ed
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Old 9th July 2014, 05:18 PM
Paul Baker Paul Baker is offline
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Default Re: Older people and Scoliosis surgery

Stenosis op means a spinal decompression I think - basically at L4/5 level or around that my spinal cord more or less vanishes as its squashed between vertebrae - I believe and have seen MRI etc that shows no spinal cord in that area .. this leads to a few twinges! This is the best web site I've found on it http://www.niams.nih.gov/Health_Info...nosis/#spine_b

and yes he wants to do this without addressing the curve .. to my simple non-medical brain that will just shift the issue to another area .. if the curve causes the stress putting a patch will just move the stress elsewhere in the spine

i'm trying to get a handle on what else could go wrong.. did you get a 'list' of possible complications? i guess a gall bladder is not a major issue in balance with the pain relief?

I have good periods and bad periods ... some days I can hardly walk and other days its a dull throbbing in my spine ... usually mornings are worse. I'm coping on Ibruprofen .. ranging from 2 to 6 tablets a day .. but I do have a high pain threshold ... occasionally my body just says enough, my legs collapse and I end up in a heap on the floor .. this is when I'm at my worst .. something just spasms the back and leg muscles and says 'enough'!

I've got a few queries in with my HR department to see what sort of absence / return to work plan they would be prepared to allow .. i'd hate to give up work just yet but i guess if i'm going to do this i need to do it before i get much older. what age were you when you had yours done? that must have hurt selling the business you had grown
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  #6  
Old 9th July 2014, 05:57 PM
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tonibunny tonibunny is offline
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Default Re: Older people and Scoliosis surgery

As Paul is probably aware, Spinal Stenosis is where the bone around the spinal cord becomes tightly encased around the cord, squashing it and leading to neuro issues. A decompression removes some bone to unsquish things. I believe Ali and possibly Titch have had this done in the past.

Good luck to you Paul!
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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.
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Old 9th July 2014, 06:09 PM
Paul Baker Paul Baker is offline
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Default Re: Older people and Scoliosis surgery

thanks Toni .. i'd be interested if others had this done as a 'standalone' or if it was done with curve straightening surgery and what the results were?
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  #8  
Old 9th July 2014, 06:27 PM
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Default Re: Older people and Scoliosis surgery

I know it is often done as a standalone surgery, as it's also seen in people without spinal deformities. I'm unsure whether our members here had it done as a standalone though - hopefully they will chime in soon
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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.
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  #9  
Old 9th July 2014, 07:25 PM
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GillyG GillyG is offline
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Default Re: Older people and Scoliosis surgery

Hi Paul

I haven't had any problems with stenosis or neuromuscular issues, but I did have surgery on an 80 degree curve at age 49. I had a few problems with one area refusing to fuse, but hopefully that is all sorted now and my quality of life at 57 is 100 times better than it was at 47!
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  #10  
Old 9th July 2014, 08:51 PM
countrygirl countrygirl is offline
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Default Re: Older people and Scoliosis surgery

Hi Paul
I had similar curve degrees to you and also kyphosis about 80 degrees. I have neuromuscular problems with weakness and sensory loss in 1 leg secondary to spina bifida.

I have had surgery...first spinal detethering then 5 months later scoliosis fusion (anterior and posterior) but in one operation. I am now 14 months post fusion and like Ed said it does take time to recover. Functionally I am near back to where I was pre op walking with one crutch. Had 9 months of work after the fusion. My morning pain is significantly better than pre-op...still getting muscle fatigue at the end of the day so feel there is progress still to be made.

Now I am the other side of surgery I am glad I had it done - it was high risk because of the neurological issues but I came through it all fine! I can't help you with the stenosis questions as this was never an issue for me. it might be worth getting a second opinion if there are uncertainties.
emma
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  #11  
Old 10th July 2014, 01:03 AM
MOB MOB is offline
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Default Re: Older people and Scoliosis surgery

Hi Paul, I had revision surgery in 2010 I had decompression an osteotomy and fusion extended am doing really well am fused T3 to Pelvis.
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Old 10th July 2014, 04:45 AM
Rod Stewart Rod Stewart is offline
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Default Re: Older people and Scoliosis surgery

Quote:
Originally Posted by Paul Baker View Post
i'm trying to get a handle on what else could go wrong.. did you get a 'list' of possible complications? i guess a gall bladder is not a major issue in balance with the pain relief?
Gall bladder removal (Cholecystecomy) is a walk in the park. It’s the most popular surgery in North America. I believe its around 500,000 per year, 10,000 per week. I guess it just evolved from back in the old days when we used to hunt and barbeque dinosaur Fred Flintstone style. LOL. My surgeon told me I could eat anything I want in “moderation” That’s the main problem, the moderation part. I do like to eat.

There are surgical books that are 500 pages thick filled with spinal complications. Most are extremely rare....Its impossible to know all of them, and its fruitless to worry about them because there are so many. Its like worrying about when your house is going to be struck by lighting. If that happens someday, its nice to know about it. We have to go in with horse blinders on, looking straight ahead, staying focused on the goal, and deal with problems “if” they arise. Here in the US, we have to sign complication waivers. This usually happens right before surgery, and is one of the last things brought up. Its good to know what we stand up against since no matter how good your surgeon is, things happen, the human body is extremely, extremely, complex......Having faith is needed.

I was 49 years old....and yes, selling my business was hard. I quit my job in 1997 due to substandard insurance. If you need really expensive surgery in the US, you need really good insurance because surgeons like to know how they are getting paid....I also needed multiple surgeons and that’s not cheap. My hospital bill alone was $785K. I didn’t see all the surgeons bills....

I started the business because of my scoliosis. I knew that someday, I would need scoliosis surgery since every single doctor told me so, and my non-scoli trained orthopedic many years ago simply shook his head speechless for several minutes....Most doctors that are not trained in deformity have respect for what’s involved. I have shot x-rays for other reasons and the docs always ask “Who did that surgery” “Wow!” Its one of the longer ones....but Linda Racine from the National Scoliosis Foundation knows several fused from the skull to the pelvis.

The selling of the business was or is part of change. Things change in our lives. We have high points and we have low points but it seems that it all works out in the end. My surgeries were my #1 priority.....it became my #1 goal. I was barely walking at the end. My methods of pain control were not working anymore...

Do you have any x-rays you could post here? Side or sagittal views are equally important.

I do still ski...Here is my video, I’m in the red jacket. Things are good. This is Donner summit, California.
http://www.youtube.com/watch?v=4tEypv3Vz8o&feature=plcp

Ed
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  #13  
Old 10th July 2014, 04:19 PM
Paul Baker Paul Baker is offline
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Default Re: Older people and Scoliosis surgery

Hi all thanks for the replies! Good to know people have been through similar things to what faces me!

Gall bladders sound a bit like the Appendix ... if I go and have the op I'd rather like to hang onto all useful bits though!

Sounds like its a bit of a leap of faith to a degree? .. 'muck or nettles'! I don't get a sense of whats the worst that can happen assuming a good surgeon .. feels like most of it will have the wanted results with a few issues like blood transfusions, rods not fusing to consider .. struggling to see how age impacts on these risks? If rods don't fuse .. what happens... do they remove them? re-do it? ... million questions ...

I don't have any of my own x-rays .. the NHS seem to hang onto your personal info and not really sure how you retrieve them? Would love copies of x-rays, MRIs. CAT's and bone density images

Did anyone keep a diary of the types of issues you faced during recovery? Progression day by day, month by month? I'm assuming wheelchairs and crutches are needed for a while? After the wounds heel does the new back still hurt .. at what stage did you revert to lesser pain meds and stop them altogether? Did you have daily physio at hospital with a specialist for a while? How long after your op did this start and how long did it last for? (in the Uk I've tended to find physios are keen to move you off their caseload very quickly) did they give you good exercises programmes for home use?
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Old 11th July 2014, 12:04 AM
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Default Re: Older people and Scoliosis surgery

Hi Paul,

Regarding 'rods fusing' its not the rods that fuse. The bine that's harvested (or artificial bone) is ground down and put in between the vertebra to fuse. The rods are screwed to your straightened up spine and act as a kind of scaffolding while the fusion process is happening, the rods are no longer needed after your spine is fused but if they cause problems they can be removed.

I had my surgery 3 years, 8 months ago when I was almost 45. I also had a costoplasty-8 ribs were chipped into and reshaped so I no longer have my rib hump which is amazing My recovery has been long and I still have pain issues which my surgeon believes is because I have some protruding screws. I've been offered removal but I've heard of people recurving quite badly, there's no guarantees as to how solid your fusion is. I had awful pain before surgery and I'm learning to live with this too.

I was never offered a wheelchair or crutches and as far as I know they don't do this. You have to learn to walk properly with your new posture so any aids would hinder that. The physio's in hospital make sure you can log roll and walk the stairs before going home. My surgeon doesn't believe physio is necessary but I wanted to strengthen my lower back so I had hydrotherapy which helped a lot.
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Old 11th July 2014, 11:00 AM
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GillyG GillyG is offline
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Default Re: Older people and Scoliosis surgery

If there is an area of pseudarthrosis (non-union) and the rods break then they can go in and repair/replace them and it's nothing like the original op in terms of pain and recovery. There's no reason why you would need a wheelchair or crutches, unless you have some unusual underlying condition which necessitates this. They have you up and walking around the ward with a few days! The main issue with having the surgery later in life is that, generally speaking, the body isn't as quick to heal so the recovery takes longer than for kids who are usually back at school within a few weeks! Also, the spine has often become very stiff which makes the surgery itself more demanding for the surgeon and the toll on the body greater.

ETA: meant to say, you can request copies of all your X-rays, notes, MRI etc by contacting the hospital. They can't refuse you and the most they can charge is £50, no matter how much you ask for. Well worth it in my opinion as notes etc have a habit of going missing...
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