Spinal Fusion is 48 Years old - Looking for others like me

[tesh]

Hello,

I was born in 1959 with numerous congenital birth defects including severe spinal scoliosis (don't know the degree). At age five (1964) I had what I was told a "total fusion" of the spine. Only the last three lumbar disks were not fused. No rod was placed. The surgery was done at Children's Hospital in San Francisco through the Shriners.

I have had a fairly normal childhood & adult life that has been relatively pain free. I am wondering if there is anyone out there that has had a similar experience? What can I expect as I grow older? Is my spine & experiences worthy of research? Is there an Los Angeles orthopedic doctor that specializes in spinal fusions like mine?

Thomas Hamlett

[titaniumed]

Tom

There are not too many cast scoli’s left but there are a few here. If they don’t chime in, I will PM them for you.

There are good surgeons in LA.... Do you feel like you need to see one?

Welcome to the forum
Ed

[JenniferG]

Hello,

I was born in 1959 with numerous congenital birth defects including severe spinal scoliosis (don't know the degree). At age five (1964) I had what I was told a "total fusion" of the spine. Only the last three lumbar disks were not fused. No rod was placed. The surgery was done at Children's Hospital in San Francisco through the Shriners.

I have had a fairly normal childhood & adult life that has been relatively pain free. I am wondering if there is anyone out there that has had a similar experience? What can I expect as I grow older? Is my spine & experiences worthy of research? Is there an Los Angeles orthopedic doctor that specializes in spinal fusions like mine?

Thomas Hamlett

You have a very interesting story Thomas. We have a lady here in Australia on the forum, Lorraine, who's in her sixties I think and, I think, had a similar experience to you. She's an irregular visitor on the forum, I'll see if I can drop her a line.

[tesh]

More curious

Tom

There are not too many cast scoli’s left but there are a few here. If they don’t chime in, I will PM them for you.

There are good surgeons in LA.... Do you feel like you need to see one?

Welcome to the forum
Ed

Having more aches & pains, not sure if it is age or the fusion starting to deteriorate. What is a cast scoli?

[JenniferG]

Having more aches & pains, not sure if it is age or the fusion starting to deteriorate. What is a cast scoli?

Tesh, were you put into a plaster cast after your surgery? I believe that was the way it was done in those days, in the absence of rods to hold the spine still and solid while fusing. I think that's what Ed means.

I PM'd Lorraine but no answer. The forum used to email PM recipients when a message was in their inbox but that doesn't happen any more, unfortunately.

I'm sure she will pop in again, eventually.

[tesh]

Fond memories of the Cast

Tesh, were you put into a plaster cast after your surgery? I believe that was the way it was done in those days, in the absence of rods to hold the spine still and solid while fusing. I think that's what Ed means.

I PM'd Lorraine but no answer. The forum used to email PM recipients when a message was in their inbox but that doesn't happen any more, unfortunately.

I'm sure she will pop in again, eventually.

Hehe...ahhh what fond memories...yes I was in a cast from my chin to my groin. It sure was itchy. First month or so couldn't walk & mom had to carry me, then dad made a board with coaster wheels that I got around on. When I did walk the cast's weight was almost as much as I was. Once I got a full head of steam going & couldn't stop, put my head through a glass bookcase (still have the scar). Another time I leaned back in a chair & went through a sliding glass door (almost gave the neighbor lady a heart attack). Both times they had to do the cast over. The memory of a six year old was that the adults were not happy. After the cast came off I had a body brace for I think another year.

[Susie*Bee]

Tom-- I have a friend, not on the forum, in her mid-sixties. She spent a year in a cast with no instrumentation when she was fourteen. Unfortunately, in the last 10 years (about) her back has gotten to the point of being crippling to her and causing continual pain. The fusion did not hold up over the years. I think her curves are over 100º and her bones are too brittle to work with. Be sure to keep yourself monitored to keep ahead of any problems. Best wishes.

[JenniferG]

Well, they must have done something right, for you to have not needed revision in 48 years! I think that's amazing. (This is what I was offered, age 13, but I refused.) I hope some cast members see your thread. It will be interesting for you and them, to talk!

[titaniumed]

Having more aches & pains, not sure if it is age or the fusion starting to deteriorate.

Its hard to say....there is no way of knowing where you stand as far as spine shape is concerned unless you have x-rays done. Even with a spine that was fused solid, the shape can change through a process called “bone remodeling”. It’s the same process that’s used in braces for teeth. I believe the cycles are 2 years. Apply a steady force on a bone and it will re-shape itself. Patients who had the “casting” method like yourself or have to have their rods removed for some reason need to be aware of this.
http://en.wikipedia.org/wiki/Bone_remodeling

Discs are another problem. Age related, DDD or degenerative disc disease is almost a given as we age. DDD can also lead to vertebral disease which happened to me.

If you have not seen a scoliosis surgeon in a long time, it would probably be a good idea to go for a visit. Remember that surgery is usually a last ditch effort, and that any qualified scoliosis surgeon would move slow and try all non-invasive measures to try to combat your pain. It should be a slow process, or probably better to say that it shouldn’t be a rush.

I like hot water for pain control. It really works well for bone and nerve pain. Its also very easy.

I’m hiking in Utah’s National parks. (National parking lots) It might be a while till I can reply, depends on internet access out in the boondocks.

Ed

[kennedy]

Thomas i just wasnt to say wow

[AndreaM]

I am 52 and had a rod and a cast. My rod was a single one, measuring about 12 inches and held with a hinge on top and bottom. I was then in a plaster cast for the next five months or so before being fitted with a removable brace. I stupidly bought a motorbike within weeks of the cast being removed and crashed it! This loosened the rod and it was removed a year after being inserted.

I have lost quite a bit of the original correction but realise it is probably due to not having the rod to keep it fixed. However, I don't get much back pain. I have other problems but that's another story!

I'm still glad I had the surgery and would recommend it to anyone whose spine is disfiguring them. I found the scar a lot easier to deal with than my distorted shape and difficulty with the fit of clothes.

I'm really pleased to hear that you have had such success over the years Tom.

[rohrer01]

Welcome to the forum, Tom.
I'm pretty sure that Karen Ocker had a cast fusion without instrumentation. She shows up frequently on the forum. You can PM her and ask her about it. I believe she eventually had revision surgery. I think she'd definitely be worth talking to about your case. You can type in her name and look up any relevant threads, also.

[jrnyc]

hi tesh
welcome to forum....
there are many good people on here....and much information available...

if you check the list that is in a section of this website, you will find
listings of surgeons by city/state....there are many top scoli
surgeons in L.A. the big cities tend to have more top doctors it seems....
i would recommend as others here have....to find a surgeon listed....
make an appt....get some X rays/MRI/CAT scan, etc...whatever surgeon
suggests....just to know what shape you are in now...literally...
go to Natl Scoliosis Foundation, click on Resources, then click on Orthopedic
Surgeons....find your state/city

i dealt with my scoli fine until i herniated discs....easy to do, as Ed said...
as people age, it is more likely to happen....my spine got worse once
the discs blew....as did the pain....
i see a pain management doctor for the pain....and have put off surgery,
though surgery has been recommended to me by the surgeons i've seen....

again, welcome...no one wants scoli, but if you do have it, forum is a good
place to find...

jess....& Sparky

[Karen Ocker]

I was a cast/uninstrumented scoli

I was 14 with a very severe curve which began age 11. We are talking 1956. Without hardware-not invented at that time- I gradually lost the correction and, at age 60, had a successful revision. That old fashioned operation enabled me to live a normal, full life. My revision was 10 years ago: I AM 70 AND STILL PAIN FREE.

[JenniferG]

That's a remarkable story, Karen!