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Camilynns
01-06-2014, 06:21 PM
Hey guys,

So I have a few questions and was hoping some of you could help! So I am 13 years out of my surgery and have some questions. I don't know if this is the right forum to put it on but here goes nothing. I had surgery a while ago and now I am looking to my future. I do not have much pain right now.

I am very scared as to what my life is going to look like when I am 70, 80 years old. Is there any way I am going to be able to walk? Or live without pain?Everything that I had read has been of people having pain and ending up disabled. This is something I want to avoid at all costs. I am a very active person. I love doing anything outdoors and want to continue to do this.

Please help with some positive outcomes. Please and Thank You. :)

Pooka1
01-06-2014, 07:35 PM
Hey guys,

So I have a few questions and was hoping some of you could help! So I am 13 years out of my surgery and have some questions. I don't know if this is the right forum to put it on but here goes nothing. I had surgery a while ago and now I am looking to my future. I do not have much pain right now.

I am very scared as to what my life is going to look like when I am 70, 80 years old. Is there any way I am going to be able to walk? Or live without pain?Everything that I had read has been of people having pain and ending up disabled. This is something I want to avoid at all costs. I am a very active person. I love doing anything outdoors and want to continue to do this.

Please help with some positive outcomes. Please and Thank You. :)

Hi and welcome.

Where did you get the idea you might not be able to walk at any point or that you will have pain and be disabled? Did a chiropractor tell you that? Ignore chiros. Just deal with experienced surgeons.

titaniumed
01-06-2014, 08:45 PM
No, no, no.....Camilynns, you shouldn’t think that way! Never expect or assume the worst. Worrying about things like this are not worth it. Knowing and worrying are two different things. Override the negatives with positives.

Life is about having fun.....I have always loved life and always did everything I wanted to do... with twin 70 degree curves or with a T2-pelvic fusion along with 2 herniated cervical discs. I don’t worry about fusing my neck, I worry about how much fun I can have as soon as I can. I hope this makes sense.....

Do you remember what levels they fused?

Welcome to the forum...Ask any questions you like.

Ed

Camilynns
01-06-2014, 09:49 PM
No, no, no.....Camilynns, you shouldn’t think that way! Never expect or assume the worst. Worrying about things like this are not worth it. Knowing and worrying are two different things. Override the negatives with positives.

Life is about having fun.....I have always loved life and always did everything I wanted to do... with twin 70 degree curves or with a T2-pelvic fusion along with 2 herniated cervical discs. I don’t worry about fusing my neck, I worry about how much fun I can have as soon as I can. I hope this makes sense.....

Do you remember what levels they fused?

Welcome to the forum...Ask any questions you like.

Ed

I have all levels fused from C1 to pelvis. Scar from the tip of my back all the way down to pelvis. I have just read so many stories and it scares me so much. Thank You I cant ever really talk to anyone about this.

What does twin 70 degree curves mean? And when did you have surgery and how old are you? I have just never heard a story like mine.

Camilynns
01-06-2014, 09:51 PM
Hi and welcome.

Where did you get the idea you might not be able to walk at any point or that you will have pain and be disabled? Did a chiropractor tell you that? Ignore chiros. Just deal with experienced surgeons.

I have just read so many scary stories and want to live a full body abled life :/

Pooka1
01-06-2014, 10:04 PM
I have just read so many scary stories and want to live a full body abled life :/

Where did you read these stories?

Are you fused from the top of your neck to your pelvis or the top of your back (T1) to your pelvis?

If you have a solid fusion, does your surgeon expect anything to change? I don't see how it could. People with full fusions are the few people who will escape degenerative disc disease with is inevitable if you live long enough. So you might have LESS pain than non-scoliotic people, about 85% of whom have back pain so bad at some point in their life that they are driven to a doctor. So not having scoliosis or a fusion is no guarantee of having no pain in the out years.

Camilynns
01-06-2014, 10:22 PM
Where did you read these stories?

Are you fused from the top of your neck to your pelvis or the top of your back (T1) to your pelvis?

If you have a solid fusion, does your surgeon expect anything to change? I don't see how it could. People with full fusions are the few people who will escape degenerative disc disease with is inevitable if you live long enough. So you might have LESS pain than non-scoliotic people, about 85% of whom have back pain so bad at some point in their life that they are driven to a doctor. So not having scoliosis or a fusion is no guarantee of having no pain in the out years.



I am fused from the top of my back. so T1 I guess, I have tried to get information from my doctors but it has been so long ago I do not even know how to find it. But no I don't think anything is expected to change I have just read random stories online. But I was so young, I dont remember half of what my doctor told me. I already have not been able to do things I want in life like skydiving, rugby, and others bc of this I just dont want to end up having chronic pain bc of this. The scoliosis was not genetic supposedly but my youngest sister also had to go through with this. I also think about if I want kids one day how this is going to affect me.

titaniumed
01-06-2014, 10:25 PM
I had a 70 degree thoracic curve and a 70 degree lumbar curve. A perfect S curve.

I had my surgeries in January 2008 when I was 49. I’m now 55 and feel like I’m 39. You realize that I DO get around 5 years at age 39 don’t you? (smiley face) Many full fusion scoli’s coming out of the woodwork these days because of these forums. I was diagnosed 40 years ago. Its good to see you posting.

You can talk to any of us here, this is a scoliosis forum. SOS is a great scoliosis forum also, I post there as “Rod Stewart” since Jose Cuervo was taken. You can also PM any of us if you want to chat in private.

Did you have this very impressive surgery done at age 13? Where was it done? and who did it? Would love to see your x-rays.

We do have the advantage of not having to worry about our discs failing in our fusions. We will never have to deal with this anymore.

Ed

Camilynns
01-06-2014, 10:55 PM
I had a 70 degree thoracic curve and a 70 degree lumbar curve. A perfect S curve.

I had my surgeries in January 2008 when I was 49. I’m now 55 and feel like I’m 39. You realize that I DO get around 5 years at age 39 don’t you? (smiley face) Many full fusion scoli’s coming out of the woodwork these days because of these forums. I was diagnosed 40 years ago. Its good to see you posting.

You can talk to any of us here, this is a scoliosis forum. SOS is a great scoliosis forum also, I post there as “Rod Stewart” since Jose Cuervo was taken. You can also PM any of us if you want to chat in private.

Did you have this very impressive surgery done at age 13? Where was it done? and who did it? Would love to see your x-rays.

We do have the advantage of not having to worry about our discs failing in our fusions. We will never have to deal with this anymore.

Ed

Well I didn't know they existed but I called my mom freaking out about a year ago and she cannot really do anything to help, except try and tell me everything is going to be okay. But I was very similar I think mine was at 76 degrees and reduced to below 30 I think. I didnt know really what to post on but did on this one bc I had the surgery when I was an adolescent.

It was done in St Louis in Shriners hospital by Dr. Bird his name was. Do you think I will be able to walk my whole life? I am trying to track down my xray. Hopefully within the next week I can get them.

Resilience
01-06-2014, 11:35 PM
I'd bet you can get your medical records from Shriners. Call the main number and ask for Medical Records. I was able to get my records from Philadelphia Shriners and I was a patient there in the 70s. I believe they mailed me a release form to sign and send back and there was a nominal fee, a few dollars. I didn't receive the actual X Rays but I did get copies of the office visit notes with the doctor's measurements and plan etc. Helped me to fill in the blanks.

Welcome to the forum.

Pooka1
01-06-2014, 11:44 PM
Do you think I will be able to walk my whole life?

When is the last time you saw a surgeon? I understand there is no real reason unless you have pain so it may be a long time.

But you are clearly concerned about this issue of walking. I have never seen a testimonial with a successful full fusion suddenly developing problems like that. If you had unfused vertebra at the bottom, yes, you might expect problems down the road But no unfused vertebrae? Unless you are in a car accident or something like that, I am not clear on why you expect anything to change from now. Can you point us to the scary stories you read? I am guessing they are on a chiro site. Chiros have no expertise in dealing with scoliosis.

I think you should consider doing yourself a favor and booking a consult with a surgeon about this. Get a new x-ray and ask the surgeon if there is any reason whatsoever to suspect you will have trouble walking at any point. I think that would put your mind at ease.

Good luck.

Camilynns
01-07-2014, 12:05 AM
I'd bet you can get your medical records from Shriners. Call the main number and ask for Medical Records. I was able to get my records from Philadelphia Shriners and I was a patient there in the 70s. I believe they mailed me a release form to sign and send back and there was a nominal fee, a few dollars. I didn't receive the actual X Rays but I did get copies of the office visit notes with the doctor's measurements and plan etc. Helped me to fill in the blanks.

Welcome to the forum.


That was my plan. It just has not been priority bc I have so much else on my mind. Thank you. Did you have surgery when you were young? How are you doing now?

Camilynns
01-07-2014, 01:20 AM
When is the last time you saw a surgeon? I understand there is no real reason unless you have pain so it may be a long time.

But you are clearly concerned about this issue of walking. I have never seen a testimonial with a successful full fusion suddenly developing problems like that. If you had unfused vertebra at the bottom, yes, you might expect problems down the road But no unfused vertebrae? Unless you are in a car accident or something like that, I am not clear on why you expect anything to change from now. Can you point us to the scary stories you read? I am guessing they are on a chiro site. Chiros have no expertise in dealing with scoliosis.

I think you should consider doing yourself a favor and booking a consult with a surgeon about this. Get a new x-ray and ask the surgeon if there is any reason whatsoever to suspect you will have trouble walking at any point. I think that would put your mind at ease.

Good luck.


I haven't seen one since I was 14. I read it a few years back and haven't looked back since. I did not realize the difference b/t full fusion and the other surgerys and maybe thats what I was looking at. I am not sure if I had unfused vertebrate at all. I don't know why I would think I think things are going to change.

I think your right, I need to. I am just a college student and don't have that great of insurance Thank You. :)

Pooka1
01-07-2014, 10:08 AM
Are you sure you are fused from T1 to S1?

It's easy to get the impression that they are reluctant to fuse a young person to S1. And maybe especially so since your fusion starts at T1.

Do you know what kind of scoliosis you had? Was it idiopathic or congenital? Were you first diagnosed younger than 10?

Resilience
01-07-2014, 02:45 PM
That was my plan. It just has not been priority bc I have so much else on my mind. Thank you. Did you have surgery when you were young? How are you doing now?

I have never had surgery, just bracing. My curves ended at about 27 degrees each when my Shriner's records ended at age 20. As you can see from my signature they have increased a bit over the past 28 years. I do have pain from time to time but have learned how to handle it. I am very active: I bike, hike, swim and do pilates.

Knowledge is power. Good for you for looking into this for yourself.

Camilynns
01-07-2014, 05:01 PM
Are you sure you are fused from T1 to S1?

It's easy to get the impression that they are reluctant to fuse a young person to S1. And maybe especially so since your fusion starts at T1.

Do you know what kind of scoliosis you had? Was it idiopathic or congenital? Were you first diagnosed younger than 10?


I do not know what kind it was, and no I was diagnosed at age 12. It was so bad I had to get surgery within the next year. I know my spine was at a 76 degree angle before I had the surgery.

rohrer01
01-07-2014, 05:39 PM
Camilynns,

Welcome. I have not had surgery, but am an adult living with slowly progressing curves and pain.
If your fusion is what you say it is, I don't see why you would develop pain. Are you in pain now?
If you are in good health, I don't see why this would stop you from having kids when the time comes. It would most likely prevent you from being able to have an epidural for labor pain management. You would have to talk to your OB/GYN about a C-section or vaginal delivery depending on if you have iliac screws. But you shouldn't let that scare you, either. Some of us that aren't fused have ended up having C-sections. Healthy baby is the outcome you want. I would also mention it to the pediatrician since you AND your sister were both fused. That way your child/ren could be watched. There's so much that they don't know about heredity and scoliosis.

Final advice: If you are that concerned over future pain, I would take Pooka1's suggestion and go see a surgeon for an x-ray and a check-up. It would be good to do anyway since you haven't seen anyone for 12 years. My guess is that IF you are NOT having pain now and you truly are fused to the pelvis, I wouldn't expect any problems. If you aren't fused to the pelvis OR are having pain, it would be a good idea to see what's happening in there just to check it out.

I think most of us are limited to some degree (excluding Titanium Ed). That just comes with the territory.

I have a daughter-in-law that is fused from like T2 to L1 or L2. She had her surgery at 16 years old and is 23 now. She is having some pain below her fusion. I think it's mostly hardware related where a long piece of rod was left and irritates the muscle. She also has some lower back pain once in awhile. She is very active, though. She went skiing the other day. She would never bungee jump or sky dive, but she does pretty much what she wants to do. She has some of the same anxieties that you do. Enjoy your life now. Old age brings pain no matter how healthy you are when you are young.

Take care. I'm glad you found us. It was a relief for me to find others to talk to, also. ;)

tonibunny
01-07-2014, 06:50 PM
Hi Camilynns, please try not to fret too much about the future. It may seem like all the adults who had surgery when they were teens are now having problems, but remember that there are also many adults out in the world who had surgery years ago and are absolutely fine. They aren't on this forum because they are out living their lives and have no need to belong to a scoliosis support website! Adults typically only join up here if they need help.

I've always been very active and outdoorsy myself and my spine has never really stopped me from doing anything I want to do. I have had scoliosis since I was a baby and I had my first surgeries at the age of ten - I'm now fused t1-l4. A good friend of mine with the same length fusion is super-active, she actually does go skydiving and bungee jumping! I don't think that is really advisable but it hasn't done her any harm! I totally agree with Ed, life is for living and enjoying *smile*