Fusion T1-L5

[sonjes]

I had my surgery in 1985 when I was 13 years old. My fusion starts at T1 and ends at L5 (S1). It is supported by a Harrington rod. My fusion hasn't given me too many problems until late.

I have been having really bad headaches and pain at the base of my skull. I found out a couple of weeks ago that my curve has progressed into the Cervical segments. This new curve is little by little causing my head to protrude forward.

My doctor says that he will not do anything until it starts to effect my mobility. I worry that this will be too late though. I, as many of you I'm sure, suffered through the surgery just to have to face it again.

It seems that when the doctor told me at the age of 13 that I could be on an iron lung within a year and dead within two or that I could have surgery, it wasn't that difficult to understand. Now, it scares me to think that this will cause even more problems for me. I just get tired of it. You know.?

Can anyone help me with this. Do you know anyone that this has happened to? Please let me know.

Thank you,
Sonja

[nzgirl]

I wish you well, considering a re-op is a scary prospect. Fortunately, the techniques which they use now are so much better than when you had your original surgery. I hope you have lots of support and can let people know how your feeling, and use the forum! The folks here are friendly, and are part of a rare breed that understand much of what you will be experiencing, although everyone is different.

I am in a slightly similar position, in that I have had a curve progression above the original surgery, although mine was only done 6 years ago and in the thoroco lumbar region. I have made the decision to have a re-op because the curve has progressed significanlty over the last few years (read my numbers below). I don't know (and noone knows) if it will progress further, and I am doing ok generally but have chronic but manageable pain. I decided to go for a re-op because I thought that I didnt' want to wait and see because my spine may become un-balanced, and if it progresses more it makes for a more difficult op. This is purely my experience, so understand it for what it is. Given that you are experiencing headaches, it sounds like the progression is causing you discomfort. If you arn't happy with the advice you have recieved, get a second opinion. It sounds like you have a good knowledge of why you should consider doing so.

All the best!

[rainbow2010]

I was told that if I didn't have my surgery I would be dead by age 30. I had a friend who did not have the surgery and died in his late 20s. That made the decision back then very easy! Knowing that things have changed over the years makes you wonder why the doctor wants to wait. Are you seeing a doctor that deals with adult scoliosis patients? I had to search until I found one. My original doctor had retired when I needed help with additional problems. My daughter's doctor just retired also. At least if she developed problems, I know I can take her to my new doctor who works with patients who have had fusions already.

[CHRIS WBS]

I shudder to think how many surgeries I could have undergone by now if some half-witted alarmist surgeon convinced my parents back in the 60s when I was an adolescent that if I did not have surgery I would be dead or in a wheelchair by the time I’m 30. Instead I’ve had a completely pain-free normal life. I’m nearing 60 and I do have arthritis in my spine now but then a lot of people my age live with arthritis. I seriously doubt that people die from scoliosis unless it is the extreme type that is seen in third world countries (the type that Dr. Boachie and his FOCUS team treat) attributed to diseases that have been eradicated in this country.

Sonja, in 1985 when you were 13 I think the iron lung was already relegated to a metal srap heap.

Rainbow, are you sure your twenty something friend did not die from something else?

Chris

[rainbow2010]

Very positive my friend died due to his organs being crushed. He had an s-shaped curve and it progressed to the point of putting too much pressure on his heart and lungs. The lower part progressed faster. It was sad because at the time we were near one of the major research hospitals that was working on scoliosis.