Severe Scoliosis at 61, looking to interview surgeons in Orange County CA

[kokapellis]

I have 2 curves both over 90 degrees as I was told they would not progress, WRONG. I have nerve pain in my leg and cannot
stand or walk for long periods of time.

I am told that the curve will continue to progress by one DR I have seen.

Totally scared of surgery, and scared if I don't have it.

1. First if anyone has anything like I have
2. If anyone can recommend a WONDERFUL surgeon due to my very severe case

[mabeckoff]

I think that you should visit Dr Bederman at UCI . He is a wonderful surgeon as well as being a great person

[kokapellis]

Dr. Bederman

I have seen Dr. Bederman yes he is very nice.

May I ask what type of curve you had, and why are you having so many surgeries?
Please do not take offense to my questions, but I am just learing about all this surgery
stuff.

Also may I ask your approximate age, like over 50 over 60, under 50, 40 etc.

[susancook]

Researching a doctor or other matter on the forum

Just some info about the forum: If you find a doctor that you are interested in seeing, maybe like Dr. Bederman, type in his name, just type in Bederman, do not put the Dr. in front of his name. Then every blog entry that mentions his name will come up and you can read what somebody has done with him or their comments about his care. I didn't know about that feature for a month or so after using the forum, and found it helpful when researching something.

Welcome to the forum and best of luck and I know that you will find a doctor that your have confidence in. Ask LOTS of questions. Keep a notebook where you write down your questions as they come to you, sometimes I think of a question at the supermarket and I write it down in a small notebook that I carry w/ me and transcribe it to the big notebook that I have that I take to all scoliosis doctor's, physical therapist, and pain control MD offices that I see. That way when you go to see the doctor, you are organized and you can write down the answers and keep the information. When you go to a doctor's office, research shows that you hear about 20% or less of what he/she says, so write it down. I suggest that you also bring along a friend or partner to listen also.

I will start a thread about what questions one should ask a doctor when considering that person to be your surgeon. That will help me also as I have not had surgery, but will probably be intervewing surgeons sometime in the future.

Susan

[JenniferG]

I have 2 curves both over 90 degrees as I was told they would not progress, WRONG. I have nerve pain in my leg and cannot
stand or walk for long periods of time.

I am told that the curve will continue to progress by one DR I have seen.

Totally scared of surgery, and scared if I don't have it.

1. First if anyone has anything like I have
2. If anyone can recommend a WONDERFUL surgeon due to my very severe case

I'm in Australia so can't help with the surgeon though I know lots of members will suggest their surgeons because there are many great surgeons to choose from. Also, there are many here who had worse curves than me, but I really just wanted to say, we are all scared to face this surgery. I was terrified. Initially I couldn't even imagine having it. I cancelled my first date but by the time I had surgery, I had all my questions answered, mostly here, and I had a better picture of what would be happening and I had no nasty surprises. I went into surgery without terrible nerves, just eager to get it over with and get on with my life. So as has been said, ask questions, anything that pops into your head. This will help. We all completely understand the fear. Welcome!

[golfnut]

Welcome to the forum. As Jennifer said, we were all terrified, but most have been glad they had the surgery. You might want to start a similar thread in the Surgery First Time instead of the Revision section. I was fortunate to have one of the best surgeons (Dr. Lenke) within 30 miles of our house, so I didn't seek another or even get a second opinion.

[Pooka1]

I have 2 curves both over 90 degrees as I was told they would not progress, WRONG. I have nerve pain in my leg and cannot
stand or walk for long periods of time.

I am told that the curve will continue to progress by one DR I have seen.

Totally scared of surgery, and scared if I don't have it.

1. First if anyone has anything like I have
2. If anyone can recommend a WONDERFUL surgeon due to my very severe case

Hi and welcome.

Can I just ask how big your curves were when you were told they would not progress?

Many people were told that and I think more recent studies have revealed a better idea of whether or not progression can be expected. The best information out there now is that 30* or lower is generally thought to be protective against progression to surgery range in a lifetime. That doesn't consider collapses though, either in the structural curve or the compensatory curve which are true wildcards it seems.

On the other hand, we have people whose curves were about 30* and south of there who nevertheless progressed to surgery range. That would not be expected but anything can happen it seems with scoliosis.

Good luck.