Need Advice

[leviwood]

Hi,
I am new to the forum and would love any advice that I can get. My mother has struggled with scoliosis her entire life. She is now 52 years old and on the verge hof planning her surgery. Her curvature is about 65 degrees at this point and her specialist claims that it has increased 8 degrees in just two years. After all this time she has decided that it is necessary to have the spinal cord fusion surgery. In my attempt to get as much information for her as possible I have been looking at forums for information about people her age who have had this surgery. What I have found has been unsettling. It seems that everyone has had bad experiences and that one surgery never seems to cut it. I am hearing lots of stories of multiple surgeries, broken rods, and extreme pain. I don't know how to advise my my mother to proceed. I would greatly appreciate any advice or personal stories that people could provide me with. Thank you so much to anyone who can help

[crookedspine]

Keep looking at the forum! You will find many our age who have had the surgery and it has been successful! I am 48 years old, and I had my surgery early November, 2005. It was the best thing I ever did! I had increasing pain, especially the past two years, and it was affecting me big time. I was unable to do much after work except sit and hurt. Since the surgery, the pain is almost non-existent! There are many success stories out there. I know, because I researched this forum and other avenues to find the best action to take. Good luck! Your mother is very blessed to have you! Linda

[leviwood]

Thank you so much. It is great to know that someone has been pleased with their results. If you don't mind me asking where was your surgery done, and how bad was your curvature before the surgery? Thanks again for your help, I know my mother will be glad to here it.

[Shari]

Hi Leviwood,

I agree with Linda that your mother is blessed to have you for a daughter. I think she is also blessed with the technology that's out there to help those of us with scoliosis.

Yes, there are risks involved with deciding to have surgery. But I think we take risks with every major decision we make in our lives. I was told, by many Dr.'s, that the odds of me ending up in a wheelchair, by the age of 50 was extremely high. I am almost 46 now. For me, it was better to walk around with metal in my back, as opposed to riding on 4 wheels for the rest of my life.

There are some unfortunate outcomes. But as Linda said, you must read on!!!
There are many inspirational outcomes as well. Before I had my surgery, I read all the bad things that could happen too. But as I learned more about it, I found that the technology just keeps getting better and better. And of course, you must find an adult scoliosis specialist that you like, and most of all trust. I personally wanted one that performed the surgery more than once a month!!!

There are several "Blogs" on this forum that you really should read! They are enlightening and encouraging. Maybe they will put their "links" up for you.
Whatever your mother decides to do, she is going to need your support, and it's obvious you will be there for her. She's a lucky woman!

Best Wishes for the both of you,
Shari

[crookedspine]

I, too, was told that in the "not too far future" I would be on morphine for the rest of my life. That was not an option to me. I had my surgery performed in Boston, MA, by Dr. Paul Glazer. He has performed my type of scoliosis surgery at least 2-3 times per month. I don't know where you live (or where your mother lives). However, I live in Texas and found that he was the best for me. My insurance (after several months of sending letters and forms, etc.) approved my surgery in another state.

By the way, my curvature was lumbar and it was "only" about 35 or so. However, I also had degenerative disc disease and osteoperosis.

I agree with Shari, also. Keep up the research. Look for a doctor that performs your mother's particular type of surgery often. Good luck to both of you! Linda

[leviwood]

Thank you both for being so kind and so helpful. Since you have both had the surgery, I hope you don't mind me asking about your mobility. My mother is the most aactive person imaginable. She goes to the gym every day and rarely sits around the house. She is very concerned about not being able to do these things for a long period of time. How long was it before you were really able to get up and move around? My mother has been to several specialists at this point, but only in the Washington DC area where we live. I am hearing from a lot of people that going out of state to get the right Dr. may can be the best route to take. Thank you both again for being so kind.

Jackie

[crookedspine]

I have never been very mobile because my scoliosis, although less than others, did not allow me to do a lot of activities. I was post-surgery about 1 month before I did things like make a small snack or breakfast for myself. I am still (3-1/2 months post-op) not able to bend a lot without my brace. However, I was not able to bend a lot before my surgery either. Therefore, I can't be much help to you. Just remind your mother to not do too much too fast. It can make a longer recovery time. Linda

[Shari]

Hi Jackie,

I think that once you reach the point of needing to have surgery, you must find the right Dr. At first I tried local Dr.'s. I kept having my family physican refer me to different Dr.'s in my tri-state area. I eventually ended up in The Cleveland Clinic.

I too was very active, athletic and hard working. I think for me that was a deciding factor for the surgery. I still wanted to be active in my years to come. It's very hard to give you a definitive answer to any of your questions, as everyone here will agree, we are all different. I personally feel that I am having a slow recovery time. My Dr. told me that I would hate him for the first 3 months and that I could take 6 months to a year to recover. They say "could" because they don't know either! Of course I thought I would be back to work after 3 months. When I think about that now, I just smile.

At first I gauged my recovery from month to month, now it's week to week and even day to day.

This forum is the right place to ask questions, look for support, share experiences and express fears. But, as you will read over and over again here, we are all different and you can not compare one recovery to another.

Shari

[Singer]

long-distance surgery?

Linda and Shari, I'm wondering how you managed the logistics of having your surgery in another state. How did you get home??? And how long did it take for you to be well enough to travel? I'm also wondering how you managed the pre-op appointments -- did you have to travel back and forth?
I have an appointment with a spine doctor in Philly this coming week, but if he recommends surgery and I don't feel comfortable with anyone local, I'm willing to travel if I can manage it.

I shovelled snow this past week and just about did myself in. Also, I've been very discouraged because I've been unable to sit and watch my daughter play basketball because I just can't tolerate sitting in the bleachers. This is the first year my back has kept me from doing things I want to do.....

[lelc2002@yahoo]

singer--- are you close to NYC?? possibly you could try Dr, Boachie???Lynne
http://lynnebackattack.blogspot.com surgery this Aug.

[leviwood]

Thanks you Shari and Linda again. I have told my mother about the forum and helpful you guys have been. I am sure that she will be on here soon. I think it would be really good for her to talk to people who can support her. I hope it is ok if I give her your names to talk to. You have both been so nice.

[Singer]

Lynne, I'm not too far from NYC but am I correct in hearing that Dr. Boachie doesn't take insurance of any kind?

[lelc2002@yahoo]

singer,
what is your insurance--if ppo than you probably could go there. Most of these guys are out of network.

[crookedspine]

Singer, Dr. Glazer was able to allow another doctor here in San Antonio to do the pre-op tests, and I had one appt in Boston the Thursday before surgery. So I only had one trip. The first post-op appt was made two days before I came home. I flew home. The rehab place (Coolidge House in Boston) wrote a letter for the airlines. The first leg of my trip, they upgraded (without fee) me to first class because of the letter. I had more room to stretch out a little. The second leg, I was in coach and more uncomfortable. It was not an easy trip home, and I still had an hour drive from the airport, but I took more pain pills than normal (the doctor told my husband exactly how many to take and when), and that made it bearable. Linda

[csbaby]

Replied to your post in the surgical (revision) section.

Hi Leviwood,

I see you have been getting lots of advice today and that's wonderful. Don't know if you saw my other post / life story, because I replied to it in the revision thread instead of this thread. I hope you get a chance to read it as it contains a lot of detail.

I also saw that you said your Mom is very active now. She should be able to be active after the surgery as well. Before I left the rehab hospital I was walking over a mile in the "tunnels". I walked alot. And still do. And even though I am still having some issues, I consider myself a success story in action. I will be well. It's just taking a little bit to get there.

Again, best of luck to you and your Mom. I am lucky in that I have my Mom to help me.

Christy