View Full Version : Degenerative Scoliosis

09-20-2003, 06:27 AM
Glad we are back up and running, thanks!

If I can remember...... I posted a response to Bonnie's inquiry re: managing pain before surgery. And I wrote about how helpful physical therapy was for me in the 10 years prior to my surgery. The massage, ultra-sound and back-stabilization exercises all combined to relieve some of my back pain.

Then Barbara responded with a great point that you have to find the right physical therapist otherwise you could get hurt. That is so true! I was very lucky to find a PT who was very well versed in the spine (she also has mild scoliosis). I've worked with her for years.

I also know from personal experience that you need to be your own advocate because not all PT's and other care givers are created equal. When I was looking into pool therapy I actually called and "interviewed" a couple different therapists at different pools.


09-22-2003, 03:53 PM
for your reply. I was so excited to find this forum and then in no time it was down. I am so glad it is back up and running.

I had a lumbar fusion in 1993 and since I have such degenerative arthritis and discs, I guess that is why the scoliosis developed. I go to a specialist in Amarillo, Texas tomorrow to see if he can fix it. If he thinks he can, I think I am going to go for it. I don't know what else to do. I have tried everything else. I can walk about 50 steps before the really BAD pain starts in my hips, thighs, and calves. Needless to say, I haven't got much of a life anymore. I have spent all day trying to think of questions to ask him and have only come up with two. When you don't know much about the surgery, it is hard to think of questions--besides--will it hurt!!

Thanks again!!

09-26-2003, 02:43 PM
Hi Bonnie,

How did the office visit with the surgeon go? Sorry, can't remember from your initial post - was it Dr. LaGrone you saw?

Was your original DX "Idiopathic Scoliosis", or did your scoliosis develop because of degenerative arthritis? I remember that you are fused in the lumbar area, but not what levels or the reason for the initial fusion.

I'm fused L1 to S1 - I was DX'd with scoliosis when I was in my teens - but I did not have surgery until I was 47 years old. I had to have surgery then because one of the 2 curves (thoracic and lumbar) the lumbar curve had so much rotation that the spine was actually "collapsing" in the lumbar area - well, that was the surgeon's description.

If there's anything in my scoliosis history that is similar and I might be able to answer any questions, please don't hesitate to ask me.

Take care,

09-26-2003, 03:25 PM
Hi Rachel!! Thanks for the offer of your advice and willingness to answer my questions. Yes, I saw Dr. LaGrone. When he did the standing full length x-ray, I nearly fainted. I couldn't believe how bad it looked. All of the others have been lying down and they didn't look near as rough. This is just degenerative scoliosis because I never had a problem before. In fact, the first time it was mentioned to me was about a year ago when my ortho. x-rayed my hips to be sure I didn't have arthritis in them. In that length of time my Mom said she could see a marked difference in how I stand.

He is going to fuse (anterior/posterior) from S1 up to about 6 inches above the L3/4/5 fusion that I already have. I forgot to ask which vert it was up to. The bad thing is I have to dread it until Nov. 24. Of course, I have to give 4 units of blood and they said I would need between 4 and 8. How much blood did you have to have? I am 53 and am beginning to have osteoporosis problems, too. That is one reason I think it is best to go ahead and do this. I just wish I had my orthos. blessing.

Also, how has it limited your activity? How much can you bend? I also have bad knees and can not kneel. I really don't know how that is going to work out. Anything you can think of to pass on would be greatly appreciated!!

09-26-2003, 07:14 PM
Hi all,

my name's Erica. my 14 yr old sister in law is scheduled for surgery Oct 3rd. Her curvature is at 40 degrees. I have never known her to have used a brace for her condition.

I'm not sure if my in-laws ever took her to a specialist or how long they have known of the condition. I know recently she's been told to do excercises to try and straighten it, but of course, it hasn't helped enough.

They live 4 hours away, I dont have alot of details but when I get more I will share.

What can she expect to experience after the procedure?

*in the photo, she is purposely leaning over to hug me. If you look at her from the front, you would never realize she has scoliosis!*


09-26-2003, 11:01 PM
Hi Erika...

Your sister's recovery depends on a lot of things. Every procedure is unique, and everyone recovers at a different pace. You should ask the surgeon what to expect in general.

Depending on the type of procedure, your sister could spend a day or two in ICU. She'll probably be very drugged, and not a very happy camper. She can expect a reasonable amount of pain. Hopefully, the pain medication she'll be receiving will make the pain tolerable.

Again depending on the type of procedure, your sister could be in the hospital anywhere from about 5 to 10 days. While in the hospital, your sister will most likely get some occupational therapy to help her walk, climb stairs, get in and out of bed, etc.

Depending on her surgeon, she might be put in a plastic brace for up to 6 months, that she'll have to wear when out of bed.

It will be difficult surgery, but most kids in your sister's age range recover amazingly fast. In a month or two, she'll hopefully not have any pain.

There are some great books that might be of help to you and your family:

The Scoliosis Sourcebook (Michael Neuwirth)

Stopping Scoliosis (Nancy Schommer)

Scoliosis Surgery: The Definitive Patient's Reference (Dave Wolpert)

The first two books are available through Amazon.com. The third book is available at http://www.curvedspine.com.

Best of luck to your sister.


10-01-2003, 07:35 AM
Hi Bonnie,

Nov. 24th - you are already scheduled for surgery, wow that was quick.

Your new fusion to S1, as far as limiting your activity, you may not notice a great difference because your lumbar area has been fused for 10 years already. I found my L1 to S1 fusion to be very limiting, but as my surgeon Dr. Rand, pointed out, I had had 47 years without any fusion.

I have bad knees too, I guess due to OA, so bending is a thing of the past. I Can bend, from my hips, but that aggrevates my SI joints, so I try to avoid. I have a reacher in every room that I try to use constantly, and I have one for outside, one in the car......
I can get down on my hands and knees, but not with any great agility.

I had A/P surgeries a week apart, and had to give 8 pints of blood, but I had more time to prepare than you do.

It's too bad your reg. ortho isn't giving his nod of approval. If it's any consolation, an ortho I saw for over 10 years was quite clueless about scoliosis. Scarily so in hind sight, as my lumbar curve progressed, he had no suggestions other than the PT. I found Dr. Rand on my own, through forums similar to this one.

Linda Racine has a good website to help prepare yourself, home and family/friends for your surgery and post surgery days. She has collected opinions, ideas and suggestions that will help you a great deal, especially at home after surgery.

Also, I found the book and audio tape "Prepare for Surgery, Heal Faster" by Peggy Huddleston to be a great help before surgery. I could get very up tight and nervous in the months prior to my surgeries and was lucky to find this very calming. (AND I quit smoking 3 months before surgery!!) Her web site is healfaster.com

I hope I've answered some of your questions, please don't hesitate to ask more. As you may have already found, there are a lot of well-informed compassionate people who have scoliosis.

Take care,

10-01-2003, 11:03 AM
Thanks for the mention Rachel. I've redone my website and moved it to:


10-01-2003, 03:34 PM
Hi Linda,

Thanks for the update. I went to your web site (looks well planned out) but could not find the section I wrote to Bonnie about..... all the suggestions for making life easier before, during and after surgery. How did I miss it?


10-01-2003, 11:32 PM
Hi Rachel...

Perhaps I need to rethink where i put it :-)



10-07-2003, 03:40 PM
I looked up the site Rachel recommended and couldn't find the information she suggested. Thanks for bringing that up. I will check on it now. I did order the book on preparing for surgery. I hope to start reading it tomorrow.

Thank you guys for all your help!!