RE: Re: Hello, new member with some questions

Posted April 7, 2009 · April 7, 2009

Ruth,

Thank you so much for your response. It has really been helpful to talk with

people who have undergone the same treatment as we have. It make me feel less

alone since there isn't anyone around me that had the surgery.

I've done some research and there are studies that show that people who were

surgically corrected and those that have not been, usually end up with the same

complications of disc / vertebrae damage. Some people who went untreated seem

to have no pain while others are in extreme pain.

I'm glad to hear that physical therapy helped you a bit. I would really rather

not have any more vertebrae fused as I treasure the little flexibility I have.

Plus the idea of surgery literally makes me feel ill. I didn't realize how

badly my surgery back then affected me until I started researching and read

others peoples stories. Especially those of the kids who are how having

surgery, makes me very sad.

Walking has become more of a problem for me lately. I've always had to sit down

periodically while walking long distances, but mostly it was just to relieve

stiffness and stretch everything back out. Now, the pain starts within the

first 5 - 10 minutes and can get very bad. There are days when it hardly

bothers me at all, but those days are getting fewer and far between.

I'm seeing a doctor today, he's a scoliosis specialist in Oak Brook Terrace.

We'll see what he has to say.

By the way, what diagnostic tests did your doctor do to find out about your

spondylolthesis? Have you had an MRI?

Don't you wish someone had told us to take it easy on our backs? I remember

being told I could do anything, no restrictions once I healed. If I had known

the pressure my lower back was taking, I would have done some things

differently. Just so you know, I am only about 10 pounds overweight, but I've

always worked out and I still have problems. I don't think you weight is

causing your troubles.

Jeanne

Hello, new member with some questions

>

> Hello everyone,

>

> I am a new member to this group, and have to say that I am forever grateful

to have found you guys.

>

> Several years ago I was diagnosed with scoliosis on my upper spine and

lower, and yes it is inherited. I have several questions that I am hoping some

of you can answer for me is possible.

>

> My grandmother has severe scoliosis, so much that her left rib cage is now

going over her hip bone. I do not want to grow old this way. Is there something

that I can do now in order to slow the progression of this or are there surgery

options? I cant sit for very long periods of time, my back always hurts, and I

have severe muscle pain at times, and my doctors cant seem to find out the cause

(they think that its all in my head). Second question, would I see a specialist?

If so, what type of specialist? I dont know where to start and or what can help

me. But I am aware that the older I get the worse my back is and the worse that

I am humping over. And I am only 31.

>

> If any of you couold offer some advice, it would much appreciated. Thanks to

all!

>

> Kristie J

>

Posted April 7, 2009 · April 7, 2009

Hi, there! Ruth, the methods used these days for fusing the vertebrae are so

much more sophisticated! Please don't hesitate to have the surgery if your

curve(s) is still progressing. It's well worth it to not have the pain and be

able to walk like a human being. If I had to do it again, I would, and I'm

fused front and back, T2 to L5, the whole back. I have four rods, to for the

thoracic part and two along the lumbar part, because I had an S curve.

lj

From: r8mell <r8mell@...>

Subject: Re: Hello, new member with some questions

Scoliosis Treatment

Date: Monday, April 6, 2009, 7:33 PM

Hi - this is my first time posting, or in a long time, so I hope I am Replying

to the correct person.

Jeanne - I had scoliosis surgery at Rush also by Dr. DeWald. My surgery was in

1974, and I turned 50 last year. I don't remember by curvature degrees but I

think one was in the 70's. Like you, I had mostly stiffness problems, though

there were times when my back went " out " and I'd have to lie on the floor for a

day...

Then last year the pain & stiffness got worse and I finally went to a

specialist. I wasn't able to walk more than a block without sitting down to

rest. Even though I'm overweight I had always been able to walk as long as I

wanted to. Turns out I have spondylolthesis, which is a lower vertibrae out of

place. Because all the others were fused that one vertibrae was/is the only one

that moves and taking all the stress. I had 6 weeks of physical therapy and it

was much better -- but I have trouble keeping up with excercizing on my own

though I know I need to.

The spine surgeon said the only " cure " would be fusion, which I don't want. He

said it is very common in people years after the original surgery. Not sure if

it is specific to Harrington Rods or not. He trained under the younger Dr.

DeWald -- make me feel really OLD!

Email me if you'd like to compare further notes. I had a body cast for 9 months,

back in the day. I don't regret the surgery & it's hard to believe your friend

has been ok without it! I was told I'd be in a wheelchair, most likely, if I

didn't have it.

As to the new member, your pain is most likely in part due to using muscles on

one side more to compensate for the other side. But DO see a specialist.

Ruth

>

> Hi Kristie,

>

> I am a soon to be 50 year-old-woman who had Harrington Rod surgery for

scoliosis back in 1977. My curve was 50 degrees and I am now fused from T6 to L3

with a curve of 15 degrees. It was a very painful surgery and I was hospitalized

for two weeks and wore a body cast for seven months that completely covered my

torso. I was operated on at Rush Presbyterian- St Lukes Medical Center by Dr.

DeWald. He has since retired, but his son works in the same field at the

same hospital.

>

> I have to say that for most of the 30+ years since my surgery I have been able

to do pretty much everything I wanted. From water skiing, hiking, and having

three children. Most of the time the discomfort I felt was some stiffness in my

lower back that would ease if I did regular stretching. I did have a few

incidents with severe back pain at times, but they were few and I always

recovered quickly.

>

> Unfortunately, I have been having increasing pain for the past 2 - 3 years

which has grown to be a chronic problem. I have an appointment on April 17th

with a spine specialist to see if they can tell me why I am having this pain.

From the research I have done recently on line, the Harrington rod surgery is

now considered faulty and is no longer used. I am trying to learn what I can

about this before I see this doctor so I can ask the correct questions.

>

> I also have a close friend who did not have surgery, she's now in her late

40's. Her mother and her two sisters all have scoliosis and non have had

surgical corrections. They stay fit and exercise. My friend's curve is quite

significant, probably at least 50 degrees or more. She's had two children and

says she has no pain. Her curve is not progressing any longer, so she feels

quite content to just leave it alone.

>

> Making the decision to have surgery is not an easy one and should not be done

until you have seen at least 3 specialists. In the United States there are

several states that have top notch doctors. You should check out the following

websites for more information:

>

> http://www.scoliosi s-assoc.org/

>

> http://www.scoliosi s.org/

>

> http://www.mayoclin ic.com/health/ scoliosis/ DS00194/DSECTION =coping-and-

support

>

> These sites can help you find other groups and the doctors that may help you

make a decision about what treatment is best for you. Speaking for myself only,

I would look for non-surgical remedies, but ask reputable doctors about those

types of options. If it seems that surgery is the best option, please know that

there have been great advances in the surgeries they do now and they know how to

avoid many of the complications that came with the type of surgery I had.

>

> Even with the pain I now have, I am active and do not regret the surgery. My

curve was getting worse quickly and I was already 17 years old so bracing was

not an option. My parents did what they thought was best and I have done very

well since then.

>

> Good luck to you and please feel free to ask me any questions you might have.

>

> Jeanne S.

>

> Hello, new member with some questions

>

> Hello everyone,

>

> I am a new member to this group, and have to say that I am forever grateful to

have found you guys.

>

> Several years ago I was diagnosed with scoliosis on my upper spine and lower,

and yes it is inherited. I have several questions that I am hoping some of you

can answer for me is possible.