These are my X-Rays

[LindaRacine]

Hi Linda,

I too had doubts about the study. Although I think we can neglect the permanent part of it, we have seen people with fusions who had to do revisions or develop secondary curvatures after the surgery.



Hi Jackie,

I don't know if a brace would help or not, the general idea of a brace I think is that to change the direction of a child's spine during his growth, and to prevent further increase in the curve for adult patients, that's what I think and what I understood, don't know if correct or not

Surgery is definitely not the be all or end all. The difference is that you don't find surgeons saying that it is. :-)

--Linda

[titaniumed]

Handy

If there is pain after surgery, it can be hard to locate exactly where its coming from so this becomes quite a problem. Removal of hardware can be just one screw or the whole construct. Repeating surgeries and going back in can also create new problems where one does not exist....Removing hardware is something that takes careful thought....Now you can understand that your initial decision to have surgery should be mulled over so you are aware of any potential complications. Think this through, educate yourself, and know your disease.

There are no guarantees with anything, exercise, bracing or surgery. You don’t have to make a decision on anything right now.....you should make the decision to make the best of what you have, live your life, and try to smile often, post here, and maybe take up diving. (smiley face)

We knew that the red alert light would start blinking......(smiley face) When we see that on the roads with an emergency vehicle, the law states stop.

Did you get the book? Right now, I would spend money on reading a few scoliosis books....

Ed

[rohrer01]

Ahmed,
My curve didn't start when I was 16. I've had back pain since I was about eight years old. I also noticed my upper spine out of place by the age of 12, but my parent didn't listen to me when I complained of pain and the deformity. Since I have hypokyphosis, my posture has always "looked" good. No one noticed the shoulder height difference because they thought it was the way I was standing or sitting. I had quite an extraordinary difference in shoulders that I don't have now because of the development of the second curve making me appear balanced. I think what happened between 15 and 16 was my final growth spurt where, instead of growing up, I curved making me shorter. It was at that age that I had my first SEVERE pain episode. I was at work when it happened and a co-worker actually carried me and put me in her car and drove me home. I didn't have insurance and was afraid to go to the hospital. That happened on a Friday and my mom took me to a chiropractor for an x-ray on the following Monday, where the scoliosis was finally diagnosed. From there I was seen at a free clinic at Children's Hospital until I was 18. I tried to follow up once when I was about 24, but the hospital I went to had terrible x-rays, so don't really know where my curve was. I actually have those x-rays and they are done in segments of about six pieces! Totally useless! I never saw anyone again until 1998 when I had another pain episode. Since then I have monitored with appropriate doctors at least every five years or so. Whew! Condensed version in a nutshell. =)

I'm so very, very glad that the rice pack is helping your neck pain. I don't know how you can work 15 hour days with that kind of pain. But, we do what we must do. You're a real trooper!

I'm surprised about what Dr. Weiss said about physical therapy. I guess that puts a kibosh on things, at least for adults! But, I still think it's a good idea to be in as fit of condition as you are physically able. Keeping the rest of the body healthy can only help matters, especially if you end up having surgery.

Have a good weekend. =)

[susancook]

Hi Ahmed...

Please note that the "study" they sent you appears not to have been published. Even if it was published, the results would be suspicious until 1) another center can reproduce the results and 2) (as Pooka mentioned), the results can be proved to be permanent. As Pooka mentioned, Schroth has been around a very long time. While they have published some short-term results, they have never published a long-term follow-up.

Unlike Susan, I would discourage you from getting on a pain medication program. While pain medication can be a life saver for severe pain events, my instinct is that taking narcotics on a regular basis drastically reduces one's surgical outcome satisfaction. I don't know if there are any studies on that phenomenon, but I work in a spine clinic where I meet dozens of new patients every week. Mostly, the people who have been taking narcotics regularly on a long-term basis seem to have much longer and harder recoveries than those who don't take narcotics. There are a lot of us who did not take narcotics prior to surgery, and know it's possible to control pain with less drastic measures. However, pain is subjective, so it's hard for anyone to know another persons pain level, and their ability to deal with that pain.

Regards,
Linda

My recommendation about any medication....and I do not remember that you ever said what your doctor gave you, was that if your pain was such that you were staying at home and not participating in activities, then you might consider a medication. I don't know if your doctor gave you narcotics or other meds. Certainly try Ibuprofen first, which is maybe what your doctor gave you in Prescription form. Narcotics can be very addicting. Before using meds other than NSAIDS like Motrin or Ibuprofen, you should consider physical therapy. I do not know if treatments like steroid injections or other procedures are useful for younger people with scoliosis, but for much older people with degenerative changes, it is sometimes useful.
So difficult to type on my phone, so I will stop.
Susan
Just saw your response to my earlier email. There is a Society for Scoliosis Research membership, that has a list of doctor s that have passed certain credentialling criteria so that they have experience and continuing education in spine surgery and care. The link is in the resource area, I believe. Like I said, I am on my cell phone typing, so this is a challenge. S.

[handy]

Hi my dear friends, How are you doing? I really missed you all

It's been about 2 months since my last post, unfortunately got a nasty car accident which left me out for sometimes and busted both of my legs, gladly nothing major other than the legs and I am back

I have asked to have the surgery done with the surgeries that I received on my legs, they did a ton of x-rays and MRIs, but they told me that I would also need to have some adjustments to my ribs because there is a severe deformation which would decrease the respiratory system function by 10% to 15% and because of my asthma it would affect me severely so they refused to do the surgery for now and gave me another appointment after a year from now.

They also did a test for vitamin d level in my blood, which turned out to be severely deficient "4ng/ml while the optimal should be between 50 to 70 ng/ml" and they suggested it might be the reason behind the sudden increase of the curvature.

Currently I feel that the surgery is the right thing to do, just need to use the time until my next appointment to overcome the struggle I have with medications, I have a weird phobia of taking meds.

Off to bed now and will post my new x rays and MRIs later

[titaniumed]

Handy

Your story is similar to mine since we both broke other bones leading up to our surgeries. I can imagine that breaking “both” legs would stop a scoliosis surgery. I hope you legs heal ok.....

The rib procedure that they might be talking about would be called a thoracotomy.....I wonder how many males have had this done in the past? This would be a rare thing. In England, thoracotomy is called costoplasty. It’s a rib removal procedure.....

Modern hardware systems really do address the rotation of each vertebrae and these thoracotomy procedures are a rare thing these days. I would question this.

It will be hard for me to follow and post since I’m flying to Panama tomorrow and will be diving off an island. They probably don’t have internet, but they do have crocodiles there.

I just might be the first full fusion scoli to have to run from a crocodile. (smiley face)

Ed

[jackieg412]

Glad you are OK

Ahmed
I wondered what happened to you.I hope all is healing well. You will need very strong legs for scoli surgery.
Listen to Ed--he knows a lot. Let's hope he knows how to run if necessary.

ED--come back in one piece but your amazing spinal work might make it hard to take a bite out of you!

[LindaRacine]

Handy

Your story is similar to mine since we both broke other bones leading up to our surgeries. I can imagine that breaking “both” legs would stop a scoliosis surgery. I hope you legs heal ok.....

The rib procedure that they might be talking about would be called a thoracotomy.....I wonder how many males have had this done in the past? This would be a rare thing. In England, thoracotomy is called costoplasty. It’s a rib removal procedure.....

Modern hardware systems really do address the rotation of each vertebrae and these thoracotomy procedures are a rare thing these days. I would question this.

It will be hard for me to follow and post since I’m flying to Panama tomorrow and will be diving off an island. They probably don’t have internet, but they do have crocodiles there.

I just might be the first full fusion scoli to have to run from a crocodile. (smiley face)

Ed

Hi Ed...

Actually, it's a thoracoplasty. Thoracotomy simply refers to an incision of the pleural space.

--Linda

[jrnyc]

hey Ed
have a great...and safe...vacation....

and just tell the crocodiles that you have so much metal in you, it
would ruin their meal...

jess...and Sparky