how do you accept scoliosis?

[scott]

hi. i have scoliosis in excess of 100 degrees. ivve had spinal fusion, and rods inserted in my back when i was 6, this stopped the curve proggressing for a while, but by the time i was 10 i had out grown the rods. hence my scoliosis got much worst as i had my growth spurts through puberty. at 17 i had the opportunity for my curve to be reduced to 30 degrees or lower. clearly i took this opportunity. because my spinal chord has a cavity in it it makes any back sugery, especially revision surgery even more dangerous. there was only 1 consultant in the country willing to do it because of this danger. i was told i had a 20% chance of permanent paralysation. the procedure would involve breaking my back, stretching it over a period of 3 weeks via. traction, then having a second operation to take out further vertebrae to make my spine more flexible. finally a third operation would fix my back in its new position with rods. anyway, after the 2nd operation i lost the feeling in my legs, however a ct scan shown all my nerves were still intact so hopefully i would regain my feeling in them. the doctors told me that a third operation was likely to leave me permanently paraylsed as they had only slightly stretched my back when i lost feeling. therefore i decided not to have my back straightened further. i had to have a "prop" put in my back (a bone holding up the curve) and rods installed.
i hsd all my hopes on this procedure and was dreaming of being tall, and just normal. instead im left with the knowledge that i will have to live the rest of my life with severe scoliosis. i hate being short because of it (im 18 now and only 5'3) which isnt helped by the fact my twin brother is 6'4 (obviously, he doesnt have scooliosis). what also bothers me is that my hips are relatively so high up on my body because my upper body is so collapsed. if anyone is in a similar situation, or has ideas which could help me cope with scoliosis i would be extremely grateful.

scott

[rainbow2010]

I haven't gone through as much as you. However, I know what it was like to be a teenager with scoliosis. My scoliosis really shows when I wear a dress as my hips are uneven. I look at it this way... God made me special and in a way, my scoliosis is a gift. I am able to talk to kids (I used to teach) and relate to them over difficult times. I was able to get through to many difficult students that other teachers could not reach. I have talked with many kids over the years that have found out they have scoliosis and answered many questions for them. Now, I can answer long-term questions that their parents have. I know this may sound sappy, but I also have my bad days when the pain is intense and depression tries to get me. On those days, I sit back and let my family take care of everything and I read or work puzzles to try to take my mind off of the pain. My faith also helps me through all that I've been through.

[Benedicte]

Hi,

I don't if you can find any comfort in this

http://www.scoliosis.org/forum/showthread.php?t=3435

but in a weird way hearing and reading about others situations, their insecurities and how they cope with it, sometimes helps...

And I guess that's why forums like these exists..

Anyways, hope the best for you.

It will get easier..

Best wishes!

Benedicte

[brians2000]

Hi Scott, I kinda understand you

I was born with Scoliosis and I had my first small three level fusion when I was 6 (1977). I wore a body cast most of my life. My OSS hoped to stabilize my spine and to slow the scoliosis. For the next eight years my spine didnt get a great deal worse until I was involved in a major car accident in 1986. In the accident I broke my pelvis and had a head injury that left me in a coma for one week along with my left side of my body temporary paralyzed. Because of the broken pelvis and being paralyzed for awhile my scoliosis got out of hand. In 1988 I underwent my first 360 spine fusion with two 17" rods from T4 to my pelvis. After I recovered fully from my car accident and fusion I was just like a normal teenager except no physical sports. Shortly after graduating from high school I began lifting weights. I continued lifting for about ten years before I started having back pain again when I was 29. I went back to my original spine surgeon and he noticed I had broken one of the 1/4" Dia x17" Long Harrington rods. He told me I would have to undergo another major re fusion which would require two brand new rods along with two pedicle screws. In Sept 2000 I underwent two ten hour surgeries that fixed the broken rods but left me worse off now than before the surgery. Maybe it was so hard because of my age but I am now suffering daily for going thru it. Scott you mentioned you are only 5'3". I assume that is with your shoes on. I am also short about the same height as you. I am actually only 5'1" without shoes. I never got to play sports or get involved in any rough activities that guys your age enjoy. I remember going to high school my junior year with a back brace for almost the entire year. I had my first major spine surgery in 1988 the summer before my Junior year. I honestly never worried about my short height and I seemed to make lots of friends even though I was the shortest in school. I still looked normal except I was never tall. The doctor told me when he fused my spine I would never grow any taller in my upper body. I had to have the surgery because he said if I didnt I would end up in a wheelchair by the time I was 30. I am now 35 years old and I only regret I didnt take better care of my spine. That is the reason I had to have it refused in 2000. Scott try to keep your head up high and dont worry what others may think. Sure you will have some kids calling you short but just brush it off. My doctor always told me to try to make the best grades I could because I would not be able to handle a physical job. I dont know how smart you are but try to focus on a career where you dont have to do anything physical. I understand you may get down on yourself from time to time but just try to remain positive. Trust me people will respect you if you respect yourself. Always try to be nice to everyone and they will be nice to you. Good luck. If you every want to chat just look me up. Brian

[Cakedec]

Hi Scott--Don't give up hope yet!

Scott,
I would encourage you to see Dr. Boachi in New York City. He is the top scoliosis surgeon in the country right now and does amazing things for people whom no one else can help. People fly into him from all over the country (and world). Do a search on this forum (or the 1st time surgery) to read more about him.

With your upper chest area already collapsed, it seems like you would be at danger for future progression and heart/lung compression as you age. You are young enough yet that it seems like surgery with the right dr. could be a great help to you!

Deb

[brians2000]

A little about Dr. Boachie- Number 1 scoliosis specialist

Extreme Spine Surgery


DOCTOR: OHENEBA BOACHIE-ADJEI, M.D.

Oheneba Boachie-Adjei was born in Kumasi, Ghana, West Africa, and raised by a poor, single mother, a circumstance that fostered Boachie's determination, resourcefulness, persistence and take-charge attitude.

As an 8-year-old in the city of Kumasi, Ghana, Boachie-Adjei nearly died from a severe gastric illness. When the herbal remedy prescribed by a local healer did little to help, his family was fortunately able to track down one of the country's few physicians — a pediatrician who had returned to Ghana after training in the U.K. The doctor came to the young boy's aid, successfully treating him with modern medicine. The experience inspired young Boachie-Adjei to pursue medicine as a career and also served as a reminder to keep his mother country close to his heart.

Dr. Boachie came to New York as a 21-year-old immigrant. He worked three jobs before school started and held part-time jobs while a full-time student at Brooklyn College.

He attended the Columbia University College of Physicians and Surgeons, and pursued postgraduate medical education as an intern at St. Vincent's Hospital and as a resident at Hospital for Special Surgery, both in New York City. A fellowship took him to Minneapolis, Minn., as a John H. Moe Spine Fellow at the Twin Cities Scoliosis Center and the Minnesota Spine Center. In 1994, he returned to Hospital for Special Surgery, where he is now chief of the scoliosis service. He is also professor of orthopaedic surgery at Weill Medical College of Cornell University. At the Hospital for Special Surgery, Boachie was the first person named to hold the David B. Levine Chair in Spine Research.

In the mid-1990s, having established his career as an orthopaedic spine surgeon, Dr. Boachie-Adjei dedicated himself to launching a foundation to provide orthopaedic and spine services to people in Ghana and other developing nations who do not receive adequate medical care. Using his own money for start-up costs, Dr. Boachie-Adjei launched FOCOS in 1998. "FOCOS was a dream come true for me and for countless others who suffer from spine and orthopaedic afflictions in Ghana," he said. The foundation's efforts were expanded to Barbados in 1999, and Dr. Boachie and the FOCOS board are working to extend its services farther in West Africa. Already, patients from Ethiopia, Sierra Leone, Poland and the UAE have been treated in Ghana as an affordable alternative to treatment elsewhere.

Dr. Boachie says, "I believe in the notion that the practice of medicine is a privilege, not a right, and that our talents have been given to us to benefit the sick and suffering. I learned of giving back early in life; I am alive today because someone served and gave back. Service is our destiny. Albert Schweitzer, a Nobel Prize laureate, said, 'I don’t know what your destiny will be, but one thing I do know: the only ones among you who will be really happy are those who have sought and found how to serve.'"

Foundation of Orthopaedics and Complex Spine (F.O.C.O.S.)

FOCOS is a nonprofit organization established by Oheneba Boachie-Adjei, M.D. The mission of FOCOS is to provide comprehensive, affordable orthopaedic and spine care to underserved communities in Ghana and throughout West Africa. Through its international network of world-class volunteer surgeons and other medical providers, the FOCOS vision is to create a sustainable infrastructure that encourages local capacity building and professional development in these areas.

[Cakedec]

tHANKS FOR THE FOLLOW UP INFO, Brians2000!

This is good info for the rest of who may have an opportunity to help others as we have been helped!

Deb