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Thread: congenital scoliosis

  1. #1
    scoliosisguy Guest

    congenital scoliosis

    I have the type of scoliosis caused by a birth defect,or a malformed vertabrae.
    Anyone else have this type? It causes me daily pain,hard time falling a sleep,difiicult to be comfortable while sitting,lying,I also get numbness down my right leg when satnding too long or walking too far.
    I read a book just last night and in it,it stated that congenital scoliosis patients often times have other problems as well,such as kidney problems,heart probelms,etc.Is this truse?Worried now there might be more wrong with me and just didn't find it yet.
    My specialist I see tells me I have a very rare case.He says there is nothing to do to relieve pain or be more comfortable ,other than fusion surgery up my entire spine,and after getting that done,I will be disabled and unable to work anymore.I am still not convinced that that is my only option,deal with the pain or have surgery nd become disabled. There has to be more to try.

  2. #2
    Join Date
    Oct 2003
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    Utah
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    1,010
    Hi,

    I agree with you - I don't think full spine fusion is your only option. I also don't think that having a fusion surgery will cause you to be totally disabled and unable to work anymore. However, I also don't know the details of your condition.

    The book you read is correct - people who have congenital bone malformations in the spine have a higher risk of having problems with kidneys and some other internal organs. My son is one of these patients. He has "multiple hemivertebrae with contralateral failure of segmentation" in several thoracic vertebrae. His kidneys are malformed, but they function just fine. He has annual renal ultrasounds to make sure the kidney function keeps working. He has had two renal surgeries.

    You mentioned that your legs fall asleep easily - either when walking or sitting too long. Do you have any problems with your bladder or bowel habits? Do you leak urine? Do you have lower back pain ever? These are all symptoms/signs of a spinal cord problem. Have you had a full spine MRI to see if there are any problems with your spinal cord and/or soft tissue? If not, I would think that having an MRI would help you know if you have a problem in the spinal cord that needs to be taken care of. I would make sure to see a neuroSURGEON (not just a neurologist) who has experience in treating adults with closed spinal cord defects (even if you don't have one).

    You've mentioned your doc has given you a grim outlook - have you gotten other opinions from other scoliosis specialists? If you can, it would be a good idea to get another opinion from a scoliosis specialist who has treated many patients with congenital spine abnormalities.

    My biggest worry for my son, even before he was born, was that he would have chronic back pain all of his life. He is only 9yrs old right now, but, so far, so good. He has minimal back pain and is very active and lives his life to the fullest. At birth, his congenital curve measured 45 degrees. By age 9 months, the curve measured 75 degrees. At 11 months old he had fusion-only surgery to stop the progression of the curve. At age 4, he had a tethered spinal cord release surgery. At age 6yrs old, he had two vertical adjustable rods placed to keep his chest expanded and his spine stabilized. He is doing remarkably well.

    I wish you the best. I can only imagine how frustrated you must be when all the medical news you receive is so gloom and doom. I hope that you will find a surgeon who is willing to help you and can offer a glimmer of hope for you. Keep us posted.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
    scoliosisguy Guest

    re

    My leg gets numb because it is pinching a nerve root. Back in the summer,I had to get a selective nerve root block for sciatica,because the numbness was at that time pain,and it was intense.It ran down my right leg. So far I did not see any other specialist or get any second opinions.I am seeing a neurosurgeon.My neurosurgeon is going to be letting other nueosurgeons in his clinic look over my situation,and see if they come up with anything different.I can hear a bone rubbing against another one often.I think it is sound of vertabrae rubbing where there is little to no clearance between them.
    To best that I can tell,I don't notice any other related problems due to the congenital scoliosis,but it is possible there could be other things going on that just are not found as of yet. I am 38 years old now,and did not know I had any of these problems or scoliosis until last spring when symptoms began showing up.It fastly progressed,and it is like I am in a total different world today than I was one year ago.
    Be sure to keep ypur son seeing the doctor regularily. I really wish I'd have found this at a younger age.Maybe I could have had something done to change the way things are today.

  4. #4
    Join Date
    May 2005
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    147
    Congenital scoliosis--that is what I have. I was diagnosed at 6 months old. My mom taught me how to deal with the pain at a very young age, & I have had no major problems until this past year (I am 48). Until then, I have had to take 800 mg motrin 3-4 days in a row 2-3 times a year; with an occasional heavy duty pain pill at times. This past year, my scoliosis has gotten worse & now have degenerative disc disease to go with it. My doctor (he is great!) showed on the MRI how my spine was actually doing & told me that I really needed surgery. Although he is an orthopedic surgeon, he told me that I need to go to someone who has done this type of surgery on this type of scoliosis on a regular basis...and suggested a doctor in Boston. As for the pain, I have gone to a pain management specialist & received a steroid shot which helped immensely. I am going back for a second shot next week. Hang in there. If you don't like your doctor, find one who will listen to you & discuss things with you and SHOW you what is wrong. I don't know where you live, but mine is great in San Antonio, TX. Good luck to you!

  5. #5
    Join Date
    Sep 2003
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    Northern California
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    Crooked...

    When you're ready for surgery you don't need to go all the way to Boston to find someone who deals with cases such as yours. Mike LaGrone in Amarillo and Barton Sachs in Plano both come highly recommended by other members of this forum.

    Regards,
    Linda
    Last edited by LindaRacine; 05-08-2005 at 12:17 PM.

  6. #6
    Join Date
    Aug 2006
    Posts
    5

    adult congenital scoliosis

    I suffer from extreme pain and spasms. I've never had surgery but use a lot of other treatments for the pain like tens unit, pain medication, icy hot, heating pad, anti-spasm medication, use a lumbar role, limit my daily activities, stretching my legs, light exercising, etc. I have hemi & block vertebrae in 3 locations of my spine, a twist at the top, ribs fused to my spine, uneven hip bones, and live in excruciating pain. Surgery is never an option for me, altough if it was I would consider it. I want to share my experiences and daily problems that I have with others who are like me because it seems sometimes that I am the only one who suffers from this deforming condition. I found this forum while searching for help for adult congenital scoliosis. But I think it would be great to talk to others who experience that pain and difficulties with life as I have had to. I didn't actually go through and read all of the responses before me, however, I would like to just jump in and talk with anyone who can relate to me and my horrible pain.
    Last edited by branilla; 08-19-2006 at 09:14 AM.

  7. #7
    Join Date
    Aug 2006
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    branilla

    I can understand exactly i have many of the same problems and pain is a major part of life and at time very painfull. At this present time i am having problems with my right side main pain in the lower back and effecting my right side and leg. As you say there are painkillers and many other things to help but at the end of the day it only helps so much.

    With my congenital scoliosis and spinal dytraphism which if i understand correctly is acult spinabifida (stretched spinal cord) at time you just cant be bothered with the world as you focus on how to relieve the pain.

    My other main pain which when real painful is my neck and at time makes me tired and hard to keep up and also when sleeping feels like you back is twisting.

    Try not to feel alone

  8. #8
    Join Date
    Aug 2006
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    5
    Dave 2

    Wow we're experiencing the same things. It is also my right side that I have the most pain with and my lower back and neck also stay in pain. And interesting enough my brother had spina bfida but died at 2 mths old. It feels good to know I am not alone. Thank you.

  9. #9
    Join Date
    Jun 2005
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    Maryland
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    I have congenital scoliosis and was not diagnosed until I was 29 years old. I was born with spina bifida occulta, missing pedicles and two hemivertebrae. By the time I was diagnosed, my lumbar curvature was at 52*. I had a compensatory thoracic curve and a couple of herniated discs. I also had severe spinal stenosis which caused horrendous pain in my right leg, foot and big toe. I was unable to walk more than 5 minutes without pain and I suffered like this for over eight years not knowing what was wrong. After consulting several doctors including an orthopedist, neurosurgeon, and scoliosis specialist, I made the decision to have surgery. I had a combined anterior and posterior spinal surgery with instrumentation and laminectomy in May, 2006. I no longer experience the pain I had before and I feel better than I have in years. You are not alone. I know it's hard to find other adults with similar experiences out there. Luckily you found this forum. It has helped me more than I can ever really express. The knowledge and support I found here helped prepare me for surgery and have since aided in my recovery. I know surgery is not an option for everyone, but sometimes it just helps knowing you are not alone.

    Brandi
    Brandi
    Congenital Scoliosis, 58* lumbar curve
    Combined Anterior/Posterior Spinal Fusion w/Laminectomy May 22, 2006
    L1-S1
    Dr. William Lauerman
    Georgetown University Hospital, Washington, DC
    Pedicle Subtraction Osteotomy @ L3, Posterior Spinal Fusion L2-L4, rod removal with re-instrumentation T10-S1 and Laminectomy February 5, 2009 to correct flatback
    http://brandi816.wordpress.com/

  10. #10
    Join Date
    Aug 2006
    Posts
    5

    Being Disable and working

    I have been working full time for the first time in 4 yrs. I have been getting SSD and reported to them that I was working in Oct 2005. I told a few people at my job that I was physically disabled, still receiving SSD, and going through the "work trial period," as Social Secuirty calls it. I did not make it a big issue to my co-workers/supervisors that I was disabled, however I did fill out the physical medical history paperwork honestly. The doctor told me to bend over and said that I could work as a sec. Later, I was promoted and transferred to corporate office in 4/06. Then I found out a few weeks ago that our company was being sold. I was reading the new company's handbook and I got scared-really scared that I was going to lose my job because I am disabled. They're not going to keep all of us employees. I do know that my job was being "absorbed" by the new company, however they were going to try to find me another comparable job. So I frieked out a little bit-went to the President of my current employer and told him I was disabled, had not made it a big deal to everyone, didn't want any further accomodations than I already took (you know lumbar role, frequent breaks, etc), and I think he took it better than I expected. It didn't seem to bother him that I was disabled. However, since the company has been trying to train me in another position I have been driving back and forth between two locations working half days at each location. It is killing my back! My right hip bone continuously pops out of place and screams in sharp piercing constant pain. I drown my back in arthritis creme, which does help for a few minutes, and have been taking pain medicine regularly for the past week. However, I am going to have to take a drug test for this new company. Even though I have prescriptions for these medications, I am again afraid that the new company will have a problem with it. Question 1: Can any of you relate? Question 2: Are my fears valid? Question 3: What is your take on this situation? Please feel free to give me whatever wisdom you can.

  11. #11
    Join Date
    Oct 2006
    Posts
    1
    I myself have a fusion from T9-L5 back in 1990. Over 18 inches was fused front and back. It, of course, couldn't be corrected and my spine is still in the shape of an S. I wasn't permantely disabled after my surgery and had a very productive life, school, sports, college and gave birth to six beautiful children. Sometimes surgery is the answer. However, no I can bearly walk. The disk below my fusion has herniated and spinal stenosis(which is common years after a fusion) and I haven't found anyone who is willing to perform surgery on me. It hard having six active children and now finding myself unable to do the simplist thing for them. But I had a good 15 years before anything went wrong and I worked. You just have to look at what your risks are and if you are willing to take them.

  12. #12
    Join Date
    Aug 2006
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    369
    Mommyallison

    Have you tried a chiroprator. I have a congenital fusion. My pain was terrible. I could not even hold a cup of coffee at times. At this point I have been medication free with minimal pain for 10 years. I did go thru 3 chiro's before I found the right one. I go every 3 weeks religiously.

  13. #13
    Join Date
    Nov 2006
    Posts
    1

    Thumbs up Spinal Stenosis and Spina Bifida Occulta

    Hi folks,
    Iam new to this form type stuff,I had been hunting around the net trying to find people with the same problems as myself or similar.
    I have suffered on and off for over the best part of 27 years, It first came to light in 1979 when my daughter was born and has been so since then. It is in my lower back and hips with the pain traveling down my left leg and foot, it often goes into a sezure like grip and I can not move my leg for several minutes afterwards. It has recently go to my right leg but has not been as constant as the left. At first I was given various thing from painkillers to plaster beds to sleep in, surgical corset, tens box, spinal facet injections. The latter work well for a good number of years and I have always been in full time employment. Iwas offered spinal fusion but declined, I have 2 other brother who both have spinal conditions. My oldest brother who is now dead had the full curviature of the top of the spine (haunchback) my other brother suffers from more or less the same as myself and had the operation about 6 years ago he has had about 2 years were by he was OK, but now finds himself in a electiric buggy to get around. So as this has occured with him I felt I was corect in my decision not to have the operation.

    I have recently started to get worse and have currently been off work for almost 10 months now I am in pain as bad as it was at the onset all those years ago. I have difficulty in walking any great distance and need help with clothes shoes ect.I am on Gabapetine 300mg X 3 a day, plus 150mg of Zydol (painkillers) X 2 a day and 50mg of Zydol X 2 if required plus Namatriptoline X 3 at night. I have also the opption of Spinal Facet Joint Injections If I so wish. You all may well say it would be best to have the Op but Iwas told that it was a 50/50 thing I could walk in but go out in a wheelchair permenantly. So I will keep it as it is unless somethingrealy realy drastic happens.
    Last edited by Fadgie; 11-15-2006 at 04:22 AM.

  14. #14
    Join Date
    Sep 2003
    Location
    NJ
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    1,291

    Question disability predicted after scoliosis surgery???

    I had a complete revision at age 60 --4 years ago of a very severe triple curve. I got a 50% correction, am working and have no pain.

    Just my story.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  15. #15
    Join Date
    Aug 2006
    Posts
    5

    reply to surgery and question regarding genetics

    Looking at the different replies it looks like surgery is good for some. However I have heard just as many stories about problems after back surgery as well. Personally-I am going to continue to say no to surgery.

    Does anyone one affected by congenital scoliosis have kids or aunts or parents with the same conditions? I am worried that my kids may have it and I have always wanted to know who else in my family before me might have had it as well. I didn't have much luck with the geneticist several years ago.
    Last edited by branilla; 12-03-2006 at 01:14 AM.

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