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Thread: Continuous back pain and thoughts of revision.

  1. #1
    Join Date
    Jan 2011
    Posts
    5

    Continuous back pain and thoughts of revision.

    I had previously posted on this site a while back (http://www.scoliosis.org/forum/showt...e-this-forever) but thought I would post again to see if I could get anymore thoughts and advice.

    I have been having back pain just about everyday now. I was fused in 2004 (I was 13 years old) from T-4 to L-5 and have within the last few months been having continuous pain usually in the upper right side of my back (where a large bone mass is due to a late fusion of the rods.) up to my right shoulder and neck. If I sit for too long or lay in one position for to long the pain becomes stronger and harder to tolerate. Some days are worse then others and some days the pain is on my lower left side (where I have another curve that is becoming worse and worse every day). I was told by a Doctor in Raleigh, NC (Dr. Hey of the Hey Clinic) that revision surgery would be too risky at this point since it would involve cutting into the actual bone in my spine and they would have to work around the spinal cord with risk of paralysis. I wanted to see if anyone else knew of other highly praised physicians or spinal surgeons I should speak to for second or even third opinions.

    I can't live day to day with continuous back pain as it makes it hurtful to do some things and the curve of my back (72 degrees before my first surgery brought down to 35 and now is BACK to about 50 degrees.) causes me to have low self-esteem and to not feel secure in my body or attractive as this curve is the first thing people seem to notice about me. Please, if anyone has any advice or information I would love to hear it!

    Thank you all for any advice or help you can give me

  2. #2
    Join Date
    Nov 2010
    Location
    St. Louis, MO
    Posts
    86
    Hi Scoligirl,

    I don't know if you are interested in traveling but Dr. Lawrence Lenke (St. Louis Missouri - Barnes Jewish hospital) is a top surgeon in this field. He is president of the scoliosis research society and specializes in the extreme cases that other doctors won't touch. You might get an opinion from him. Here's his website. There are lots of people on this forum who had him for their doctor (myself included) and I have not found a person yet who had a bad experience with him. Hope you find the help and relief you need!http://www.spinal-deformity-surgeon.com/
    Laurie Anne
    Age 30
    Pre-Op Curves T68, L80, Kyphosis 48 degrees
    Post-Op Curves both around 10 degrees
    Surgery with Dr. Lenke & Dr. Kelly 12/13/10
    Gained 2.5 inches now 5'9
    PRE-OP Photos: http://s1080.photobucket.com/albums/...urieScoliosis/
    5 Mos Post Op: http://s1080.photobucket.com/albums/...s%20Post%20Op/
    1-Year Post Op: http://s1080.photobucket.com/albums/...r%20Post%20Op/

  3. #3
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    I'm sorry to hear about your pain.

    I read the original thread and am puzzled that you seem to have not had the new segmental instrumentation if you only had fixation at the top and bottom. Yet your surgery was 2004. Who did the original surgery?

    Can you post radiographs?

    Beyond that, if Dr. Hey thinks your case is too complex for him to operate then I think Lenke or someone else like that should evaluate you. They may agree but you need a few more opinions I think. And if nobody will operate then the pain guys have to help you.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #4
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Oh hey we posted almost at the same time about Lenke.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
    Join Date
    Jan 2011
    Posts
    5
    Quote Originally Posted by Pooka1 View Post
    I'm sorry to hear about your pain.

    I read the original thread and am puzzled that you seem to have not had the new segmental instrumentation if you only had fixation at the top and bottom. Yet your surgery was 2004. Who did the original surgery?

    Can you post radiographs?

    Beyond that, if Dr. Hey thinks your case is too complex for him to operate then I think Lenke or someone else like that should evaluate you. They may agree but you need a few more opinions I think. And if nobody will operate then the pain guys have to help you.

    Good luck.
    My Original Surgery was done by Dr. Mcgowen in Winston Salem, NC, I'm not sure if I can post x-rays since they are the prints and I didn't get them on Disk, but I will see what I can do. Thank you for your help.

  6. #6
    Join Date
    Jun 2011
    Location
    New Jersey
    Posts
    16
    Hi Scoligirl, I'm in the middle of looking for new doctors too. I had surgery way back in 1978 and need to have the rest of my spine fused. I saw a Dr Antonacci in Princeton, NJ who I liked a lot and I might get another opinion from Dr Boachi in New York but of course both of those would be very far for you to travel to. I keep reading that Dr Boachi is one of the best and his hospital "Hospital for Special Surgeries" is one of the top hospitals in the country. I've heard that very occasionally some of the doctors will do a phone consult if you can get them images of your x-rays. If you want to consider a doctor out of state, maybe contact them and explain your situation and see if you can get another opionion that way.
    {{Hugs to you}}
    Nancy

  7. #7
    Join Date
    Jan 2011
    Posts
    5
    Quote Originally Posted by organicnancy View Post
    Hi Scoligirl, I'm in the middle of looking for new doctors too. I had surgery way back in 1978 and need to have the rest of my spine fused. I saw a Dr Antonacci in Princeton, NJ who I liked a lot and I might get another opinion from Dr Boachi in New York but of course both of those would be very far for you to travel to. I keep reading that Dr Boachi is one of the best and his hospital "Hospital for Special Surgeries" is one of the top hospitals in the country. I've heard that very occasionally some of the doctors will do a phone consult if you can get them images of your x-rays. If you want to consider a doctor out of state, maybe contact them and explain your situation and see if you can get another opionion that way.
    {{Hugs to you}}
    Nancy
    OrganicNancy,
    Thank you for the information, I sent an email to ask for an appt. to Dr. Lenke in St. Louis and now just have to call to set up a time since they have gotten back to me with the phone number to make an appointment. I will check into those other doctors as well and thank you again!

  8. #8
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    I hope you are able to see Dr. Lenke. In my opinion, he's definitely one of the best. Do a Google search for Dr. Lawrence Lenke and you will see some unbelievable before and after pictures.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

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