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Thread: New member

  1. #1
    Join Date
    Jan 2012
    Location
    Georgia
    Posts
    1

    New member

    Hi All!

    Just wanted to introduce myself as I'm new to the board. I've actually been lurking for a couple of years on and off, but have finally officially become a member. I was diagnosed with scoliosis at the age of 15 and wore a body brace for a year. My lumbar curve stabilized itself at 27-28 degrees for years until I had a child at the age of 38. I was in some pain and was rechecked. My curve has progressed to 43 degrees with a slight rotation and I also now have level 1 spondylolithesis. I am contemplating surgery as my doctor told me that once a curves progresses past the 40 degree mark, then it will continue to progress. I am now 43 and not getting any younger. I just feel like I am at a stand still because there are no doctors in this area that I feel are qualified. I contacted Dr Lenke as I've read so many positive remarks about him, but his office told me that I was not a bad enough case for them to take. I don't know where to go from here. On the recommended dr list for Georgia, Dr Horton is the only one listed; however, when I called, he is now retired. Someone told me that Vanderbilt Univ Spine Center was fantastic, but I have to be referred. Anyway, just wanted everyone know that I really have found great comfort in your posts. It helps to know that there are others out there who understand how I feel and what I go through, so thank you.

  2. #2
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,187
    Hi. Welcome and sorry to hear your curve progressed.

    You are the second "incredibly unlucky" person in the last several days whose curve was less than or near 30* at maturity who nevertheless is edging into surgery territory as a young adult. As you might know, being less than 30* at maturity is thought to be quite protective against needing surgery in a lifetime. I am wondering if we have just an incredibly nonrepresentative group here or if that rule is not so tight. Dr. Hey, a surgeon in Raleigh, NC, has blogged a few times about so-called "collapsing" spines that were very subsurgical at maturity but which nevertheless collapsed. They collapsed both in the structural par and in the (formerly) compensatory part in different cases. No safe harbor apparently. I think the researchers may need to revisit this topic to see if there is in fact any Cobb that is protective against progression to surgery territory.

    Anyway, you can find a surgeon from the Scoliosis Research Society's website... enter your state or nearby states or any state if you are able to travel...

    http://www.srs.org/find/

    Then, if you like, ask on the group about anyone who might have used that surgeon.

    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."

  3. #3
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192
    Welcome Ggirl. Sorry your scoliosis has gotten to the point of surgery. You say your choices in GA are limited. Don't know where in the state you're located, but I'd check Dr Hey in Raleigh or Geof Cronen in Tampa. Dr Cronen came highly recommended & did my son's surgery 2 wks ago today. I'd recommend him & Tampa General Hospital in a heartbeat. Please feel free to pm me if you'd like any further info on him. Best of luck w your search.
    LeighAnn

  4. #4
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,245
    Quote Originally Posted by LSKOCH5 View Post
    Welcome Ggirl. Sorry your scoliosis has gotten to the point of surgery. You say your choices in GA are limited. Don't know where in the state you're located, but I'd check Dr Hey in Raleigh or Geof Cronen in Tampa. Dr Cronen came highly recommended & did my son's surgery 2 wks ago today. I'd recommend him & Tampa General Hospital in a heartbeat. Please feel free to pm me if you'd like any further info on him. Best of luck w your search.
    LeighAnn
    I second Dr Hey .
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  5. #5
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,187
    Dr. Hey appears to be a top shelf surgeon who seems to have gotten blood loss and surgical time down to a very small minimum. Here is his blog if you are interested... just the fact that he finds time to blog shows a sense of commitment to the scoliosis community in my opinion. He apparently is a very high functioning person as are all the top surgeons.

    http://drlloydhey.blogspot.com/

    Dr. Cronen is another top guy as far as I know.
    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."

  6. #6
    Join Date
    Sep 2009
    Location
    San Jose, CA
    Posts
    487
    I've also talked to Dr. Hey and he seems like a very great doctor/surgeon. He was very helpful over the phone and offered some of his free time to help me out. Not many surgeons do that.

  7. #7
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,245
    Quote Originally Posted by JDM555 View Post
    I've also talked to Dr. Hey and he seems like a very great doctor/surgeon. He was very helpful over the phone and offered some of his free time to help me out. Not many surgeons do that.
    I did not know that
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  8. #8
    Join Date
    Feb 2011
    Location
    Lilburn, GA
    Posts
    201

    Welcome!

    Hi Ggirl!
    There are plenty of scoli doctors in Georgia! Are you near the Emory Spine Center? They may not be on the SRS list but that doesn't mean they aren't highly qualified. My surgeon was Dr. Timothy Yoon. He was/is excellent. Give them a try. There are many other surgeons there.
    Oh, and I have spondylolithesis too.
    Good luck!
    Marina
    Last edited by Marina63; 01-17-2012 at 04:25 PM.
    50 years old!!!!!
    Wore Milwaulkee Brace 1976-77
    Original curve 36 degrees ( measured in the 70s)
    Advanced to 61 degrees 01/2011
    Surgery 07/11/2011
    Fused T1-L2 (curve now in the 20s!)

  9. #9
    Join Date
    Aug 2011
    Posts
    36

    Yep..the unlucky club

    Sucks for us. I'm having surgery Tuesday. I suspect there are more out there who just don't monitor their curves until something goes really wrong. I only checked it out cause I wanted to get pregnant and I passingly heard you should get it checked out beforehand. Otherwise I would have never bothered. Good luck to you and I also second ( third, fourth?) dr. Hey.

    Quote Originally Posted by Pooka1 View Post
    Hi. Welcome and sorry to hear your curve progressed.

    You are the second "incredibly unlucky" person in the last several days whose curve was less than or near 30* at maturity who nevertheless is edging into surgery territory as a young adult. As you might know, being less than 30* at maturity is thought to be quite protective against needing surgery in a lifetime. I am wondering if we have just an incredibly nonrepresentative group here or if that rule is not so tight. Dr. Hey, a surgeon in Raleigh, NC, has blogged a few times about so-called "collapsing" spines that were very subsurgical at maturity but which nevertheless collapsed. They collapsed both in the structural par and in the (formerly) compensatory part in different cases. No safe harbor apparently. I think the researchers may need to revisit this topic to see if there is in fact any Cobb that is protective against progression to surgery territory.

    Anyway, you can find a surgeon from the Scoliosis Research Society's website... enter your state or nearby states or any state if you are able to travel...

    http://www.srs.org/find/

    Then, if you like, ask on the group about anyone who might have used that surgeon.

    Good luck.
    30 y.o female, very active, considering surgery
    08/03/11 - 54 degrees
    06/2004 - 33 degrees
    Don't like hospitals

  10. #10
    Join Date
    Mar 2010
    Posts
    2,755
    Welcome, Ggirl.

    I am also 43 and have a progressing curve/s. Mine primary curve was much larger at skeletal maturity (37-39*) and I was told that I would eventually need surgery. Now it's in the upper 40's and the lower curve that was in the upper teens or lower 20's is also now in the upper 30's or lower 40's, which means a longer fusion. I had one doctor tell me that I had a collapsing spine, but he's not a scoli doctor. My scoli doc doesn't want to do surgery until I'm in the 60*'s even though I'm in pain! I can't believe it. I was always told that once I reached 40*, I would need it. Now the standard for most docs is 50* and some even higher. It doesn't make any sense to me. I certainly hope you can find a doc that can help you.

    I know there is a lot of recommendation for Dr. Hey. I had a bad experience only because he cancelled my appointment before I could see him. It really upset me. On the up side, he did look at all of my x-rays and measure them and talked to me on the phone for quite a long time. His staff was really good at e-mailing me, too. This was all FREE of charge, so I have to commend him for that. I think, in reality, I had too many weird things going on at the time and I couldn't get insurance approval. I think those were the real reasons that he cancelled me. I was just really angry at the answer his receptionist gave me instead of the medical/financial reasons. He was already talking surgery before I even met him, but he did have my x-rays. There are a lot of people that highly recommend him. I wanted to go there because he seems to be really good at managing blood loss, unlike many other doctor's that I've researched. But then again, I've never seen him post a negative outcome on his blog, but I have read some when I did an internet search. Every doctor has his up's and down's.

  11. #11
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,187
    Quote Originally Posted by patty22 View Post
    Sucks for us. I'm having surgery Tuesday. I suspect there are more out there who just don't monitor their curves until something goes really wrong. I only checked it out cause I wanted to get pregnant and I passingly heard you should get it checked out beforehand. Otherwise I would have never bothered. Good luck to you and I also second ( third, fourth?) dr. Hey.
    I cannot fault people for not checking their curves if they are around 30* or less at maturity. Surgeons AS OF THIS MINUTE are still saying that is generally protective against progression to surgery in a normal lifespan. They are publishing that. Yet we have several folks on this group and on Dr. Hey's blog in that category who are reaching surgical range as young adults. And we have at least one surgeon saying it isn't unusual for a low 30* curve to become surgical.

    I wonder if there is any safe harbor on Cobb angle at maturity. Maybe under 15*. Or under 20*. Who knows. I think pediatric surgeons need to be more skeptical of telling parents and kids that they are out of the wood on these curves for life just so they realize they should be monitored and not forgotten. For a TL curve, that would be critical if it means only one surgery or a countdown to another surgery. For a T curve, it would be critical to monitor any collapse in the lumbar which might be avoided by fusing even a subsurgical T curve. L curves have no reason to rush unless they threaten involvement of the T spine. Or so it seems to this little bunny.
    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."

  12. #12
    Join Date
    Sep 2009
    Location
    San Jose, CA
    Posts
    487
    Quote Originally Posted by mabeckoff View Post
    I did not know that
    Yup. He was one of the very few surgeons who had time to talk to me. Granted he didn't spend too much time to review my films and CT scan to give me a completely accurate diagnosis, I'm still grateful he took the time out of his day to talk to me on the phone and recommend a few things.

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