Page 1 of 3 123 LastLast
Results 1 to 15 of 40

Thread: Hi all!

  1. #1
    Join Date
    Oct 2004
    Location
    Caesarea, Israel
    Posts
    72

    Hi all!

    I am a 26 year old female with a 45 degree primary curve (lumbar) and a 44 degree secondary curve (thoracic).

    Growing up, it was about 35 & 40 but I wasn't braced because we lived in a hot humid climate. I have been told by doctors, "Don't worry, it's not going anywhere". Well, 4 and 5 degrees in 4 years is somewhere! (Not as bad as someI've read on here, thank goodness!) I can feel it beginning to rotate (rib sticking out, kyphosis, arm & leg pain), but my primary care doc and orthopedist say I'm fine.

    Finally, ortho sent me to neurologist to shut me up. He reviewed my Xrays, sat me down and advised me to have surgery. WHAT! That is such a total reversal I am still in shock 3 days later... Now I am waiting on a referral to see the spine surgery expert at University of Washington (Dr. Ted Wagner?)

    I found this site, and am sooo glad to see other adults! I found a couple of boards that seemed to be more oriented toward children. I guess I'm still tying to work through all the info I've been given (or not given.)

    Christine
    Last edited by cowprintrabbit; 10-15-2004 at 10:19 PM.
    Age: 30
    Pre-surgery: upper curve 44 (and kyphosis), lower curve 45
    Post-surgery: under 20, both curves (doesn't even qualify as scoliosis anymore )

    surgery: August 29, 2005
    fusion T5-L3
    Surgeon - Dr. Ted Wagner at University of Washington (Seattle)

    Scar getting to the point where people either don't notice it or think it is from something much less serious!

  2. #2
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    Hi,
    Welcome, to this NSF...This forum has been a godsend for me...It has helped me through all the pre and post aspects of surgery...I have met many wonderful people on board..and hopefully you will to..Read as much as possible..There are two books that I read and also had my family members read..Scoliosis Surgery by Dave Wolpert...who happens to be part of this forum and answers questions periodotically and also Scoliosis Sourcebook who was written by my doctor. Micheal Nuewirth in New York....It makes sense knowing every possible angle about your condition, being prepared when interviewing doctors, and hospitals, and the team that are responsible for your aftercare.....Spend your time reading through the archives of this forum..many question have been asked before, and you'll get different answers ...for sure....
    I am now 3 1/2 months post-op and I'm doing very well...It is a HARD recovery..being 46 and taking care of 5 kids , but this surgery is something that needs to be done if your having constant pain or your curve is progressing or both...The quality of your future is at stake when making this decision...so relax, read and ask questions..I am here to answer anything...good luck....


    __________________
    Connie
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,935
    Hi Christine...

    There can easily be a 5 degree margin of error in measuring curves, and there can be that much difference if one x-ray was taken in the morning, and the next in the afternoon, so please don't rush into surgery. At 26, your curves aren't going to increase rapidly, and it's entirely possible that you'll be able to avoid surgery forever.

    Regards,
    Linda

  4. #4
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255
    Hi Christine,

    Just wanted to echo Linda's sentiment in her post. I am in a similar position to you, I am 28 years old and my curve now measures 47 degrees as opposed to 40 ten years ago. I recently consulted with three surgeons: one recommended surgery, the other two strongly recommended against it, advising me to wait until the curve progressed to 55-60 degrees. I have mixed feelings about "waiting" for surgery, but after having two eminent surgeons advise against, I feel there must be good reasons for it. They both seemed to think that although there was some progression, my curve could remain stable and unproblematic for another decade or so.

    Good luck in learning about scoliosis; there is a lot of info here, hopefully it will help you make decisions. If you would like to correspond privately, my email is lrmb24@hotmail.com.

    Take care! ~Laura

  5. #5
    Join Date
    Oct 2004
    Location
    Caesarea, Israel
    Posts
    72

    waiting...

    As for waiting - does extreme, life-distracting pain make a difference? Not trying to be argumentative, just trying to learn as much as I can before my referral. (You know how your mind circles when you have to stall...) I no longer mind being "crooked" (I'm married - who am I trying to impress ), so if it weren't for the pain I wouldn't be considering it since the curves are relatively small and balance each other out.

    My chiropractor has been the first one to actually walk through my xrays with me, and even 4 years ago, my vertebrae were starting to show arthritic changes... Does everyone with scoliosis
    have vertebrae that are taller on one side or the other, or does that make mine congenital as opposed to ideopathic? None of the "real doctors" has commented on this - must remember to ask them. Any other questions I need to ask?

    P.S. Connie, thanks for the book reccomendations - my local library has the one by your doc in stock, I will run out and grab it when they open.

    Christine
    Age: 30
    Pre-surgery: upper curve 44 (and kyphosis), lower curve 45
    Post-surgery: under 20, both curves (doesn't even qualify as scoliosis anymore )

    surgery: August 29, 2005
    fusion T5-L3
    Surgeon - Dr. Ted Wagner at University of Washington (Seattle)

    Scar getting to the point where people either don't notice it or think it is from something much less serious!

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,935
    Hi Christine...

    Pain does make a difference. Only you can tell if it's enough to warrant surgery. I will warn you, however, that the surgery itself has a good likelihood of causing new pain. Before you jump into surgery, be sure you've tried different ways to address the pain.

    In structural scoliosis (which is the type that almost all of us have), the vertebrae become wedge shaped. You can see a good drawing of what they look like here:

    http://www.scoliosislinks.com/AlternativesDontWork.htm

    Regards,
    Linda

  7. #7
    Join Date
    Oct 2004
    Location
    Originally from New Orleans. Now live in the mountains of southwest Virginia.
    Posts
    20
    Hi Christine,

    My scoliosis was diagnosed when I was twelve. I had just started my first period so the Doctor said that I would soon stop growing therefore the scoli would not worsen.

    Boy was he wrong!

    As I've gotten older (I'm 45), gravity is taking it's toll and literally my spine was collapsing into a tighter and tighter "S" curve. My breathing and digestion were being impaired because of the mechanics of the loss of space in my body.

    I had surgery this past July 30th and I'm happy it's behind me. Recovery comes with it's own annoyances but nothing like having a 5'3" body smushed into a 4'11" one. That's right...after surgery, I gained (a bit over) 3 inches in height. The shortness of breath is slightly improved at this point and I've had no problems with reflux since surgery.

    So, what I'm saying is that aging and gravity will worsen your spine. I also, somewhere along the way, developed degenerative joint disease in my lower back. (OUCH!)

    Good luck with your referral. Try to interview more than one surgeon, too.

    Denise

  8. #8
    Join Date
    Oct 2004
    Location
    Caesarea, Israel
    Posts
    72
    Denise - that's funny that you mention breathing and digestion, because all my life I've been told that my shortness of breath with exercise and numerous digestive problems couldn't possibly be connected to my scoliosis. I was 5'8" in High School, now if I see the doc in the AM and stretch as high as I can when they measure me, I'm 5'6 1/4".

    What degrees were your curves? Mine are only 44 and 45, but I guess it's better to have it done before it gets worse and while I still have youth on my side...

    I called today to check on my referral, and the neurologist's office had sent it to the wrong place within UW. I had them fax it over this time, and now have to wait till Wednesday to call and try to get an appointment. And work is breathing down my neck for me to get the appointment set so they can order the temp... deep breaths....

    I don't know if I have an option to see more than one surgeon - does anyone else have experience going through Group Health Cooperative?
    Age: 30
    Pre-surgery: upper curve 44 (and kyphosis), lower curve 45
    Post-surgery: under 20, both curves (doesn't even qualify as scoliosis anymore )

    surgery: August 29, 2005
    fusion T5-L3
    Surgeon - Dr. Ted Wagner at University of Washington (Seattle)

    Scar getting to the point where people either don't notice it or think it is from something much less serious!

  9. #9
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255

    more than one surgeon

    Hi Christine,

    Just a quick post. Do try if you can to get at least one second opinion. I wasn't at all convinced of the necessity of this until I had two very different opinions... It's a big surgery and getting more than one opinion can help you feel confident in your decisions.

    Have you taken a look at Dave Wolpert's book on surgery (which you can get online from this foundation)? It's really great.

    Laura

  10. #10
    Join Date
    Oct 2004
    Location
    Originally from New Orleans. Now live in the mountains of southwest Virginia.
    Posts
    20
    Hi Christine,

    I think my curves were pretty extreme...80'ish and 60'ish. Funny that I don't remember those numbers.

    Interviewing more than one surgeon is important. You need to find the one who works right for you. For instance, the one your insurance sends you too may not be the best...he may not even be any good(they are out there). I think you are entitled to find one best suited to you. Call you insurance co.'s customer service and find out exactly what you can do.

    Once you get names...toss them onto this forum for some feedback.

    Also, I'm not sure that all surgeons will charge for consults. Can't hurt to ask.

    Take care,
    Denise

  11. #11
    Join Date
    Oct 2004
    Location
    Caesarea, Israel
    Posts
    72

    Re: more than one surgeon

    Originally posted by lrmb
    <snip> Have you taken a look at Dave Wolpert's book on surgery (which you can get online from this foundation)? It's really great.

    Laura
    I ordered the online version and am going to print it out tomorrow
    Age: 30
    Pre-surgery: upper curve 44 (and kyphosis), lower curve 45
    Post-surgery: under 20, both curves (doesn't even qualify as scoliosis anymore )

    surgery: August 29, 2005
    fusion T5-L3
    Surgeon - Dr. Ted Wagner at University of Washington (Seattle)

    Scar getting to the point where people either don't notice it or think it is from something much less serious!

  12. #12
    Join Date
    Oct 2004
    Location
    Caesarea, Israel
    Posts
    72

    Finally have an appointment!

    Well, I got the call on my referral yesterday (a week early!) and I called and made the appointment - 12/10/04. I've been reading everything I can get my hands on, and talking to some people, too. Supposedly, this surgeon is the best around this area; and UW is supposed to have a really good hospital.

    It turns out my husband is a little freaked by this whole thing, but I'm going to try and get him to go to the appointment with me. I think if we stick together, we'll be able to be there for each other a lot better...

    Oh, and I think I'm going to throw in the chiropractor towel. It doesn't seem to be helping my back pain or my migraines. I'm almost ready to forget the physical therapy, too, until I see if I'm going to have the surgery or not.

    Christine
    Age: 30
    Pre-surgery: upper curve 44 (and kyphosis), lower curve 45
    Post-surgery: under 20, both curves (doesn't even qualify as scoliosis anymore )

    surgery: August 29, 2005
    fusion T5-L3
    Surgeon - Dr. Ted Wagner at University of Washington (Seattle)

    Scar getting to the point where people either don't notice it or think it is from something much less serious!

  13. #13
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,935
    Hi Christine...

    If you can't take your husband, I'd encourage you to take someone else with you. It can be a very intimidating experience, and it's nice to have a second set of ears that aren't so overwhelmed.

    Regards,
    Linda

  14. #14
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255
    Hi Christine,

    I would also advise taking somebody with you, and if possible getting your significant other to take the plunge. Dave Wolpert suggests in his book to get your important support network to read the book, and I did this with two good friends. After reading even part of the book, they felt much more involved, and began to appreciate what having this surgery meant to me and for my life (and our lives). In the case of my partner, I also felt that I had been talking on and off about the surgery for a long time, but we had never sat down and focused on it without distractions. We decided to set aside a time the night before the appointment, by which point he would have looked at the book and we could talk in detail. This strategy worked well because we both knew there was designated time to talk and that before and after the time I would try my best not to obsess about it.

    The first time I saw a surgeon I was unprepared, and so I didn't think of my questions (about a hundred of them!!) until I had left the hospital. For my second opinion I spent a lot of time noting down questions in one place when they came to mind, then before the appointment I compiled them all in a long list. I sat with my partner and we went through the questions; we agreed that I would do the main part of the talking, and he would make notes and interject if I forgot anything or if he thought that something needed clarification. I've heard that people can forget a lot after they leave the appointment, so it's helpful to have somebody else there, and maybe make notes.

    For my third opinion I could not have my partner there, but a friend took time off work to attend with me. When I got to the end of the appointment, and the doctor was about to wrap up, I asked her had I left anything out--and, sure enough, I had. So she got the opportunity to ask the question.

    This might seem a bit obsessive on the planning, but I for one am always a bit freaked out when seeing surgeons, and it was a great morale booster to have somebody else know what was (or should be) going on.

    All the very best with your appointment, and hope this helps.
    ~Laura

  15. #15
    Join Date
    Jul 2004
    Location
    Dallas, TX, USA
    Posts
    114
    hi, everyone! it's a good idea to have your significant other be part of initial meetings with the surgeon; it just seems fair considering how much time and effort that person will expend taking care of you during and after your hospitalization. i include my husband in all my doctor's visits; he is a very interested party! good luck with your fact finding....
    Sue


    Milwaukee Brace from ages 8 - 16
    T36 degrees/L56 degrees Pre-Op
    Fused T3 - S1
    Surgery done Sept. 15, 2004
    Dr. Robert G. Viere
    North Texas Spine Care @ Baylor

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •