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Thread: Two spinal cords, scoliosis and surgery -

  1. #1
    Join Date
    Jan 2013
    Posts
    13

    Two spinal cords, scoliosis and surgery -

    HI there my name is Teresa and I have had scoliosis all my life. I was first diagnosed at age 12 with a 30 degree upper curve. I was told then I needed surgery with Harrington rods and lead pins. My father did not allow. I was never braced but I did back exercises all my life up till a couple years ago. I am now 46 years old and 2 years ago was rear ended and then my curve took off to now being 53 top and 43 bottom with a neck curve as well. That mind you was then second car accident. The first one caused me to go into surgery and have an ACDF with my C5/6 disk. Forward to now, I find out from a scoliosis surgeon, who looked at my new MRI, that I have two spinal cords. They start as one but then divide. He said they are complicating everything but he has seen it before that is why he recognized it where as no one prior did. I am scheduled for surgery on February 15th and scared to death. I am having numbness and loss of strength in my right leg , hip and groin. I am told this is the beginning of is what to come if I don't take care of it now. Surgery being the only thing left. I have tried PT, chiro, dry needling and yoga. Nothing has worked nothing has helped with pain either. It is just getting worse. I am looking at your stories and trying to find someone who may have a double cord. Is there anyone who has double cords? Is there anyone who knows my doctor from CT/NY, Dr. Taddanio? My height, well it use to be 5'8 and now I am 5'6 1/4. I do not know if I will gain height or not. I am not sure that being on the table 8-10 is good either. I have to also have my neck operated on too I found out. I am petrified.

    I am the wife of a Sailor who is currently over seas and as is my son who is a Marine. My daughter is in the Peace Corp and no one can get home it seems for the surgery. My husband is trying to leave early being he is suppose to stay till the end of Feb.

    Thank you for reading and I hope I hear from anyone soon even if you don't have a double cord like me.

    Thanks

  2. #2
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    I haven't heard of that before. Good luck with your surgery
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  3. #3
    Join Date
    Mar 2010
    Posts
    2,769
    Hi, Teresa.

    I don't have your same problems, but wanted to welcome you to the forum. I have an odd curve type, but no double cord. My primary curve goes into my cervical spine as well. My surgeon asked me how I hold my head up! Well, the actual curve is from T1 - T6 or so. I've developed another curve so I have a double major instead of a single major curve. My neck hurts all of the time, though. I get Botox to help with the muscle spasms and pain from my curvy neck and upper back.

    Do you have any family or friends that can help you after surgery? I'm guessing there'e no way you can put it off until hubby comes home. Well, it was nice "meeting" you.

    Take care.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  4. #4
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    Teresa-- welcome from me also. There have been others who had to recover on their own with no one at all and you (or we can help you) can do a search for how they dealt with getting prepared. TXMarineMom is one of them. She had an extensive list and did quite well. Anyway, it is do-able if you plan ahead, but it would be easier if you have someone to help you. I can't be of help about the double spinal cord. You are an interesting case. We are glad you have you on board here and wish you all the best.
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  5. #5
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,262
    I would like to welcome you as well
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  6. #6
    Join Date
    May 2009
    Posts
    3,745
    hi Teresa
    i see Dr Taddiano is listed in White Plains on the SRS list on this
    website...
    i personally have never heard of him...
    i am a native New Yorker who moved to northeastern CT almost
    6 years ago when i got married...i also was in CT for undergraduate
    work at Southern, but went back to Manhattan after that...
    i only know of the NYC guys...Boachie, Lonner, Neuwirth, Errico,
    and a few names newer to me...like Cunningham and others at HSS...

    just wondering if you got second opinions from any of the top NYC
    surgeons...??
    and also, is there a reason you went to a White Plains doctor...?

    best wishes...
    jess..

  7. #7
    Join Date
    Jan 2013
    Posts
    13
    Thank you!

  8. #8
    Join Date
    Jan 2013
    Posts
    13
    I went to the doctor in NY because I could not find one here in CT. He does have an office in Stamford and operates out of Stamford Hospital as well. It is 2 hours out but worth it. My neurosurgeon is from central CT and said he wants to operate on my neck and lower spine. I just thought its best to have everything done by one doc. I have not gone to others and feel comfortable with this doctor. Having my family gone is difficult. My husband is trying to come home early for the surgery but may not be able to. He said it has to be life or death. Anyhow, thank you so much for the warm welcomes and wishes!!

  9. #9
    Join Date
    May 2009
    Posts
    3,745
    hi Teresa
    when i looked up (on internet) what you describe with your spinal
    cord, it states what a rare condition it is....so i am not sure what responses you will get in terms of others in your same condition...
    i was mainly asking about getting another opinion just to see if
    another surgeon agrees with what Dr Taddonio says is needed...
    (not to knock him)...some patients feel better knowing surgeons
    agree on where fusion is needed, etc...
    you are comfortable with him, and that is a big part of what is important...
    i really hope the powers that be can see fit to allow your husband to
    come home to be with you thru the surgery...

    i am wondering, only as a back up, if there are any church people
    who can offer any support to you....
    a hospital social worker also would be a good person to talk to
    in terms of help for you after your surgeon allows you out of rehab...
    i am assuming you would be sent to rehab, as that is usually done for
    anyone living alone for any reason...
    i am trying to think of worst case scenario back up support...
    but i hope your husband can come home for a large portion of your
    recovery...

    best wishes...
    jess

  10. #10
    Join Date
    Jan 2013
    Posts
    13
    Hi Jess and thank you for the advice. I do have a therapist I use for the deployment as it has been over a year now that my husband has been gone. My insurance is amazing and so I will see how long I can stay at least till my hubby gets home. I know the internet does not off much about the condition and yes it is rare. It was told that only a trained eye would see it and this MRI is being looked at by another radiologist to generate a new report. I will send this new report to the original radiologist so that maybe in the future they can be on the lookout for such unique individuals as myself. I know a positive attitude is best and been there before when I fought my thyroid cancer several years back prior to my car accidents. This though for some reason seems to scare me to death.

    Teresa

  11. #11
    Join Date
    May 2009
    Posts
    3,745
    Teresa, when it comes to being terrified of the surgery,
    you have a great deal of company with that!
    i am one of the people who has put off the surgery...since
    2007 at least...
    there is much written here on forum about how hard the
    decision to go ahead with surgery is....even with people in
    bad pain, even those with threat from scoli to heart and lung function...
    it is a tough decision to make!

    jess

  12. #12
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,120
    Hi...

    I think it might be a good idea to put off the surgery until your husband is home. It's not that far away, and the surgery is not urgent.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  13. #13
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    974
    Welcome Teresa!

    I agree with whoever suggested you should get a second opinion. It doesn't mean you have to go to that doctor for the surgery. It's such a huge, life-changing surgery that you want to be absolutely sure you are doing the right thing. Since you are nearby, I would think you'd want to go to Dr. Boachie at the Hospital for Special Surgeries in New York, or someone else comparable. Also, I agree with Linda, our moderator, that it probably would be best to wait until family is home to take care of you.

    It is a difficult decision, and all of us are terrified before-hand. This forum helps a lot with information and helping you get prepared. If you haven't already, you might want to get the book: Scoliosis Surgery, The Definitive Patient Reference, by David Wolpert. It is extremely helpful for understanding the surgery and what you will need to prepare.

    Best wishes,
    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  14. #14
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Welcome to the forum. If at all possible, I would wait until your husband can be home. I know there are many who have recovered on their own, and outside help can be hired when necessary, however, the support of a close family member sure helps through the rough times. I know you trust your surgeon, but a seond opinion is sometimes a good idea. Best of luck and keep in touch with us on the forum. You'll find a lot of answers to questions and support from others in similar situations.
    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/

  15. #15
    Join Date
    Jan 2013
    Posts
    13
    I appreciate all your advise. As far as waiting well I wake up every day with more new symptoms and more numbness and weakness and as of yesterday it is now into my groin which is quite disturbing. The doc is not sure if the damage with the cords being involved in the curve is causing permanent damage and I wont know until after the surgery. The thing is I fell a couple weeks back and since then I have more new symptoms and am feeling worse day by day. The doctor had me scheduled asap as this is something I should not wait to do. I heard the urgency in his voice and that this is serious enough to do it right away.

    My husband is doing his best to be home for the surgery. I will know this week sometime if he able to do so.

    Thanks again everyone!

    Teresa

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