Page 2 of 7 FirstFirst 1234 ... LastLast
Results 16 to 30 of 102

Thread: CA bound

  1. #16
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Thanks for the explanation Melissa. Sorry, I didn't mean to be nosy, I was thinking it might be an insurance issue or something! I'm glad that you can see that this is the beginning of getting things fixed now. So awful that you've had to go through all this.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  2. #17
    Join Date
    Dec 2009
    Location
    NC
    Posts
    791
    Quote Originally Posted by JenniferG View Post
    Thanks for the explanation Melissa. Sorry, I didn't mean to be nosy, I was thinking it might be an insurance issue or something! I'm glad that you can see that this is the beginning of getting things fixed now. So awful that you've had to go through all this.
    No problem . Glad to explain

    Melissa

  3. #18
    Join Date
    Dec 2009
    Location
    NC
    Posts
    791
    Can't get the MRI appt monday as they are all booked. I will have to do that in NC as well.

    Melissa

  4. #19
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Quote Originally Posted by Doodles View Post
    Melissa--
    Sorry that you have more tests to be done but sounds like it is necessary. The myleogram isn't so bad; my first opinion doctor had one done. The main thing is to lay flat for the next several hours. I definitely did and avoided the headache that can occur. Follow those instructions. Can't remember for how long but it's important to do. Good luck. Janet
    Janet,
    I agree that the myelogram is not so bad. I have had two of them and was told each time to keep my head elevated after the procedure and to sleep the first night with two pillows. The idea is to keep the dye from getting to the brain. I never got a headache from either one.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  5. #20
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Melissa, I hope you enjoy your move to California and that you can get the help you need there. I am enjoying North Carolina and was relieved that the tornadoes missed us by about 15 miles. Best wishes to you.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  6. #21
    Join Date
    Dec 2009
    Location
    NC
    Posts
    791
    Well, I got the MRI done today as Dr Bederman called and they fit me in today.

    Can someone explain to me what Dr Bederman said to me in English?

    "Melissa,
    I have looked at your xrays and MRI. I will need the final report from the radiologists. Looks like you have had an injury to the spinal cord and there is still some compression at the C5-6 area. However, you have a significant curve at the upper thoracic spine (around T1) which was above your fusion. The corpectomy you had at C6 has shifted since it lies just above this unfused curve and was in an unstable area.
    I will discuss this with my partner who is an expert in cervical problems. Ultimately, I feel you will require extension of your fusion up to your cervical spine to include this curve and possibly a repeat decompression in the front of your neck. I will also need to look at the CT myelogram to have a better look at your neck and lower back.

    Dr B"

    Thanks

  7. #22
    Join Date
    Dec 2009
    Location
    NC
    Posts
    791
    Can someone explain to me what Dr Bederman said to me in English?

    "Melissa,
    I have looked at your xrays and MRI. I will need the final report from the radiologists. Looks like you have had an injury to the spinal cord and there is still some compression at the C5-6 area. However, you have a significant curve at the upper thoracic spine (around T1) which was above your fusion. The corpectomy you had at C6 has shifted since it lies just above this unfused curve and was in an unstable area.
    I will discuss this with my partner who is an expert in cervical problems. Ultimately, I feel you will require extension of your fusion up to your cervical spine to include this curve and possibly a repeat decompression in the front of your neck. I will also need to look at the CT myelogram to have a better look at your neck and lower back.

    Dr B"

    Thanks[/QUOTE]


    Also. should I go and get a second opinion ? Is so, where and with what Doctor?


    Melissa

  8. #23
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Hi Melissa, I saw this yesterday but like many I guess, can't fully explain it. I hope someone who has an understanding of these things is able to give you a better explanation. At this stage, I think Dr. Bederman might be on the right track but I am no expert.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  9. #24
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Melisa,
    I am SOOO sorry you are going through this!!! Sure seems like you can't catch a break. At any rate, I re-read the doctor's message several times and tried to put my interpretation in (below). In a nutshell, I think (and this is totally my opinion) he is saying that your neck surgery was botched--that it may have caused an injury to your spinal cord (or the injury could have been caused by something else), and that it should not have been done above an unstable scoliosis curve in the top of your back. It looks like he thinks you will need more surgery on your back to fuse up to your neck. And possibly your neck will need additional surgery to stop the nerve pinching that I am assuming is causing you pain as well as possibly weakness. I would want to know more about what he thinks is the spinal cord injury and whether he thinks it is fixable. I am glad you've found a really good doctor, and despite this unsettling report, I think you may finally be on the right track! I will keep sending good thoughts your way. And I am also wondering what he said about your broken rod(s)?

    Best,
    Evelyn

    MY INTERPRETATION IN CAPS:

    Quote Originally Posted by mbeckoff View Post
    Well, I got the MRI done today as Dr Bederman called and they fit me in today.

    Can someone explain to me what Dr Bederman said to me in English?

    "Melissa,
    I have looked at your xrays and MRI. I will need the final report from the radiologists. Looks like you have had an injury to the spinal cord (WOULD WANT TO KNOW WHAT HE THINKS HAPPENED TO CORD AND WHETHER IT IS FIXABLE) and there is still some compression at the C5-6 area. (NERVES GETTING PINCHED IN THE LOWER PART OF YOUR NECK) However, you have a significant curve at the upper thoracic spine (around T1) (SCOLIOSIS IN THE TOP OF YOUR BACK) which was above your fusion. The corpectomy you had at C6 (THE OPERATION YOU HAD ON YOUR NECK THAT TOOK PART OF THE VERTEBRAE/DISK OUT) has shifted since it lies just above this unfused curve and was in an unstable area. (BASICALLY, THE NECK OPERATION ISN'T DOING WHAT WAS INTENDED BECAUSE IT IS ABOVE A SIGNIFICANT SCOLI CURVE)
    I will discuss this with my partner who is an expert in cervical problems. Ultimately, I feel you will require extension of your fusion up to your cervical spine (THINKS YOU WILL NEED TO FUSE UP TO YOUR NECK, BUT NEEDS TO REVIEW MORE) to include this curve and possibly a repeat decompression (POSSIBLY MORE NECK SURGERY TO GET RID OF THE PINCHING THAT MAY BE CAUSING YOU PAIN OR WEAKNESS) in the front of your neck. I will also need to look at the CT myelogram to have a better look at your neck and lower back.

    Dr B"

    Thanks
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  10. #25
    Join Date
    Mar 2009
    Posts
    1,090
    Hi Melissa,

    I hope more forum members will post comments and recommendations to help you in any way they can. Perhaps it's just the Easter weekend and everyone is tied up.

    I have not followed your story much, and I am not a medical professional in any way, shape or form, however, I will give you my gut feel and how I would respond if it was one of my loved ones in the same situation.

    I think Dr. Bederman will need to give you some really convincing reasons why you should be fused from within your cervical area to your sacrum. This is going to cause a big change in your life, I would think. Linda has posted before that people with that kind of fusion can be unhappy campers and significant counseling should be provided. I assume the counseling would be to help you determine if it's something you can live with or not and whether or not to proceed with such a surgery. This is a major decision.

    I would absolutely get second and third opinions with something like this. My first choice would be to try and get seen with Dr. Lenke in St. Louis. If he doesn't have time in his schedule, maybe he can look at your x-rays and other studies and see if he agrees with Dr. Bederman's recommendation.

    I would also contact your prior surgeon and see what he thinks. He may have left that top curve deliberately unfused to give you some flexibility to move, knowing that the curve was there. He may think it's not an issue or at least better to wait as long as possible to do something about it. If I remember from way back, it seems like you were saying you were originally going to be fused T1-Sacrum and instead were fused T-2- Sacrum. There may be a good reason for that. Is the curve progressing now?

    Did the same surgeon due the cervical surgery or was that someone else? Was there fusion involved with that cervical surgery or something else? Do you have unbearable pain in your neck?

    My own thinking is to get the non-fusion fixed immediately and hopefully get relief from that pain. Then spend quite a bit of time getting these other opinions from the best doctors you can afford. I would NOT be in a rush to get any part of Dr. Bederman's plan done other than fixing the non-fusion. Make sure at the consults the doctors describe to you what your quality of life will be after such a procedure. They should be upfront with you. You are the one who will be living with anything done, after all.

    If cervical spine surgery is required, I would recommend finding some surgeon who specializes in motion-preservation procedures and see if they have anything to offer. I have heard that they have just come out with a cervical device to preserve motion in the cervical spine. I'm thinking someone like this, although I have no firsthand knowledge of him. I suspect he'd also be a good person to go to for a second opinion, especially since you have a spinal cord injury. Yes, he's even a member of the Scoliosis Research Society! :-)

    http://www.cedars-sinai.edu/Bios---P...ohnson-MD.aspx

    Let us know how it goes.

    Good luck and God bless.

  11. #26
    Join Date
    Dec 2009
    Location
    NC
    Posts
    791
    Thanks to everyone who responded. I am so confused however about what path to follow

    Melissa

  12. #27
    Join Date
    Mar 2009
    Posts
    1,090
    I would suggest you call Dr. Lenke's office and Dr. Johnson's office and see if they can fit you in on short notice. Tell them you've had a scoliosis surgery from T2-Sacrum, you have a fusion failure, you're in pain, you're being recommended a revision surgery from the cervical spine to the sacrum with other procedures in addition and would they be willing to provide a consult with you on short notice.

    I would start from there and see what they have to say. If they are not able to fit you in the schedule, for some reason, ask them if they could recommend a doctor for you to see for your situation.

    I would then ask lots of questions to Dr. Bederman when he eventually gets in touch with you with his final recommendations. I would suggest that someone, such as your husband, accompany you to help remember things and ask questions for you if necessary.

    Make sure you get copies of all the tests and x-rays that you've had done so you can just take them to other appointments and they don't have to do them again!
    Last edited by Ballet Mom; 04-23-2011 at 10:00 PM.

  13. #28
    Join Date
    Mar 2009
    Posts
    1,090
    Hi Melissa,

    Here's Dr. Rick Delamarter. He is Dr. Johnson's boss at Cedars-Sinai. He looks like he might be even a better great surgeon option for you. The really great thing about him is not only is he a leading researcher on non fusion technologies and motion preservation technology, he's an older guy who has probably seen every situation there is to be seen (many times over). Not only that, since this group of surgeons is out here in Los Angeles, you would be close by to your surgeons when you finally get moved out here.

    http://www.cedars-sinai.edu/Bios---P...marter-MD.aspx

    "A board-certified orthopaedic surgeon, Rick Delamarter, MD is a pioneer and world leader in artificial disc replacements, motion preservation technology, non-fusion technologies and minimally invasive spine surgery. He is a leading researcher on spinal cord injury, the use of growth factors for fusion and the use of stem cells to repair degenerative disc disease. He was among the first to use growth factor tissue engineering for intervertebral discs, multi-level artificial disc replacement for both the lumbar and cervical spine, and other novel medical devices for dynamic stabilization and minimally invasive spine surgery."

    I think this group is where I would take my daughter for a consult if necessary. They are very impressive and at the forefront of the newer research and technologies. Thanks for helping me find them! :-)

    Hope you have a great Easter.

  14. #29
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi....

    Sorry I wasn't around yesterday to respond. Evelyn did a fairly good job of interpreting what Dr. Bederman said.

    I can't tell exactly what has already been fused, but it sounds like you have very few unfused segments. Am I correct that your scoliosis fusion is T2-S1 and that your cervical fusion (corpectomy) was just C6? It sounds like Dr. B is suggesting that you might need to be fused at T1, which is just one more segment. However, I'm also guessing that you'll need to be fused at C7, if you're not fused there already, as leaving one motion segment between two fusion masses will almost certainly result in degeneration at that segment. If you need to be fused at C7-T1, that would be just two more segments.

    BalletMom is incorrect when she stated that I said people with this kind of fusion were unhappy. I suspect she misinterpreted a comment about people who were fused from C1-S1. You will still have a lot of unfused segments in your neck, which will allow you to do things like drive a car.

    While I always think it's a good idea to get another opinion, I would be careful about seeing a lot of surgeons who are not spinal deformity surgeons.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  15. #30
    Join Date
    Mar 2009
    Posts
    1,090
    This is obviously good news, if I misunderstood.

    If the Los Angeles surgeons aren't capable, I guess I would go with Dr. Lenke then for a second opinion. I would want someone with many years of experience to give me an opinion as Dr. B seems to be a relatively newer spine surgeon in his practice.
    Last edited by Ballet Mom; 04-24-2011 at 05:41 PM.

Posting Permissions

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