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Thread: Would My Spine Be Useful For Research?

  1. #1
    Join Date
    Mar 2012
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    10

    Would My Spine Be Useful For Research?

    I am new here, and this is my first post.

    I am a 58 year old male with severe kyphosis, technically kyphoscoliosis, but the kyphosis outweighs the scoliosis by a long shot. Treatment is not an option.

    See http://www.flickr.com/photos/77824735@N03/6971001285/

    Would there be any organizations that would get value if I donated my body to research? If so, what institutions would be best to donate it to. I'm not planning on dying any time soon, but wanted info for estate planning purposes.

  2. #2
    Join Date
    Jul 2011
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    Welcome to the forum. Who told you treatment is not an option? I've seen more severe curves/kyphosis where Dr. Lenke in St. Louis was able to drastically improve patients' conditions. Dr. Lenke only works with the most severe of the severe. Please explore his site http://www.spinal-deformity-surgeon.com/ and in particular, click on the Patient Stories tab.

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a life I always dreamed of - now pain free!

    http://thebionicachronicles.blogspot.com/

  3. #3
    Join Date
    May 2008
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    reno,nevada
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    Woah....I feel your pain....

    They can fix you you know.....you need the right team. They do amazing stuff these days. It would be worth e-mailing your x-ray to UCSF, Dr Lenke or any other extreme deformity center.

    Welcome to the forum
    Ed
    49 yr old male, now 55, the new 45...
    Pre surgery curves C12,T70,L70
    A/P T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #4
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    Quote Originally Posted by titaniumed View Post
    Woah....I feel your pain....

    They can fix you you know.....you need the right team. They do amazing stuff these days. It would be worth e-mailing your x-ray to UCSF, Dr Lenke or any other extreme deformity center.

    Welcome to the forum
    Ed
    Hi Ed

    I see your preop measurements in your signature, can u share your postop measurements too?

    Warmly
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a life I always dreamed of - now pain free!

    http://thebionicachronicles.blogspot.com/

  5. #5
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    May 2008
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    reno,nevada
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    Doreen

    You know, I never asked. I didnít think it mattered much, was just happy to come out so well.

    If you look at them, you can zoom.....my Lumbar looks like a 25 or 30.

    Both of us are missing the one screw at around T7, isnít that interesting? Since that level was quite a wedge, they didnít have clear trajectory.

    I have 5 Peek plastic spacers in my Lumbar...you cannot see them as Peek doesnít show up on x-rays.

    Glad to see you doing well.

    Ed
    49 yr old male, now 55, the new 45...
    Pre surgery curves C12,T70,L70
    A/P T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  6. #6
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    Jul 2011
    Posts
    516
    Quote Originally Posted by titaniumed View Post
    Doreen

    You know, I never asked. I didn’t think it mattered much, was just happy to come out so well.

    If you look at them, you can zoom.....my Lumbar looks like a 25 or 30.

    Both of us are missing the one screw at around T7, isn’t that interesting? Since that level was quite a wedge, they didn’t have clear trajectory.

    I have 5 Peek plastic spacers in my Lumbar...you cannot see them as Peek doesn’t show up on x-rays.

    Glad to see you doing well.

    Ed
    Are you saying I'm missing a screw at T7? I double checked my xrays as there are some sets that I did not post and can see screws at every level. Maybe the xrays I posted didn't show the entire length of my fusion, but I see them. It is a wonderful thing to be on the other side for sure! :-) I hope gonzorini reaches out to either UCSF or Dr. Lenke to see what his options are.

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a life I always dreamed of - now pain free!

    http://thebionicachronicles.blogspot.com/

  7. #7
    Join Date
    Jul 2011
    Posts
    516

    Severe Kyphosis Video of Dr. Lenke's Talent

    Here is a great video of one of Dr. Lenke's patients who had severe kyphosis of 135 degree. Dr. Lenke ranked this patient as a 10 out of 10 for difficulty (1 being the least difficult surgery and 10 being the most challenging surgery).

    http://www.youtube.com/watch?v=rKvVv...re=relatedcool

    Dr. Lenke performs these surgeries on patients of all ages; there is hope.

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a life I always dreamed of - now pain free!

    http://thebionicachronicles.blogspot.com/

  8. #8
    Join Date
    Sep 2003
    Location
    Northern California
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    6,267
    Quote Originally Posted by Doreen1 View Post
    Are you saying I'm missing a screw at T7?
    I don't see anything missing.

    Gonzorini... A university hospital might be interested. Finding the right person within the organization, however, could be an exercise in futility.

    I agree with Doreen and Ed, your spine could be fixed if you're interested. Where do you live?

    --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.

  9. #9
    Join Date
    Mar 2012
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    10

    Re: Dr Lenke, UCSF and your nice welcome

    I've sent a letter with link to UCSF asking if the back would be useful for research.

    I was unable to find a way to email a message to Dr. Lenke. If anyone has an email for him, I'd appreciate it.

    Thanks Ed for your pictures, the scar isn't as bad as I would have expected.

    Doreen, thanks for the link to the video, that was really impressive.

    Thanks to all who have given me such a warm welcome!

  10. #10
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    Northern California
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    Quote Originally Posted by gonzorini View Post
    I've sent a letter with link to UCSF asking if the back would be useful for research.

    I was unable to find a way to email a message to Dr. Lenke. If anyone has an email for him, I'd appreciate it.

    Thanks Ed for your pictures, the scar isn't as bad as I would have expected.

    Doreen, thanks for the link to the video, that was really impressive.

    Thanks to all who have given me such a warm welcome!
    Do you live in northern California?
    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.

  11. #11
    Join Date
    May 2008
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    reno,nevada
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    2,818
    I do hope you read some of my threads....I donít think I have ever talked about donating, but I have thought about these things before my surgeries mainly due to resulting depression, wondering what was going to happen? Its our main fear.

    I donít think about these things now....

    I think that you owe it to yourself to investigate the options. Discuss with only the best of the best. Discuss and think only the positive. The technology is there, its do-able.

    For me, my surgeries saved my life....a new focus, with new goals....a long life. Now, what am I going to do? LOL

    I would never talk anyone into ANY surgeries, its their 100% decision....I will talk people into learning what there is to offer, that I will do, after all this is a scoliosis/kyphosis forum. Ask any questions you want here.

    I know itís a hard step. I was there... scary stuff.

    BTW, Linda works at UCSF. (smiley face)

    Ed
    49 yr old male, now 55, the new 45...
    Pre surgery curves C12,T70,L70
    A/P T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  12. #12
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    Jul 2011
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    Quote Originally Posted by gonzorini View Post

    I was unable to find a way to email a message to Dr. Lenke. If anyone has an email for him, I'd appreciate it.!
    Lenke's office doesn't regularly use email with patients or potential patients. They will want u to fax your X-rays to them. Call Naomi 314-747-2538 at Lenke's office to introduce yourself and your situation then ask for their fax number.

    Keep us posted on what u find out.

    Warmly
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a life I always dreamed of - now pain free!

    http://thebionicachronicles.blogspot.com/

  13. #13
    Join Date
    Mar 2012
    Posts
    10

    Why I asked about research and not treatment

    I appreciate the concern for me that you folks have. I live in Utah for those of you who asked. UCSF responded to tell me they forwarded my request to their spine department.

    Now to answer why I do not want treatment. I have a weird sense of humor and thought perhaps I'd use a David Letterman style top 10 list of reasons to explain. I could only figure out 6 though, so that will have to do.

    6. I registered with studentdoctor.net to ask what people thought about my x-ray. The thread was terminated promptly because "it was asking for medical advice". So I figured if I didn't want treatment, I didn't want to get busted for that here.

    5. Getting metal in my back would make going through Airports harder.

    4. The metal would make me feel colder during the winter and be uncomfortable.

    3. Can't afford it. No insurance and no money or job at the moment.

    2. Risk of paralysis or other bad things.

    And the number one reason I don't want treatment is:

    1. Aside from the severe deformity, there is nothing wrong with my back.

    I can't imagine why a doctor would give me a referral for treatment for that reason. I do not have pain. I can walk. I breath normally. I look pretty normal when standing. I have no handicap of any kind except for a self imposed restriction on lifting heavy objects. If it ain't broke, I don't want to break it as noted in reason two.

    I'm very sorry for not realizing the picture of my back would generate concern for my well being. You kind people have been through pain and stuff I can't even conceive of. I hope you will forgive my insensitivity.

    As I understand it, a severe curvature like mine is very rare. A doctor at the University of Utah hospital told me that he's never seen a curvature like mine that wasn't handicapped and restricted to a wheelchair. And so, as an exception to the rule, my back may have research value because somehow, miraculously, it didn't interfere with my life function. It occurred to me after seeing all the comments in this thread that with today's technology, they could do quite a bit of research on me without needing me dead. With all the new body imaging they have now, they could get a lot of information without having to open me up. And they can get it while my body is still functioning. A neighbor of mine told me that if your body is ravaged by cancer or the like it isn't useful for donation. Her sister who died of cancer had made provision to donate her body was denied on account of that. So sooner may be better than later. I'm hoping that somehow I can be of help to others who aren't so lucky.

    As for my top six list, I think some of those reasons are misinformation or bad assumptions on my part, so feel free to correct them, as I'm curious as to what the truth is. Particularly, how the cold affects the rods and screws in the winter, what happens in airports, and what financing options are available. Then I'll be in a better position to help others at least.

  14. #14
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    Mar 2010
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    So would you be interested in being part of a "live" study with or without surgery? Finances are always a problem for us poorer (financially) folks. I, fortunately, do have insurance coverage. So for now, if I need surgery I can have it. If surgery is something that you are dead set against (excuse the pun as you started this thread about donating your body), then would you put yourself through testing to see why you are not disabled? Sometimes companies will pay handsomely for human test subjects, but they are usually drug companies. I'm not sure where you would go to be checked out. I can't imagine that information on your spine wouldn't be useful. Like you said, most people in "your condition" are disabled or in a wheel chair.

    I'm really glad you aren't in any pain and can live a normal life. That's really great. I'd even be curious to see if your body is really functioning within normal parameters, for example, lung function, liver and kidney function, etc. since things really do look scrunched up in there.

    I would contact all the big university teaching hospitals to start. I wish you all the BEST!!

    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  15. #15
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    Quote Originally Posted by rohrer01 View Post

    I would contact all the big university teaching hospitals to start. I wish you all the BEST!!

    Rohrer01
    I agree... UCSF and Barnes Jewish Hospital at Washington University where Lenke is located are the best scoli university teaching hospitals.

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a life I always dreamed of - now pain free!

    http://thebionicachronicles.blogspot.com/

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