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Thread: Would My Spine Be Useful For Research?

  1. #16
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    maybe i read the post wrong, but i took it as being from someone who is not really
    serious...
    pardon my sensitivity...but i am entitled to my feelings...
    and i feel like he is not interested, not serious...
    i do not need a top 10 list for a problem i take very seriously...
    nor did i even find such a list clever, original, or amusing...
    the pic he posted i personally found shocking..
    and i thought it was from someone sincerely interested in connecting...
    now, i do not...

    and that is my own personal opinion...period.
    so yes, i did find it very insensitive

    jess

  2. #17
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    Sep 2003
    Location
    Northern California
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    Gonzorini...

    Glad you're doing so well. It never ceases to amaze me that there are people like you, with a huge curve, who are pain free, and there are people with very small curves with severe pain. Considering how similar we are genetically, that's a very big range.

    My only advice to you would be to get yourself in a situation where you can get health insurance. There's no guarantee that your back won't start becoming a problem in the future, and as far as I know, there's no way to get treatment without at least having Medicaid or Medicare. There are no studies that pay for a patient's standard of care (X-rays, examination, or surgical treatment).

    May I ask your age?

    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.

  3. #18
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    2,673
    Quote Originally Posted by jrnyc View Post
    maybe i read the post wrong, but i took it as being from someone who is not really
    serious...
    pardon my sensitivity...but i am entitled to my feelings...
    and i feel like he is not interested, not serious...
    i do not need a top 10 list for a problem i take very seriously...
    nor did i even find such a list clever, original, or amusing...
    the pic he posted i personally found shocking..
    and i thought it was from someone sincerely interested in connecting...
    now, i do not...

    and that is my own personal opinion...period.
    so yes, i did find it very insensitive

    jess
    Jess,
    I didn't take it that he was disinterested in connecting, rather more interested in why he doesn't hurt. He may be reaching out for help "just in case" since he has no insurance or finances to cover a potential surgery.

    My grandmother survived scleroderma. Many teaching universities contacted her to find out what she was doing as not to die. She had her regimen of herbal things. She eventually died of breast cancer and not the scleroderma. I personally took offense to the fact that she wouldn't be seen by them, as she may have held a potential key to helping other scleroderma sufferers. These hospitals offered to pay her just to study her and find out what she was doing differently and she said NO. They weren't going to try to "change" anything about what she was doing.

    With this in mind, I find it very noble for a person with a severe deformity to offer himself willingly to be studied in order to help others with similar conditions.

    Just my take on it.

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

  4. #19
    Join Date
    May 2008
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    reno,nevada
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    I can understand your feelings on surgical intervention.....and its mainly about the pain I guess. If you donít have pain, which is hard to believe, I guess your fine for now..... Not having insurance in todays world of medicine is a bit scary since the costs of things are so high that the subject deserves its own Letterman top ten list! (smiley face) I have come across patients with HUGE curves that seem to maintain without surgery. For those of us who have had major pain events, we find that amazing.

    When were you diagnosed? and was that in Utah? The poor docs back in the old days were desperate in trying to help us....its been quite a history in the making....just wondering how that went? They must have been shaking their heads.

    We have had discussions about cold rods here. Your core temp doesnít vary much, its not much of an issue. One of the things thatís common is what I call ďbear trapsĒ. The tightening of the muscles in the upper spine due to scar tissue. I think its nerve cell expansion from the reduction of atmospheric pressure....and it only seems to happen to me during winter storms, like right now.

    I have flown through many airports without triggering devices. If they keep the sensitivity settings up too high, they pick up pennies on everyone.... They are looking for objects with more mass...

    When I come out to Utah, which will probably be in the near future, we will have to tip a few beers....internet communication is difficult. Iím a skier. Dreams of powder are always on the mind......

    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

  5. #20
    Join Date
    Mar 2012
    Posts
    10

    More info...

    Thanks for your answers. Especially Ed with the specific answers on your experience. I really would have thought the cold would have affected it more, and my wife did wonder if it would sense weather as you mention.

    I am currently training in Networking and the internet to work where my daughter works, and they have health insurance. The past couple years I've been in a zombie fog due to medications, and recently it has cleared up by switching my prescriptions. I got the x-rays a couple weeks ago as I was applying for disability and had to be able to document the not-lift-heavy-stuff part. I'm not pursuing that now that I feel so much better.

    I am 58 years old. I was born with the condition. Looking forward a bit, I don't know how bone loss will affect my configuration and I may very well have problems in the future. So I'd really like to know more about my condition and see if my would be of any use in helping others. I'm not too worried about radiation and would be willing to take a few hits for the cause. In my correspondence to UCSF I did mention I don't have problems and asked if that investigating my spine would be of any use. I've also sent a similar request off to the Scoliosis Research Society at their info@srs.org address. Dr. Lenke is on the board of directors there.

    In the meantime I've been going through Wikipedia to get an overview of kyphosis, scoliosis, kyphoscoliosis and stuff like lorderosis, lumbar, sciatica, Cobb angles and the various treatments. And yes, I take Wikipedia with a grain of salt, but I figured I'd get a good overview of my back as it relates to curvature.

    I was a bit confused about the Cobb Angle. Does the angle get smaller or bigger the more normal your back is?

    Also, do I understand correctly that the kyphosis is the 90 degree hard turn to the anterior (front) and lorderosis is the lumbar vertebrae curving back to normal?

    Thanks again for your kind welcome and answers.

  6. #21
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    Sep 2003
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    Northern California
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    Quote Originally Posted by gonzorini View Post
    Thanks for your answers. Especially Ed with the specific answers on your experience. I really would have thought the cold would have affected it more, and my wife did wonder if it would sense weather as you mention.

    I am currently training in Networking and the internet to work where my daughter works, and they have health insurance. The past couple years I've been in a zombie fog due to medications, and recently it has cleared up by switching my prescriptions. I got the x-rays a couple weeks ago as I was applying for disability and had to be able to document the not-lift-heavy-stuff part. I'm not pursuing that now that I feel so much better.

    I am 58 years old. I was born with the condition. Looking forward a bit, I don't know how bone loss will affect my configuration and I may very well have problems in the future. So I'd really like to know more about my condition and see if my would be of any use in helping others. I'm not too worried about radiation and would be willing to take a few hits for the cause. In my correspondence to UCSF I did mention I don't have problems and asked if that investigating my spine would be of any use. I've also sent a similar request off to the Scoliosis Research Society at their info@srs.org address. Dr. Lenke is on the board of directors there.

    In the meantime I've been going through Wikipedia to get an overview of kyphosis, scoliosis, kyphoscoliosis and stuff like lorderosis, lumbar, sciatica, Cobb angles and the various treatments. And yes, I take Wikipedia with a grain of salt, but I figured I'd get a good overview of my back as it relates to curvature.

    I was a bit confused about the Cobb Angle. Does the angle get smaller or bigger the more normal your back is?

    Also, do I understand correctly that the kyphosis is the 90 degree hard turn to the anterior (front) and lorderosis is the lumbar vertebrae curving back to normal?

    Thanks again for your kind welcome and answers.
    Kyphosis is any curve in your spine that is to the outside of the body. Everyone should have some kyphosis. In the thoracic spine, normal kyphosis is 20-50 degrees. Lordosis is any curve that goes inward toward the body, and again, everyone should have lordosis. Abnormal lordosis is anything <>30-70 degrees. You might find some easier to understand information at http://www.srs.org/patient_and_family.

    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.

  7. #22
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    May 2008
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    reno,nevada
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    One thing that was on my mind all these years waiting for my surgeries, was insurance. I had a 80:20 policy at my job and figured that I would quit.....I needed better insurance. One things for sure, a quality insurance policy is worth a fortune, worth much more than the pay....surgical candidates need weigh this out carefully.

    I didnít realize that you were on meds. Guess we wont be tipping a beer. Thatís ok, Iím a teetotaler. When you take meds for long periods of time, you have to worry about your liver....and other things also.

    I was thinking about SRS also, that was a good idea....I have seen 180 degree paperclips straightened out before, it was on the research channel years ago....SRS has seen some pretty rough looking spines, that for sure.

    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

  8. #23
    Join Date
    Mar 2012
    Posts
    10

    Visiting Utah

    Ed, yeah, it would be fun to have ya visit. Until I get a job, I'm available anytime and I know the state really well if you want to see off the beaten path places. I'm trying to walk more to get in better shape. Also, you could get a real feel for my back. It is really amazing. I didn't mean to shock jrnyc with my picture, but if you are attempting to offer something for research, you really need to show the goods. That is really my back.

    I too don't drink, it would be bad as I have a compulsive personality. My meds handle all my conditions pretty good right now except I don't have one for ADD.

    Linda, thanks for your signature quote from Dilbert. I posted that on my real facebook page

    Jrnyc, sorry for the shock with the pic. It is my back and I did not search the internet looking for a shocking picture to screw around with nice people. You too are welcome to come visit and see it for yourself.

    If any of you would like to chat with me, send me a private message with your telephone number and a time you are available to talk, and I can call you.

    Now for today's questions. When I read about lorderosis, it mentioned that inverse curve actually may improve the strength of my back as opposed to making it more susceptible to fracture or damage. Is it possible I'm being too careful with my back? I'm predisposed to be careful because that is still a huge curve on the lower section. I know you people aren't doctors, so I will consider answers as additional info and not medical advice. If your info sounds useful, I'll want to chat with my doctor or a specialist.

    Second question: If I stand still, my back aches, but if I'm walking there is no problem. In each case I'm on my feet, so if you know why this happens and if there is a way to prevent it I'd like to know.

    Thanks again for your answers and patience with my hopefully soon to be cured ignorance.

  9. #24
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    i was shocked only in that it looked so bad and you made such a joke of it...
    guess that is your way of dealing with it...
    i a sorry you do not have health insurance right now...
    i do know, from getting older, that spines get worse, in general, with age..
    spines with problems are a pretty sure thing to get worse...
    i managed my scoli fine, work, grad school, then 2 jobs, and the gym, until i
    herniated discs...then it was down hill all the way...
    spines with problems tend to be weaker, and that can lead to all kinds of other stuff...
    i am not a doctor...these are just my own observations , from my experience, others, and reading forum...

    good luck...
    jess...& Sparky

  10. #25
    Join Date
    Oct 2008
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    Sunshine Coast, Queensland, Australia
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    Regarding your comment about standing versus walking, I have always wondered why it was so painful to stand still, whereas walking was no problem. You'd expect that walking might cause jarring and cause more pain than standing. One of the greatest joys of being post op is the ability to stand for as long as I want, without pain. What a huge difference that makes to daily life.
    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

  11. #26
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    once i herniated discs, both walking and standing became painful...
    stayed that way, too...

    i am so happy for you, Jen, that your surgery was successful and you have a full
    life back...

    jess

  12. #27
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    Sep 2003
    Location
    Northern California
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    When one stands still, or walks slowly, their posture is very different from walking at a faster speed. The forward torso position during faster walking unloads the weight at the back of the spine, where pain is generated in most people.
    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.

  13. #28
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    Yeah, showing the goods (x-rays) is something I try to do often....he he

    I will come to Utah again at some point in my RV. Trying to juggle work has been trying lately, and Iím losing my eyesight. You see, thatís the problem with successful scoliosis surgery. You find out that everything else is shot.

    I never skied Sundance, and would love to ski there. Maybe I can get ole Jeremiah Johnson to give me a tour.....(smiley face)

    Are you in SLC?
    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

  14. #29
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    Jun 2011
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    Quote Originally Posted by titaniumed View Post
    Yeah, showing the goods (x-rays) is something I try to do often....he he

    I will come to Utah again at some point in my RV. Trying to juggle work has been trying lately, and Iím losing my eyesight. You see, thatís the problem with successful scoliosis surgery. You find out that everything else is shot.

    I never skied Sundance, and would love to ski there. Maybe I can get ole Jeremiah Johnson to give me a tour.....(smiley face)

    Are you in SLC?
    Ed
    Ed, what is wrong with your eyes?
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

    February, 2015 - Right Knee Replacement

  15. #30
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    Presbyopia

    Age related eye loss. and dry eye....

    My vision really went down the tubes after all my surgeries. 5 of them in 2 years. I dont know if I can blame the surgeries.....I dont think so.

    Been real careful with my neck also...been maintaining that "perfect posture".

    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

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