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gonzorini
03-25-2012, 07:22 PM
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.

Doreen1
03-25-2012, 09:11 PM
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

titaniumed
03-26-2012, 01:38 AM
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

Doreen1
03-26-2012, 06:42 AM
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

titaniumed
03-26-2012, 09:20 AM
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

Doreen1
03-26-2012, 10:25 AM
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

Doreen1
03-26-2012, 10:32 AM
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=rKvVvpi1qSU&feature=relatedcool

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

Warmly,
Doreen

LindaRacine
03-26-2012, 02:06 PM
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

gonzorini
03-26-2012, 10:22 PM
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!

LindaRacine
03-26-2012, 11:28 PM
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?

titaniumed
03-27-2012, 01:35 AM
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

Doreen1
03-27-2012, 06:22 AM
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

gonzorini
03-27-2012, 04:55 PM
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.

rohrer01
03-27-2012, 06:50 PM
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

Doreen1
03-27-2012, 06:55 PM
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

jrnyc
03-27-2012, 08:26 PM
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

LindaRacine
03-27-2012, 09:00 PM
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

rohrer01
03-27-2012, 11:35 PM
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

titaniumed
03-28-2012, 03:21 AM
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

gonzorini
03-28-2012, 06:33 PM
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.

LindaRacine
03-28-2012, 08:54 PM
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

titaniumed
03-28-2012, 09:16 PM
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

gonzorini
03-29-2012, 01:01 PM
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.

jrnyc
03-29-2012, 01:35 PM
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

JenniferG
03-29-2012, 03:50 PM
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.

jrnyc
03-29-2012, 06:17 PM
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

LindaRacine
03-29-2012, 07:36 PM
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.

titaniumed
03-29-2012, 09:12 PM
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

mabeckoff
03-29-2012, 10:15 PM
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?

titaniumed
03-29-2012, 10:36 PM
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

mabeckoff
03-30-2012, 08:31 AM
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

is there anything that can help you?

gonzorini
04-06-2012, 04:55 PM
Ed,

Sundance is on the back side of Mount Timpanogos (checkout google images, its beautiful). I am at the very foot of the mountain. So I'm only a couple miles from Sundance. It is one of our lower ski resorts, and we've not had a good snow year, so it is likely not going to have enough. I'd love a visit though. I got a new job a couple days ago so a visit will need to be on my days off. A job is good. When I get insurance after 60 days I'll go whole hog to see where I am with my back. I'm starting to think it may not be as well off as I think it is. So let me know when you want to visit and lets see what we can arrange.
-----
Everybody,

Sorry for not checking in sooner, but between a new granddaughter, birthdays of various people, and running around with my head cut off after getting a job offer, today is the first time I've felt settled enough to be back.

I appreciate everyone's help and answers. Thanks for the explanation about why my back hurts when standing still and not while walking. I wasn't aware normal people don't have the same problem. Again, its what I get for for thinking I'm more normal than I am. It would be nice not to ache when standing still and watching a parade or waiting in line. I think treatment is still too high a risk though.

I've just joined a fitness club, courtesy of my son, since I can't afford it yet. Are there any exercises I should be careful doing or avoid? I'm trying to lose around 35 pounds out of 195 to reduce the stress on my back as well help my general health. So far I'm trying to get over six miles of walking a week and do strength exercises three times a week. Got 10 miles last week of which 4 was done watching a two hour movie on a treadmill. It was pretty funny because after we selected the movie they guy told us we had to stay in there the whole time. My son hadn't seen the movie and we had decided to be there the whole time already, so the guy was kind of shocked when we did. :) We were both sore the next day, but it was worth it.

LindaRacine
04-06-2012, 07:56 PM
Are there any exercises I should be careful doing or avoid? I'm trying to lose around 35 pounds out of 195 to reduce the stress on my back as well help my general health. So far I'm trying to get over six miles of walking a week and do strength exercises three times a week. Got 10 miles last week of which 4 was done watching a two hour movie on a treadmill. It was pretty funny because after we selected the movie they guy told us we had to stay in there the whole time. My son hadn't seen the movie and we had decided to be there the whole time already, so the guy was kind of shocked when we did. :) We were both sore the next day, but it was worth it.

Hi....

I personally don't think weight training is all that great for people with bad backs. I would concentrate on core strengthening.

Regards,
Linda

titaniumed
04-07-2012, 10:57 AM
I agree, weight training is probably not a great idea.......I would keep weights under a few pounds....under 5#. I wouldnít be lifting the grandkids....

Weight loss works well if you can control your fat intake. Switch to bean soup....(smiley face) I always order a soup over a salad in restaurants....Soup is good food.

You need to watch your BMI. There are body mass index charts online. After my surgeries I gained 4 inches in height, which gave me a green light on eating, and technically was allowed to gain a few pounds.

I understand how you feel about treatment in your case.

Iím off to Phoenix next week.....been running a busy schedule myself.

You live in a beautiful area, Ive been there but didnt ski.

Ed

gonzorini
04-08-2012, 09:16 PM
What is core strengthening Linda? I am not familiar with that term.

In the meantime, I've been using the various strength machines in the fitness center. Most of them have back support. One of them simulates a sit-up without even messing with the back, which I thought was really cool. When I had to do sit-ups in school, coming down on the hump was very annoying.

On most of the machines I've set the weight at around 65 pounds and after 8 reps, on the whole series, the muscles are tired. For the most part the weights feel light. The back did not feel strained at all. I've been out of shape for 40 years, so my first goal is to get firmed up before going further. I did the machines three times last week, and Friday used the pool, also the first time in 20 years. Did one lap and my back felt really weird from the 90 degree angle to the neck. It felt like a plate armor of slightly sore muscle. It went away after a few minutes. The machines are do not seem to be picking up the back muscles. I also got in 7.5 miles of walking on the treadmill and around town. I'm starting to get to the point where I'm breaking a sweat now, and my lung capacity is about to be tested.

Some of the shoulder muscles have been sore during the week, so yesterday and today I am resting. But so far, so good.

I'd like to get full imaging of the thoracic area since I'm curious to see where all the internal organs wound up relative to where they normally are on account of my back. I'm wondering if there are additional problems from organ placement that I'm not aware of. For you folks that have had major back surgeries, what kinds of imaging did they do besides x-rays? Would I learn anything from advanced imaging?

LindaRacine
04-08-2012, 11:09 PM
Hi...

Core strengthening involves strengthening the muscles of the abdomen. The idea is to let the abdominal muscles do the work of the back muscles.

You might be really helped by working with a therapist who understands the special needs of someone like yourself.

Regards,
Linda

rohrer01
04-09-2012, 12:16 AM
Gonzorini,
Some other tests that they do are MRI and CT/myelogram. The MRI has no side effects that I'm aware of. The CT scan without the myelogram can pick up things that the MRI alone can not. the CT/myelogram is a CT scan but before you go in they do like a spinal tap and withdraw some spinal fluid and replace it with a contrast dye. This gives them a very detailed picture of your actual spinal chord and nerve roots. I haven't had surgery, but I have had several MRI's and one CT/myelogram. Both of these tests also give a view of your internal organs when they do cross sections, so they might be interested in finding out "where" everything is inside your body (CT myelogram wouldn't be useful for this, but MRI would probably be best is my guess). CT scans expose you to a fair amount of radiation, so you don't want to have too many of them.

Another test that I can think of would be an electrical study called an EMG. This is to check if your nerves are working properly to different parts of your body. I've also had several of these. They can hurt a bit but not too bad. They use very fine needles and place them into certain muscle groups to see if the nerve impulses are working properly to those muscles.

I hope this helps. I can't think of any other studies right off hand.

Rohrer01

gonzorini
04-29-2012, 11:25 PM
I've been on the job now for 3 weeks. Two training and one on the phones taking calls. Don't get insurance until July. My normal schedule begins tomorrow, 12:00 pm to 8:30 pm, so now I can settle into a routine and get back into exercising. The gym trainer said I'd been doing the exercises wrong, so when I go back I'll go much lighter on the weights, but more on the repetitions.

I never did hear back from the UCSF spine center, so I don't know whether they had no use for me or whether they thought I was pranking them. Even some of my friends were surprised by the x-ray. In my case, I look mostly normal unless I bend over, at which point it is very obvious. Most people never see me bend over, so it was a real surprise to a lot of people on facebook when I posted the links, especially to the people at church.

My chiropractor works around my back, but tomorrow will be the first time he'll get to see pictures. I'm curious to see how he takes it. He's worked on my back for over 25 years, so its almost as normal to him as it is to me. I'll report when I get time.

titaniumed
04-29-2012, 11:41 PM
Gonzo

If you google ďGibbusĒ deformity, you will see similarities. Select images.

Ed

gonzorini
08-14-2012, 12:32 AM
I looked this up, and one of the pictures looked like my back. Almost identical. I don't know if any of my doctors ever submitted x-rays of my back to research organizations which may have been used.

My chiropractor looked at the images of my back and said none were fused, as had been the explanation previously given to me. Given the images, he's not sure how my back can even function, given where the spinal cord needs to be in a normal spine. I told him that makes at least two of us. I'm just glad it works as well as it does.

This last weekend my wife and I and some friends camped out and watched meteors, but I think my pads have become too fatigued and I'll need more padding next time I camp out. I'm thinking the older I get the more problems I'll have, some of which normal spines have too.

susancook
08-14-2012, 03:54 AM
Gonzorini, Welcome! I love your #1 reason why not to have surgery, something like "Except for a severe deformity, there's nothing wrong with my back". Got me laughing!
Susan

titaniumed
08-15-2012, 12:20 AM
I looked this up, and one of the pictures looked like my back. Almost identical. I don't know if any of my doctors ever submitted x-rays of my back to research organizations which may have been used.

My chiropractor looked at the images of my back and said none were fused, as had been the explanation previously given to me. Given the images, he's not sure how my back can even function, given where the spinal cord needs to be in a normal spine. I told him that makes at least two of us. I'm just glad it works as well as it does.

This last weekend my wife and I and some friends camped out and watched meteors, but I think my pads have become too fatigued and I'll need more padding next time I camp out. I'm thinking the older I get the more problems I'll have, some of which normal spines have too.

Its hard to say, these surgeons see quite a bit. Itís really amazing since there are so many things that can happen, and starting from birth.

Your situation is beyond any Chiropractic advice....They just donít have the training or resources that a team at a major deformity center would have. Could your deformity be the result of something else? Has anyone done blood work to help rule other things out? Itís a starting point anyway....

The final decision on my surgeries was determined after the blood work was done. They look to make sure there isnít some hidden surprise. Preventive medicine really is a good thing. Iíve been guilty in the past by ignoring doctors....many of us are there, its understandable. Truth can be scary, but I think that many of us need to know.

Looking at the Perseidís for us takes good thick foam! Its just not worth constantly looking up and trashing your neck. Is it possible to get a whiplash from a shooting star? (smiley face)

I went camping also, but drank so much red wine, my hardware is probably stained red.

Ed