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jrnyc
10-10-2012, 11:34 PM
This is X ray from January 18th, 2012.
report says lumbar curve increased from 61 to 70 degrees
(since April 2010)
the upper curve reportely remained at 42 degrees

jess

rohrer01
10-11-2012, 12:17 AM
Oh my gosh, Jess! I don't know how you are even walking! Those films are incredible. I don't think I've ever seen anyone with that bad of a lower curve and straight hips. You are similar to me (worse curve, of course), amazingly symmetrical from the outside but twisted on the inside.

It also looks like you have a lateral spondylolisthesis and a bunch of degeneration at L5. I'm by no means an expert, but that's my lay understanding of these. You also appear to have the truest flat-back I've ever seen. There's absolutely no lordosis in your lower spine and no kyphosis in your upper spine.

I don't mean to be rude by my interpretation of your films, as you already know the diagnosis and prognosis for your case. I can truly understand why you are in the amount of pain that you are in.

May I ask what your next step is? You don't have to answer that if you don't want to. I'm not trying to be scary or nosy. You really have my deepest concern, which you already knew, I hope.

titaniumed
10-11-2012, 04:05 AM
Jess

Oh, boy. I can see why you have been hanging so long.....Sigh.

Your lack of kyphosis and lordosis is amazing.....

You do know that you can be fixed, and there are quite a few of us that have had our train wrecks, just like you, that have been fixed up....

Ed

Pooka1
10-11-2012, 07:11 AM
Wow Jess. That's breath-taking.

Didn't Lonner give you pretty good about relieving pain with fusion? That would be very good if he could fix both the curve and the sagittal issues.

What does Sparky think about all this? :-)

Sharon

jrnyc
10-11-2012, 01:17 PM
thank you all for your replies...
yes, my spine causes a lot of pain...especially lower spine...

i am not going to risk more steroid shots....especially when it takes
a lot of the stuff to give me lower back relief...

rohr...i do not mind questions...you are accurate with your assessment...
and you are right...i do look straighter from outside...fool a lot of people, until i am in bad pain and tired...then the "hump" gets bigger and i slump forward...
i do have listhesis...next move? i am seeing Lonner Oct 25th....he thought
my curves were "relatively stable" at 42 and 61...but lower is now 70....he did say
DDD was gettting worse...i cannot seem to bring myself to surgery decision....i do have insurance change as of Nov 1st...no choice...forced by City of New York....thanks again to one of the worst mayors NYC has ever seen....unless you are very rich....

Ed, thanks again for your kind sympathy....

Sharon, Lonner thought i could get a lot of relief from surgery....
and Sparky knows i handle things pretty well, unless i SEE the Xray...then
i cannot maintain denial in face of it...

one note...Boachie says i have "visible thoracic lordosis compensatory
for the left lower thoracic kyphosis" Lonner said i am "particularly
hypokyphotic in thoracic spine..." which i mistook for "hyperkyphotic" til Linda pointed
out my error to me....

thanks again for the replies and concern...
jess....& Sparky

tonibunny
10-11-2012, 05:03 PM
Those are amazing x-rays, Jess! Your lumbar curve is very very like mine was just before I had it fixed when I was 18, though I certainly didn't have such a lack of normal kyphosis/lordosis. Were these pics taken with you standing up or lying down?

jrnyc
10-11-2012, 09:18 PM
hi tonibunny...
they were taken standing up...
i did have "bending X rays" taken while laying down...
haven't seen them and never asked to get a copy of them...
it shocked me that, once i didn't have the help of gravity, the
"flexibility" i thought i had disappeared really fast....

i hope you are free of pain since having surgery....??????

jess...& Sparky

golfnut
10-11-2012, 10:12 PM
Jess,
As you know, everyone has to know when the time is right, if ever, for surgery. I would never try to convince someone to have surgery, as not everyone is as happy as I am after having this major surgery. Good luck in your decision. I am fused t4 to sacrum, but feel like there is nothing that I can't do with some modifications. I'm riding my bike, standing and teaching all day without pain, tap dancing, and golfing every chance I get. I also feel like my odds are better for a more active life with less pain when I am older than I would have if I hadn't had surgery, as my curve would most likely have continued to increase, thus eventually causing more pain and a reduction in my activities. I was also one who had very little pain prior to surgery, but I'm still happy I had the surgery. Thinking of you . . .

jrnyc
10-11-2012, 11:02 PM
thanks Karen....
i have a lot of pain...
i am very glad that you had such good results...especially with
the statistics that say that those with less pain prior to surgery
are usually less pleased with outcome afterwards...
but then i am proof that statistics are not always true...
i was someone who "should not have" had curves progress to
surgical level...but who DID have curves progress...

i hope you continue to be pain free.
jess...& Sparky

JenniferG
10-12-2012, 12:57 AM
It's always a shock to see xrays of our spines (even post-op!) But without being any kind of expert, I can see why you're in lots of pain, Jess. I know you've been struggling with a decision for a long time and I hope Dr. Lonner can help on October 25. I guess to make a decision for this major surgery, we need very definite reasons and to have all our questions answered so that the decision is clear. Good luck Jess.

titaniumed
10-12-2012, 01:31 AM
I can agree about “some” statistics. Its like wondering about how much snow we will get this season....Hmm???

But skiers are usually stoked. They are pumped and waiting for snow.....We buy season passes and new skis without any guarantee’s. We watch silly Warren Miller movies in October and drink beer....(smiley face)

Hardcore skiers are out there on an inch. Hardcore skiers are out there in the rain. They dodge the rocks, and repair the ski’s, and keep skiing.

I don’t think about it being warm right now, its about when it comes, and it will come. It can rain, but that’s just a bad day, it will get colder and eventually snow. I don’t think that the whole season will be shot because its warm right now.

If you want to ski, you have to be stoked.

It’s the same with scoliosis surgery. You can’t worry about all the rocks and the rain, you just can’t.

Ed

susancook
10-12-2012, 04:29 AM
Yikes, Jess! I hope that you find some help. I can see that all of the muscles in you lumbr back are really pulled with the curve!
Thinking of you from FIJI. Susan

jrnyc
10-12-2012, 12:45 PM
thanks, Jen...
Ed, you are funny....it would definitely help if i could
get stoked for scoli surgery!

jess...& Sparky

titaniumed
10-13-2012, 02:17 PM
Jess

I’m not trying to be funny this time, I know, sometimes I can be “Dry”. I’m just trying to be realistic and talk a little about how I tackled some of my fears, panic, and attitude.

Its so hard making the decision, but if everyone was so scared, nobody would have surgery....Everyone that has major surgery hears about the complications, and basically has to shrug these things off in any way that they can. The only way is to focus on the plan, or as Sharon says “eyes on the prize”.

When I hiked the Angels landing trail in Zion, I got up to the staging point for the last scary leg and looked down and was pretty freaked out....those sheer cliffs and death warnings really have an impact. I’m thinking, this is nuts! 1500 foot drop. But then again, thousands have hiked up there for the past 86 years, how do they do it? I thought to myself, just focus on the summit and don’t look down. Like the eye blinders used on race horses, just look straight ahead and focus.
http://en.wikipedia.org/wiki/Blinders

After the summit, it was so much easier coming back down. I wasn’t even holding the chain half the time! You cant keep thinking that you are going to fall, it only makes it worse. Yes, a certain percentage fall, but your not.

I was so glad I did it.

Its also the same with scuba diving. You are NOT allowed to panic underwater. 1st time night diving is especially freaky. You have to stay calm......... It requires effort.......... My heartrate on my 1st night dive was HIGH. Now, I wont miss a night dive when diving. I will miss a day dive before missing a night dive. This is not bravery, it’s a mental effort, an understanding.

Same with scoliosis surgery. There is a certain amount of mental effort in staying calm, and understanding what is happening, especially in recovery. It took focus. I knew in advance that it would take time for things to heal. I knew that the road was going to be bumpy, and that it would pass in time. Blinders were still on, and total focus was on recovery.

Being stoked about surgery is a lot harder than being stoked about a sport, but IF you need surgery, then, its about understanding and of course, being stoked.....in that order. There are times we have no choice. My surgeon wanted me to understand, and I had to have the right attitude. He wanted my blinders on, and a strong will to succeed. The no decision on his part, then became a yes, only after my attitude adjusted. You can see that surgeons will and can say no, it depends on the patient. Deep down I was mad which affected me.....I wasn’t mad at anybody or anything, just mad that I had to do this. It was something I had to let go of, which I did. I don’t get exited about things anymore. I tackled the max, and threw the bull down by its horns.

I now realize how important the “will to succeed” truly is, especially in serious adult scoliosis surgery. If you do say “yes”, that yes means that you are committed wholeheartedly to succeeding in a successful recovery no matter what it takes.

Ed

Pooka1
10-13-2012, 03:28 PM
The only way is to focus on the plan, or as Sharon says “eyes on the prize”.

That is a reference to the title of an excellent PBS series of the same name on the African American Civil Rights movement in the US. I see from the wiki page that the title came from a song, "Keep your eyes on the prize...

http://en.wikipedia.org/wiki/Keep_Your_Eyes_on_the_Prize

By the way, technically speaking, everyone in the US is African because humans evolved in Africa.

jrnyc
10-13-2012, 04:50 PM
thanks Ed...for taking the time...for your concern...

i have been able to go after...and succeed...with several goals
in my life...but i have never had blinders on...do not think i would
be good at that...but i understand your point...and the need to focus
on the end result...

jess...& Sparky

kennedy
10-13-2012, 09:40 PM
wow jess that a really large curve

mariaf
10-14-2012, 12:36 AM
Hi Jess,

I just wanted to pop in and lend my support. I can imagine what a tough decision you are facing. Surgery is a very big step - and I can totally understand your not 'pulling the trigger' on it up until now. I'd probably be the same way.

On the other hand, living in constant pain can't be any fun.

I, like Sparky, know you can handle whatever comes your way and that you'll be fine in the end if/when you decide to have surgery.

And yes, our dear mayor is a real piece of work. Sorry to hear he screwed up your insurance. (I'm surprised he had the time - I thought he was busy these days focusing on important issues like what size sodas we were allowed to drink!). He seems to have a knack for messing things up and absolutely NO CLUE what it's like to be a regular, working person in this city.

Stay strong - Sparky will be your rock!

jrnyc
10-14-2012, 08:37 AM
thanks Maria...
from one NYC girl to another....you're the best....

jess...& Sparky

golfnut
10-14-2012, 08:58 PM
Jess,
Ed, as always, gave some good solid advice. I know from reading many of your posts, that at one time you were physically active before being in so much pain. You have certainly researched this surgery and tried everything possible to reduce your pain. You have a long life ahead of you and deserve to live it with less pain. My two miniature schnauzers were a great comfort during my recoery, so I know Sparky will be there for you! I'll be anxious to hear what Dr. Lonner says at your appointment.

jrnyc
10-14-2012, 09:56 PM
thanks for the concern, Karen...
Lonner has been recommending surgery to me
since 2007...i expect he will do the same on Oct 25th...

jess...& Sparky

titaniumed
10-15-2012, 12:43 AM
That is a reference to the title of an excellent PBS series of the same name on the African American Civil Rights movement in the US. I see from the wiki page that the title came from a song, "Keep your eyes on the prize...



Thanks for pointing this out, I didn’t know about the song....I ordered the program.

I would say that the lyrics could apply for many in pain, many that are holding on through our “dark” chapters.

I agree on "African” evolution and am personally interested in human migrations through history....

I can blame that on the multiple field trips to the Museum of Natural history in New York back in the early 60’s. When you are the grand old age of 6, and you look up and ask “what is that?” the teacher says “son, that’s a brontosauraus rex”.

It was the first time I saw spinal hardware....(smiley face)

http://en.wikipedia.org/wiki/American_Museum_of_Natural_History

Ed

Pooka1
10-15-2012, 06:08 AM
LOL on the hardware on the fossils... I took my girls to that museum this last summer... I go home to Queens at least once a year.

Jess, sorry to derail your thread. I hope others reply.

loves to skate
10-15-2012, 02:15 PM
Hi Jess,
I have been busy with house guests for a few days and haven't been on the computer. Just looking at your x-rays makes me feel your pain. I guess for me, the pain was too overwhelming and I just wanted a chance to get back to the activities that I love. Thinking about being in a wheelchair for the rest of my life just wasn't an option. Shots didn't help me after about the first year and I had tried everything else that was recommended to me (PT, water therapy and chiropractic), so with my mindset, surgery was the only option left. Also my blood pressure and cholesterol were going up for lack of exercise and my bones were thinning. A lot of reasons to jump right in. As you know, I still have pain, but nothing that stops me from my life.

Ed, have you ever thought about writing a book? You are so good with words painting a picture and entertaining with your humor. I want the first signed copy. he he!
Sally

jrnyc
10-22-2012, 09:40 PM
kept asking myself why i was going to see Lonner this week, on Oct 25th...
i expect the same...but worse...he has recommended i have surgery since 2007...so he would still recommend that, since my lower curve has increased since i saw him 2 years ago...
i am not ready to do anything right now...
i cancelled the appointment...tried to reschedule it for spring, but they said just to call back a month or 2 before i want to come in....
i saw no point in going in if i am not ready to schedule surgery...

jess...& Sparky

mariaf
10-22-2012, 10:15 PM
That makes sense Jess. Sometimes you have to look at things that way (logically). Since you are, understandably, not ready to do anything right now, what would the visit accomplish? You are a wise woman (which I already knew, so did Sparky).

Hang in there. You will know when the time is right to take action. These things have a way of working out the way they are supposed to.

jrnyc
10-23-2012, 12:12 AM
thanks for the kind support, Maria...
you are the best...always...
i am not usually such a logical thinker...but this just
made sense to me...

jess...& Sparky

titaniumed
10-23-2012, 09:06 PM
Jess

You will know when you are ready....When I went in in October of 2007, I knew. I couldn’t take it anymore. When the pain is really bad, you cant get in fast enough.

28 inches at Sugar Bowl ski area and more coming. Ye-ha.

We are getting stoked out here! (participating in ritualistic terpsichorean Octoberfest type activities while listening to oom-pah music) This is ok before and after surgery. (smiley face)

Ed

jrnyc
10-23-2012, 09:23 PM
hey Ed
the pain is bad, particularly without the steroid shots in SI joints...those
helped for almost 3 months at a time...
but i think i have a high tolerance for pain, practiced during worst part
of Lyme Disease...so i am not sure what it will take...

i saw reports of snow out in the far reaches
(anything beyond New Jersey to a born New Yorker)
and thought of you...
i said a little prayer that you can keep the white stuff out there in your neck of the woods...
have fun...be careful...and enjoy it!

jess...& Sparky

loves to skate
10-23-2012, 09:48 PM
Jess,
You will definitely will know when you can't take it anymore. I have only one suggestion for you. Don't ever bend and twist at the same time. That is what I did one morning getting breakfast plates out of the oven. I got a shocking pain that was way worse than a 10 on the pain scale. I go in for another SI joint shot tomorrow. I got two weeks relief out of the first one, so am hoping for a longer duration this time.
Take care, Sally

jrnyc
10-23-2012, 11:22 PM
hi Sally
thank you for the support and the understanding...
and i will be careful not to bend and twist together...
i herniated discs years ago by lifting a little kindergarten chair
at work....my scoli was manageable til the discs blew...after that, it
was downhill all the way....

my SI joint shots, the only place on spine that shots helped alleviate my
pain, used to last up to 3 months...a good 2 months, and then the 3rd
month i started to feel the pain come back....
BUT....it took a lot of steroid to get there...and the last round of
shots, i had complained that the previous round didn't give me as much
relief...so the doctor was determined to do better...he ended up giving
me "a ton of steroid" according to the nurse...she said it happily, so sure
i would do well....that was the round that did in my cortisol...

i guess what i am trying to say is it is a fine line...not too much to
kill off cortisol...but enough to last long enuf to make the shots worth
getting...
i will cross my fingers and hope that your pain doctor finds the right
balance to help relieve your pain....
Sparky sends you happy "woofs"

jess...& Sparky

loves to skate
10-24-2012, 08:59 PM
Thanks Jess, I thinks this pain Doc is very careful about such things and of course, I am well aware of what could happen. I didn't mean to raid your thread.
Sally

jrnyc
10-25-2012, 01:44 AM
that's OK, Sally...anytime...
best of luck with the shots...

jess.,,,and Sparky