New member, hello everyone

[jrnyc]

Davis...how many surgeons have you consulted with so far?
it might be good to have the radiographs to bring to show other surgeons for consults...they usually like to see "pix"

jess

[Davis]

Shuff is the 2nd surgeon I've consulted with, I had seen DR Robert Lowe in Huntington WV throughout my life before, leading up to this point. I think he has since retired as I can't find a good link for him. He used to be afilliated with Saint Marys Hospital in Huntington WV.

[jrnyc]

definitely recommend seeing at least one more...with pix for him/her to look at...
i cant imagine making a decision of such import...and permanence...without seeing several surgeons..that is just my opinion...but i saw at least 5 before i picked a surgeon...still "waffling" about surgery with 42 thoracic and 61 lumbar!

jess

[Davis]

Thanks for the advice, I'll take it to heart.
Thankfully my lumbar curve is so mild that, like I think you previously stated, it's barely considered scoliotic at this point. You had also mentioned that maybe that was why the previous Dr never said anything to me about it. However, I was looking though those x-rays from 3 years ago and you can definately see that it wasn't even slightly there at that time. That part of my spine was completely straight as compared to the mild curve that was x-rayed a few weeks ago. So I do think this is completely new and assume it's a compensatory curve from the main thoracic curve. I didn't mention it before but there is also a slight curve in my cervicle spine, in essence making a triple curve.

my apalogies, that was rohrer01 that had mentioned that. Sorry. It's late here at the office for me and I am going on pretty much no sleep.

[rohrer01]

Davis,
I had a lower thoracic curve that was barely there several years ago. It was in the teens as an adolescent and they rarely ever bothered measuring it. Now it is 38* and getting quite significant. I believe that anything over 40* is considered "severe", although that is subjective especially when you are talking to people on here that have VERY significant curves.

I feel stupid even considering surgery when I hear of the degree of curves that some people have. What I don't understand is why many of them don't have pain and I do. Not that I wish pain on anyone, but it baffles me how bad some people's backs can be without pain. It makes me feel like a pansy. Either that or maybe the location, rotation or something is different in me, and apparently you, that makes those of us with "smaller" curves have pain. I don't think even the doctors know. They just assume that everyone has no pain. At least that is what I've been met with most of my life.

My recent doctor wants me to wait until my curve is at least 60*! I can only imagine how crippled up I would be. My main curve only spans 6 vertebrae. Maybe that is why it hurts. Anyway, I sympathize with you. It's not that people don't believe you, because I do. It's just hard to rationalize operating on a moderate curve. But as I posted earlier, there are SRS docs that WILL operate on moderate curves.

[Davis]

The way I see it, why wait? I mean, when you can feel the twisting getting worse, you know your own body. Why should someone have to wait untill a severe degree and just continue living this way when there is an option to help correct it and start getting on with the rest of your life? Doesnt it make sense that if you can catch it at an earlier less "severe" a degree and halt and correct it there then that would be best? Why wait? Why just let it go and get worse? Why, if there is a chance at making it better, should you not have the option and means available to you to do that? Of course it's an extreme and brutal, traumatic surgery. I don't think anyone with even just a little bit of sense could miss that reality. But if you could possibly improve the quality of your life, why should you not be allowed that opportunity?
Thank you Rohrer01 for pointing out that an SRS DR did perform a corrective surgery on someone with a similar "small" (though not to me and my body) curve.

[rohrer01]

I agree with what you are saying. I feel like if I wait, then I'm just asking for age-related troubles to develop. But, as my doctor explained it, if your pain is at a constant 4 on the pain scale, a surgery might bring you up to a 5 or 6. If you wait until you are at an 8 or 9, then a 6 will feel good. I would hope that surgery doesn't put a person at a constant 6, but unfortunately in some cases it does. That is what I'm afraid of, because once it's done, it's done and there's no undoing it. That's a weighty matter indeed.

May I ask how old you are? I think if I remember correctly you are in your early 30's? Honestly, if I were you, I might wait just a time or two more to see if your curve is truly progressing. I don't just mean cobb angle. I'm sure there's a way of measuring rotation.

I hear what you are saying about "feeling" your body change. I have felt this for the last 12 years or so. It's a gross feeling and hard to describe. Maybe you could get a second opinion from the doc that I mentioned. He didn't charge me to send him my x-rays and talk to me about them. I found him to be very informative and compassionate, something sadly lacking in most SRS docs, if you ask me. I've had too many arrogent jerks tell me how I'm NOT feeling. It makes me angry! That's another story.

Everyone here is well meaning, so know that we really are looking out for each other.

Good health to you!

[Davis]

once it's done, it's done and there's no undoing it.

Very good point indeed. But it feels as if it's a situation where I have to do what I have to do to try to get relief from this, as I'm sure you must have that feeling also, along with a myriad of other feelings at the same time.

I'm 33, turning 34 this year.

That's a good point that your DR was stating. The possability of ending up in even worse pain. But still, the possability of some correction and arresting of this situation seems to outweigh that possability in my mind, for now at least.

What DR are you speaking of as far as sending x-rays for him to take a look and get an oppinion?

[jrnyc]

hi rohr
i've never heard 40 degrees and over described as "severe"...just that it may be operable...

i have 41 thoracic and 62 lumbar now (dont consider them severe..especially when i see those on forum with 85 degrees & up )...and i dont consider myself "crippled"...except on a bad, humid day like today
that's a joke, but like every joke, has a little truth to it...

in my case, my degenerative discs are causing my increase in pain, according to my surgeon...and i believe him...there is just no getting away from them...whatever "healing" they were going to do after i herniated them, they did...and the pain has never gone away completley! now it is just increasing...i dont know whether or not the stenosis, rotation, arthritis, listhesis, etc etc etc is contributing to the pain...the surgeon only pointed out the discs worsening...
i guess, especially with a pain management doctor...i can...hope.... my pain decreases with treatment...but once i have the surgery...it is permanent...perm-an-ent.......in case i am in pain...or, heaven forbid, worse pain...well, i dont know where i'd go for relief...

jess

[rohrer01]

You know, I read that somewhere, but as I look in the internet again, it seems I stand corrected. Here are some criteria I have found, although I have seen "different" ratings. That's why I said it is subjective. My medical records say "severe" and I'm nowhere near 70*.

http://www.umm.edu/patiented/article...s_000068_4.htm

According to University of Maryland Medical Center the criteria are:

mild = less than 20*
moderate = 25* - 70*
severe = 70* - 100*
very severe > 100*

I'm going to look some more and try to find where I read >40* as being severe.

[Davis]

in this link they do report curves of the degree you were saying, Rohrer01, as severe.

http://thedynamicspine.wordpress.com...ory/scoliosis/

[Confusedmom]

Gotta love it. So I am hovering on the cusp of "severe" at 68*. Yippee. I guess that explains why one doc said I should wait until I was "over 70*". To me a 2-degree difference didn't seem material, but I guess that definitively puts me in the "severe" category.

It reminds me of the first time I heard someone use the word "deformity" to describe this. I had called a spine surgeon recommended by a friend to try to get a consult, and the receptionist said very abruptly: "Dr. X doesn't do deformity work." I thought, who are you to call someone deformed? Isn't that politically incorrect? Then I when I started delving in, I realized everyone calls it that.

Also reminds me of trying to get an appt. with Dr. Lenke. Wishing "am I bad enough??!" Answer: yes. (Hmmm....Should I be happy or sad?)

Categorizing our spines is so much fun.

[rohrer01]

in this link they do report curves of the degree you were saying, Rohrer01, as severe.

http://thedynamicspine.wordpress.com...ory/scoliosis/

Yes, I've seen this same system of measurement somewhere else, but cannot find it tonight. I give up looking. But again it goes to show the subjectivity of the measurement. My major cobb angle is 46* and the lesser curve is 38*, so like I posted earlier, does fall into the early end surgical category. Pain is a driving factor for me here.

[Davis]

It's more than one thing for me.
I guess everyone has their own reasons, some shared and some personal. Aches and pains I shouldn't have at this age, the feeling that I'm locked in a vice that I need to get out of, the tension leading to sore exhausted muscles, the come and go sacroiliac pain, all of the weird tingling in various muscle groups that just feels like something creeping in me and twisting me, pulling the right side back and to the left and pushing the left side forward like I'm some kind've freaking organic swirl of mass, and yes, I'd be lying if I didn't state the obvious, that I want to be more symmetrical. To be balanced, to be able to relax for once, to be able to breathe a bit easier, to lay down and not feel all of the distorted pressures thoughout my core, my ribs, everything. I swear I can feel the pressure on my heart sometimes when I'm lying in bed trying to sleep.
I get along okay. I work a whole lot, more than full time, have been holding this career for 6 years now. And I am dad to three beautiful young ladys, one about to start kindergarden this year.
I have a wonderful fiance' who puts up with me, sometimes I don't know how, but hey, she's got her moments too
I just want a better quality of life. For everyone around me too. I try hard but honestly, this condition with the constant aches and pains and everything that goes along with it psychologically and physically takes a big big toll on a persons disposition. The "quality" of life itself.

[naptown78]

It's more than one thing for me.
I guess everyone has their own reasons, some shared and some personal. Aches and pains I shouldn't have at this age, the feeling that I'm locked in a vice that I need to get out of, the tension leading to sore exhausted muscles, the come and go sacroiliac pain, all of the weird tingling in various muscle groups that just feels like something creeping in me and twisting me, pulling the right side back and to the left and pushing the left side forward like I'm some kind've freaking organic swirl of mass, and yes, I'd be lying if I didn't state the obvious, that I want to be more symmetrical. To be balanced, to be able to relax for once, to be able to breathe a bit easier, to lay down and not feel all of the distorted pressures thoughout my core, my ribs, everything. I swear I can feel the pressure on my heart sometimes when I'm lying in bed trying to sleep.
I get along okay. I work a whole lot, more than full time, have been holding this career for 6 years now. And I am dad to three beautiful young ladys, one about to start kindergarden this year.
I have a wonderful fiance' who puts up with me, sometimes I don't know how, but hey, she's got her moments too
I just want a better quality of life. For everyone around me too. I try hard but honestly, this condition with the constant aches and pains and everything that goes along with it psychologically and physically takes a big big toll on a persons disposition. The "quality" of life itself.

Davis,
I want you to know (as a survivor of 2 scoliosis surgeries) that even if you have this surgery, you may still have what you are describing: sore exhausted muscles, come and go sacroiliac pain, weird tingling in your muscles. And more: traveling pains, numbness in various parts, the feeling of the rods in your back, low energy level and endurance for months. I just don't want you to think this is a magic cure. Go see a couple more surgeons that have done Adult Scoliosis surgeries on a regular basis. If I were in your shoes, I would wait and see if your curve was documented as progressing. Once you have surgery, there is no going back...