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Davis
06-18-2010, 12:13 PM
Hello all. New to the forum.
I've read alot through the different posts and have found quite a bit of helpful info on this malady. It seems a very helpful and supportive group you have here, awesome.
Anyway... I was diagnosed with scoliosis at the age of 11 and fitted with a brace which I never wore. At the age of about 18 my curve (thoracic) was at 25*. Around that period of time I had seen the same DR a few different times because of the extreme uncomfortable feeling I always had.
I didn't look too closely at the medical records back then but i rescently noticed, reading back though them, that i was diagnosed at 25* then a short time after at 35*, and then a short time after that back at 25*. I can only assume that the Dr I was seeing (I had seen the same DR throughout my whole life untill rescently) measured incorrectly at the 35*.
Fast forward about 12 years, lot's of disscomfort and pain later, I schedule an appointment to consult with an orthopedic spine specialist at my local hospital and ended up seeing the same DR I had seen all of those years ago.
He assures me after x-rays that my curve still holds at 25* and we have a thorough discussion about it all. Single throracic curve with apex at t3 or t4 (can't remember right off). I ask why, if everything has remained the same since all those years ago, has my deformity gotten notably worse and everything feels so much worse. He tells me maybe from rotation and that there's not really a way to measure that. I ask about surgery for correction and he says no way. End of discussion.
Fast forward another three years and we are here today.
I decide that maybe it's time to consult another specialist. He measures me with a 29* thoracic curve and a secondary (this is new) lumbar curve of
11*. So, within the last 3 years this new curve has just popped up? Or did the first DR miss something all that time?
This Dr. doesn't hesitate a moment to say that surgery is the only answer and we can do it as early as this August. He wants to get a current MRI to make sure some nerves arent compressed, so I'm still waiting to hear back on when the MRI is scheduled. That's been a week ago today.
Sorry this has been so long-winded but I just wanted to get this off of my chest.
Does anyone else think it is strange that for all of these years one DR would be so averted to surgery and then this one immediately opts for it right away?

jrnyc
06-18-2010, 12:52 PM
i am shocked that a surgeon would suggest surgery for such small curves...the cut off point is usually at least 40 degrees, for some surgeons it is 50 degrees...

i think it is important that you see another surgeon...or two...before you do anything!

also, have you seen a pain doctor to see if that could help you? do you have any disc problems contributing to your pain?

please be sure to see a surgeon listed on this forum as thoroughly experienced in scoli surgery!!

and welcome...there is alot of support here...knowledge, friendship, and stories to learn from!

jess

rohrer01
06-18-2010, 01:02 PM
First of all welcome.
I have what sounds to be a similar curve pattern as you. My original curve runs from T1 - T6, diagnosed at 16 with 39 degrees. I've always had a second curve below that one that has only measured in the teens. My curve has held steady for over 20+ years. The last two years I was receiving chiropractic care and it started progressing. I am now at 46* and 38* for the secondary curve. I also have bouts of severe pain with my curves. My doctor that I have seen for the last 5 years says NO to surgery. I consulted another doctor out of state and sent him my X-rays and MRI's. This new doctor seems to think surgery may help me with pain. The standard for surgery is usually over 50 degrees, some docs won't touch people under 60*. My curve is considered in the surgical gray area (between 45 and 50 degrees). The reason I'm telling you this is because I can't imagine any doctor wanting to surgery for a curve of only 29* unless there are other severe factors involved. I would definitely recommend getting a third opinion and going with what 2 out of 3 say. Was the surgeon you saw that wanted to do surgery a spine specialist in scoliosis? You can go to the Scoliosis Research Society website and find certified doctors in your area. I would recommend you do more research on what the surgical criteria are for scoliosis surgery before you make that final leap. You may end up worse than before if you fuse a curve that small. Just an FYI, I think a curve has to be 11* for it to even be considered scoliosis. So your lumbar curve is VERY mild, barely even scoliotic. That's probably why it was never mentioned to you.
Best Wishes

Davis
06-18-2010, 01:10 PM
i am shocked that a surgeon would suggest surgery for such small curves...the cut off point is usually at least 40 degrees, for some surgeons it is 50 degrees...

I was wondering about this too as that I dont recall ever reading anyone that's had surgery for these degrees.
I must admit that I would really like to be cosmeticly corrected, there is a degree of rotation that deforms my ribs giving me a right back rib hump and the left front uneven chest plate, and there is a whole lot of discomfort and come and go pain, especially in the right sacroiliac region.
It seems all of these years I have been wanting this to be corrected and saddened by the fact the DR would not do it and now all of a sudden it is a go.
I was thinking maybe getting another oppinion, I'm glad you mentioned that too.

jrnyc
06-18-2010, 01:16 PM
please be really careful..just because one (questionable) surgeon says it is a "go" doesnt make it so!! it is very very serious surgery...few surgeons will operate on such a relatively small curve for "cosmetic" reasons!

i will ask you again..if the pain really bothers you...have you seen a pain doctor...? that would be the way to go first...

surgeons who are ethical will tell you the truth, not what you want to hear...i understand that the appearance bothers you...but i dont know that you fully appreciate the seriousness of this kind of surgery!!

jess

Davis
06-18-2010, 01:18 PM
also, have you seen a pain doctor to see if that could help you? do you have any disc problems contributing to your pain?
Have never seen a pain specialist and as far as I know I have no disk problems.

LindaRacine
06-18-2010, 01:18 PM
Hello all. New to the forum.
I've read alot through the different posts and have found quite a bit of helpful info on this malady. It seems a very helpful and supportive group you have here, awesome.
Anyway... I was diagnosed with scoliosis at the age of 11 and fitted with a brace which I never wore. At the age of about 18 my curve (thoracic) was at 25*. Around that period of time I had seen the same DR a few different times because of the extreme uncomfortable feeling I always had.
I didn't look too closely at the medical records back then but i rescently noticed, reading back though them, that i was diagnosed at 25* then a short time after at 35*, and then a short time after that back at 25*. I can only assume that the Dr I was seeing (I had seen the same DR throughout my whole life untill rescently) measured incorrectly at the 35*.
Fast forward about 12 years, lot's of disscomfort and pain later, I schedule an appointment to consult with an orthopedic spine specialist at my local hospital and ended up seeing the same DR I had seen all of those years ago.
He assures me after x-rays that my curve still holds at 25* and we have a thorough discussion about it all. Single throracic curve with apex at t3 or t4 (can't remember right off). I ask why, if everything has remained the same since all those years ago, has my deformity gotten notably worse and everything feels so much worse. He tells me maybe from rotation and that there's not really a way to measure that. I ask about surgery for correction and he says no way. End of discussion.
Fast forward another three years and we are here today.
I decide that maybe it's time to consult another specialist. He measures me with a 29* thoracic curve and a secondary (this is new) lumbar curve of
11*. So, within the last 3 years this new curve has just popped up? Or did the first DR miss something all that time?
This Dr. doesn't hesitate a moment to say that surgery is the only answer and we can do it as early as this August. He wants to get a current MRI to make sure some nerves arent compressed, so I'm still waiting to hear back on when the MRI is scheduled. That's been a week ago today.
Sorry this has been so long-winded but I just wanted to get this off of my chest.
Does anyone else think it is strange that for all of these years one DR would be so averted to surgery and then this one immediately opts for it right away?

Hi Davis...

Welcome to the group.

Like the others, I'm shocked that anyone would suggest surgery for a 29 degree curve. I would definitely work on trying to find another specialist if I were you. You can find a list of them here:

http://srs.execinc.com/edibo/PublicDirectory

There's enough margin of error to explain a 4 degree difference, so you'll need at least one more set of xrays (in another year), to document progression.

Oh, and by the way, rotation can be measured in several ways. It sounds like the doctor you saw probably isn't specialized in scoliosis.

Regards,
Linda

Davis
06-18-2010, 01:27 PM
Was the surgeon you saw that wanted to do surgery a spine specialist in scoliosis?
yes, the surgeon I have rescently seen, Dr Shuff of Marshal University Joan C. Edwards School of Medicine Department of Orthopedic Surgery Adult & Pediatric Spine Surgery.
My old Dr, DR Robert W. Lowe who was affiliated with Saint Marys hospiatl in Huntington WV and was also a specialist.
Thank you all very much for helping me out with feedback, I appreciate this so much, and thank you for the warm welcome.

rohrer01
06-18-2010, 01:40 PM
I looked him up (Charles E. (Ted) Shuff, MD). He doesn't list "scoliosis" as one of his interests and he is not listed as an SRS member on their website. There are doctor's out there that can do a beautiful job on scoliosis patients that are not SRS members, but I would be careful. The red flags are there on this one.

Davis
06-18-2010, 01:49 PM
I looked him up (Charles E. (Ted) Shuff, MD). He doesn't list "scoliosis" as one of his interests

heres a link to the hospital site and if you scroll down and look at his profile, scoliosis is listed. I did research this and I do realise that he is not a member of the SRS or listed on their site, that did kinda let me down.

http://cabellhuntington.org/services/neuroscience/physicians/

rohrer01
06-18-2010, 02:18 PM
Yes, indeed it does say scoliosis. I stand corrected. This is where I got my information from:

http://musom.marshall.edu/orthopaedics/documents/cv_shuff.pdf

Look under research interests.
:)

We're not picking on you. We are just concerned and don't want you to fall into the hands of a knife happy doctor.

Davis
06-18-2010, 02:30 PM
Definately understand what you are saying there and I of course don't want to be in the wrong hands either.
I'm not sure what the paper your link leads to is dated but it looks to be from some time ago when this DR was in Virginia and before he came to the current hospital I am seeing him at. The link I provided is the most up to date, at his current practice and in this state.
I don't feel I'm being picked on at all and I really appeciate the honest oppinions and thoughts so please be as candid as you like.

rohrer01
06-18-2010, 02:48 PM
Definately understand what you are saying there and I of course don't want to be in the wrong hands either.
I'm not sure what the paper your link leads to is dated but it looks to be from some time ago when this DR was in Virginia and before he came to the current hospital I am seeing him at. The link I provided is the most up to date, at his current practice and in this state.
I don't feel I'm being picked on at all and I really appeciate the honest oppinions and thoughts so please be as candid as you like.

That's the problem with the internet. ;)

Davis
06-18-2010, 02:49 PM
But also, the possability of being corrected, to not have the constant feeling that I'm being ripped apart at the middle, to not have the aches and pains and burns, to resolve some of the deep psychological scars of being so twisted, to be able to wear whatever i want, the possability to feel ok in my own skin for once, to possably have a better quality of life. This is what pushes me into going for this. I know, in general, that surgery is not prescribed or recomended for this degree of curvature and I realise how major this surgery is. I'm just so torn. It's like all of my life I've wanted someone to be able to do something to fix this and when i finally find someone who says they can help, a million uncertainties burst forth.

CHRIS WBS
06-18-2010, 03:03 PM
This doctor has no training in spinal deformity. http://orthodoc.aaos.org/charlesshuffmd/index.cfm
I would search for a physician from the list Linda Racine provided.

Good luck.

jesscv
06-18-2010, 03:03 PM
Davis,
I had a thoracic curve of 57* at the time of surgery, and a compensatory lumber curve of 40*. even though my curves were definitely larger than yours, i also had significant rotation with my scoliosis. the rib deformity you describe is very similar to what i had... a hump on my back right side, and the bottom of my left ribcage in the front protruded. i will tell you that while my spine is now almost completely straight, the surgery didn't 100% correct the rotation and unevenness of my shoulders and ribs that have been misaligned & shifted over the years. my back hump is MUCH, MUCH more diminished, but the left side of my ribcage in the front still sticks out a bit. however, at 15 months post op, i am noticing that my ribs look better than they did immediately after surgery... the point i'm trying to make here is definitely do NOT have this surgery simply for cosmetic reasons. :)

Davis
06-18-2010, 03:29 PM
This doctor has no training in spinal deformity

chris wbs, I dont understand how you get that he has no training in spinal deformity. It lists right there on the link that you provided that he does. :confused:

rohrer01
06-18-2010, 03:32 PM
Here are some surgical guidelines from 2008.

http://www.scoliosisjournal.com/content/3/1/6

I would predict that even if your scoliosis is a cause for some of your pain (mine is painful, too), that surgery will not help this and may even make your pain worse.

Davis
06-18-2010, 03:46 PM
thank you rohrer01, very informative.

LynetteG
06-18-2010, 03:54 PM
I agree with all the others - please get another opinion from a scoliosis specialist - you will be glad you did in the long run. Another scoliosis doctor may well say to you to go ahead and have the surgery, but at least this way you'd know for sure, and perhaps have a better surgeon also to do the job.

rohrer01
06-18-2010, 03:59 PM
But also, the possability of being corrected, to not have the constant feeling that I'm being ripped apart at the middle, to not have the aches and pains and burns, to resolve some of the deep psychological scars of being so twisted, to be able to wear whatever i want, the possability to feel ok in my own skin for once, to possably have a better quality of life. This is what pushes me into going for this. I know, in general, that surgery is not prescribed or recomended for this degree of curvature and I realise how major this surgery is. I'm just so torn. It's like all of my life I've wanted someone to be able to do something to fix this and when i finally find someone who says they can help, a million uncertainties burst forth.

We all want to be fixed from our deformity and pain. It's just that sometimes the risks outweigh the benefits. No one is taking this lightly. Your concerns are real. However, if you get advice from an SRS doctor, I can almost guarantee that they would not even think of surgery at this point. Believe me when I say that I know what the disappointment feels like. I have had severe pain since I was 16 and at 39 degrees. No one would operate on me either. Now I'm getting close to surgical territory in my 40's (age) and being that I'm over 45* there are some surgeons who will operate. Still, I can honestly say the vast majority of surgeons will still tell me to wait. A curve isn't even considered to be "severe" until it is over 40*. There is no risk for respiratory problems for you at this stage, unless something else is going on. My SRS doctor told me that respiratory function actually goes down after fusion. You have a mild and moderate curves. It's hard to live with, I know. But everyone on here has good intentions and you can see that the consensus is unanimous about you not having surgery. If the curve progresses to 45 or 50 degrees, then you can consider it. We are all more self-conscious about our appearance than what others notice. My husband didn't even know I had scoliosis when we were dating. Before I would consent to marry him, I sat him down and showed him my X-rays and explained that I have a lot of pain and asked him if he is prepared to deal with this for the rest of his life. I felt that my ribs stick out terribly and only now that he knows does he even notice it. Sometimes accepting our bodies and our pain (there are things that can be done for your pain) is the hardest thing to do because we all want to be normal. But whether we have surgery or not, we all have scoliosis and we all have some deformity. The medical profession can only do so much and if someone promises you something that sounds too good to be true, then..... Please, see another doctor and at least get another opinion. There are docs out there that, for whatever reason, money, prestige, experience, want to do unwarranted operations. Please don't fall victim.

Davis
06-18-2010, 04:00 PM
I looked at the list Linda provided, searching for someone in my area and found nothing for Huntington WV or Ashland KY, I'm at my office right now but should have more time to devote to a search a little later on.

lray
06-18-2010, 04:07 PM
...to not have the aches and pains and burns, to resolve some of the deep psychological scars of being so twisted, to be able to wear whatever i want, the possability to feel ok in my own skin for once, to possably have a better quality of life.

I totally understand where you are coming from. Most of us here have felt this way, at least at some point. Please see a scoliosis specialist, hopefully one from the SRS list, and get another opinion. The folks on this forum are very supportive and care that you make an insightful decision. Good luck to you, Davis.

rohrer01
06-18-2010, 04:09 PM
I would look at the closest major city, otherwise look by state. Some of us have to travel. I have a friend that lives in the mid-west and traveled to California to go to a doctor she trusted.

Back-out
06-18-2010, 04:48 PM
If, God forbid, you cut corners for convenience in choosing your first surgeon, I'm afraid you are apt to find your choices much more limited geographically and otherwise, to locate a qualified revision specialist.

Definition: "revision" = redoing a scoliosis operation which for whatever reason, was unsuccessful, i.e., led to more pain, a poor correction or other serious problem.

This is highly, highly specialized (and dangerous) surgery and often, as with so many delicate operations, you will find "fools jump in where angels fear to tread."

I suggest you glance over at the "Revisions' sub-forum for a cold shower. :eek:

rohrer01
06-18-2010, 05:45 PM
Back-out,
I don't think Davis needs revision surgery. This would be a first time. Am I right, Davis? The doctor wants to fuse 29* and 11* curves.

Davis
06-18-2010, 07:49 PM
Back-out,
I don't think Davis needs revision surgery. This would be a first time. Am I right, Davis? The doctor wants to fuse 29* and 11* curves.
yes that is correct, this would be my first ever surgery for this. The DR is talking about fusing a few vertabra in the thoracic area and in turn this should correct the secondary very mild lumbar curve.
But I am assuming that Back-Out may be suggesting to look at the revision forum for what may be in store if I make a bad decision from the beginning. At least that was how I was taking it.
Again, thanks to everyone for chiming in on this, 2,3,4 or more heads are usually better than one.

jrnyc
06-18-2010, 07:56 PM
hi Davis
i am surprised the way you describe your body at the numbers you posted! i dont feel that "twisted" at 42 and 61 degrees...i mean, i am in severe pain, enough to force early retirement, but i never think of myself as "twisted"...unless i am joking around...then i just joke that i am "crooked"...:rolleyes:
with the degree of pain you describe, i definitely would see a pain doctor...because no good scoli surgeon would operate on your curves...so that would be the option left...
also...there is NO guarantee that you would be pain free after surgery...i suspect you need to see several more surgeons to hear the truth! no good surgeon will promise you that you would be pain free after surgery...

best regards
jess

Confusedmom
06-18-2010, 08:13 PM
Hi Davis,

Welcome to the Forum. I hope it gives you some help.

A couple things to consider: first, have you tried physical therapy? I've done it twice, and it greatly relieved my pain, though it took about six months each time. I had right pain at the sacrailiac (sp?) crest, as well.

Also, some pilates instructors are trained to help with scoliosis. I have seen photos of people who have actually improved their muscle tone and posture enough with pilates to make it appear that their curve got smaller (though it didn't actually). Massage can give temporary relief, as well.

Finally, on the cosmetic issue, I can definitely understand what you're feeling. I am badly twisted, too, and I think a lot of times that's actually worse than the side-to-side scoliosis curve itself. It makes the rib hump and in my case seems to make my abdomen appear uneven in the front. I went to try on swimsuits today and that was a bloody mess! If I could find one that fit in the front it always looks ridiculous in the back, etc.

However, I try to remind myself that though this is no fun, it could be a lot worse. At least I don't have breast cancer like some of my friends or something else that could be terminal. While scoliosis is no fun, it is something that we can live with and discover how to dress to our advantage. I truly do not think most other people notice, but if they do, I'm sure they don't think any differently of us. You must know people that have some physical problem, such as being overweight or prematurely gray or something. You just think of them as people, right? You don't mind their physical shortcomings. So I guess what I'm saying is I would hate to see you undertake this very serious surgery mainly for cosmetic reasons. Pain is a different story, but I hope you can get relief another way.

Evelyn

Davis
06-18-2010, 09:36 PM
jrnyc wrote ...
i am surprised the way you describe your body at the numbers you posted!
It's very real to me and I'm very self conscious about it, have been most of my life. It seems as if the rotation has gotten worse in the thoracic area and has twisted me more and more throughout the years. Through the last few months it's mostly been the right sacroiliac/hip area hurting but more rescently, this odd tingling and the feeling that my left lower ribs (the left side of my sternum is extended) are lifting away from my body. Like the crest of my left lower ribs are trying to pull away from something that they may be attached to inside, pulling away from my innards. With this, my right shoulder cannot attain a natural position because of the thrusting back of the thoracic rib area "rib hump" on the right back side. I can pretty much feel the crests of my thoracic vertabra laying/pointing to the left.
And Confusedmom ...
I have tried different forms of physical therapy in the past, mostly yoga. The last time I ventured into that though was last November and after waking up in the middle of the night a few times, unable to move my thoracic area and in EXTREME pain I decided that it might night be such a good idea anymore. So that ended that. It seems that anytime I have taken something up to try to compensate or readjust different musculature it has always ended up making me feel a whole lot worse.
I do realise that there are those out there with a whole lot worse things going on healthwise and in this realm of scoliosis a WHOLE lot of people far worse off than I am and I have compassion for that but that still doesn't make me feel any better or make me feel okay with having what I have and living with what I have.
thank you everyone again for your honest input here. There's never too much of that.

naptown78
06-18-2010, 09:50 PM
Davis,
If there is anything you take away from this thread, please don't have this surgery for cosmetic reasons! This is a life changing surgery, it takes months, if not years to recover from, and there can be unforseen complications. I am one of the unlucky ones to have complications from my initial surgery and lived in misery for almost 2 years until my revision surgery recently. There have been some great suggestions for you for alternative conservative treatments for you to try from some of the others...I also don't believe your curves are severe enough for surgery and haven't been documented as progressing. Do more research, this is a great forum for you to learn. ;-)

foofer
06-18-2010, 10:25 PM
Hello Davis,

Welcome to the forum! I like the way you just cut to the chase about your self-loathing feelings right away. No gray area there.

When I was in my 30's I went faithfully to a chiropractor, and whenever I would visit I would at some point mention feeling deformed in this way or that. He finally urged me one day to think of myself as a bonsai tree, twisted but still entirely functional with no more misery than the average patient, usually straight-backed, that he would see on a daily basis. Through the years my pain/discomfort levels have been episodic- used to be my upper right area that gave me grief...now it's the whole left side with the right side being eerily quiet. For some reason, his bonsai analogy worked really well for me, and I decided then and there to quit taking myself out of the game cosmetically. I always wore fitted clothes- form-fitting t shirts, whatever was in style or that I liked. I definitely think so much of one's presence is how you project yourself to the world. It's also not just me and my particular scoli body type....there are several women in my town with severe scoliosis of varying types and degrees and they all just go for it with their style and presentation. (Maybe everyone should just move here.);)

That's what I would work on. Go to phys therapy, exercise, SRS scoli doctors, all of it (disclaimer: a lot of forum people are wary of chiro adjustments. I never felt that they hurt me or caused progression, but you might want to read the chiro threads on this forum before going that route)...anyway, do everything that you are advised to do in this thread, particularly seeing a second doc, of the SRS variety. Then go live your life and appreciate it, enjoy it- make the most of it. No one notices your deformity (your bonsai-ism) except you. I have always been very surprised when I tell someone, show them, and they are blown away because they are not looking for what we see about ourselves so specifically.

I tell every surgeon I've ever been to that my number one method of self-care has been denial. Pretending. How I let myself think about myself. What else can we do when we've done everything we can and here we are? Unless and until you are in a true surgical zone, this is your body and your life and you can make it a good one.

Again, welcome to the forum. This is the best place ever.
amy

jrnyc
06-18-2010, 10:46 PM
hi Davis
i believe everything you have described about your physical and mental pain...i am just surprised at the levels you describe based on the degree of curve(s) you have...

i have a pain doctor in Manhattan that i see every month...he not only gives me oral meds, he does injections for me as well...i get botox injections every 3-4 months for muscle spasms in thoracic area...it freezes the muscles so they cant knot up and spasm...they work...well enough that the surgeons want to start my fusion at T11 and go down to pelvis...they feel my upper thoracic will be OK with the shots...
the injections for lumbar have not worked as well...but this month i did have an epidural (number 3 or 4.... i lost count!) and this time it was to address nerve stuff causing a worsening sciatica...much to my surprise, this time (for the first time) it actually worked! dont know how long the relief will last...but i'll see how it goes...doctors tell me epidurals work best when used for nerve related pain...

you might get pain relief from a pain management doctor...wont know unless you try!

jess

mangos
06-19-2010, 12:41 PM
Hi :) Although I also have scoliosis (45 degrees thoracic, 57 degrees lumbar), I don't know a whole lot about how the rotation of the spine about its axis affects the surgeon's decision to perform surgery.

However, I think I've read somewhere that some surgeons may recommend surgery even with smaller side-to-side curves if the degree of rotation about the spine's axis is very severe and much worse than one would expect from the size of the curves, especially if the extreme rotation is causing pain and/or progressing. Do you know if your rotation is worse than predicted and played a role in your surgeon's decision? Someone please correct me if I'm wrong.

Davis
06-19-2010, 01:20 PM
I'm not sure if that played a role in his decision. This was the first time that I had seen this particular surgeon and I explained to him how the rotation has gradually gotten worse throughout the years.
I did suppply my older medical records and the x-ray I had last, from 3 years ago.
I'm still waiting for a date to do the MRI, but when I consult with him again I'll be sure to bring this up and ask.

jrnyc
06-19-2010, 06:10 PM
hey Davis
if you remember, it would be good to get the MRI on a disc for you to keep...i have mine, and alot of surgeons, and my pain doctor as well, want to look at it...comes in handy for seeing additional surgeons...

dont know too many who have scoli without rotation...i could be wrong, but i thought it came with the territory...i know i have it, along with listhesis, stenosis, disc degeneration, arthritis of spine, etc etc...just a mess :rolleyes:

i'd be really curious to hear how much relief a pain doctor could offer you...i havent had muscle spasms in upper back since botox shots!.. they've been a blessing for pain tx! the lumbar pain...is a work in progress...

jess

ms gina
06-19-2010, 06:41 PM
If, God forbid, you cut corners for convenience in choosing your first surgeon, I'm afraid you are apt to find your choices much more limited geographically and otherwise, to locate a qualified revision specialist.

Definition: "revision" = redoing a scoliosis operation which for whatever reason, was unsuccessful, i.e., led to more pain, a poor correction or other serious problem.

This is highly, highly specialized (and dangerous) surgery and often, as with so many delicate operations, you will find "fools jump in where angels fear to tread."

I suggest you glance over at the "Revisions' sub-forum for a cold shower. :eek:
Liked what you had to say about cutting corners. I'm interviewing as many surgeons I can. This is something not to look lightly at

kennedy
06-19-2010, 06:57 PM
hi davis
frist of all my name is kara
I was disnosed with scoliosis at the age of 13 years old at the time my i had one cuvre that curve was 43 degrees my surgeon at the time was a pedatic spine surgeon he was Dr Lerman, i had to wear a boston brace which i hated to wear.
at the age of 17 year my old spine surgeon recommed to me to be transford to uc davis or ucsf because he did not feel to conforable doing my surgery because i was going to be 18 years old on 2/24/2010
at that time my curves was my top curve was 53 and my bottom curve was, 39 degrees. then on july 20 2009 i met my new spine surgeon Dr munish gupta at the university of california at davis medical center in sacramento california he the chief of orthopedic spine surgery and a professer of orthopedic surgery he treats kids and adults. my 1st appt with him my cuvres was the same. he did my surgery on mach 10 2010 at the university of california at davis medical center in sacramento california he did a wonderful job he fused 11 vertabres in my spine from T4 to L2. my curves are smaller there before i had surgery

Davis
06-21-2010, 03:20 PM
hello Kara, thanks for sharing your story with me. Do you mean that after your surgery your curves still measured just the same? No correction?

Debra JGL
06-23-2010, 08:26 AM
Davis, welcome to the forum as well. I understand you wanting to have a curveless spine, and no deformity and lessen your pain. And people certainly go on table and under anesthesia for physical reasons alone, though I realize your having other symptoms. But this surgery has risks and can have many serious complications. When I was looking for a surgeon I remember reading that the single most important factor in a successful outcome was the skill and expertise of the surgeon. So, as many of the other people have said, find a surgeon who specializes in this - this is the main thing they do. I asked the surgeons I saw how many scoli. surgeries they do a year on adults. Somewhere I saw they should at least be doing 20+. I tried to find doctors that were recommended. Also, I went to 3 doctors to make sure I was getting a consensus about whether they recommended surgery or not. I know this can be expensive and you may have to travel, and this might be easier for me to say as I live between Phila. and NYC. But remember you have only one body and it's precious - even if not perfectly straight. Good luck with everything and looking forward to hearing how it's going.

Davis
06-23-2010, 10:04 AM
I've researched the Dr. I am seeing and he does specialise in spine surgery ... I'm not sure why everyone is thinking that he doesn't. Maybe it's because an oversight someone had posted on one of the earlier initial posts in this thread. Or probably because in the "norm" I'm not considered a "bad enough" case to warrant corrective surgery.
I do realise that it's not common for a surgeon to operate at these levels, typically, but maybe there are other factors that I am unaware of that he is taking into consideration, I'll be sure to find out all of the details on next consultation.
They called with a date for my MRI appointment for this Friday but unfortunately I'll have to reschedule as that I'm working about 15 hours a day up untill next week.
Sorry if I'm ramblng, was at hospital with one of the kids till 2am and didn't get any sleep last night and back to the office here at 8am. bah.
Thankfully I have an awesome fiance' who's really supportive of me with this.
here are some links to info on my DR ....


http://www.huntingtonnews.net/marshall/070428-staff-shuff.html

http://www.vitals.com/doctors/Dr_Charles_Shuff.html#

http://cabellhuntington.org/services/back_and_spine_center/

rohrer01
06-23-2010, 03:30 PM
Dr. Hey from N.C. corrected someone with a painful 32* curve. He is an SRS doctor.

http://drlloydhey.blogspot.com/

jrnyc
06-23-2010, 03:51 PM
wow..that really shocks me...seriously! wonder if this person saw other surgeons...cause i am surprised she/he found one who would do it!

maybe that is your guy, rohr..if other surgeons tell you to wait...?

jess

rohrer01
06-23-2010, 04:05 PM
wow..that really shocks me...seriously! wonder if this person saw other surgeons...cause i am surprised she/he found one who would do it!

maybe that is your guy, rohr..if other surgeons tell you to wait...?

jess

Dr. Hey does it for reasons of pain and quality of life. Maybe this is what Davis' Doctor is thinking, too. I'm undecided because I'm afraid. I am in surgical territory with my curve, but early surgical territory, so there's no hurry. I'm just considering the factor of getting it done while I'm relatively "young" vs. having to deal with aging spine issues besides.

Davis
06-23-2010, 04:26 PM
I'm just considering the factor of getting it done while I'm relatively "young" vs. having to deal with aging spine issues besides

I was thinking the same thing rohrer01, getting it done and over with while I'm still relatively young and work toward a better quality of life.
Don't get me wrong or think for one second that I don't know or understand how major this is, I am scared out of my mind about it. Maybe the fact that I havent even had the MRI or bending tests or anything yet and that I tentatively plan on going under in January, at the start of next year, still some time away, I don't feel too awfully a ball of nerves just yet. I'm sure that when the date draws closer my fears will grow respectively.

jrnyc
06-23-2010, 04:41 PM
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
06-23-2010, 04:50 PM
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
06-23-2010, 04:57 PM
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
06-23-2010, 05:22 PM
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
06-23-2010, 06:53 PM
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
06-23-2010, 07:43 PM
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
06-23-2010, 08:06 PM
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! :mad: That's another story. :o

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

Good health to you!

Davis
06-23-2010, 08:37 PM
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
06-23-2010, 09:59 PM
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 :eek:)...and i dont consider myself "crippled"...except on a bad, humid day like today :rolleyes:
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
06-23-2010, 10:23 PM
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/articles/how_serious_scoliosis_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
06-23-2010, 10:37 PM
in this link they do report curves of the degree you were saying, Rohrer01, as severe.

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

Confusedmom
06-23-2010, 10:56 PM
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. :o

rohrer01
06-23-2010, 10:58 PM
in this link they do report curves of the degree you were saying, Rohrer01, as severe.

http://thedynamicspine.wordpress.com/category/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
06-23-2010, 11:57 PM
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 :p
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
06-25-2010, 11:31 PM
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 :p
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...

jrnyc
06-26-2010, 04:03 AM
i have never seen my curves of 42 and 61 called severe ...one surgeon called them "moderate to severe"...i never think of them as severe..to me, "severe" means curves of 80, 90, 100, etc...but that is just my own thinking...
now, my degenerative disc disease...that is severe! :rolleyes:

jess

Davis
06-26-2010, 08:24 PM
I'm taking what you say to heart. I just wanna be fixed

Back-out
06-26-2010, 11:30 PM
I'm taking what you say to heart. I just wanna be fixed
I know, I know (pats gently on shoulder).

Don't know if a list will make points clearer as a summary. I think I can speak for all in saying we really empathize with your suffering and wishes. When it comes to a decision for or against surgery, patients are rarely encouraged or discouraged because the choice is so individual.

However, some who are highly disabled (I may be such an example) are sometimes encouraged to "get with it" - not in so many words - especially if there are insurance deadlines. OTOH rarely, some who don't seem to have passed a thresh-hold of pain/disability/disfigurement (cosmesis is the last on purpose), are encouraged to wait.

Why?

Because:

a) there really is NOT a fool-proof "fix" for scoliosis - not surgical, nor non-surgical.
b) We all want to be made "good as new" (only with the new limits of the fusion, which we try to anticipate as well as we can), and indeed,
c) the odds with a good surgeon (for most of us) DO favor significant improvement.
d) However, there are major, major risks - including the risk we will feel/function worse, maybe even look worse after surgery than we did before. Even death is a real, though rare, possibility - certainly, more than with most surgery.
Therefore,
e) one should realistically only go in for such radical surgery HOPING for things to get better - NOT to be "fixed".
f) if one goes for surgery with (relatively) minor symptoms and disability, the odds of a obtaining an outcome worse than we began with, are that much greater!

That's why reputable scoliosis surgeons (defined loosely as members of the SRS) have cut off minimums of "severity" below which they won't operate. As you've been told in spades, the surgical miinimum is a combination of absolute measurements and rate of progression factoring in a score to represent functional disability (usually the Oswestry disability index).

It's their way of standardizing the risk they are taking on behalf of the patients, in case patients seem to have unrealistic expectations, given the current state of the art (what the surgery is likely to be able to accomplish) . Then too, some surgeons exclude patients they feel are unlikely to be satisfied or who have such high risk of complications it would spoil their own surgical track record!

We want you to know this because frankly, there are almost always surgeons willing to operate even on patients below this standard. What's more, we know how tempting it can be to believe unrealistically optimistic guarantees when one is in pain (physical or psychic) . Most often we tend to discourage patients from wasting time or money on unproven non-surgical promises but the risks of surgery are even greater (one stands to lose more than that!).

It's hard to get or give a really firm answer because we don't want to hurt feelings or presume to know what another is feeling. I'm afraid this may be confusing you here. Your use of the word "fix" invites the clearest discouragement I can give, though. It simply doesn't apply to the world of this surgery.

Davis
06-28-2010, 08:31 AM
back-out, how long ago did you have your surgery and did you attain any correction at all? What was your before and after? Thanks. :)

Back-out
06-29-2010, 02:55 PM
I know you got my PM yesterday but I'm indicating it here in case anyone thinks I ignored you!

rohrer01
07-18-2010, 08:30 PM
Okay, I had to look for this thread. But here is the scoop from the NSF itself about severity guidelines: (It was in the most FAQ section)

Do you think a chiropractor could help my scoliosis?
For moderate to major curvatures:
We do not know of any long-term study which shows that chiropractic treatment can stop a moderate (over 25 degrees) or major curve (over 40 degrees) from progressing in the bone growing years. It has been our experience that chiropractors who are knowledgeable about the development of idiopathic scoliosis in children will refer young patients with such curvatures to an orthopedist for a second opinion.

Bold is mine. I knew I saw it somewhere. ;)