decisions, decisions and different opinions

[Confusedmom]

Height gain?

Okay, random question. I went for my pulmonary function test today and they measured my arm span at 5 ft. 3". My height is 5 foot 2". So, does that mean I will likely gain an inch of height with surgery? Or might I gain none because of disk and bone removal? Could I end up shorter?? :0 Also, how is it possible that I have been the same height for as long as I can remember, and yet my curve has ranged from 8 degrees (with brace in high school) to 80 degrees now? How is that physically possible??! If I have to go through this surgery, I would like for it to make me taller as a bonus! Bottom line: Is there any way to predict if/how much height you will gain?

,
Evelyn

[Karen Ocker]

Curves compromise internal organs?

My 80 deg thoracic curve caused permanent loss of lung tissue-it doesn't come back. My stomach was on its side(watermelon stomach my gastro called it). Gastric acid migrated up into my lower esophagus causing scarring and stricture--requiring dilitation --all this without much pain from the scoliosis.
My heart was rotated-if EKG electrodes are placed as if I had a normal thorax erroneous EKG reading resulted. My ECHO cardiogram even shows(still) my descending aorta is not in the usual place but shifted to one side.

Whichever way the spine goes so do the internal organs.

[Confusedmom]

Jess, Karen, Sally, Jenee & others,

Thank you so much for your thoughtful and kind advice. It really is reassuring to hear from people who have been through this, as well as those who are just knowledgeable about the subject. I agree about the issue of pain perception. I have been trying to remember what it felt like for the month or two last year that I had bad sciatica. If I can hold on to that memory, it helps me better understand why this surgery is necessary!

As you say, I should do this while I'm young(er), and not delay until I loose bone density, etc. Also, I have a good support system now, and who knows what will happen in the future. Thanks again! I'm sure I'll be checking back in the next weeks before the big day.

Best,
Evelyn

[LindaRacine]

In my opinion, I don't think the surgical outcome is necessarily very different in the two groups- only the perception is.

Absolutely.

[Marina63]

Advice

Jenee, I love reading your advice. You are always so logical and reassuring.
Thanks : ))

[jeneemohler]

In my case, I waited a year too long...

I had some pain for almost 15 years prior to surgery, but it was manageable. I stayed very active, which I believe stabilized my back with strong core muscles. It allowed me to postpone surgery for many years. My surgeon was also of the mind set to wait until absolutely necessary. But eventually, by my late 30's, it progressed to the point where I had regular epidural injections for several years and was on anti-inflammatory meds and an occasional pain pill. (Which I was stubbornly resistant to, even though it really helped on the bad days.) The progression started getting worse and I knew the time for surgery was coming near. Still, I put it off "one more year". I shrank 3" in the next 6 months, and my curve really collapsed. At my age (49 last year at surgery) I was not as flexible as a younger person, so I only had a 50% correction. Which put me right back at where I was a year before surgery. If I had done it the year before, I would have had a much better correction.

But with that being said, I am still doing awesome, even though I waited too long.

It is such a hard decision. I agree about waiting as long as possible, but at some point, most of us eventually make the leap. I personally have never regretted it. It has made my life so much better. Even if you don't have any pain, you will no longer have that black cloud hanging over you, wondering if and when surgery is in the future. It seems to dominate your thoughts at times. You will no longer have to worry about your spine progressing or collapsing, and you can get on with your life! And you do heal faster if you are younger.

As far as patients who don't have pain prior to surgery not being as happy with the outcomes-it makes total sense to me. In my opinion, I don't think the surgical outcome is necessarily very different in the two groups- only the perception is. I will gladly take my muscle tightness and the sensation of being fused any day to the feeling of sciatica or spasms I had prior to surgery. If someone doesn't have that pain before hand to compare to, they may not be as happy with the surgery, even though it may be the same outcome. If you are progressing, I would take being fused over the uncertainty of the future-it is usually only a matter of time. You never know when it will collapse like mine did. And you have to remember that the main goal of surgery is for prevention of further progression and deterioration, not to relieve pain. Eventually, most scoli patients do feel some pain, and hopefully you will be saved from experiencing painful sciatica, etc., in the future by being fused. I wouldn't wish that on anybody. Being fused truly isn't that bad. It hasn't stopped me from doing anything, and I am fused from T3 to S1 with pelvic fixation. It is a little rough at first, but by 6 months post op, I was climbing mountains, literally! I've been roller skating, and I was just released to go skiing at my one-year check up. I am a perpetual optimist, and even I was surprised at how few limitations I have with fusion. For me, it is so much better than the alternative. I can't imagine where I would be in another 10 years if we lived in a time where surgery wasn't an option... We are indeed fortunate.

Good luck, and keep us posted. You have lots of support!

[LSKOCH5]

[QUOTE=Pooka1;134314]I am glad you made a decision.

I find the comment about a 45* compensatory T curve possibly compromising organs coming from an orthopedic surgeon to be mildly shocking. I still find it shocking even given the progression. As far as I know, you need to get north of 90* or more for some period to demonstrate any organ compromise in adults. On the contrary, collapsing a lung during some spinal surgeries does compromise lung function for a few years as far as I know. Not sure about the thoracic insufficiency issue in small children.

It's much more believable to me, since we found from the doctors that our son's lung could not fully expand due to his spine prior to surgery, although he is a teen vs an adult.

[loves to skate]

Evelyn,
Coming from someone who had surgery at age 67 and with your curves and your age, all I can say is "Hello". To me it is a no brainer. I know fear can paralyze people, but please don't let it paralyze you. I can tell you, I wish some brilliant Doctor would have diagnosed me much sooner than at age 65.
Sally

[golfnut]

Evelyn,
I was extremely active prior to surgery with pain only when standing a lengthy period of time or lifting too much or raking leaves, etc. While no one wants pre surgery pain, it would make the decision easier. I even started a thread once "Is surgery a gamble?". I truly believe that not having surgery is a bigger gamble with a large curve. My ribs are now separated from my hips and i can take deeper breaths. Dr. Lenke would not recommend surgery if he didn't think your quality of life in later years would be better than without the surgery. You should have seen some of the people in Dr. Lenke's waiting room that delayed their surgeries. It was pretty sad. I am so thankful I had the surgery when I could still get a good correction. You are so fortunate to have Dr. Lenke as your surgeon. I will email you with my phone number.

[jrnyc]

Ev, i just read back over your entire thread...
i once told you if i were you i'd consider waiting because you said
you had no pain...but now i think you are doing the exact right thing by
having the surgery at this time....
i am absolutely amazed that you don't have pain!!!
i need fusion T4-sacrum....and i have incredible pain....from the curves,
the bad discs, pain from sacroiliac joints as well...
everything was fine til i herniated discs, as i mentioned....then the pain kicked
in and never stopped!!
i think you would be taking a big chance not having the surgery now, especially
when you are able to have Dr Lenke!
without a crystal ball, you do not know if/when the day would come when
you would wake up with typical lumbar pain that so many with low curves
have..
i hope you sleep well, knowing you made a good decision....
i think you are doing the smartest thing...

jess

[Pooka1]

I am glad you made a decision.

I find the comment about a 45* compensatory T curve possibly compromising organs coming from an orthopedic surgeon to be mildly shocking. I still find it shocking even given the progression. As far as I know, you need to get north of 90* or more for some period to demonstrate any organ compromise in adults. On the contrary, collapsing a lung during some spinal surgeries does compromise lung function for a few years as far as I know. Not sure about the thoracic insufficiency issue in small children.

And as for the elephant in the room...

33* at 22 years old
80* at 39 years old

I am guessing Dr. Hey would classify that as a collapsing spine. Pediatric orthopedic surgeons need more data on this issue. Different data will change treatment paradigms (or should). Parents and kids are presently being given what seems like potentially very wrong information.

Good luck.

[leahdragonfly]

Hi Evelyn,

I know how tough this decision is! I wonder if you have followed the posts by golfnut (Karen)--she was in your similar situation with a very large curve but little pain, and she has had a fabulous outcome with Dr Lenke. It might help you to read back through some of her threads. She is just past one year post-op and I believe very happy.

Best of luck,

[jrnyc]

hi Ev
congratulations on making the decision and booking the date!

how much more progression could you expect if you didn't have the surgery...?
did you ever ask any surgeon that question....?
your curve must be large...Dr Lenke stopped taking patients without big curves
a while ago, didn't he....? so just that you "qualify" to be his patient says something!

have you considered how long your luck would hold, not having pain with such
a big curve....?
i managed my scoli very well until i herniated discs in lower spine...that
happened when i lifted a little kindergarten chair at work....at around age 50...
personally, i think not only do the odds of injuring one's back increase with age, but
i think they also increase with having scoli....so age plus scoli, in my book, makes injury more likely....
that's just my view of it...
if you consider that possibility, having the surgery while you are young-ER
is wise...and at your age, you are still young-ER...
happy birthday, by the way...

best of luck....
jess

[LSKOCH5]

Although I can't address your pain issue, I'm so thrilled & relieved you've chosen Dr Lenke. And that you have caregivers lined up not only for your kids but for yourself. Without surgery progression will continue to get worse, it will affect your organs & you therefore will end up in pain at some point. And you're young & active now, which will help the success of your surgery & recovery. IMO, you're doing everything right to avoid a rough future, and you've put your future in the skill of the foremost scoli surgeon. Wishing you peace about your decision and the best outcome possible!

[Confusedmom]

Me again

Hello Everyone,

I unearthed this thread -- my first post on the forum from a few years ago-- so I can continue my story and keep things contained in one place (more or less) -- I know Linda likes that!

Anyway, I'm really going to have the surgery now! I'm scheduled for March 14th with Dr. Lenke. He has moved the date a little bit twice, so I haven't changed my signature yet. All in all, I am feeling good about things. I have my care takers in place. My mom and husband will be coming to St. Louis with me, and I have other family lined up to care for my kids for the two weeks I'll be gone.

I've been re-reading Wolpert's book and getting my house organized. And I'm continuing to read the forum, as always. I've also been exercising more and taking my vitamins. And I lost about 15 pounds last year, so I'm close to the weight I want to be at for the surgery (could lose another 5-10, but won't sweat it if I don't).

Long story short, everything looks good except this: it's still a big gamble. I am going in with what Dr. Lenke measures as 84 degrees thoracolumbar, something like 45 degrees thoracic. My local doc measured it at 68 thoraco, so I'm not really sure how big the major curve is. Let's just say "significant."

I have documented progression, which is greater than 1-2 degrees per year as an adult. My curve was 33 degrees when I graduated from college. (I'm 40 now -- as of this week! Ugh.)

So, these are "slam dunk" reasons for surgeons to recommend surgery, as far as I can tell. Very large curve and undeniable progression.

Problem is -- I really don't have much pain. I had some sciatica last year, but it resolved when I lost weight and started eating better. I can still pretty much do whatever I want -- step aerobics, shopping, cooking, you name it. I don't run, but I never have. I do get a sore back if I lift heavy things or stand still for long periods of time, but doesn't everyone?

So, I'm really supposed to go through with this and gamble that my pain won't be worse after recovery? Of course, I understand that the surgery and recovery itself will be very painful. I'm prepared for that (or at least as much as I can be). It's that question of chronic pain afterwards. And will it be less than the chronic pain that I'm supposedly going to have if I don't have this surgery? And then there are all the risks and complications to worry about. I have been hearing about too many cases of non-fusion lately, which makes me think the first surgery is just opening up a can of worms for future surgeries.

I know I am going to do this. My mother retired from her job so she can take care of me and help with the kids during recovery. I guess I'm just looking for reassurance that this really is the right thing to do. I read Linda's post on a different thread that reminded us once again that adults going into surgery without much pain sometimes regret having the surgery. Am I going to be one of those adults? On the other hand, is it wise to delay surgery on an 80-something degree progressive curve? Thoughts?

Sorry for the rambling. You'll probably be hearing a lot from me over the next two months. I have already gotten invaluable advice and inspiration from this forum. So, thank you!

Evelyn