Should I do this?

[Doodles]

Joyful--All of the above sounds so familiar--especially convincing friends and relatives. My mother especially! It was an incredibly hard decision. After my Sept. appt. my 88 degree thoracic jumped 10 degrees by March 31st when I had surgery. It was progressively increasing year after year and I was having a lot of deformity--still people said they didn't notice it! I did have pain but no lung problems. I would do it again. Janet

[jrnyc]

Hi Megz
i suspect it was your thoracic curve that gave you the lung problems & not the lumbar...but i am glad for you that you made the decision & are having a good outcome!
best of luck in continued healing

jess

[titaniumed]

Joy

Things will be ok, try not to worry too much. Part of my decision was due to having 2 70 degree curves at age 49. I knew that eventually, growing older with large curves would be a problem.

The amount of people being diagnosed with scoliosis at age 60 is high, about 60%. The one thing we know for certain is the fact that age plays a big part.

I just cant believe that you and others with very large curves, and 90 is large, have no pain. People can experience major pain with curves in the 30 degree range. Maybe your bone spur growth is minimal, or you just have extra room for various nerves, and minimal disc problems. If you made it all these years without pain, you are very very lucky.

In order to convince people, they will need to be educated about scoliosis.
If you have any problems with your class, let us know.

Do you have any x-rays to show? They help.
Ed

[hdugger]

Hi Ed,

I suspect the high thoracic curves aren't as painful - my son has minimal pain with his 50 to 60 degree curve. His first orthopedic surgeon (not a scoliosis specialist) said that it was so high he could get to 90 degrees before it would start to affect his lungs.

Not that we're planning on that.

[LindaRacine]

Hi Joy...

It might surprise some that I'm not as enthusiastic about choosing the surgery option. First, I'd be sure that the curve is, indeed, increasing. Have you had a pulmonary function test? If your curve is progressing, and if your PFTs have been measured at 50%, then I agree that surgery is probably the only option if you want to continue functioning like you are.

The one thing that seems pretty universal in terms of adult scoliosis surgery is that the people who have the most amount of pain seem to have the best outcomes. I think that's because they have the most to gain.

I can only imagine how difficult the decision is when you don't have pain. It's hard to imagine signing up for a surgery that you know is going to be relatively painful, at least in the short-term, when the benefits aren't so obvious. I can almost guarantee that you'll think you made a mistake for the first month or so post op.

Good luck with whatever you decide.

Regards,
Linda

[joyfull]

Thank you all for your observations.

Linda, Dr. Lonner's PA had me breathe into a hand held device without using my lips. That is how she came up with the 50 percent decrease in lung capacity. I can feel that the curve has increased since I went to Clear in 2007. Curiously, since the curve has moved more to the side and over, people say that it is actually less noticeable than when it was smaller and more towards the center of my back. In other words, my back is more flat now.

You seem to really understand now I feel; walking into the hospital with no pain to undergo an ordeal that hopefully won't lead to chronic pain to prevent hypothetical progression. Anne, you seem to have some of the same feelings, but you did have some pain to justify your decision.

I'm just putting one foot in front of the other and hoping that I'm doing the right thing. Now if Governor Christie doesn't cut my state employee health benefits, I'll be all set to go in June. Best to all, Joy

[LynetteG]

Joyfull - that's exactly how I feel right now. I have little pain right now even though I have a large 85 degree lumbar curve and 45 thoracic. However I know that my curves are progressing rapidly and I want to have a happy healthy future with my sons. It has made the whole process very difficult however because of the fact that my pain is minimal right now, and will be far worse right after the surgery, but ultimately long term, I KNOW I will be better off. I don't want to have a 100 degree curve or worse when I'm just a little bit older and then experiencing dire pain with no chance of correction. It will definitely feel weird for me to enter the hospital feeling fairly healthy, and leave feeling way worse - but as they say - short term pain for long term gain. What's making it especially hard also for me are my two sweet little boys, who are crying a lot already saying they don't want me to be away from them for seven days in hospital - I'm just hoping and praying that there will be no complications and that I will get home after seven days or before and not longer! Anyway, I won't think about that, I'll focus on being positive and healing rapidly . Anyway - I definitely understand your predicament, but as the others say, if your curve is increasing fairly rapidly, and with you having such a large curve, I would encourage you to get the surgery while you're younger, and while they have better chance of correcting it for you. Good luck with your decision!

[titaniumed]

Hi Hd

Thoracic curves can be painful. If it wasn’t for my Chiropractor who would adjust my thoracic vertebrae supine, I don’t know what I would have done. Ive been to quite a few Chiros, and not many know how to do these moves which is done with their fist under your back. That worked for pain relief for 20 years. It also helps if your Chiro has scoliosis, like mine. He studied scoliosis for decades.
Dr Martin Rutherford.

90 degrees is a huge curve. I had breathing issues with a T70. My curves also were 50s back when I was 19. My pain started when I was 27 back in 1986.

Was this Doctor saying that your son doesn’t have to worry about things till he hits 90 degrees?

I wonder if Bill Clintons cardiologist ever suggested an angioplasty? Hmmm
You know he is in the hospital right now.
Ed

[debbei]

My thoracic curve gave me pain from time to time. For years, I'd get this pain and not know what it was. I think a little part of me knew that it was my scoli, but it didn't happen all that frequently. When it did, it would last a few weeks. I thought I just 'did something' to make my back hurt. I haven't had THAT pain since surgery.

I wouldn't feel right, knowing that I had a large curve and waiting till it got to 90 degrees. I'd think the possibility for correction wouldn't be as good.

[naptown78]

Joy,
I agree with Linda. Do you have documented progression of your curve? And of your PFT? There are more than one type of PFT's to be done. Have you gotten a second opinion and a third? I didn't have great success with my surgery so I am a little conservative with recommending surgery without pain and/or disability. There is a risk of not getting the results you want.

[jrnyc]

Hey Joy
i would be really worried about the lung capacity decrease! cause...if that is progressing, i KNOW what it would be like to try to breathe with less capacity...i was in the hosptial with septesemia (splg?) & i had fluid in my lungs! i had 2 hours of oxygen left in my blood, according to the doctor who found the problem.... at midnite!! they rushed me into ICU, put me on pressurized oxygen...very uncomfortable...but after i took it off my face 3 times, they said one more time & they'd shove a respirator down my throat! i left the pressurized oxygen on my face after that! 10 days later, i went home...but they didnt think i would make it, for a while!

soooo...if there is a chance you will not be able to breathe...i'd do it...i can understand, though, how hard it is to decide without pain! i am in daily pain, & still hesitating! my thoracic pain is being treated with botox shots...but i dont know how long that will work...last time measured, in oct 2009, it was 40 thoracic & 61 lumbar...the lumbar causes pain all the time...the thoracic not as bad...BUT...if my thoracic increases any, i may be looking at full fusion, like titaniumEd...instead of L4-sacrum & T11-S1...

best of luck...you will be in great hands w/Dr Lonner...that is who i expect to go to for surgery...

jess

[joyfull]

Linda, Who did your surgery? Why were you disappointed? At 21, I saw a Dr. Levine who wanted to do Harrington rod surgery because my curve was maybe 47 degrees. I'm glad I waited. I can feel shifts in my torso, more concave, more and different rib hump. Right now, I'm not AWARE of real breathing problems. OK, so I can't run a marathon, and I get winded a little before my friends if we do a hilly walk, but it's really no big deal. In 2007 when I went to Clear, they measured my curve as 83. It is now 85 according to Dr. Lonner, 90 according to Dr. Boachie, so it is definitely progressing. Whether or not I will have serious problems no one can actually predict, but all the surgeons whom I've seen have recommended surgery and I don't think it's for mercenary reasons.

Jess, what you went through sounds horrific! My difficulties, if they can be considered that, are mild in comparison. I believe that you said in a previous post that you are apprehensive about what it will be like to live with a fusion. I have the same concerns, but so many people live such active lives that my fears have been somewhat alleviated.

David, the insurance issues are very real. Governor Christie has threatened to cut health benefits for part time teachers, (I work 3 1/2 to 4 days a week) and he is starting to make extreme cuts now. I must admit the the cosmetic aspect plays a part in my decision. But I'm really afraid that if I develop heart or lung difficulties later on, the surgery will be much more risky or, even worse, impossible. People do die from complications from scoliosis. The people on this forum seem, for the most part, satisfied with their decisions and very active and vital. I've seen Dr. Boachie, Dr. Lonner, had a phone consult with Dr. Anand. I'm probably going to cancel the March 17th appointment to see Dr. Lenke because the logistics of having surgery there present too much difficulty. I saw Dr. Neuwirth 15 years ago, another doctor in Cleveland before him, so I'm confident that I'm making an informed decision. Having a top notch surgeon seems to be key. All the best, Joy

[LindaRacine]

Hi...

I actually didn't say I was dissatisfied with surgery. I was pretty impaired in terms of function prior to surgery, as I couldn't stand for more than 5 or 10 minutes. I had pain every day, so I felt the risk was balanced by the potential reward. After surgery, I was not very happy in the short-term. I traded lower back pain for upper back pain. Fortunately, the upper back pain didn't keep me from functioning, and did eventually get much better. I still have upper back pain, although not on a regular basis. If I had to do it again, I probably would, although I'd want to know that I might be setting myself up for new pain. (For some reason, I've always found it easier to tolerate the pain I'm used to than to tolerate pain that's unusual.)

The reason I posted what I did is that I feel strongly that one should go into surgery with truly informed consent. Knowing that you may have some long-term pain post op will help you accept the outcome if something like that happens. (Hopefully it won't!) As you've already seen, there are a lot of people who are very gung ho about surgery. But, if you look around, you'll also find people who feel they made the wrong decision.

In the end, I think the advanced degree of your curve would force you into surgery at some point anyway. Assuming that your curve will increase the average for large curves, of around 1-2 degrees a year, it wouldn't take very long before you had a curve that really had a negative impact on your life. And, waiting 5-10 years might be detrimental on several fronts. So, if I were in your shoes, I'd almost certainly opt for surgery.

Regards,
Linda

[joyfull]

Thanks, Linda, for the thoughtful response. I need to speak to Dr. Lonner about the risk of chronic pain afterward. I remember Dr. Boachie saying that usually if you don't have pain before, you don't have pain afterward.

Dr. Lonner said that I don't have to go all the way to Missouri to have the vertebral resection procedure with Dr. Lenke, that he would do it if I wanted it but he feels it's too risky. I was thinking that since Dr. Lenke does this procedure routinely, then it's probably less risky when he does it, but I didn't say that! Then Dr. Lonner said that he can do a partial resection after he sees how the surgery progresses.

I'm most likely going to have the surgery here in New York with Dr. Lonner, since the logistics of flying out to Missouri, staying in a hotel, flying back and being so far away from the surgeon seem daunting and expensive! If I give up the few degrees more correction that I could have gotten with Dr. Lenke, so be it. I think I'm going to cancel my appointment for the March 17th consult with Dr. Lenke.


Dr. Lonner said he would do a side minimally invasive release and then a posterior fusion. I would be face down the whole time. I suppose he is trying to get the same results as Dr. Boachie would with a full anterior/posterior procedure. He said the surgery would take 8 to 10 hours. He said he could get approximately 50% correction. Does this sound reasonable to you?

Thanks, Joy

[LindaRacine]

Hi Joy...

I think surgeons usually estimate the curve reduction very conservatively, so I suspect you'll get at least 50% correction.

I personally wouldn't travel any distance for spine surgery if I felt there was someone close by who was qualified. So, I think you're probably making the right decision.

Regards,
Linda