decisions, decisions and different opinions

[Vali]

My surgeon told me i would have significant pain reduction, but that it may not be completely painfree. My Neurosurgeon told me, that he was optimistic that i would be pain free. He was right! After all, he had looked after me from 2007-2009 and was the one who ordered my spinal injections when i needed them!

[lray]

My surgeon told me the exact opposite. His words were, "Those with little or no pain prior to surgery, tend to have the best results." My pain was low to moderate and I'm now painfree.

I would think that waiting would only give the pain a chance to worsen? It was certainly worsening for me.

My surgeon also said this, as well as clarifying that he will be able to achieve much better correction now rather than later when my curve is another 10*.

Hi...

I've found a huge span between conservative and radical surgeons. I personally have a lot more respect for conservative surgeons, and would personally choose to wait. I've said many times that adult patients with little or no pain going into surgery seem to have the worst outcomes.

Were you told that severe lumbar curves can cause kidney and gastrointestinal issues? I'm not aware of any such research, and would be interested to know if there is any.

Regards,
Linda

Yikes, that's quite a statement! That's precisely what I fear actually. I'm glad to see that others disagree with this, but this is still what concerns me about having surgery. I do feel pain, but again I'm stuck on the levels of pain that people claim to have. I have specific pains and achiness - and what I would say "discomfort" in general. But I am able to do what I want and don't take painkillers to get through the day.

Linda, I'm also curious what you mean by radical - just those who are willing to do surgery without waiting?

[CHRIS WBS]

That’s my understanding as well, Jennifer. In fact, there were a couple of posters here who repeated the same observation from their surgeons, one of whom was Dr. Boachie. The pain I experienced before my surgery was structural in nature. I was beginning to feel the effects of a collapsing spine, but it did not disable me to the point where I had to quit my job and start a regimen of taking daily pain medication. Now that my spine has been straightened and stabilized, I have no pain at all.

[JenniferG]

Hi...

I've found a huge span between conservative and radical surgeons. I personally have a lot more respect for conservative surgeons, and would personally choose to wait. I've said many times that adult patients with little or no pain going into surgery seem to have the worst outcomes.

Were you told that severe lumbar curves can cause kidney and gastrointestinal issues? I'm not aware of any such research, and would be interested to know if there is any.

Regards,
Linda

My surgeon told me the exact opposite. His words were, "Those with little or no pain prior to surgery, tend to have the best results." My pain was low to moderate and I'm now painfree.

I would think that waiting would only give the pain a chance to worsen? It was certainly worsening for me.

[Back-out]

That's just fabulous, Lynette - the correction, your joy in your doctor, your decision - everything.

I hope everything continues to fall into place for you. I've been worried about your leg pain as well as your activity level so soon after surgery, your relative youth notwithstanding (bed-making? )

What concerns me most is having just learned on another thread how important it is to avoid bending, twisting etc, for the first three months (to insure fusion and avoid pseudoarthrosis -if, remarkably, I've spelled that right! ).

But OTOH, your lower fusion leaves you much more mobility than mine will (and that of others).

Way to go, all!!

[LynetteG]

Hi Evelyn, my main curve was lumbar at 85 degrees at age 44. I had minimal pain prior to surgery, however, I couldn't stand for more than ten minutes without feeling a lot of pain, so it was starting to affect me taking care of my boys and doing day trips with them. My curve was progressing quite rapidly in the last year, and I was told that my stomach organs had shifted, and would likely continue to shift upwards causing constriction to my heart and lungs, also my pain would definitely worsen, and if I had the operation now rather than later, I would have a much better chance of a good correction, and the surgery would be a lot easier on me now rather than when I'm older. I am really happy that I chose to have this surgery now, obviously I'm not pain-free yet as I'm only seven weeks post op, but my body looks great for the first time in many years, before I looked so ugly and deformed. Also I don't have to worry about my heart and lungs anymore, or think about facing this surgery anymore, as it's now in the past. I was lucky to get a great correction, lumbar went from 85 to 27, and thoracic went from 55 to 19, so I'm very happy with my results, and thrilled that I researched my doctors, and I feel like I got the best doctor in the universe

[loves to skate]

[QUOTE=Confusedmom; Seems like lumbar curves have fewer severe consequences??? [/QUOTE]

Severe lumbar curves can land you in a wheel chair.
Sally

[jrnyc]

Evelyn
"you may be in worse pain after the surgery"...?!!!!

i would be REALLY careful going ahead with any surgery with a warning like that from the very people who would do the surgery!!! seriously..what then is their selling point..? you'll stop progression of the curve(s) but be in agony?

i have severe lumbar pain...i would never ever opt for this pain by choosing surgery!! i was hoping to opt out of it with surgery!

jess

[sccrm08]

I am fused down to L4 and had a great deal of pain prior to surgery. But at 3 years post op, I am pain free for the most part. Sometimes I have a bad day but am so thankful I had this surgery. My Dr. also told me there was a chance that the fusion would put more stress on the remaining discs, but we will deal with that when the time comes if it comes.

[diane2628]

I had surgery at 10 years ago, at age 30. I had some pain at the time, and had experienced some progression, but it wasn't too bad yet. But I did feel like the pain was starting to sneak up on me a bit. I decided to have the surgery sooner rather than later - I agreed with the surgeon that it was likely to continue progressing, and that I would have more pain and potential lung capacity issues later, plus I felt it would be an easier recovery when I was young and healthy.

In retrospect, I could have waited another year or two (and if I had it to do over again, I think I would have waited a bit longer)....but I'm glad I did it and have had no real problems in 10 years. So, based on my experience, I'd say wait a year and see what happens. BUT - I didn't have 12 degree progression in 5 years the way that you have. That's a big difference with your scenario.

But you don't need to decide today. Seek out a third opinion, wait and see how you feel in 6 months when you've had a chance to digest it and think about it a bit. That shouldn't make much of a difference in your progression or your life situation - so don't rush it.

[LindaRacine]

Seems like lumbar curves have fewer severe consequences???

Lumbar curves are far more likely to be painful than thoracic curves.

[Confusedmom]

Wow--thanks for the feedback!

Hello all,

I am not totally sure how this works and whether I'm supposed to respond to the group or individually, but, I really want to say a huge THANK YOU to all of you. This has really been a Godsend to finally be able to "talk" to other people who understand my problem. So, thank you to the Forum and to David Wolpert whose book told me about it. (Note that NO docs I have seen mentioned it.)

To answer a couple of questions, yes, these are scoli surgeons. However, I live in Indianapolis, a mid-market, so I know they do other spine surgeries as well. There just aren't enough cases here for scoli full time (at least not adult). So, one question I have is, is it worth travelling to find a doc who does nothing but scoli? I'm thinking St. Louis or Chicago since that's not too far.

I was interested to know about those of you who have decided to have surgery despite not have signif. pain. What did your docs say the reason was? I am told "progressive deformity and loss of function" but so far haven't seen much function loss. Seems like lumbar curves have fewer severe consequences??? On that note, Linda, I will double check with my doc regarding his comment about potential kidney/gastro troubles.

A couple of you asked about disk degeneration. Both docs have said that because they are fusing to L4/L5, I could expect the resulting stress on L5 to put pressure (read: pain) on my lowest disk in the long term. Right now that disk is healthy. I guess this is not an issue if you fuse to S1 or the pelvis, but they are trying to preserve flexibility if they can. Both docs have said I may actually be in worse pain following the surgery.

Amanda, love your quote about serving as a "horrible example." Good to keep some humor about this. Well, thanks again for all the thoughts. I am definitely going to see at least one if not more than one additional surgeon. I look forward to "chatting" with you all more in the future.

Evelyn (a.k.a. Confusedmom)

[ADMoul]

As you can see from my signature, I had a 92 lumbar curve going into surgery. Although it was not carefully monitored, I know my curve progressed significantly throughout my adult years. I had little or no pain up until the last few years and it seemed to get worse with menopause. As severe as my curve was, I had no gastro-intestinal issues and no pulmonary problems from the thoracic. Several years ago, I wouldn't have dreamed of doing this surgery. I pretty much went through life in denial about its progression, dressed to cover up and bought bigger bras! Anyway, even though my spine was very stiff which limited correction, I believe it was the right time in my life to do it. I do not exaggerate when I say that all of my pre-op pain and nerve symptoms were relieved and it was getting to the point where they were interfering with my life. I found a great Dr. and have been blessed with an amazingly rapid recovery. Probably one of the hardest, scariest decisions I ever made but it turned out to be one of the best. Consult with a good adult scoliosis specialist and weigh your options carefully. Had I done it when I was younger, I might have had a better correction but it's hard to talk yourself into something this big if you're not having pain. Also, the longer you wait, the more advanced and refined the technology becomes. I think you'll know when it's right for you. Best of luck!

[CHRIS WBS]

At 38 you state that you have a 67-degree thoracolumbar curve with significant rotation and documented progression of 12 degrees in five years. Without knowing what kind of doctors you have been seeing, I can assure you that no competent adult scoliosis surgeon would suggest that you may never need surgery. Your spine is collapsing and it will continue to collapse. I would address the problem now and not wait for it to worsen. My thoracolumbar curve reached 80 degrees and I had a significant deformity. I underwent a 12-hour surgery that included osteotemies and laminectomies. While in the hospital my surgeon said he wished he could have treated me when I was younger. At age 59 my spine was rigid and I presented quite a challenge to my surgeon. And consequently I did not get the dramatic cosmetic improvement for which I hoped. While I’m much improved, I still have a deformity. Do these docs want you to wait until you have a 90 degree curve? As others have suggested, I would get opinions from qualified adult scoliosis specialists.