The "I'm Sorry I Made the Decision to Have Surgery" Sticky Thread

[LindaRacine]

This thread is for anyone who wants to post details about their bad surgical outcomes. Please post your details, including the approximate date of your surgery, your age at the time, the name of your surgeon, and the levels that were fused. No debates or discussions will be allowed. If you have a question about a poster, please send them a private message.

[LindaRacine]

Wonder if people are afraid to name names. If you tell the truth, you should not be afraid to post information about a bad outcome. If I take out the request to include your surgeon's name, will it encourage people to post?

[mabeckoff]

Actually, the reason that I have not posted is that I cannot decide to post here or not

[LindaRacine]

I think it's way too early for you to know if you're going to be happy with your outcome.

[Marina63]

Me too! Even though my recovery is going well, I'm still not in that "happy I did this" place. I'm getting there, I think. Because I wasn't in any major pain before, and feel worse now, I'm not convinced I did the right thing. I guess my curve would have continued to progress, but who knows?

Getting there.......slowly : )

[LSH]

I was fused from T9-S1 in 2005 by Dr. Castellvi at Florida Orthopedic Institute-I had a severe rotated scoliosis approximately 60 degrees-I went from occasional pain to daily severe pain, sciatica that made me scream and fecal incontinence-I did find Dr. McMillan at Shands who fixed some of it in 2008 but by the end I had to learn to walk again, potty train myself. This and getting married are the two worst mistakes of my life LSH

[allycat]

Hello everyone! I was diagnosed with mild scoliosis at 13 years old. I had no pain or issues (really never gave it much thought) until my mid-thirties when I hit pre-menopause. My curves began increasing as did my pain albeit slowly. By the time I reached my early 40's, I decided I'd had enough. I had my first fusion surgery (fused T-10 thru L-5) in June 2008 with Dr. A. L'Heureux at the Spine Hospital in Oklahoma City. The surgery went fine, as did the days I was at the Spine Hospital. After 4 days, I was transfered to Valir Rehab Hospital in OKC for 7 days. As great as the nurses, care, facility and food were at the Spine Hospital, everything was just as HORRIBLE at Valir. By the time I was 9ish months post-op, I began telling Dr. L something wasn't quite right. This continued until I was about 16 month's post-op and had a severe forward sagittal imbalance, flat back and junctional kyphosis at the T-9/T-10 level. He just would not listen or acknowledge my concerns. RESULT-UNHAPPY I HAD SURGERY.
I began getting other opinions, and after 3 wonderful scoliosis specialists giving me the same information, I decided to have revision surgery at Baylor Hospital in Plano, Tx. My revision surgery was done June 27, 2011 (T-4 thru S-1 with pelvic anchor screws). The sagittal imbalance has been corrected as have the flat back and junctional kyphosis. However, I am still taking a significant amount of narcotic pain medication, much more than I should be at this point. Also, my back is incredibly sensitive to touch, to the point I won't let anyone touch it, and my pain level hovers around a 6 most days. If I still have this much of an issue with pain at the 12 month post-op mark, I will have a CT Scan done and try to find the cause of the pain. An additional surgery is not out of the question if the pain does not subside by 12 months post-op. RESULT-VERY VERY HAPPY I HAD SURGERY! My surgeon was able to fix 3 significant issues which did improve my quality of life somewhat. I believe I just drew the short straw when drawing for spines.
And there you have it!

[SusanS]

I haven’t posted here until now for a couple of reasons, first is I’m just one year post-op from the first two surgeries and it might be too early to say what my outcome is. Secondly, I don’t want to bad-mouth my doctor. Despite some frustration, I like him and I made the decision to go to him. Maybe what I'm experiencing is normal given my circumstances, I just don't know.

I went ahead and posted here because if I could go back in time knowing what I know now, I would not have had this surgery. I am far worse off today than I was before. Before I had better physical mobility and I could do most activities, but I had absolutely debilitating pain levels and some nerve deficits. I was told that I risked permanent nerve damage by not having surgery. Now it feels like surgery brought about worse nerve damage than I started with. Hopefully this is just temporary, I don't know.

I still have terrible pain, but I now have right hip and right leg pain that is MUCH worse than before surgery. My hip and leg are swollen and feel ‘dead’ and clumsy so I trip and fall which I never used to do, I have to walk with a cane now, which I never had to do before. My mobility levels are far worse than before. Now I move like a 90-year-old. I used to be a fast walker, now I just creep along slowly with an unsteady gait. I hear people talking about being able to swim and I can’t believe it, I can’t imagine moving my arms like that, by back just doesn’t allow me that kind of movement anymore.

My follow-ups have consisted of me sitting in a chair while we have a pleasant talk during which my doctor examines my x-rays. There has been no physical exam except on one visit they did take my vitals. (i can sit like a champ for a little while, so I probably appear to be just fine since I'm only observed sitting.) I’m thinking that given the nerve damage history, at least some basic reflex tests might be in order or monitoring the nerves for signs of healing. I’ve had a lot of swelling and one leg is shorter than the other now, and I seem to have some rotation in my body. My right leg is now knock-kneed and pigeon-toed and the hip joint feels out of place. They have x-rayed and MRI’d my hip but so far no guesses as to what is wrong.

Once I can identify the problem with my right hip and leg and get that fixed, and once my back pain resolves (it still feels like I have a 2x4 nailed into my back and hips) and once I can return to a normal life, then I will post on the ‘I’m glad I had this surgery’ thread.

I hope that's not too far down the road.

[Confusedmom]

Susan,

Can you give us a little more background? How old are you? What levels did you have fused? Why did you have two surgeries? Are you planning to have revision surgery, physical therapy, or anything else to deal with these issues?

Sure hope you begin to feel better soon! I would think your surgeon would want to take some kind of action at this point.

Best,
Evelyn

[Cornerthree]

I think it is a good idea to have a section here where people can tell their true stories without having any return comments. It makes for good listening skills.

I was a normal, healthy 20 year old college student. I had been braced with a Milwaukee brace as a teenager but it didn't work, and so, before I aged-out of my parents medical insurance, I thought I would just "take care" of my scoliosis problem and have the surgery. My curve was about 60/40 degrees, getting a few degrees worse every year. Unfortunately, the people I had met that had had the surgery never told me what it would REALLY be like to live with a fused spine. They were afraid to speak honestly to me. And of course the surgeon was only too happy to perform the Harrington rod/Wisconsin operation and get his huge fee. He told me what I understand spinal surgeons are still (sadly) saying today: "You'll be able to do everything you did before the surgery except for a somersault or a contact sport." What utter and dishonest nonsense!

The pain after the surgery was nothing close to the pain I had from the scoliosis. The surgeon also took bone from my hip instead of using a cadaver and that added to it. Do NOT let your surgeon take bone from anywhere else in your body! It will always hurt, especially on cold days.

But the worst sensation was a few days later when I was transferred back to my room and realized I couldn't bend my spine. At all. I was horrified. No one had ever alluded to this. It felt like I was wearing my brace, but INSIDE my body. I could feel the metal, and it was a horrible feeling.

I never got used to it. For 25 years I have longed to arch my back, longed to stretch, long to hunch my back when I sit. The human spine is meant to bend; to fuse almost the entire thing is to permanently disable and alter someone. And muscles don't forget; mine want to stretch like they were meant to. Also, as you age your bones become stiffer; years of having a fused spine and having to compensate for the fusion take their toll on your hips.

I have been on opiate pain medication since my surgery; on that day, I was turned into a chronic pain patient. In an effort to relieve my pain and stiffness, I did have the hardware removed years ago, but although I'm glad I did it, it didn't give me any more flexibility.

I am the voice of (some) scoliosis patients who are aging with the surgery. I dare to speak out against this surgery and the surgeons who continue to perform this procedure, even in cases like mine that are not that bad. I hope to save others with moderate scoliosis from a choice that should be a last resort, hope to educate parents from not choosing this surgery for their children unless they absolutely have to.

[Elisa]

I think it is a good idea to have a section here where people can tell their true stories without having any return comments. It makes for good listening skills.

Right, and who is going to clean up all the junk and spam while sifting through legit questions about scoliosis?

[Kat3573]

I'm very happy with the outcome of my surgery but i do know why but it agitates me that I lost one lumbar vertebrae and I wish I did it earlier and then may be I would still have that vertebrae. I wish that I was braced earlier and may be I could have prosponed my surgery without losing that vertebrae. Buy other than that I'm pretty happy with my surgery

[navywife]

I read these stories and my heart goes out to those brave people who wanted to help themselves make a better life without pain and with more mobility, not less mobility and more pain. I am sorry for you and hope that you can somehow get this resolved. Please keep the faith that there has to be something out there for you to help or some one who can help. DON'T give up! Fight more than ever to feel better and don't listen to the ones that say there is nothing wrong or nothing else can be done. I have lived my life with many awful things medically and if I did not fight, I would be in the ground. SO please don't give up.

Teresa

[Trin]

I regret my surgery all the time. Not because I had a bad outcome, but because it took what little independence I had. In addition to scoliosis, I also have cerebral palsy. Before my surgery, I needed moderate help with daily tasks, but I was still able to crawl to get around, get in and out of my chair/bed, dress, sit/lay on the floor in front of the TV, etc. While they told me I wouldn't be able to do ANYTHING for six months after, they failed to consider how detrimental that would be to someone like me. I can no longer do any of the things I mentioned; I basically just go from my bed to my chair and back. I know my back was pretty bad, but it was never actually stated if it was life-threatening or not. If I knew this was how it was gonna be, I would've planned accordingly or not gotten it at all. I'm happy my back's fixed and I don't look disfigured anymore, but it wasn't worth losing my independence over.

[Lorz]

Today is my 2 year post-op anniversary date. I am fused from T3-S1 with pelvic anchors. I had it done at HSS in NYC, and Dr. Boachie was my surgeon. I had the following complications: Paralytic Ileus, Bilateral Pleural Effusions with Atelectasis, Jugular Vein Embolism, Pericarditis with Pericardial Effusion, and a T7 pedicle screw that is 1mm from my aorta.
All of those things, believe it or not, is not why I say I am sorry. It is how I feel constantly, every second of every day. I feel like I am wearing an internal metal brace, which is constantly abrading and irritating my nerves, and tissues. That in turn causes my muscles to be in a constant state of spasm, creating a sensation of extreme pulling and pressure and of wearing a tight belt around my rib cage. I never feel even slightly "normal" and feel the hardware constantly.
The pain I had prior to the surgery was preferable. I could lie down and get some relief. I still had some good days. Now I have none.
I am probably having hardware removal in the Fall, without knowing if it will even help. This is certainly NOT how I envisioned my 2 year anniversary!!