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View Full Version : The "I'm Sorry I Made the Decision to Have Surgery" Sticky Thread



LindaRacine
12-05-2011, 10:58 PM
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
12-10-2011, 12:45 PM
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
12-10-2011, 09:37 PM
Actually, the reason that I have not posted is that I cannot decide to post here or not

LindaRacine
12-10-2011, 09:49 PM
I think it's way too early for you to know if you're going to be happy with your outcome.

Marina63
12-11-2011, 05:44 AM
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
12-22-2011, 10:16 AM
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
02-06-2012, 08:15 PM
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
02-13-2012, 05:13 PM
I havenít posted here until now for a couple of reasons, first is Iím just one year post-op from the first two surgeries and it might be too early to say what my outcome is. Secondly, I donít 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 Ďdeadí 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 canít believe it, I canít imagine moving my arms like that, by back just doesnít 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.) Iím 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. Iíve 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 MRIíd 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 ĎIím glad I had this surgeryí thread.

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

Confusedmom
02-13-2012, 10:02 PM
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
12-18-2012, 05:04 PM
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
12-18-2012, 08:46 PM
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
01-21-2013, 06:22 PM
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
02-03-2013, 06:30 PM
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
04-18-2013, 01:17 AM
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
06-07-2013, 05:26 PM
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!!

allycat
06-14-2013, 02:29 PM
Hi everyone. I'm nearing my 2 year post op anniversary and thought I'd give a brief update (see above post dated 2-06-12). I had a visit with my surgeon at about my 15 month post op mark (September 2012) and we discussed the continued issue of pain. X-ray's were taken and an MRI was done to hopefully see a complete and successful fusion. However, the rods are giving off a starburst reflection effect which makes it impossible to see the area where bone has hopefully grown. I was prescribed physical therapy which I finally completed this spring. I was 100% devoted to making every appointment, doing every excercise and trying every possible suggestion. After 16 appointments, I was not making any improvement and was released from PT. I have not spoken with my surgeon since finishing PT, but we did have a nice long conversation prior to beginning. I was told if the PT did not reduce my pain level and improve my quality of life, the next step is essentially exploratory surgery to go in and get a "birdseye view" of the bone growth and check for possible fusion failure and to look at the hardware and possibly remove it if the fusion is complete. That's where I stand now. I have had to increase the amount of oxycontin and fentanyl I am taking, and in addition I take sleep medication and a muscle relaxer at night so I can get a bit of decent sleep. At this point, I really can't say whether I'm sorry I had the surgery or not, because I have no idea what my life would look like if I had not. I try really hard to not say "What if" and instead say "What next?"

Everyone take care!

jackieg412
06-23-2013, 04:50 PM
Linda --do you have a link to possible surical complications? I need it and I know it is here,but can't find it.Jackie

Back-out
04-02-2015, 11:30 PM
I KNEW I shouldn't have read this thread...:confused:

TwinmomTN
06-05-2015, 07:37 PM
This surgery has ended my life, left me in chronic SEVERE pain. I have taken narcotic pain meds for the 3 years since I had this dreadful disaster!!! I had fusion from T-3 to sacrum at 48 years. It has left me in so much pain that I cannot function. I have SEVERE sciatic pain that never ever stops. I am living in hell with this suffering and have tried EVERYTHING! If we put animals out of misery, why does society insist in forcing those suffering with debilatitng severe chronic pain to continue living? They need to live in my body for just ONE day, then tell me that their life is not over!!! I am utterly miserable so I beg others to head the warning that you may end up like me with 100 times MORE PAIN.

If you choose to ignore the negative posts like I so gullibly did, you may live to regret you ever heard of spinal fusion surgery. It has ruined 4 lives- mine, my husband, my 2 children. AND IF I HEAR ONE MORE PERSON SAY "GOD DOESNT GIVE YOU MORE THAN YOU CAN HANDLE", I AM GOING TO SLAP THEM,

Chihuahua Mama
08-22-2016, 08:04 PM
I read these stories and feel for all of you; some of you should hire lawyers! My prayers are with you.

Heck, I'll name names! My original surgery was a disaster BECAUSE of the surgeon DR. MICHAEL KROPF of Cedars Sinai in L.A. He is a lousy surgeon and was totally inadequate for what I needed. Fortunately I found an excellent revision surgeon and I am much, much better. I am still recovering but I can say I have less pain in only 3 months after revision surgery than I did 6 years after my first surgery.

There's hope....don't give up.

rjmacready
08-23-2016, 12:39 PM
This surgery has ended my life, left me in chronic SEVERE pain. I have taken narcotic pain meds for the 3 years since I had this dreadful disaster!!! I had fusion from T-3 to sacrum at 48 years. It has left me in so much pain that I cannot function. I have SEVERE sciatic pain that never ever stops. I am living in hell with this suffering and have tried EVERYTHING! If we put animals out of misery, why does society insist in forcing those suffering with debilatitng severe chronic pain to continue living? They need to live in my body for just ONE day, then tell me that their life is not over!!! I am utterly miserable so I beg others to head the warning that you may end up like me with 100 times MORE PAIN.

If you choose to ignore the negative posts like I so gullibly did, you may live to regret you ever heard of spinal fusion surgery. It has ruined 4 lives- mine, my husband, my 2 children. AND IF I HEAR ONE MORE PERSON SAY "GOD DOESNT GIVE YOU MORE THAN YOU CAN HANDLE", I AM GOING TO SLAP THEM,

Hi TTN, I'll keep this short as longer posts get routed back to log in again then frozen. I endure chronic pain as a result of a failed two level disectomy and fusion. It took me from a productive person to a physical and mental shadow of myself. I just want you to know I can at least partially understand your situation. Kyphosis and scoliosis gradually deformed my spine to the point I am almost certainly getting the complete revision surgery. I have an 80+ degree kyphosis and chronic pain; choices are limited. What I want to say is you are not alone. I have wished for euthanasia myself many times. I feel your rage and despair. One suggestion: Have you gotten a workup by a major teaching hopital's pain management dept? ( like MGH, Mayo, Johns Hopkins)? Perhaps a spinal cord stimulator or an intrathecal morphine pump might help? I would think bathing your spinal nerves in a constant stream of morphine might quiet them down. I know all too well how constant pain can drain every ounce of your quality of life, and as you said, no sentient being should suffer this way. Have you looked into these options ? Thanks for sharing, it has added to my pre op fears. As bad as things are now for me, I understand all too well that misery is a pit without a bottom; things can always get worse. Good Luck. RJM

mabeckoff
08-23-2016, 01:52 PM
I am 5 years out from my first revision surgery. In the beginning, I was so sorry that I had the surgery.Now, I am so grateful to my surgeon. He is so talented and gave me my life back.Yes, I have chronic pain, but I live my life to the fullest. I can do many things that my surgeon never thought possible.

So hang it there. Things might change for the better

Prfbones
08-25-2016, 07:04 AM
Hi everyone,

I've given this question a lot of thought. I think I have an answer, finally.

First a bit of background. I have a half-brother. We inherited our scoliosis from my father; we have different mothers. Both our curves were extremely aggressive, mine so much so that it broke the Harrington rod from my first surgery. My brother's mother would not allow him to have the surgery, so his curve was very large- in the region of 130į - 140į with severe twisting. He was in so much pain as an adult that at age 35, he attempted suicide. It failed, so he turned to drinking and street-level pain relief. He could no longer sleep on his back without stopping his breathing and\or his heart. They found him one morning about seven years ago, flat on his back. He had died in the night from heart failure from sleeping on his back. So basically, scoliosis helped kill my brother.

I know he went through hell.

I've had a lot done to my back over the years. A whole lot. Five big fusions, surgeries to remove broken rods and wires, surgeries to move muscle and fat over hardware, surgeries to fix pseudoarthroses. Not to mention all the smaller procedures like rhizotomies, steroid injections, and other injections and procedures too numerous to count. I've been in a brace of some kind more often than not. I've been in pain management since 1999 except for one year in 2006 - 2007 when suboxone came out, so I tried to go without it. Mistake.

After all of this, the only thing that I question is if I had surgery too early. Clearly my spine was not done growing at the time of my first surgery. I think I should have waited five years, maybe more. Then I would not have had the Harrington rod put in. That rod has been the bane of my existence and the cause of so much of my pain. At the time, Dr. Bradford (I remember this very distinctly) played my mother like a harp. He told her all her fears would come true. I remember him telling her back in the late 1980's that if I didn't have the surgery immediately, that I would be in a wheelchair at 35 and probably die before I was 45 (how could you ever forget a conversation like that?).

I'm happy right now with the outcome of my recent surgery. I hope I don't need any more. Time will tell with that I guess. I'm decreasing my pain meds every appointment. I don't know how low I can go with them. I'm hoping for a minimal amount. Not being on any is practically inconceivable, but would be amazing if it happens.

So my only regret is the timing.

Kstrong529
11-23-2016, 12:33 AM
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 : )




Wow! This was an old post right? Surgery was in 2011? Are you glad you had the surgery now? I hope so!

Kstrong529
11-23-2016, 12:41 AM
This surgery has ended my life, left me in chronic SEVERE pain. I have taken narcotic pain meds for the 3 years since I had this dreadful disaster!!! I had fusion from T-3 to sacrum at 48 years. It has left me in so much pain that I cannot function. I have SEVERE sciatic pain that never ever stops. I am living in hell with this suffering and have tried EVERYTHING! If we put animals out of misery, why does society insist in forcing those suffering with debilatitng severe chronic pain to continue living? They need to live in my body for just ONE day, then tell me that their life is not over!!! I am utterly miserable so I beg others to head the warning that you may end up like me with 100 times MORE PAIN.

If you choose to ignore the negative posts like I so gullibly did, you may live to regret you ever heard of spinal fusion surgery. It has ruined 4 lives- mine, my husband, my 2 children. AND IF I HEAR ONE MORE PERSON SAY "GOD DOESNT GIVE YOU MORE THAN YOU CAN HANDLE", I AM GOING TO SLAP THEM,

Holy Cow! I'm so sorry to hear this for you! I'm considering a total fusion to my sacrum. It's scheduled for May 9, 10, 2017 at UCSF. I'm consumed by thinking about it. What is the right thing to do, but at the moment I have no life as it is. I'm on percocet for the past 2 years and became allergic to pretty much all pain meds. I am nothing of the person I was just 2 1/2 years ago. I don't like anything anymore. I'm 50....will be 51 ON THE DAY OF my scheduled surgery. It had to be put off because they need 3 neurosurgeons for it and in coordinating all their schedules, I get to think about it for 6 months. I'm scared out of my wits and my heart rate beats over 100 bpm when I read the paperwork. Sick of the lifetime I've already had with X-rays, MRI's and CTS. I feel like I'm glowing from all the radiation.

Where did you have the surgery? Did your pain get any better? What went wrong and what was your pain like before the surgery? I hope things have turned around for the better for you. I pray you get relief and soon.

LindaRacine
11-23-2016, 02:17 PM
Reminder: This thread is for testimonials only. Please send questions/comments about someone's post via PM. Thanks.