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CHRIS WBS
10-10-2005, 03:53 PM
As an older adult (56) who has been recommended surgery, I'm curious to know if anyone out there regrets their decision to have scoliosis surgery. I've been reading so many horror stories in this forum as well as others, that I'm becoming more and more doubtful. I've yet to hear anyone say that life is wonderful after surgery. Instead, I'm hearing reports of chronic pain, failed fusions, nerve damage, broken instrumentation (all necessitating further surgeries), and even individuals who have become disabled.

Do you regret having spinal correction surgery?

LindaRacine
10-10-2005, 04:05 PM
Hi Chris...

Unfortunately, I think that most of the people that seek out forums are those who are about to have treatment, or those who have had treatment and had a bad outcome. The people with good outcomes tend not to come back. I know literally hundreds of people who are happy that they had surgery. I also know some who regret it. It's just an estimate, but I'd guess that about 3-5% of the people whom I've communicated with who have had surgery, regret that they had it.

I think the keys are 1) being sure you've selected a very talented and knowledgable surgeon, 2) understanding all of the risks, and 3) having realistic expectations about what both early and long-term recovery will be like.

Good luck with your decision.

Regards,
Linda

marmyte
10-10-2005, 04:07 PM
not at all

i think the alternative for me would have been far worse (or i should say COULD have been far worse, there's no way of telling how much my spine would have deteriorated or stabilised) once i'm fused i'm not going to let anything stop me. it was painful and achy and frustrating in the early stages (and still is a little frustrating now) but i don't regret it. i'm free of my preop pain and well on my way to being "normal"

sweetness514
10-10-2005, 05:14 PM
Hi Chris,

I myself don't regret having the surgery DESPITE the fact that I have to have revision not even 8 years post op for broken instumentation, because I had NO choice. I always say get the surgery if and ONLY you have least 50 degree curve(s) and/or have debilitating pain, like I had.

Once you know that, you have to take the risk and of course for some it's wonderful and for others it's on and off, as everything in life is many shades of gray and sometimes has negative consequences. But when you have non stop pain before the surgery and are at risk for your over all health, again you have not much of a choice, unless you want to live like that and that's personal.

My only gripe was I would have preferred knowing all the risks and revision surgeries that we may need later on, as it would have made it more real and acceptable for me, anyways. The shock of finding what happened(broken rod, loose screws, etc) was just as bad as having to wrap my mind around getting surgery yet again.

Good luck and when you feel good, take advantage of it, as I did, as well as make your health your first priority :)

Jacque's Mom
10-10-2005, 05:56 PM
Chris,
I had my surgery in 1981 at the age of 27. From age 11 to 27 I lived in pain that I only remember pain as a child, which is sad. It kept me from doing so many things. When I found out someone could help me, I jumped at the chance and lived painfree from 1981 until 1997. Yes, I did have to have two surgeries since but I was and am still grateful for those painfree years. I got married and had a beautiful daughter in '86, and was able to enjoy those painfree years with her. I do not regret it for one minute. It was either take the chance and see if Dr. Keim could give me my life back or continue to have that relentless pain and be in a state of depression. Even with the pain I have now, which is nothing like I had prior to surgery, it is tolerable. I have a wonderful pain management doctor that understands and works with my pain. If I had to do it over again would I? Absolutely YES - even with being in a body cast for nine months - thankfully times have changed. You are only 56 and have many years ahead of you. I with you good luck. LYNN

Karen Ocker
10-10-2005, 06:17 PM
Linda hit the nail on the head. A talented, experienced surgeon is the key.

I got my life back at 60(3 years ago). I needed a revision of an old fashioned procedure done in 1956. I had a perfectly normal life-except for cosmetic concerns- until my 50s when my curves were noticed to have increased.

I am pain free and living a life of gratitude as a result of the surgery.
And still working. I come to this forum to share my experience and give hope like others gave to me.

Karen

sweetness514
10-10-2005, 07:31 PM
I want to add that a good surgeon is good and reassuring but not a gaurantee to not have revision surgery later on. My ortho was considered one of the top 5 in the world and has now opened his own medical facility in Switzerland. It's better to keep in perspective that they could only do so much and to be realistic as it is a complex procedure as well as the pain resulting from it.

Theresa
10-10-2005, 10:21 PM
Chris, Even though I had to go back for another surgery one year after my A/P surgery, I don't regret the decision. Yes, I still have pain and yes, I still have some trouble with walking and keeping upright. But, when the surgery is done later in life your bones and muscles have learned to adapt to your twisted spine and are quite content with what they are doing, even though it's not right. After the surgery there is alot of protest from those same bones and muscles having to learn to work the correct way and of course with that comes muscle spasms and pain. The pay off is how much better you look and feel about your future health. I was starting to get really concerned when I noticed that my sternum was no longer in the center of my chest. I am no longer worried about that. A lot depends on how much curvature you have now and the type of pain that you are in now. Have you noticed that you don't do some things anymore that you used to do due to the pain from your back? To back up what Linda said about people with good outcomes and little to no problems: When I first joined this forum before my April 2004 surgery there was alot of folks on here getting ready for surgery that we have not seen since they have been about 3 to 6 months postop. Every once in a while they pop back in and say "HI". I still have a long road to go down with recovery and PT but I would do it again.

Tall Paul
10-10-2005, 11:27 PM
Chris, I am curious as to what type of scoliosis you have? I'm 54 and have degenerative adult scolisos which is primarily in my lumbar section. From what I'm told I will need a fusion both posterior and anterior. For this reason I'm being told "the cure is worse than the disease" and not to have th surgery unless I absolutly have to.

I think we might be neighbors since I live on the north shore as well and have seen Eldin Kr.... out of evanston. He did not give me the comfort I needed to consider him for surgery.

LindaRacine
10-10-2005, 11:35 PM
Hi Tall Paul...

Having a doctor suggest that you have surgery only as a last resort makes me think the doctor might not be qualified. Perhaps you could check out someone like Howard An, Purnendu Gupta, or Ronald or Christopher DeWald.

Regards,
Linda

Tall Paul
10-11-2005, 01:10 AM
Thanks for the reply Linda. I did see Ronald DeWald about 2 years ago before he retired after seeing Dr Ondra for a few years. I have an appointment with Dr Hammerberg tomorrow as follow up on an standing MRI who has worked with DeWald for a number of years. So far no one has said to me "I can fix you up". Instead "I would never do this if I was you" or "we need to wait until it effects internal organs" or "the cure is worse than the disease".

Hopefully I'll have some promising news tomorrow. You didn't mention Hammerberg in Chicago. Do know anything about him? I know An is out of Rush and Gupta is out of U of C. I've even thought of visiting Bridwell. Who would you recommend for a second opinion?

Thanks
Paul

JanM
10-11-2005, 03:43 AM
To Tall Paul,

Dr. Hammerberg is supposed to be one of the best from what I understand. I was referred to him by a top surgeon. I know some people who've had surgery with him and they also rave about him.

Lavinia
10-11-2005, 04:54 AM
I'm also 56, and had spinal fusion for scoliosis last November. I was spending an increasing amount of time on pain and pain management, and the situation had worsened steadily over my adult life after a teenage spent in daily pain.

I was fully aware of the risks before surgery, but it is still a surprise to discover, 11 months down the line, that not all has gone well. I will probably be left with chronic pain and breathing spasms from nerve damage, and will need revision surgery. My life looks very different now from what I had expected, and I am a lot more restricted in what I can do than before the surgery.

Nevertheless, I have not regretted having it. Without the surgery, the pain and breathing problems would have eventually got worse than theyare now, and at least I have the opportunity of coming to terms with things and building a different kind of life while I am still relatively young. If I hadn't gone ahead, I would have spent the rest of my life thinking 'if only'. So I agree with others - do your research carefully, and then make the decision for yourself, based on the best information you can get. Even if it goes wrong, there will be no cause for regret. Many people develop satisfying lives even with their limitations.

blairf83
10-11-2005, 09:05 AM
I don't regret having my surgery at all. It wasn't easy, that's for sure. But it's given me the life I loved back and a shot at pursuing my dream job. I'm not without pain. But I hurt before I had surgery too. I traded relatively equal pains, and gained a straight spine. I'm ok withthat.

sue821
10-11-2005, 09:06 AM
....Tall Paul, how did the appointment go with Dr. Hammerberg? I personally have been with Dr. Ronald DeWald for the past 35 years and recently saw his son, Christopher. Because of insurance issues, I will be heading to St. Louis for an appointment with Dr. Bridwell for a surgical second opinion. Hammerberg, C. DeWald and Bridwell all practiced in the Spine Fellowship program under Ronald DeWald, and I would feel very confident with any of the three.

LindaRacine
10-11-2005, 12:28 PM
Hi Paul...

I don't really know anything about Dr. Hammerberg. Dr. Gupta did a fellowship with Keith Bridwell, so he'd probably be my choice for a second opinion:

http://www.uchospitals.edu/physicians/physician.html?id=5978

--Linda

CHRIS WBS
10-11-2005, 03:04 PM
Chris, I am curious as to what type of scoliosis you have? I'm 54 and have degenerative adult scolisos which is primarily in my lumbar section. From what I'm told I will need a fusion both posterior and anterior. For this reason I'm being told "the cure is worse than the disease" and not to have th surgery unless I absolutly have to.

I think we might be neighbors since I live on the north shore as well and have seen Eldin Kr.... out of evanston. He did not give me the comfort I needed to consider him for surgery.
Paul,

I have had scoliois since about the age of 12 (classic adolescent idiopathic scoliosis). It was never treated. Doctors over the years told me there was nothing that could be done. I never gave much thought to it since I never had problems UNTIL THIS YEAR. I had an appointment with Dr. Eldin Karaikovic in July when I was diagnosed with severe adult scoliosis. The Cobb angle measured from T10 - L3 is 74 degrees. It's primarily lumbar with some degeneration. Needless to say, I was shocked to learn this. Dr. K. prescribed physical therapy and said that other than that, my only option is surgery. I did get a second opinion from Dr. Avi Bernstein at the Spine Center at Lutheran-General. He did not recommend surgery since I did not come to him with a history of chronic pain. He said this is very serious surgery. No kidding. He also wanted standing x-rays, which he looked at in my presence during my second appointment with him, but did not comment, only to say that he treated a woman with the same degree curvature by fusing two vertebrae. My feeling about him is that he takes the least aggressive course of action. This may be the best approach since perhaps five or ten years from now they will have better procedures. And, unfortunately, once the spine is fused, it can't be unfused. I'm curious...what treatment did Dr. Eldin prescribe for you? Are you considering surgery at this time?

Tall Paul
10-11-2005, 08:22 PM
Linda, thanks for the referral!

Chris, in my opion Dr. Eldin Karaikovic is a very bright and talented doctor. I went to see him after reading about some of the micro-surgery work he was doing on backs. He told me I was not a candidate. I never saw Avi Bernstein. After just reviewing the web sites of these doctors I didn't see either one taking a scoliosis fellowship. To me that is first branch on the decision tree. These both are probably very good orthopedic surgeons, but I want someone that had dedicated their primary practice to scoliosis care or has a special interest in scoliosis care. I know Linda Racine has recommended a few quality doctors on this site in the Chicagoland area.

I am definelty considering surgery after 5 years of trying to rid myself of pain. I saw Hammerberg today out of Rush (he also has an office out of Holy Family) who was trained under Ronald DeWald, who I understand had and still has one of the best scoliosis fellowships. Also attending DeWald's fellowship program is Keith Bridwell out of St Louis. http://www.spineuniverse.com/authorbio.php?authorID=30 As Linda explained in a previous post Bridwell now offers his own fellowship and Dr. Gupta from U of C participated in this program. There is also a doctor out of Hospital for Special Surgery Oheneba Boachie-Adjei, MD in New York that has done some incredible work on scoliosis.

You may also want to check out this article from US News on the best hospitals in the county. You can rate them by orthpedic care.

I hope I answered some of your questions. Like you I am facing the decision on surgery and am now looking for the same answers you are: was it worth it and would you do it again. I you want to contact me directly you can at: bronyaur@att.net

Best of luck to you.

Paul