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View Full Version : Happy and well without surgery?



Jenny Spencer
11-18-2004, 05:45 AM
I am aware of Weinsteins's research which shows that patients with untreated late onset ideopathic scoliosis have similar life expectancies and health outcomes to the general public.

I am 52 and weighing up the pros and cons of surgery.

Is there anyone out there who has never had surgery and who has made an informed decision not to?

Looking forward to hearing from you.

Jenny

Amazed
11-20-2004, 02:19 AM
I am 53 years old and have 3 large curves and have never had surgery etc. I chose to raise my daughter instead. I now know that I probably waited a tad too long. I have severe lung dysfunction and now are tied permanently it appears to Oxygen. I have pain but I'm dealing with it. Don't let your lungs get too bad. Consult a couple doctors. There are lots of people from UK and rest of Europe on Scolios Sites that are all over the net

Danite
11-20-2004, 10:40 AM
Good morning,
I had surgery in 1954 to correct a breathing challenge, in fact I was going to die with out it, they fused all of my back except for two lower verts for mobility. They (specialist) only gave me a 50% chance of surviving the surgery and less then that of ever walking again. Oh-well here I'am at the good old age of 54 and my spine has had enough, I have no rod or metal parts of any kind. I have all kinds of spinal problems, including progressive curvature or scoliosis, rotoscoliosis, spinal stenosis, arthritic, Facet Joint desease...etc. Right now I have the normal expected pain or discomfort that can be expected with this challenge and I'm on the normal pain medication for pain management. BUT NO MORE SURGERY FOR THIS GUY, ENOUGH IS ENOUGH. The medical model is not always right, and pain and discomfort is a personal thing. We all must and do learn to live with a different degree of pain in our life, some physical and some mental. GOD BLESS....

Jenny Spencer
11-23-2004, 10:52 AM
Dear Danite and Amazed,

Thanks for your input.

Amazed,did your doctors tell you that you would get worse and if so,even though you had your daughter to look after, why did you not have surgery?Do you now regret your decision?



Best wishes
Jenny

nutmeg
11-24-2004, 03:47 AM
Hi Jenny

I don't know whether you can call my decision not to have surgery informed, but I have no regrets. I am nearly 47, and was diagnosed at age 12 with a 41 degree curve. Surgery was originally recommended for purely cosmetic reasons. A year later when the curve was 43 degrees (actually the difference between the two measurements is small enough to be measuring error), I was told that without surgery I'd be in a wheelchair before I was 30.

I have no significant pain, and no noticeable breathing problems. I've had no noticeable height loss so I don't think the curve can have increased very much.

Factors to consider when deciding about surgery are:
Are you in pain, and if so is it getting worse?
Are your curves increasing?
How bid are your curves now?

If the answers are no, no and < 50 degrees, I wouldn't even consider surgery, but this is the personal opinion of someone with no medical training.

Danite
11-24-2004, 10:39 AM
Hi Nutmeg & Jenny,

I agree with Jenny, it is a very personal decision and it should be, I do understand or feel that most medical models by design sometimes look at surgery as a quick fixs and answers to the problems or issues that we face each day. Sometimes causing more medical or personal problems in the long run, and requiring more surgery.
We must all be empowered to make if possible are own decision regarding surgery, we are people first and our disability is second. I wish everyone a Happy Thanksgiving and look around you for positive things in your life and give thanks.
God Bless....

Amazed
12-02-2004, 03:02 AM
Oddly enough the doctors kept saying that the scoliosis won't get worse. They also said that it didn't hurt. They also said their no guarantees with any surgery on spines and I could spend up to 2 years in a body cast. They were wrong. I'm sorry I didn't do something about 10 years ago. Just never thought about myself as being out of commission for very long.

Jenny Spencer
12-02-2004, 11:31 AM
Are you saying that if you could go back in time you would opt for surgery?

Jenny Spencer
12-11-2004, 12:46 PM
Hi Nutmeg,

You say your curve was 43 at age 13.Have you had your curve measured since?

nutmeg
12-14-2004, 02:55 AM
Hi Jenny

No, I've never had my curve measured properly since then (not even during the 3 years I was on the waiting list for the surgery I refused to have).

I feel fairly confident that it has not increased enormously, because I have not got any shorter. However, a few years ago I had a chest X-ray as part of migrating to Australia. I had a go at measuring the curve on that and came up with about 48 degrees. I have no idea whether this is accurate, but it does fit in with what I read on a scoliosis website somewhere, namely that curves between 40 and 50 degrees at maturity tend (statistically) to increase very slowly after maturity, probably 10-15 degrees in a lifetime. ( I was an early developer, when my curve was last measured the summer after my 13th birthday I had been menstruating for almost a year, and wearing an adult bra for 18 months).

Jenny Spencer
12-14-2004, 08:20 AM
Hi Nutmeg .

Thanks for your email.It's interesting to note what you say and I'm so glad you didn't have surgery as it sounds that you really didn't need it.

Best wishes

Jenny

JeanneManhattan
12-14-2004, 02:02 PM
I had mild scoliosis as a child (post-polio) and was stable until a few years ago (when I reached age of 50). I have done a lot of reading on the subject of surgery and have decided that the risks outweigh the benefits. I have also attended conferences where the guest speakers have been very clear that this surgery should not be considered unless pain is very severe and/or breathing/cardiac functioning is compromised. At this point, my balance is off and it has affected the quality of my life. However, the ability to bend after fusions, and the possibility of needing revision, will definitely affect quality of life. Bottom line: Surgery is not a panacea and hold many risks.

Jenny Spencer
12-14-2004, 02:50 PM
Hi Jeanne,

I am very interested in your stance on surgery.i.e. that it's not a panacea and holds many risks.

I'm in the process of trying to decide whether to have surgery and I can understand your viewpoint.It's a quality of life issue as you point out.

I wonder whether you can share further
how you reached your decision.You've clearly read extensively .Is there anything you'd personally recommend that helped you decide that the risks outweighed the advantages?

The speakers at the conferences you attended said to wait until pain very severe and/or breathing/cardiac function is compromised .Could you add more to this as well as I'm very interested in this point.

Best wishes

Jenny

JeanneManhattan
12-14-2004, 03:26 PM
I've always worked in healthcare, so I'm comfortable reading articles. I also purchased a book written by a well known spine physician here in Manhattan (Neuwirth). I attended an all-day conference at Hospital Special Surgery about adult scoliosis (in conjunction is NSF). The key speaker, Dr. Boachie, is chief of spine surgery there. He was refreshingly frank about the seriousness of this surgrey, especially for people in middle age (when our overall strength is not what it was as teenagers, and when most of us have some bone loss). Since I have osteoporosis, this would be a major risk in terms of stability of hardware and the probability of needing revison is real. I broke my knee a couple of years ago and the surgeon had difficulty attaching the hardware internally.

Functioning post-fusion is also a concern for me. Since my legs are weak, I have relied on upper body etc. If I can't bend my spine, this would pose problems with functioning (i.e. I can't bend from the knees if I need to pick something up).

Lastly, taking time out of life for surgery, recuperation and rehab is more than I want to take on until I absolutely need to.

Jenny Spencer
12-14-2004, 04:12 PM
Thanks for the info Jeanne.I've read the Neuwith book.
Very interested to note Boachie's views on surgery on the middle -aged.Was it him who said wait until pain severe etc?
My consultant recently suggested we look at the SRS website for Boachie's arguments for and against surgery.
I've not yet located it and hope it wont be too hard to find.

Karen Ocker
12-14-2004, 05:27 PM
I was operated on by Dr. Boachie 2 years ago at the age of 60 and got my life back. My surgery was a revision of un-instrumented scoliosis surgery I had in 1956 for a 100 degree curve. My triple curves increased over those years. At age 52 my major thoracic curve was 64 deg by age 59 it was 80 deg. I did have shorteness of breath even when I talked. On my first visit Dr. Boachie outlined what was involved but advised me not to wait because I was getting worse. I was able to control pain with exercise up to a point but in the end I would wake up at night with throbbing pain where my rightward thoracic curve met my leftward lumbar curve(called transition zone). Those spinal nerves were trapped with no place to go.

I have been an RN for 40 years 30 years of which I have been a nurse-anesthetist. I knew exactly what the risks were. Though I was terrified I was grateful that help was available. But not breathing was not an option for me. I personally would have done something before age 60 but I didn't know I had the option.

The problem with waiting until breathing problems ensue or terrible pain occurs is that one goes into surgery in in less that optimum condition. The pain causes deconditioning and the breathing problems increase the anesthetic risk. The larger the curves the less correction possible and think about it all the major organs, spinal cord, joints, etc. that will need repositioning. After surgery this is very painfu.
The point I am trying to make is be informed and know the consequences of action or inaction. A stable curve that's not increasing is not a problem. If a curve is increasing in an adult say 1-3 degrees a year do the math. As Linda says if surgery is warranted the younger the better because healing is quicker.

I was very fortunate in my outcome. I am back at work and essentially pain free. I needed to be fused T-4 to sacrum. My original fusion in 1958 was T-4 to L-2 but the discs below that fusion had totally degenerated. I basically do everything I want and need to do.

JeanneManhattan
12-15-2004, 08:32 AM
Boachie didn't say to wait until pain severe. However, he was very clear about the seriousness of the surgery and complication rate (10% I believe). He gave impression that if there is medical necessity (pain, compromised breathing/cardiac functioning), then surgery should be considered. I didn't get the feel any time during his talk that he was recommending surgery for those of us without pain.

I'd like to see what Boachie has written. If you find the website, can you send to me? I'll also look.

Thanks.

JeanneManhattan
12-15-2004, 08:39 AM
My curve is lower back. Minimal thoracic curve. My concern is that I have osteoporosis (osteopenia in spine) and my legs are weak (post-polio). My fear is that with a fused spine, I won't be able to bend, pick things up (legs not strong enough to bend from knees). I'm also concerned about pain post-op and rehab, particularly since I'm compromised in lower extremities.
I know every case is different. I guess that why I feel those who recommend surgery without reservation may be sending an overly optimistic message to people like me. For those of us (post-polio), the issue is not so simply. I would love to hear experiences from people with simple medical history to mine.

Jenny Spencer
12-15-2004, 12:30 PM
Hi Karen and Jeanne,

For someone like me who is weighing up the pros and cons of surgery ,the comments that you both have made above have had a great effect on me.

I was thinking when I read what you said ,Jeanne,that I'd wait and see how things progress.But then your email arrived Karen and I realised that I don't totally appreciate the consequences of inaction.

If the advice is to wait until pain is very severe and/or breathing/cardiac functioning is compromised then this could be waiting for something that might or might not happen .Logically it doesn't seem sensible to wait until breathing problems or severe pain arrive on the scene for the reasons Karen has noted.

I am truly finding this all very hard.However both your replies encapsulate the two views I am currently struggling with and am very grateful to you both.


Jenny

Danite
12-15-2004, 01:22 PM
Good afternoon,

As a License Professional Counselor, and an Advocate for people with disabilities I was empowered to write regarding this posting regarding surgery or not. First as many of you know I'm not in favor of surgery unless it is the last option. Again pain and discomfort is a personal item. We should never try and catalog individual chronic or severe disabilities into groups as so many medical models support and encourage. They are as individualized as the person is with the challenge or disability, we can understand and appreciate what that person is going through if we have a similar condition of course. But the pain is difficult at best to catalog or to handle.
I'm not a supporter or a believer in modern medicine but a believer in the individual, we are people first and are disabilities are second. ANY SURGERY should be considered as second choice and only after the PAIN or DISCOMFORT is too much. I know that some day in the near future, it will be necessary for me to again to consider surgery. But as for know, my pain is somewhat manageable, and God Bless you all.

JeanneManhattan
12-15-2004, 02:15 PM
Working in healthcare, I am a believer in preventive medicine . I also believe it is counterproductive to delay treatment. However, unless there are compelling medical reasons, I don't think it's wise to subject anyone to major surgery. Proponents of spinal fusion for scoliosis some times don't appreciate that no everyone is able to compensate with the rest of their body while their back heals, and when their back is restricted by fusion.

Jenny Spencer
12-15-2004, 02:41 PM
I note what you both say, but do you think we might be making things harder for ourselves by waiting until problems develop?

I've found some very interesting biographical info on Boachie but not what my surgeon said I'd find(the arguments for and against surgery)

LindaRacine
12-15-2004, 03:44 PM
Hi Jenny...

I know the SRS pretty well, and don't think there's anything authored by Dr. Boachie in terms of pros and cons regarding surgery. The issue is discussed in a book co-authored Dr. Boachie, Scoliosis Ascending the Curve. It includes a section on "Risks and Benefits of Surgery,", and another on "The Pros and Cons of Surgery."

Regards,
Linda

Jenny Spencer
12-15-2004, 05:20 PM
Hi Linda,

Many thanks for pointing me in the right direction.

Jenny

Karen Ocker
12-15-2004, 07:34 PM
Here are some links from the National Library of Medicine database authored or co-authored by Dr. Boachie: Notice the age ranges in the publications.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12782986

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?
cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15016398

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12845424

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?
cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12590210

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11132980

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10752100

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9460161

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15303023

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12438980

Jenny Spencer
12-16-2004, 04:46 AM
Hi Karen,

Thank you for the links

Jenny

Danite
12-16-2004, 01:54 PM
Originally posted by JeanneManhattan
Working in healthcare, I am a believer in preventive medicine . I also believe it is counterproductive to delay treatment.

I do not agree that it is always counterproductive to delay treatment, this is a control issue for the individual with the disability or scoliosis. Once a decision is made for surgery, it is no longer that individual decision of rather to or not, the future is now on the outcome of the surgeon or surgery and is in the hands of people that depends on percentages, statistics and their experiences. I sincerely believe that individuals have more empowerment, motivation, and positive outcome when they are in charged, not the system or so called professionals. The medical model is not God and is not the only option. What is important, is that we consider all surgery as the last option with risks and with an uncertain future or outcome. We do know what our present Scoliosis condition is, and have a idea what it may be in the future, can we be positive that surgery is a cure all. NO!
With all my respect, and admiration to my Brothers and Sisters with Scoliosis, as a survival of old time Scoliosis surgery I'm a fighter and an Advocate for individual rights and inclusion. I do not wish to upset or cause anyone to resent my standings, so if I do, accept my sincere apology and have a great Christmas.

Jenny Spencer
12-17-2004, 07:22 AM
Personally I think it's great that you express your views in such a forthright way.
It makes for a lively honest discussion ,which is very important when we're discussing such a serious issue.

JeanneManhattan
12-17-2004, 08:22 AM
Hi Danite:
I think we're in agreement, but would like to know what "other options" are, other than surgery, to correct scoliosis. I believe in advocating for myself since I don't believe I can rely on health care profesisonal to do this for me. I've been a patient, and have had loved ones be patients. I have always (not to the delight of physicians or nurses), been very clear about what I want, believe and know my rights to be. The current healthcare system demands assertiveness. Too many physicians are too fast to recommend surgery. I realize that straightening my spine will require surgery. However, are there really people out there that would subject themselves to this if they are not currently in pain or have breathing/cardio compromises? That, to me, is not making an informed decision, and simply going along with the predictable physician recommendation.

Jenny Spencer
12-17-2004, 09:30 AM
Hi Jeanne,

I visited someone not so long ago who had surgery last year at age 42 .I believe she had no significant pain or breathing difficulties.

Her only reason for having surgery was that ultimately it would affect her internal organs.Everything went well and she looks fantastic.

Some part of me cannot help feeling she had a point .

Best wishes

Jenny