Surgery or not

[djkinkead]

K.,

I am 57 and have osteopenia and had the surgery. Like you, if I hadn't had it, evenutally my organs would be compressed against each other and well, game over. As you can see my before and after pictures in my website, I have 25 screws and two rods.

I agree with Golfnut in that it sounds like your family physician really doesn't understand your condition or the great leaps in technologies and tecniques they now do with this type of surgery. I am glad you are going to see a Spinal surgeon who knows what he/she is talking about.

Once again. Do your research--find the best surgeon you can. There are lots of surgeon's who say they can do this surgery and perform a couple a year. Look for one who has done a Residency at a spinal surgery hospital/school. I have a friend who went to a surgeon and just had a few vertebre (sp?) fused and he is now suffering from major pain....what's sad is he doesn't live that far from Baltimore where there are several top notch spinal surgeons.

Bigger cities will have better surgeons. You may have to travel to get the best. It's worth it.

[Karen Ocker]

I had surgery at 60- now pain free

We on this forum have learned by bitter experience:
Persons with absolutely no knowledge about scoliosis give dangerous advice.
Seeing a regular ortho or family doctor is a waste of money.
There are many ignorant fear mongers.
Seeing an experienced scoliosis surgeon-preferably recommended by someone who has a similar situation is most helpful.
I had a very extensive surgery 9 years ago at age 60-I am pain free.
I have: Isola rods, pedicle screws, laminar wires and a pelvic screw. I am fused T-4 to sacrum.
Since surgery I have: hiked in the Alps, worked standing up day, shampooed carpets, gardened, helped care for my terminally I'll mom last year, cut my toenails, be a good wife, watch my grandchildren etc.,
I like most have"osteopenia" normal for my age. I go to the gym and hike- never broke a bone.

[LindaRacine]

I don't think anyone is doing us a favor, to use fear to talk anyone out of surgery. For about 5 years before I had my initial scoliosis surgeries 20 years ago, I heard at least 3-4 medical professionals tell me that, while doctors were now routinely doing scoliosis surgeries on adults, it should be avoided at all costs. I spent 5 years in a lot of pain because I feared even going to see a specialist.

While scoliosis surgery is something to avoid if it's really not necessary, it's not the nightmare that many of us have been led to believe. Everyone needs to think about all of the issues when making an informed decision. Those issues include:

1. curve magnitude
2. known progression
3. risk of progression
4. age
5. pulmonary function
6. bone quality
7. pain
8. loss of function
9. failure of conservative treatment
10. status of health insurance
11. work status
12. family/friend status & support (e.g., does the person have small children at home, does the person have adequate support from family/friends to help out during recovery)
13. significant co-morbidities
14. does the person understand the potential risks
15. realistic expectation of the outcome

[kootenaygal]

Thank you, thank you

Thank you everyone, for your advice...I'll follow thru with all of your suggestions. I see the back surgeon at the beginning of December, and will also be asking for referrals for 2nd opinions, from my family doctor.
I value your opinions, and replies...what a wonderful support group for everyone!!! Thanks again....

[titaniumed]

I have had many expert opinions from all sorts of people through the years. Usually these are people who have no idea what scoliosis is. Funny how that works. Sound like Andy Rooney? Yes, it does. Rest in peace, we will miss you.

Opinions on subjects are quickly offered with minimal thought by many, even Andy did it, but he sometimes retracted on his statements AFTER careful thought....a learning process.

We as adult scoliosis sufferers have thought about our afflictions for many years and even I have changed views on scoliosis related subject matters. The one thing is, at least we have thought deeply about it.

Doctors and surgeons have thought about it. Each will have their views, most will say yes, its serious or major, its their duty. It seems that a good surgeon or doctor will START this way, it’s the best way to make a patient think. If a surgeon say’s, lets schedule next week, I would fly to Hawaii.

I have had surgeon’s ask me how, and how long have I been controlling my pain, it seems that they need to know that the patient has exhausted all non-surgical resources, and is running out of options. In other words, “last ditch effort”. I was there, mind blowing pain and out of time. Complications were 100% guaranteed. I had to gamble. Robert Redford’s million dollar pass line bet.

Kootenay, Let me tell you, it came up 7. I lost my gall bladder, a rare complication of scoli surgeries, but a very small thing....most complications in scoliosis are usually small things, probably the main goal with surgery is being pain free.

I waited 34 years. I waited because I was scared, but I knew that technology would advance which it did.....leaps and bounds.
Ed

[Pooka1]

Opinions on subjects are quickly offered with minimal thought by many,

The problem isn't minimal thought. The problem is less than zero knowledge.

A lay person doesn't know enough not to have an opinion. For a lay person to have an opinion at all is raising cluelessness to a zen art.

[rohrer01]

As Linda mentioned, people should not use fear to talk someone out of surgery. I have not had surgery, but I have a step-cousin that had a life or death surgery. She has congenital scoliosis. She was raised by her father who refused to let them operate on her for fear she would die. When she reached 18, her mom had her come to CA where she had the surgery to save her life. She could only be corrected to 60* because of a hemiverterbrae (that's my understanding anyway). She has the old-fashioned Harrington rods that left her flat backed. She is now not healthy enough to go through another surgery to revise or do something new to help her (she is totally disabled). She is on oxygen and has almost died at least two times that I know of from limited lung function (she was found passed out and blue and not breathing). She is only in her early 50's.

I have another friend that desperately needed lumbar fusion. She was so scared to have it because she was a Medical Assistant in the OR during these surgeries and it frightened her. Her spine has now self-fused and she is inoperable and in a wheel-chair and has very strong pain meds. That was her choice, but now she doesn't have a choice and she is only 62.

I hope this post doesn't offend anyone. I'm not trying to scare you into having surgery, either. It's just a person has to consider this option while they are still a surgical candidate because at some point you may not have a choice. It's a tough call and I feel really bad that you are in this condition. I would definitely recommend talking to skilled scoliosis surgeons to help you make your choice. The SRS has a list of many of the doctors that specialize in this. Best Wishes to you whatever you decide.

[Pooka1]

Surreal

A random tap dance instructor disagrees with one of the top spine surgeons in the world, Dr. Lenke, on a particular treatment course for a particular patient.

I just want that to detonate in people's minds.

Where do you get that kind of blind nerve? Can you buy it?

[Elisa]

This surgery for us older ladies/men who require fairly extensive correction and instrumentation, is always major. I am concerned that you're making a decision based on your family doctor's fear of the surgery, a person who possibly has little or no experience with this type of surgery. My advice is to get 2 or 3 opinions from Scoliosis surgeons who have plenty of experience on mature scoli patients and be guided by that. There are many here older than you who've had the surgery and benefited greatly.

Of course, the decision is yours in the end and can only be based on advice given and your desire or lack of desire for the surgery, after weighing up all possibilities. It's possible you may be advised against surgery, however, it needs to come from a specialist in the field, I believe.

It's very very hard to make this decision. Best of luck!

^^ Ditto to what Jennifer and others are saying here. No offense, BUT this is your family doctor's opinion you're talking about, a general practitioner, a 'jack of all trades' so to speak and is NOT a scoliosis expert. Keep on keeping on with your research, testing and upcoming appointment with your surgeon before even considering making a final decision. I'm still skeptical of our system (bad experience) here in BC too btw so there's another thought.

[rohrer01]

A random tap dance instructor disagrees with one of the top spine surgeons in the world, Dr. Lenke, on a particular treatment course for a particular patient.

I just want that to detonate in people's minds.

Where do you get that kind of blind nerve? Can you buy it?

KAPLOW! The shockwaves are spreading!

[Lorraine 1966]

Loved the answers to this question, and the humerous quotes Sharon I should just go to that tap dancer when I need to have a brain freeze. Rohrer01 so very sorry to read about your friends, that is so very sad. Both of those cases very easily!could have been myself, I am just so lucky.


Lorraine.

[golfnut]

By the way, I returned to my tap class a few months ago. My instructor raved about how tall and straight I am, but then announced to the class: "Karen is one in a million who has had a successful back surgery. I know so many people who do not get good results.". Some people just think they're experts on everything and feel it is their duty to help others make major decisions.

[Kayde]

Well meaning doctors but...

I was diagnosed at14. Refused brace or surgery. Never regretting not doing it. 2years ago at 43 I was diagnosed with extreme osteoporosis. I had a hormone check and ot on good vitamins. My t scores improved so fast my family dr se t me back for another bone scan. I went from -4.7 to normal range. But in the meantime my scoliosis that I had managed with massage and acupuncture was getting worst. I had been told by 4 doctors I was too old and would have to learn to live with the pain. My curves were 74 and 36. Which was a shock because I had stayed the same since my diagnosis. I found someone who specializes in adult corrections and he and I talked thru the entire treatment plan. I also took some awesome suggestions from this forum. And having said i would never have surgery I did it Monday before last this year. So I'm only a few weeks out. It hasn't been a picnic but I breath SO much better now. The crease in my abdomen is gone and I have a waist on both sides now. The pain is less each day. But before surgery I was afraid I would have to start living on pain pills. I would check with a lot of doctors. Seems bad information to tell some to just wait and see when u r clearly n pain. And your age should have nothing to do with how u heal. Although it can take u a little longer. My family dr didn't want me to do it because he was scared I could br in more pain. Then he saw the MRI and the x-rays that showed I was getting worse. But for me so many daily activities were limited and the pain was so bad in that leg and hip I just did the surgery to prevent further damage and deformity. Get some real honest opinions even if you go to one of the colleges of medicine the can give u good information

[Kayde]

72

There is a post about meeting someone who had this done. Just in case u haven't seen it I thought I would share it with u




I chatted to a 72 y.o. patient doing a walk around the halls with a walking stick. She said she'd had spinal fusion surgery for scoliosis 12 days ago. She looked great, said she had very little pain and is amazed at what her doctor has achieved. She said her curve had been "over 70" and she looked quite straight to me. She asked me loads of questions and she was impressed with the way I was standing and moving and that I had no pain. She was bright and optimistic

[jrnyc]

i think those two examples rohr gave are pretty extreme...
i feel really bad for them as well...
but i think more often the situation is patients with scoliosis who do not
have the surgery...who just live with the pain and difficulties it brings..
severe and dire consequences, i suspect, are more the exception than the rule...
that is not to discourage anyone from having the surgery...
just to try to give perspective....
then again, there is no guarantee that the surgery will eliminate pain..
for some of us, it is a very tough decision to make...

jess