I need some confidence....anyone have any to give me? Making the BIG decision!

[JenniferG]

You could ask if she would choose surgery for herself or her sister or mother given your radiographs and history of pain. Some doctors are so clear on the need for surgery that they volunteer this comment. If the surgeons are not clear about what they would do then that is good to know also. But you need a range of opinions.

That's exactly what I asked my surgeon. "If it was your wife in my position, what would you recommend for her?" Surgery. It did help the decision to go forward.

[tae_tap]

Your confidence in me is appreciated. I have never been so stuck in my entire life on a decision. Indecision is not my style....I am not known as a woman who takes prisoners! I have read and re-read this thread and others seem to know me better than I know myself. I do need to be able to 100 percent trust my surgeon. I worry that I only have 30 minutes with Dr. Hu, but I can come back. I need to better understand the change in coronal balance. I asked my physical therapist and she said something like the muscles are no longer able to hold the spine upright.

Have a great new year! Susan.....offer is still open for lunch......

Susan,
I will tell you what my doctor said when I was researching and trying to understand every aspect (when my expertise is in feet, not backs): " it is your turn to be the patient and only that". In other words, you are going to drive yourself completely insane if you use your energy understanding every little technical aspect of your condition/surgery.

I also asked him what he would say if this was his wife, and he said " sister, it's time"! But he also said that we needed to become friends and once that relationship was established we would discuss a date.

It is hard when you are in the medical field not to pick throu every scenario and want to know 100% of the facts and statistics, but at some point we too have to let go and just trust that we have the education and knowledge to pick the best doctor for our situation. For me prayer was a big part. Through prayer and trust I was able to make that first step. And your advice from the beginning to let go of the "what if's" and trust all will be fine.

Tamena

[susancook]

Thank you, thank you, thank you to everyone who has offered suggestions and support. I will re-read this thread often and revise some of my questions....yes, Linda, I have limited my questions to my doctor!
Susan

[Irina]

Susan,

I know it is very hard, but try to relax before the appointment with Dr. Hu - you don't have to decide anything at this appointment. You get to know the doctor, see what she has to say, go home, sleep on it and see what happens. If you choose your questions carefully, you'll get all the answers. I did - Dr. Hu covered most of the questions I had in our conversation and I only had a few left and she answered all of them.

[Confusedmom]

Susan,

A little off topic here, but have you had a bone-density scan? That could possibly help you make a decision. When I found out I have osteopenia, it was one more check mark on the side to have surgery sooner, rather than later.

Best,
Evelyn

[susancook]

Susan,

A little off topic here, but have you had a bone-density scan? That could possibly help you make a decision. When I found out I have osteopenia, it was one more check mark on the side to have surgery sooner, rather than later.

Best,
Evelyn

Scan was great! Solid bones! Something like + 1.5. Something is at least OK! Susan

[susancook]

Stuck

However, you have to be very sure about this surgery. Otherwise you might end up without pain but bitterly disappointed because you've lost flexibility. Or bitterly disappointed because you've still got a bit of a lean when standing...that sort of thing. Because there are cons as well as pros for this surgery, so you have to know in your mind that you absolutely must have it and for all the important reasons. To arrest progression, to reduce/remove pain.

The above statement I found in a message a few pages back and I think that It summarizes my hesitation. How can anyone be "very sure" about the surgery?

So....where am I?....I went for a second opinion w/ Dr. Hu and loved her! She recommended a 2 days surgery w/ T3-sacrum fusion and repair of discs, stenosis, and other degenerative stuff. Se said that mortality w/ the surgery for my age and surgery were 1/100. Scary. Her surgery scheduler called me today and I told her that I still need to think about it. Is there some hole that I can crawl in? HELP! Where can I find peace with this? Dr. Hu said that I would be progressively degenerating if I did not have the surgery. I think sometimes that I can manage like I am and just continue to have steroid shots and denervations....and then I think, That's crazy! How can I do that for 20 more years......
Susan

[JenniferG]

No pelvic fixation, Susan?

99 out of 100 patients survive and that would include patients with other health problems. The odds are very good.

[Pooka1]

So....where am I?....I went for a second opinion w/ Dr. Hu and loved her! She recommended a 2 days surgery w/ T3-sacrum fusion and repair of discs, stenosis, and other degenerative stuff. Se said that mortality w/ the surgery for my age and surgery were 1/100. Scary. Her surgery scheduler called me today and I told her that I still need to think about it. Is there some hole that I can crawl in? HELP! Where can I find peace with this? Dr. Hu said that I would be progressively degenerating if I did not have the surgery. I think sometimes that I can manage like I am and just continue to have steroid shots and denervations....and then I think, That's crazy! How can I do that for 20 more years......
Susan

I agree with Jennifer that the people who have problems or worse probably had co-morbidities. Kids with significant health problems sometimes have problems with fusion whereas the vast majority of otherwise healthy kids sail through. You seem to be generally healthy apart from your back.

It's good that you didn't schedule because you shouldn't feel like you are being rushed. You need to own this decision.

You may be able to manage now but Dr. Hu told you it would be getting worse. Based on what you wrote, there is NO CHANCE you might plateau on the worsening. So your choices are wait to see how much worse it gets and see if you can handle it or you can fix it now. Looking at this from the outside, any decision you make would seem defensible.

Maybe you can follow up with asking so what if it gets worse. What would that mean? It would probably help you to know if avoiding the flexibility loss of a lumbar fusion now may result in loss of mobility itself in the future.

You should also ask how long you can expect to get the steroid shots both at the present pace if it doesn't worsen significantly and at an increased pace when you deteriorate significantly. If your cortisol levels crash, you'll feel crappy on top of having severe back pain.

There are no angels looking out for back patients. You are on your own.

Good luck.

[Irina]

How can anyone be "very sure" about the surgery?

Susan,

I asked myself the same question - how can I be 100% sure about this surgery and I think that the answer is that nobody can be absolutely sure. You just make the best decision you can and do not look back.

I compared the things I was able to do 5-10 years ago with what I can do now and I know that in another 5-10 years I will be able to do even less. Three doctors telling me "it will get worse" only confirmed what I knew already. So, I decided to be proactive and don't second-guess myself anymore.

Best of luck with your decision!

[golfnut]

Susan,
Have you looked at a thread I started "Looking for People Who Have Returned to Athletic Activities after Spinal Surgery"? In my signature, there is a link to a video of me playing golf. On the thread that I started, you can see a video of Donna playing tennis, Doreen archery shooting, Ed snow skiing, etc. Anyway, one definitely looses flexibility with spinal fusion, but it doesn't stop us from returning to most activities.
Best of luck with your decision. I struggled with it as well, especially since pain was not an issue at the time.

[JenniferG]

Susan,

I asked myself the same question - how can I be 100% sure about this surgery and I think that the answer is that nobody can be absolutely sure. You just make the best decision you can and do not look back.

I compared the things I was able to do 5-10 years ago with what I can do now and I know that in another 5-10 years I will be able to do even less. Three doctors telling me "it will get worse" only confirmed what I knew already. So, I decided to be proactive and don't second-guess myself anymore.

Best of luck with your decision!

Irina, being "very sure" isn't quite the same thing as being 100% sure. Since there are never any guarantees, we can't be 100% sure, therefore, we need to settle for "very" sure. This can be based on stats such as the one Susan quoted that one in 100 don't survive the surgery which means 99 in 100 do survive. But I would suspect that figure is based on all patients, including those with other, risky medical conditions.

There is risk of death in all surgeries, not just spinal fusion surgery.

[JuliaAnn]

I have followed this thread with interest. Due to my severe injury last July, I didn't have an option on surgery.

My scoliosis was slowly collapsing and I had degenerative discs that caused pain for at least 10 years before my injury. During those 10 years, I used conservative non-medicine methods to manage the pain - a TENS unit, home traction machine, massage, wearing a brace, physical therapy, heat and ice packs.

During those 10 years I sought surgery twice but was told I was too old. That made me so mad! I was about 43 years old the first time and about 49 the second time I sought surgery, I can't remember. I figured it would be way easier to recover from major surgery while I was healthy than wait until I was completely collapsed. It just didn't make sense to slowly lose so much mobility and function and health when I knew surgery would give me back the stability my spine lacked. When I injured my back in July, I was relieved that finally I would be able to get my back fixed. I had surgery on October 2nd at the age of 53 and have just begun my fourth month of recovery.

As for trusting a surgeon... after having gone through so many years of conservative treatment and being told I was too old, I finally decided to trust God to use even a crummy surgeon if I could find one. Last year I was in serious pain and disability so I could no longer physically shop around for a surgeon. I could barely manage sitting in a car having someone else transport me anywhere. But I was at great peace when I decided to trust God to work everything out. I did an internet search for scoliosis surgeons in Raleigh, NC and found Dr Hey. He was the only surgeon I called and I didn't even bother to get a second opinion. I didn't know anything about him, other than finding his blog so I didn't even know he was a fantastic surgeon. I'm glad I trusted God to work everything out.

When I saw Dr. Hey, he asked if I wanted any injections. I told him no because that would only mask the problem and would not make my spine stable. He completely agreed. My insurance required all possible conservative methods were tried before surgery would be approved. Fortunately, I got approval for surgery without the injections. I'm glad about that.

As for losing mobility... I have been slowly losing mobility over the past decade anyway so it didn't matter to me whether surgery would make me lose even more. I am fused from T1 to pelvis, with 29 bolts and an 18" incision. I use grabbers for a lot around the house. I do have teen sons at home so they get things out of low cupboards for me. It is wonderful not having the constant dreadful pain I had before fusion. The pain I have now is all "healing pain" which is good, unlike the "sick pain" I had before. Healing pain is bearable!

This was my first ever surgery and it wasn't as bad as I thought it would be. The recovery pain has been bearable with pain medication and support. During the first 24 hours after surgery, I didn't know I could press the morphine button often. In the middle of the night, a nurse came into my room and said to me "You've only pressed the morphine button 3 times in 4 hours. Is everything ok?" I told her I didn't want to get addicted. She said "Honey, you can press it once every five minutes!!! So watch that clock on the wall. When five minutes have passed, you can press the button!!!" She was amazed that I had born so much pain with almost no medication. I was glad they figured out that I wasn't using the button and encouraged me to use it. Pain medication is good!

I have no regrets whatsoever about getting surgery. Yes I've lost some flexibility but I was slowly losing all flexibility before surgery anyway. Yes, I'm having a lot of pain in recovery, but I know this is temporary. If I did not have surgery, the pain would only get worse. I'm looking forward to being able to hug my grandchildren again without fearing they'll throw my back out. I'm looking forward to being able to using my sewing machine without a lot of pain. I'm looking forward to being able to sit in any chair, anywhere in the world! Sitting was so uncomfortable that I stood a lot and had to quit going to church and even visit friends because most seats caused my vertebrae to slip and nerves to pinch. I am now 54 years old and instead of dreading growing older with pain that only gets worse, I'm getting a life back. 2013 is a very good year already.

Susan, I hope you find peace in your decision. I care about you and I'm keeping you in prayer.

[susancook]

No pelvic fixation, Susan?

99 out of 100 patients survive and that would include patients with other health problems. The odds are very good.

Unsure about pelvic fixation....exactly what is that? Susan... Last night I was talking to my husband about the 1 in 100 risk and told him that when Dr. Hu said that, I immediately said to her, "I don't smoke, and am about normal weight, not hypertensive". She replied , "Then maybe you are on the other side of the 1%". I said to my husband, "I was trying to convince her that I was less that 1% risk." He replied, "You were trying to convince yourself". Hmmmmmmm..................

[susancook]

Susan,
Have you looked at a thread I started "Looking for People Who Have Returned to Athletic Activities after Spinal Surgery"? In my signature, there is a link to a video of me playing golf. On the thread that I started, you can see a video of Donna playing tennis, Doreen archery shooting, Ed snow skiing, etc. Anyway, one definitely looses flexibility with spinal fusion, but it doesn't stop us from returning to most activities.
Best of luck with your decision. I struggled with it as well, especially since pain was not an issue at the time.

I have read your thread and appreciate those that responded. I used to backpack....Dr. Hart said, Probably not", but Ed seems to make it work. Susan