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

[susancook]

Depressing choices

Trying to feel more confident about surgery. Part, well most of me wants to back out. When I feel ok, I think that maybe the X-ray is wrong and that I don't have degeneration. I do believe that I have a stenosis since my butt and thigh hurt when I stand or walk. I only had one visit with Dr. Hu, maybe I need her reassurance that things are as bad as I think that they are.

As I figure it, maybe I have 2 choices:

- to not have surgery and possibly watch my discs degenerate and my vertebrae become more stenotic. Then maybe need surgery when I get worse and am older ( new readers, I am already old!). But maybe, maybe I could be OK without surgery.

- to have surgery means that I will have the change and inconvenience of fusion from T3 to sacrum. Pain after one year and for the rest of my life could be more pain, the same pain, or maybe less pain or no pain. Maybe I will have more disability or maybe my number was up and I am the 1 of 100 that Dr. Hu gave me as statistics for death at my age with my projected surgery.

Maybe I should meet again with Dr. Hu. Where is my confidence? (Curse word deleted)
Susan

[Confusedmom]

Susan,

I think you should meet with your surgeon or possibly another surgeon (for second, third or whatever opinion). Your case seems like pretty much of a slam dunk for surgery now. But, I TOTALLY get the indecision and focus on risks. That's me! But you have to balance the risks of surgery with the risks of NOT having surgery. If you don't, it seems pretty certain degeneration and pain are in your future. Those can cause functional disability. If you do, you likely will have a reduction in pain, if not elimination, and you will trade off a loss of flexibility. Try not to worry so much about the risk of death and other risks that just are very rare complications. You have a top surgeon, which should help reduce those risks.

Best,
Evelyn

[tennisplayer]

Susan,
This is Gretchen's husband, I will tell you her experience. She had degenerative lumbar scoliosis which had progressed over the past 3 years along with spinal stenosis. She is 70 and still was able to play tennis several times a week. Although the curve was only 34 degrees from observation she had significant changes over that time. It was a difficult decision. Her surgeon did the anterior part (actually from the side) on November 12. It was complicated by a heart rhythm problem so the posterior part wasn't done until Dec. 7. She was very weak and it was a difficult time. However, she made it through that and when her surgeon last saw her several weeks ago he thought that she was doing amazingly well.

Gretchen is able to walk for 30 minutes at a good pace without a problem. She still is taking pain meds but has cut down alot and will go for 7-8 hours without any med. The problems she presently has: 1) difficulty with regulating the bowels- more often lately too loose so we have stopped the miralax for now,2) she does get some swelling of the lower legs- left leg more than the right- the surgeon thinks that will go away but no one really seems to know why it occurs- we control it by periodically lying in bed with her legs on two pillows and using compressive stocking occasionally although they are not comfortable, 3) she has to sleep on her back and used to always sleep on her side, hoping she will be able to do that once she has achieved fusion, 4) her surgeon still wants her to wear her brace when she is up and that is hot and uncomfortable, 5) she gets depressed sometimes thinking that she should be further along even though it is less than two months from her operation. Although she still has back pain she no longer has leg pain as she did before surgery. She still is not fully independent- cutting toenails, shaving her legs, removing her socks- and that bothers her but I'm sure others on this forum who are further along can give you better information about that.

Gretchen does feel that she will be able to return to tennis in the future. She had the same doubts you have. I am a physician and have had patients in the past with similar problems who did not have surgery and developed other complications such as difficulty breathing due to compression of the lungs from the deformity. She felt too that it would be better to do the surgery while she was in pretty good condition rather than wait a few years when she would be older yet. Getting some regular walking exercise before surgery does help.

Susan, I don't know if this information is helpful to you. It is a difficult decision. Whatever you decide to do will be the right decision for you.

Dick

[susancook]

Susan,
This is Gretchen's husband, I will tell you her experience. She had degenerative lumbar scoliosis which had progressed over the past 3 years along with spinal stenosis. She is 70 and still was able to play tennis several times a week. Although the curve was only 34 degrees from observation she had significant changes over that time. It was a difficult decision. Her surgeon did the anterior part (actually from the side) on November 12. It was complicated by a heart rhythm problem so the posterior part wasn't done until Dec. 7. She was very weak and it was a difficult time. However, she made it through that and when her surgeon last saw her several weeks ago he thought that she was doing amazingly well.

Gretchen is able to walk for 30 minutes at a good pace without a problem. She still is taking pain meds but has cut down alot and will go for 7-8 hours without any med. The problems she presently has: 1) difficulty with regulating the bowels- more often lately too loose so we have stopped the miralax for now,2) she does get some swelling of the lower legs- left leg more than the right- the surgeon thinks that will go away but no one really seems to know why it occurs- we control it by periodically lying in bed with her legs on two pillows and using compressive stocking occasionally although they are not comfortable, 3) she has to sleep on her back and used to always sleep on her side, hoping she will be able to do that once she has achieved fusion, 4) her surgeon still wants her to wear her brace when she is up and that is hot and uncomfortable, 5) she gets depressed sometimes thinking that she should be further along even though it is less than two months from her operation. Although she still has back pain she no longer has leg pain as she did before surgery. She still is not fully independent- cutting toenails, shaving her legs, removing her socks- and that bothers her but I'm sure others on this forum who are further along can give you better information about that.

Gretchen does feel that she will be able to return to tennis in the future. She had the same doubts you have. I am a physician and have had patients in the past with similar problems who did not have surgery and developed other complications such as difficulty breathing due to compression of the lungs from the deformity. She felt too that it would be better to do the surgery while she was in pretty good condition rather than wait a few years when she would be older yet. Getting some regular walking exercise before surgery does help.

Susan, I don't know if this information is helpful to you. It is a difficult decision. Whatever you decide to do will be the right decision for you.

Dick

Thanks Dick and Confusedmom, your posts are so helpful. I am a PhD prepared nurse practitioner, so I have worked both clinically in an outpatient setting and at a research center doing hormonal research.
I know that things will get much worse before they get better. Tell your wife that many people between 2 weeks and 2 months regretted having surgery. At 4 months, most people said that they were happy that they had surgery. Maybe that will help Gretchen some. Everyone one in my family is so supportive. I delude myself to think that I won't get worse in the future, but, after all, the condition is called degenerative for a reason. Thank you, thank you, thank you to both of you and all that have been supportive.

Gretchen walked 30 minutes without leg discomfort? I am awed. My leg pain starts as soon as my foot hits the floor in the morning.

I will try to set up another meeting with Dr. Hu via phone as I live about 1000 miles away from her. If I rephrase my questions, I think that I will get the answers that I need. I have been seeing a therapist for depression, some of which was brought on my back pain. I asked him about Dr. Hu's comment that she could fix my back, but not my pain. He said that every conference that he goes to the caveat is not to say that the surgery will fix pain, because maybe it will not. I think that she did not want me to be disappointed if I still had pain after recovering from surgery.

Susan

[golfnut]

Susan,
I was fearful before surgery that I would be possibly giving up my active, enjoyable life by having surgery, especially since I had little pain, however, that has not been the case. When asked about serious complications from the surgery, Dr. Lenke said it was less than one per cent. I've never heard that one out of 100 don't survive. I think that sounds extremely high. If you were younger and this indecisive, I might recommend that you wait, but you are in considerable pain and also reaching the age where I think most surgeons would prefer to do the surgery now. Dr. Lenke told me when I was 59 that I could wait a few years since I wasn't in pain, however, he suggested that I not wait too long because the correction would not as good and the recovery could be more difficult. I hope you can find peace with your decision for surgery. FYI: I played golf yesterday, took a bike ride, and also went on a long walk. We had unseasonably warm weather and I couldn't resist being outside. Think positively and be confident that you are making the right choice.

[JenniferG]

Susan, my surgeon didn't give me any guarantees either. He went to great pains (mine!) telling me the list of risks and complications. He said he could only correct me a maximum 60% but I got better than that. None of the risks or complications (2 pages) actually happened. If you could spend a few days with me now, I'm sure it would soothe your nerves and help clear away your doubts.

Just today I gave my daughter a hand with her housework. The kids went back to school after Summer holidays. The place was a mess. I scrubbed walls, floors, bath, toilet, shower cubicle, windows, mirrors. I vacuumed inside, swept outside, folded laundry. Hours later, I came home with not so much as a twinge. And I'd already done a 5am 2.5km walk before going over there. Before surgery I couldn't have stood long enough to do most of those things. I hate blowing my own trumpet like this, but it's true and it's possible that you could have such an outcome.

Ok, it's true that not everyone is as lucky as I have been. But the vast majority of us is glad we had the surgery. Most of us are vastly better off than pre-op, it's hard to deny. There are still a few "works in progress" on this forum and I have not lost hope that those will have their problems resolved eventually.

[naptown78]

Susan, my surgeon didn't give me any guarantees either. He went to great pains (mine!) telling me the list of risks and complications. He said he could only correct me a maximum 60% but I got better than that. None of the risks or complications (2 pages) actually happened. If you could spend a few days with me now, I'm sure it would soothe your nerves and help clear away your doubts.

Just today I gave my daughter a hand with her housework. The kids went back to school after Summer holidays. The place was a mess. I scrubbed walls, floors, bath, toilet, shower cubicle, windows, mirrors. I vacuumed inside, swept outside, folded laundry. Hours later, I came home with not so much as a twinge. And I'd already done a 5am 2.5km walk before going over there. Before surgery I couldn't have stood long enough to do most of those things. I hate blowing my own trumpet like this, but it's true and it's possible that you could have such an outcome.

Ok, it's true that not everyone is as lucky as I have been. But the vast majority of us is glad we had the surgery. Most of us are vastly better off than pre-op, it's hard to deny. There are still a few "works in progress" on this forum and I have not lost hope that those will have their problems resolved eventually.

Well I will toot my own horn too! I have had any number of people tell me that they can't believe that I have had the extensive back surgeries that I have had. If they didn't know, you can't tell by looking at me. I look like anyone else. I work a busy full time nursing job, which involves many hours on my feet.

I agree with Jennifer, if you could just spend a day with some of us you would feel so much better. We aren't robots or stiff. We look like anyone else and can do many of the things you want to do.

I have been in alot of pain which caused major disability in my life. There was a time only 3 years ago that I could barely walk across my living room. It was a miracle that I managed to work my job.

The flexibility I have lost is nothing compared to the life I have regained. So what that I can't turn my whole head to see behind me? I adjust and just turn my body. So what that cutting my toenails is a little more challenging? I can still do it, it just takes more time. So what that I can't run? I can walk for hours. And so what that I can't slouch? I have gotten more complements on my posture than ever!

A secondary benefit: this makes you tough. After this you can survive anything.

[susancook]

You guys are awesome! I need to see someone with a fusion to sacrum doing things. That might reassure me. I went out walking with my husband and friends to a Wednesday art walk. I was in a lot of pain but smiled and drank wine. I came home and went straight to my heating pad. Today, I woke up and could hardly walk. Now, I have been on my heating pad for a while, and I feel better.

So, maybe more evidence that surgery should help me. I just wish that Dr. Hu could give me some chance that the surgery will decrease my pain. It would be such a bummer to be 66, be fused to sacrum and have the same pain. I really need to talk to her about what is the possible reduction in pain that I could anticipate. I know that there is no guarantee. I get that. I just want a little bit of hope.

Thanks so much to everyone that has responded. I will cut and paste all of your responses and save them to read. I also will copy some responses and paste them in my room at the hospital. In my professional life, I am decisive. This scoliosis surgery really has me baffled.

Again, my gratitude.
Susan

[loves to skate]

Hi Susan,
Yes, I am back home from my cruise. It was a great experience and something I never would have been able to do prior to my surgery. Before surgery, I was in about the same shape as you are. I could barely walk to my mail box without pain and I had to sit in my kitchen to prepare a meal because I couldn't stand for more than 5 minutes. As you know, I still have pain, but not like before surgery. On our cruise, I had very little pain, did a lot of walking on different islands walking up and down hills. On board ship, I climbed three flights of stairs several times a day since our cabin was on the bottom floor where some of the crew stayed. I did Zumba a couple of days and one evening, I climbed the ratlines up to the crows nest about halfway up to the top of the fore mast. What an awesome sight it was and a great feeling of accomplishment. I am so blessed.
Susan, you need to start imagining the things you will be able to do once you have your surgery. There really is power in positive thinking. I hope this helps you some. The relaxation/healing CD that I listened to was Peggy Huddleston's. There also is a book, but I didn't have time to read it because I only learned of it one week before my surgery. If you can't find a copy, send me your address and I will send you my copy. I believe she has a website.
Take care, Sally

[susancook]

Hi Susan,
Yes, I am back home from my cruise. It was a great experience and something I never would have been able to do prior to my surgery. Before surgery, I was in about the same shape as you are. I could barely walk to my mail box without pain and I had to sit in my kitchen to prepare a meal because I couldn't stand for more than 5 minutes. As you know, I still have pain, but not like before surgery. On our cruise, I had very little pain, did a lot of walking on different islands walking up and down hills. On board ship, I climbed three flights of stairs several times a day since our cabin was on the bottom floor where some of the crew stayed. I did Zumba a couple of days and one evening, I climbed the ratlines up to the crows nest about halfway up to the top of the fore mast. What an awesome sight it was and a great feeling of accomplishment. I am so blessed.
Susan, you need to start imagining the things you will be able to do once you have your surgery. There really is power in positive thinking. I hope this helps you some. The relaxation/healing CD that I listened to was Peggy Huddleston's. There also is a book, but I didn't have time to read it because I only learned of it one week before my surgery. If you can't find a copy, send me your address and I will send you my copy. I believe she has a website.
Take care, Sally

Sally, I am glad that you enjoyed your cruise. I enjoyed reading all that you did. Our vacation to Puerto Vallarta has been great for me as it is showing me what I can and cannot do. I am going on a horseback riding trip tomorrow to a waterfall. My husband is worried about me being in pain, but us scoliosis warriors are great at gritting Through it. It amazes me how I can be in severe pain and still put on a social smile. I will do the horse ride and then retreat to my heating pad. Too bad that the horse doesn't have a little plugin on his butt for my heating pad.

On the bright side, I swam 25 laps in the pool the last 2 days. The pool is super warm and I bought these really cool googles, NOT. Gives me a sense of accomplishment and some great thinking time. Thanks Gayle for your suggestion for swimming.

Adios, Susanna

[golfnut]

Susan,
25 laps is great. You said you would like to see someone who has been fused to the sacrum. If you go to my signature, you can see a video of me playing golf 1 year after being fused T4-sacrum. I am now 2 years post op and have more flexibility than the video taken at 1 year, but it might give you some reassurance that it is not like being in a straight jacket.

[susancook]

The one month to go for surgery anxiety

My surgery is next month. (Expletive deleted) I need some suggestions on decreasing anxiety. I think about the surgery almost every waking hour and sometimes find tears welling in my eyes. I worry about every detail in an effort to control the situation and cannot let go.

I trust my surgeon....why can't I let go and just trust her? That was the "plan", but it's not working..
HELP!
Susan

[Irina]

My surgery is next month. (Expletive deleted) I need some suggestions on decreasing anxiety. I think about the surgery almost every waking hour and sometimes find tears welling in my eyes. I worry about every detail in an effort to control the situation and cannot let go.

I trust my surgeon....why can't I let go and just trust her? That was the "plan", but it's not working..
HELP!
Susan

Keep busy as much as you can. Not just physically, but mentally busy. If you're not at work, read something that will just suck you in - John Grisham, Michael Connelly. Their books are hard to put down. You'll be drawn into legal drama and your mind will take a brake from medical drama :-)

[leahdragonfly]

My surgery is next month. (Expletive deleted) I need some suggestions on decreasing anxiety. I think about the surgery almost every waking hour and sometimes find tears welling in my eyes. I worry about every detail in an effort to control the situation and cannot let go. I trust my surgeon....why can't I let go and just trust her? That was the "plan", but it's not working..
HELP! Susan

XANAX!

Seriously though, some here have taken an anti-anxiety med in the weeks prior to surgery. Better living through pharmaceuticals. I had to take something to help me sleep the last weeks prior to surgery.

Also, daily physical exercise, as much as possible. Swimming is great! I am glad you are enjoying it.

I think many of us were simply terrified the last month before surgery. There is no easy cure, but as suggested, stay as busy as possible.

You can do this, Susan, and you're going to do great.

Fondly,

[jane d]

Susan, prayer helped me the most. My own prayers and those of my friends and family. I am one who tends to worry and I like to be in control of everything but I found I had to let go and trust God as He is the only One in control of everything anyway. I learned this the hard way years ago as I took care of my parents who both developed primary brain rumors 3 years apart. He gave me strength during that trying time and I can say that I had not one sleepless night before my surgery. My recovery has gone exceedingly well except for the return of some sciatic pain as you know. I am a very active person and am doing about all now at 6 months that I did in the past but am feeling better than ever since I can stand forever without hurting, no longer feel like I'm collapsing inside, my rib is off of my pelvis, etc. I have been driving since 6 weeks after surgery(off all pain meds by then) and living a normal busy life. Xanax scares me a lot! I have a son who became addicted to it and had a very hard time getting off of it. I would avoid it at all costs. Staying busy is also helpful toward getting your mind off of the surgery. I think you will say after this surgery that it was not nearly as difficult as you had imagined. I will be praying for you.
Jane