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

[Pooka1]

Hey Susan,

Do you think it is fear of the unknown? Maybe you could talk to several patients who have had the surgery. Maybe you can also find some people with similar pain levels as you who did not have surgery. Everyone is different but if you talk to enough people you might find an answer for your situation.

I agree this decision is no easy task. I would not be able to decide for many adult patients whereas the decision for both my daughters was a no-brainer... it was obvious that surgery would be better than no surgery. It's about letting go of the fantasy of normal and cutting losses. It was not a hard decision from a technical/medical standpoint. There is a reason virtually all orthopedic surgeons recommend fusing large progressive T curves in kids. Surgery is not only the last resort but the only resort to hope to salvage a normal life.

In the case of adults with lumbar involvement and pain and where the curve obviously won't literally kill you, there is a spectrum of considerations and plenty of grey area. None of that conduces to making the decision easy. Don't beat yourself up over not deciding.

Good luck.

[golfnut]

Susan,
I tend to agree with Sharon that it is probably the fear of the unknown that is making it hard for you to be decisive about surgery. It is a difficult decison for all of us, but one that most haven't regretted. I had to also factor in that I didn't have much pain and was going to give up many activities that I enjoyed. As it turned out, I am back to all activities I had prior to surgery with the exception of high impact exercises. It is a tough surgery and a long recovery, but for me, the period of time that I waited for surgery was by far the most difficult. I am sorry you are so stressed. I hope that you will feel more decisive after your appointment on the 7th.

I definitely am glad I didn't wait any longer due to my age (60). Dr. Lenke said that I could wait a couple of years since I wasn't in much pain, but didn't recommend waiting until I was 70 because the "results aren't as good and the recovery is tougher".

[JenniferG]

My feeling is that you haven't yet found that surgeon to trust. When I saw my surgeon, I didn't know him from a bar of soap. He was pleasant but distant and rattled off risks and complications like a tape recorder. He said I needed surgery within 12 months. I went off with my surgery date 3 months hence and fell into some sort of anxiety/depression. I couldn't think straight. I couldn't imagine having this surgery. I ended up cancelling. Over the following months I did my research and got questions answered, but importantly, I researched my surgeon, spoke to people who knew him or knew someone who'd been operated on by him. There were many. I didn't get one single bad report. Everyone raved over his skills. I got stories about how he'd changed lives, given people back their lives. I heard about very complicated but successful surgeries. Gradually I came to trust this man who I'd only met once.

I suspect a second visit might have sped up the process. It ended up 9 months by the time I had the surgery. But I felt confident he would do the right thing by me and I think that's what I needed to believe.

[gardenia]

Trust your instincts

I mentioned that once I met Dr Bridwell, my brain told me 'go ahead'. At 62, after working so many years in corporate jobs in the computer business travelling for meetings with top executives etc. one starts trusting her 'gut feelings'. And, gut I have (baby fat) and otherwise.

Never considered the after the surgery phase. First week at the hospital was a total blur because I was heavily doped due to the dural tear or whatever which I can't remember.
Second week at the hospital was quasi normal but food was terrible.

Coming home. Rented a one bedroom across the hospital area which was a great choice by my husband. There are wide and clean hallways which I walk several times a day in circles. I can lay down or walk. Sitting is out most of the time for longer than an email.

Caregiver: my husband at 24x7 every minute I moan, he is there knowing that I am doing something I should not. I try to do things like reaching backwards etc. He now helps me with turning because he can see that I am not rolling top and hips together (he is very strict), won't let me relax one leg out in a froggie position because according to his description and doctor's paper document, I am pulling the screw attached to my hip. Oh, but it feels so good.

I will correct the nurses at Dr Bridwell that in the future telling patients that they could go home to a third floor without elevators is not an OK advise. I had problems climbing and they almost being carried up by husband and 2 daughters then down by myself. The next 3 days, I was in pain and tears. So, that passed and learned that I could have never done the walking I am doing here in the hallways in my daughters 2 bedroom condo with dead ends.

So, after the 3-4 days of miserry, my next desire was to visit the St Louis Cathedral specially after xmas (decorations etc). I wanted to go to mass but it would have been too long. I am no longer a practicing Catholic nor is my husband. Both daughters were baptized by not in the Catholic church because they did not have practicing good parents...

WE all went. I walked a lot and along the way did my prayers while looking at the prescious mosaic. One daughter took many photos as she is an archeologist and this might help her sometime in life. The other was less impressed. but, my intentions was to have the family in there to receive whatever those big domes on the ceilings were able to impart.

I want to believe that it is not only prayers from friends, family or myself for a rapid recovery but if there is a God and I took my girls into the sanctity of this place (I've been in there alone twice this past year and have felt feelings that I could not explain) that something in that church as a conduit from heaven above would transfer something into my daughters lives. I was not thinking about conversion but certainly something magic that they would have in their lives (like taking your car thru a car wash - pay $2 more and get a coating of wax- why not? when will you have the time to wax your car properly).

Does this make sense? I assure you I am not drugged at this time. But at 62, one can make up anything that makes sense even spiritually.

So, go meet with Dr Hu with a blank mind. No baggage, tell her your concerns and see what she has to offer. You will hear BS or you will hear confidence based on experience if she has it. Trust your feelings, ask questions and forget the 15 minutes allowance. Take someone with you that has your list of questions because you will not remember. The doctor and her entourage (I am sure she will have a fellow and maybe some interns) will not leave the room while you are in mid-sentence.

Remember that the appointment is about evaluating how good this doctor is in fixing your plumbing or spine. You need someone who can do the job correctly without causing other problems because they were not experienced enough to have expected it.

For example: Dr Bridwell wanted to make sure that I did not smoke nor I have diabetes. He said that another Dr. is having problems with someone he operated with diabetes.

Once your surgeon is done in the OR and you are in the hospital to get some monitoring until they can ship you home (don't ask to go home before you are ready regardless of how bad the food is) I had my husband sleep in the same room and it was a blessing. Those call buttons work but the staff is usually busy with other patients. So, if you have to go potty plan on waiting 10-15 minutes or an eternity - else your caregiver can take you.

Nights can be terrible without help and specially if you can't sleep. I have been on ambien for over 10 years and Dr Bridwell would not let me take it becasue the combo with other narcotics would mess me up. Like I can sleepwalk - yeah done that many times at home. but, looking at the clock until 4am is not helping with the healing. After, many nights for this, I had to fight it out with Dr Bridwell and convinced him to let me have one at night. Otherwise, it was no sleep, no rest, no use....

Good luck and please let us all know of your every step. There are many of us here to help sometimes I don't read blogs with old headings but then I find new things in them. So, maybe it is good to start a new heading.

You have my email ccmail4g@gmail.com ED is wonderful, he has supported me a couple of times directly. We are all here with one common problem that our friends and family cannot comprehend.

gardenia

[titaniumed]

I keep going in circles and coming back to the same place. There is a missing piece to my dilemma, and I cannot figure out what it is. Why can't I figure out that I need to have surgery? Meanwhile, I find myself in excruciating pain, in the evening....
Susan, usually not an indecisive person.....why now?

Susan, The going around in circles will finally grow old and only after you are totally comfortable with the right surgeon, confident in that persons expertise, will you make the decision.....The one thing that happens is we end up building up such a high tolerance to pain that we have to have someone notice and say something like “your laying down on the floor again” as a friendly reminder that the pain really is out of control. I know this because I was there.....it was ridiculous. I waited 34 years.

My 74 year old neighbor had some sort of back problem last year and was in surgery within 5 days......was fixed up and lifting bags of fertilizer a few weeks later. He decided that he wasn’t going to go through spine pain any longer than necessary. My jaw was hanging for a few days on that one. wow! Talk about a quick decision....and of course less stress.

These are two extremes in decision making.....I’m not saying wait 34 years or do it in the next 5 days....just pointing out the two differences in the thought process.....

I had trips out in Hawaii years ago where I was dying.....It was so bad....10 level pain on vacation for 2 weeks at a time. I was scuba diving with 9-10 level pain.....crazy stuff. The other divers could hear me moaning under water.

All these extreme pain events did add weight to the decision making scales of decision.

Ed

[titaniumed]

Right now I am in a bit of a frenzy as I am going to meet my second opinion [Dr. Hu] in 10 days and I am very nervous! What is she going to say? Will she say that I need to have more procedures or physical therapy [now x 1.5 years] and wait for surgery until things get worse? Will she say that I am OK as I am and just go home? Will she think that a surgical correction will help me? If she does say that....do I want surgery? Is she going to say to wait for surgery? I feel like I am auditioning! I have even started to plan my outfit!

I surely do need peace. Thanks for your advice. Susan

Excellent!

I didn’t see this post....I wouldn’t worry about Dr Hu, she is fantastic....and brutally honest. She will not push you, it will be totally your decision, as should be. You don’t have to make any decisions there at that meeting. No stress.....

Relax! Breathe! (smiley face)

Happy New Year!

Ed

[Pooka1]

Excellent!

I didn’t see this post....I wouldn’t worry about Dr Hu, she is fantastic....and brutally honest. She will not push you, it will be totally your decision, as should be. You don’t have to make any decisions there at that meeting. No stress.....

Relax! Breathe! (smiley face)

Happy New Year!

Ed

This really illustrates the difference between what many kids/parents are facing and what many adults are facing. The surgeon told me point blank, no build up... my daughters needed surgery. Thrown in the deep end. At no point was I asked to consider it or go home and mull over it or come back with a decision at a later date or anything like that. I think the authorities might have stepped in had I refused, at least on the first kid and probably on the second. The surgeon knew their lives would have been ruined or worse absent surgery so that's why he left me with no choice basically or that's how I took it both times. Because they had such fast-moving curves, I would liken their fusions to surgery to remove my diseased appendix or fixing my ruptured ectopic... everything is weighed towards the surgery with no counter reason.

I have never seen an adult spoken to in that way on the group. It is really a maddening set of grey areas for them it seems. I don't fault anyone for not deciding.

Good luck to everyone.

[Susie*Bee]

Sharon--not all doctors are that way with adult patients. I remember quite distinctly that that is why one Chicago member did not like my surgeon-- she wanted a doctor who would tell you "yes, you need surgery" or "no" or "not yet". Mine gave you the facts, the scenarios based on what was happening, and said you would know what to do when it was time, but it was your decision. Or you could just do nothing if that is what you decided, but then you would have those consequences. It IS your own life, after all. No matter how skilled your surgeon is, there are risks. Some don't want to go there and would rather risk ending up in a wheelchair with their chest caved in.

It is funny (peculiar) that though we think so differently in so many ways, I had almost written a post to Susan about "the fear of the unknown" and got too busy and then yours appeared... (smile)

Susan-- having been down that same road, it is a roller coaster ride. Many steps of the process are, up until the time of the surgery... The decision making process is very difficult, but it is the highest of the hurdles to leap over. I haven't gone back and read all the posts people have written in this thread, but I'm sure they have been very positive. Don't worry about the Wolpert book. It is excellent in so many ways, but I also found fault with it in what he said about older people and the time it takes to heal, etc. I think it is because he was younger and his knowledge base was with the younger set. You don't want to wait too much longer though, as the bones get more brittle with age and it does get a little trickier for the surgeons, although I think Linda has said they have done surgery on people much older. Some surgeons don't go past a certain age though.

One thing my surgeon had said that would help me to know if it was time to have surgery or not was if it was affecting my every day life. Is your back causing you to not do things you would normally be doing-- going out in the evenings or shopping with friends for the day? When I got to the point where I couldn't even carry a 9x13 dessert in to school because it was too heavy, or want to do anything in the evening, or go anywhere anymore, I realized it was affecting my life in such a way that I wanted to get it over with. I figured the sooner we went through with the surgery, the sooner the healing could begin and I could start living my life again. I am not one of the athletes on board here, but live a decent life, work full time at an elementary school and am very busy there, just managed having my whole family here (10 of us) for a week, doing the cooking, etc., and I consider that to be pretty good.

Best wishes as you work through this decision-making process. Relax a little and try to let your mind and emotions slow down a little for your appointment. It should go well.

[susancook]

This really illustrates the difference between what many kids/parents are facing and what many adults are facing. The surgeon told me point blank, no build up... my daughters needed surgery. Thrown in the deep end. At no point was I asked to consider it or go home and mull over it or come back with a decision at a later date or anything like that. I think the authorities might have stepped in had I refused, at least on the first kid and probably on the second. The surgeon knew their lives would have been ruined or worse absent surgery so that's why he left me with no choice basically or that's how I took it both times. Because they had such fast-moving curves, I would liken their fusions to surgery to remove my diseased appendix or fixing my ruptured ectopic... everything is weighed towards the surgery with no counter reason.

I have never seen an adult spoken to in that way on the group. It is really a maddening set of grey areas for them it seems. I don't fault anyone for not deciding.

Good luck to everyone.

I totally understand that the procedure is elective and my choice, but it might be helpful to at least get some sense of the surgeon's inclination towards whether surgery is a good idea for me or not. Everyone has his or her individual pain tolerance. I get that. I like honesty. Wonder how I could word some question to get her opinion more?
Susan

[Pooka1]

I totally understand that the procedure is elective and my choice, but it might be helpful to at least get some sense of the surgeon's inclination towards whether surgery is a good idea for me or not. Everyone has his or her individual pain tolerance. I get that. I like honesty. Wonder how I could word some question to get her opinion more?
Susan

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.

You might also always ask about whether your surgical window might close and you will not be able to get surgery even if you wanted it. Ask what would close your window and when you could expect the window to be closed on you, if ever. I imagine some are relieved to know the window has closed on them so they don't have to decide. Think about if you might be in that category.

[susancook]

Sharon--not all doctors are that way with adult patients. I remember quite distinctly that that is why one Chicago member did not like my surgeon-- she wanted a doctor who would tell you "yes, you need surgery" or "no" or "not yet". Mine gave you the facts, the scenarios based on what was happening, and said you would know what to do when it was time, but it was your decision. Or you could just do nothing if that is what you decided, but then you would have those consequences. It IS your own life, after all. No matter how skilled your surgeon is, there are risks. Some don't want to go there and would rather risk ending up in a wheelchair with their chest caved in.

It is funny (peculiar) that though we think so differently in so many ways, I had almost written a post to Susan about "the fear of the unknown" and got too busy and then yours appeared... (smile)

Susan-- having been down that same road, it is a roller coaster ride. Many steps of the process are, up until the time of the surgery... The decision making process is very difficult, but it is the highest of the hurdles to leap over. I haven't gone back and read all the posts people have written in this thread, but I'm sure they have been very positive. Don't worry about the Wolpert book. It is excellent in so many ways, but I also found fault with it in what he said about older people and the time it takes to heal, etc. I think it is because he was younger and his knowledge base was with the younger set. You don't want to wait too much longer though, as the bones get more brittle with age and it does get a little trickier for the surgeons, although I think Linda has said they have done surgery on people much older. Some surgeons don't go past a certain age though.

One thing my surgeon had said that would help me to know if it was time to have surgery or not was if it was affecting my every day life. Is your back causing you to not do things you would normally be doing-- going out in the evenings or shopping with friends for the day? When I got to the point where I couldn't even carry a 9x13 dessert in to school because it was too heavy, or want to do anything in the evening, or go anywhere anymore, I realized it was affecting my life in such a way that I wanted to get it over with. I figured the sooner we went through with the surgery, the sooner the healing could begin and I could start living my life again. I am not one of the athletes on board here, but live a decent life, work full time at an elementary school and am very busy there, just managed having my whole family here (10 of us) for a week, doing the cooking, etc., and I consider that to be pretty good.

Best wishes as you work through this decision-making process. Relax a little and try to let your mind and emotions slow down a little for your appointment. It should go well.

Thanks, Susie, your point about whether the pain disrupts your everyday life is good. I have some good days (mostly when I don't do much) and some totally awful days, particularly when I walk and stand a lot. I have difficulty carrying my 2 month old grandson. I am 66 and fairly flexible. I wonder how the progression will look and whether I will be in a wheelchair in 5 years....and then the possibilities of surgery might be limited. I need to re-look at my questions for Dr. Hu and see if she will give me some insight into what my future will be like if I do not have surgery. I feel that I am on the scoliosis fast track as it has been about a year since I first knew about the scoliosis and degeneration.

One part of relaxing is figuring out that I do not need to decide about surgery at this appointment. Originally, I thought that I would, but now I think that I probably will not.
Thanks for your support. Susan

[Susie*Bee]

Susan-- this is me, Susie, not Pooka, but I would imagine she (Dr. Hu) would let you know what your progression is potentially going to lead to, and based on that knowledge, you can make a pretty good decision. Others have asked questions such as "if I were your sister, (mother?) what would your recommendation be...?" Most surgeons don't want to leave you floundering without recourse past the point of being able to have a viable surgery. I'm sure she'll be able to help you see where you stand and what lies ahead. Ask her advice. Be yourself and tell her how confused you are about this. A doctor who knows that a patient is concerned and has been trying to become informed (reading Wolpert, being on the forum asking questions, etc.) should be very open to answering your questions and quenching those fires that keep bursting into flame full of anxious thoughts.

Susan-- I typed/posted this before I saw the one you wrote to me... so I am adding on now. I do have to say that with some of us (not all, but with me and some others) the surgery is not a panacea where you can do everything you used to do. Lifting is still difficult for me and I can't lift things much more than 20 lbs. But grandsons can climb up into Grandma's lap, and I can pick them up for a super short "quickie"...

Yes, you don't have to decide everything at this appointment. You'll need some time to think it over and discuss it. Take care.

[susancook]

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.

You might also always ask about whether your surgical window might close and you will not be able to get surgery even if you wanted it. Ask what would close your window and when you could expect the window to be closed on you, if ever. I imagine some are relieved to know the window has closed on them so they don't have to decide. Think about if you might be in that category.

Sharon, can I hire you to come with me for the appointment? I'd treat you to lunch! Susan

[Pooka1]

Sharon, can I hire you to come with me for the appointment? I'd treat you to lunch! Susan

Susan, you can do this. You're qualified. You don't need me or anyone. :-)

[susancook]

Susan, you can do this. You're qualified. You don't need me or anyone. :-)

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......