Finding a surgeon

[titaniumed]

Misty

Nice to have Gail (and others) pop in and break the ice....She is spot on.

What kind of surgery is he doing? Did he tell you how many levels? I am wondering on this 3 week recovery timeframe, and well, don’t really think “any” spine surgery done in the age 40-50 group would fall in that 3 week recovery timeframe. Even if he was doing a shorty down in the lumbar, which some patients here have done, I would be weary.....If you need a full fusion, you need a full fusion. Now I have to ask, how old are you? Age is important.

My surgeon told me a year, I figured two years.....(I did have a massive anterior procedure...) At age 49.

For full fusion, the first 6 weeks are pretty much a “survival mode” where every minute is spent trying to get comfortable. Its hard to sleep, and its hard to sit. So, that leaves standing. My laptop was on my kitchen counter, and I would go over and take a peek at things for a few minutes. Attention span is shortened considerably.....I did make major decisions on 100mg plus of Percoset, after looking things over multiple times over a few days. My answers did not come quickly and refused to respond on issues for a few days. It was ok since everyone understood, and waited for me. You will need to prep your inner circle, and your business circle. This is no shoulder surgery, or knee job. Full fusion scoliosis surgery is serious surgery and complications can and do happen. I call it the “C” word. Sigh.....You need to know because we need to know. Its also impossible to cover all that can happen. Be ready with horse blinders and walk and look straight ahead. In other words, Damn the torpedoes. We need to fuse, and not have any infections.

Working from home is possible, short periods of time, and having the ability to lay down when you can. We sleep like cats in our recovery, and its draining. Fatigue last’s a REALLY long time. Years.

On the shoe situation, or high heel thing, maybe if I was Prince I could comment....(smiley face) I think that this isn’t a good idea, even if you were fused to the pelvis a few years post and fused solid. High heels promote or increase the lordosis in your lower spine and really do throw off your balance in the sagittal plane. (side view)(front to back) This affects your neck. Scoliosis surgeons straighten up scoliosis curves and rebuild or set your kyphotic and lordotic balance (viewed from the side)
You have lordosis in your lower spine, or small of your back, and you also have it in the neck. Kyphosis is the opposite curve in your upper back or thoracic spine. Some call it round back.

There is no race, in fact scoliosis surgery is probably the best teacher of patience. I can sit and watch the grass grow now.....setting realistic goals, with realistic timeframes is important. I never thought I would be able to reach my feet, and that was wrong. These thoughts will go through your mind, but as time passes, you heal, and things change. Adapting to change is important. Having a positive attitude means everything, you enter a new chapter of the book, and adapt slowly.

Gayle is right on returning to work at 3 months. There have been posts of misery here on this subject. Part time, ok, a few hours.....I took off 18 months, but had other problems. (broken shoulder and arm and gall stone problems.)

I will send you a PM...

Ed

[mistybowe]

Good morning and thank you to everyone that responded yesterday. I have my follow-up appointment with my surgeon this Friday so hope to ask many, many more questions. The last time I met with him, he said he would likely fuse L5-L1 and try to not fuse to the sacrum but that it was something we would likely need to do at some point later on.

Ed, I am 42 years young Hearing all of your feedback is making me second guess everything this doctor told me. He came so highly regarded from other surgeons in our medical community that I decided to cancel my follow-up appointment with TCSC. Now I am thinking that was a huge mistake. He was pretty clear that I would recover quickly and could anticipate a 4 day hospital stay and a full three weeks at home before returning to work on a limited or part time schedule, so long as I had a job that was not physical in anyway. What I am after is a realistic timeframe that I can schedule my life around. I was hoping to just get this pesky problem resolved and over with and move on with my life.

I am realizing that I am naïve about what the procedure entails and the more I read the more scared I am about what I am doing. Perhaps its better to just live with the back pain that I have and not take the risk... I don't know. The idea of missing three months of work is frightening. I am on an upward projector at this point in my career and I worry about how this will affect that. I know that in the scheme of things, work should be secondary, but the reality is that it is a major focus at this point in my life.

I'm so confused... so sorry for venting here, I just don't know who else I can talk to.

Misty

[leahdragonfly]

Hi Misty,

I would really urge you to go ask Dr Dick many, many questions about the planned surgery and specifically how he chooses what levels to fuse, what he thinks will happen to your L5/S1 level and pain if that is left unfused, and how the curve and levels above the fusion will fare if left at this point. I would think your L5/S1 disc should be perfect if he plans to leave it. You want to ask what your outcome realistically will be with the shorter fusion.

I'm just a patient, but looking at your X-rays I would have expected a longer fusion, more like at least T10-sacrum. As an example I had a degenerating 47 degree lumbar curve that required fusion T8-sacrum at age 42. I met two other surgeons who wanted to do smaller, 2 level fusions at the time, but upon being pressed for outcomes, they both said I would need the bigger T8-sacrum within a year or two, so I decided to bite the bullet and have it done right the first time. The reason they gave for doing the smaller surgery first was that "I was too young" to be fused to the sacrum.

I know you didn't ask, but please reconsider getting a second opinion from somewhere very qualified like Twin Cities. There's no rush for this surgery, and you need to commit to it fully informed and with eyes wide open about what to expect. Even if you have to cancel your upcoming surgery date, don't worry, this sort of thing happens all the time. It is your body, and you need to be 100% sure you're choosing the right surgeon and the right surgery for you.

[titaniumed]

L1-L5 is not considered a full fusion.....that might explain the 3 weeks.

Multiple opinions have great value, especially when it comes to the spine......(Thought for today) And surgeons need to agree somewhat.

I think that you should talk to one of us here on the phone....Myself, or any postie with a few thousand posts, or Linda Racine.

That, and post and read here to help with decision making.....being informed and having all your ducks in a row.

Hard for me to post during the day at work.

Ed

[LindaRacine]

L1-L5 is not considered a full fusion.....that might explain the 3 weeks.

Multiple opinions have great value, especially when it comes to the spine......(Thought for today) And surgeons need to agree somewhat.

I think that you should talk to one of us here on the phone....Myself, or any postie with a few thousand posts, or Linda Racine.

That, and post and read here to help with decision making.....being informed and having all your ducks in a row.

Hard for me to post during the day at work.

Ed

L1-5 is still not a 3 week recovery. The length of the fusion makes a difference in terms of flexibility after recovery, but recovery from 4 levels isn't really very different from recovery with 14 levels.

Misty, it sounds like you're understanding what people here are telling you. I can't tell you how great that is. So often, people get defensive about their surgeons and assume that what they're told here is BS. It's not. Ed and Gayle, as well as many others, spend a lot of time reading and responding to posts, and their instincts are really good.

I would encourage you to slow down and maybe pursue another opinion to be certain that Dr. Dick is really the right surgeon and that he's selecting the right levels to fuse. It's entirely possible that he's the best surgeon for you, but I have to tell you that most recommendations are based on a doctor's personality and not on their ability.

On the subject of right levels, did Dr. Dick tell you that stopping your fusion at L5 means that there's a high likelihood that you'll need additional surgery to extend your fusion to the sacrum at some point in your future? It's entirely possible that L1-5 is the right thing to do, but I always think it's best that patients understand their risks in terms of complications and the need for additional surgery, so they have the information they need to intelligently decide whether to go for the smaller surgery with the risk of needing additional treatment, or the larger surgery so they're one and done. For the record, I would personally almost always would go for the smaller surgery.

--Linda

[mabeckoff]

I am not as knowledgeable as ZLinda, Ed etc but I have many surgeries. I have to tell you that picking the correct surgeon is so important. I did not do that and will be paying for his mistakes for the rest of my life.

Melissa

[mistybowe]

Thank you to all for the wisdom and information. I have my list of questions and feel prepared for my meeting with the doc on Friday. I am bringing hubby along to be my scribe as well. I am afraid that I will not remember everything that is discussed so I need to have it in writing. I will make a decision on getting another opinion after this appointment, but certainly need lots of answers and some peace of mind regarding the recommended course of action. I will provide a detailed update after my appointment.

~Misty

[titaniumed]

What I am after is a realistic timeframe that I can schedule my life around. I was hoping to just get this pesky problem resolved and over with and move on with my life.

I am realizing that I am naïve about what the procedure entails and the more I read the more scared I am about what I am doing. Perhaps its better to just live with the back pain that I have and not take the risk... I don't know. The idea of missing three months of work is frightening. I am on an upward projector at this point in my career and I worry about how this will affect that. I know that in the scheme of things, work should be secondary, but the reality is that it is a major focus at this point in my life.

I'm so confused... so sorry for venting here, I just don't know who else I can talk to.

Misty

Misty,

Scoliosis surgery doesn’t offer a realistic timeframe.... Its just not black and white. I know, it’s a scary thing, and all of us have been there.....Its nice to think about getting it done and over with, but it just doesn’t happen that easy. In Adults, scoliosis surgery is mainly about pain. The old school thought was about “last ditch effort” which was something that was explained to me by a prior surgeon, they like to leave things be, and do no harm. No doctor wants to do harm. They try anything to avoid surgery. This is actually dictated by insurance companies because surgeries require writing HUGE checks, and they hate that.....All insurance companies make money. (Well almost all of them)

We never asked you about pain. How is your pain? Describe your pain? Have you done shots, have you taken NSAID’s? Prescription NSAID’s not over the counter.....Hot water therapy, massage...etc. Do you have any leg, hip or foot pain? On a 1-10 scale how would you rate your pain? Any burning electrical pain? jolts? flame thrower pain? If you can smell smoke, you know its bad. I am not joking about the flame thrower. (smug face)

All the scoliosis surgeons that I saw used this reserved school of thought, mindful of how the patient is and how well he can handle it. Understanding expectations. Understanding that things can and do go wrong. The actual preparation for scoliosis surgery. It doesn’t happen easily....it takes some time.

If your career is on an upswing, do that now, provided you can handle the pain. Prepare for surgery now, read, post, learn and listen. Go to TCSC and visit and talk to those surgeons. Just because you visit them doesn’t mean you have to schedule surgery. Go and visit a few surgeons, think out a year or two......There is no rush. Take your time.

I canceled a surgery in 2005, I wasn’t ready. All my ducks were not in a row.

And we were all scared.....

Breathe!

Ed

[jackieg412]

Misty go to your appointment with your questions and remember there will be more. Also the members here have a better idea of how long recovery takes. And really recovery is just doing better day by day. No time frame, just a little better. I was told by my surgeons it would be 6 months and I didn't feel good at 6 months. Did that make the surgery a failure. No I was much better at 1 and a half years not 6 months. So realistically it takes a long time.

[Back-out]

Hi Ed...

Yes, there are doctors who still routinely use iliac crest bone graft. It greatly increases fusion rate, so some surgeons feel that it's worth the risk of additional pain.


--Linda

As I return to surgical consults after an out-of-my-control delay, my understanding (at least with surgeons I've asked this time around) is that they no longer do iliac crest grafts but rather graft from the rear of the bone in the pelvic girdle, which reportedly causes less pain and is as useful (Frank Schwab and Lenke/Lehman). Doesn't amount to much of a survey, but they ARE tops anyhow.

[mistybowe]

As I return to surgical consults after an out-of-my-control delay, my understanding (at least with surgeons I've asked this time around) is that they no longer do iliac crest grafts but rather graft from the rear of the bone in the pelvic girdle, which reportedly causes less pain and is as useful (Frank Schwab and Lenke/Lehman). Doesn't amount to much of a survey, but they ARE tops anyhow.

My surgery is August 2nd and my surgeon will be doing the graft from my iliac crest.

[Back-out]

Rereading Linda's comment, I see I misunderstood it. She specifically said that though many surgeons have abandoned that approach, others evidently thought it carried benefits (better fusion, I guess) for their patients. You are one of them, I see.

[bentRN]

I started this thread here on "Surgery - 1st time," and now I will be leaving this thread. I have not been keeping up, because my husband was diagnosed with advanced cancer at the beginning of June. Any future posts I do will likely be on "Non-surgical." I met with the third and final surgeon on my list in my area on 8/5, and he tells me I don't meet criteria for surgery because I am balanced and have no nerve-related pain. My focus will be making sure my husband gets the treatment and care he needs, continuing to be the only support for my mother, and working. I will continue pain management which has helped to some extent. The surgeon tells me I will not be able to care for my family if I have the surgery. I didn't even ask him about work!

Thanks to all of you for you input and encouragement!

[LindaRacine]

I started this thread here on "Surgery - 1st time," and now I will be leaving this thread. I have not been keeping up, because my husband was diagnosed with advanced cancer at the beginning of June. Any future posts I do will likely be on "Non-surgical." I met with the third and final surgeon on my list in my area on 8/5, and he tells me I don't meet criteria for surgery because I am balanced and have no nerve-related pain. My focus will be making sure my husband gets the treatment and care he needs, continuing to be the only support for my mother, and working. I will continue pain management which has helped to some extent. The surgeon tells me I will not be able to care for my family if I have the surgery. I didn't even ask him about work!

Thanks to all of you for you input and encouragement!

You have a lot on your plate! I hope you get an occasional moment to take a little care of yourself.

--Linda

[LisalisaB2017]

BentRN...

It's fairly common for young surgeons to not belong to the SRS at the beginning of their careers. It's relatively expensive for them to join, and I think they often want to wait and see how much deformity surgery they'll be doing.

Find out where your surgeon did his fellowship. There are certain fellowships where the fellows get a lot more practice in adult deformity than others. Though not a complete list, the best training hospitals in terms of adult deformity are probably (in no particular order):

Hospital for Special Surgery (New York)
Washington University (St. Louis)
Leatherman (Kentucky)
Columbia - not necessarily now, but in the near future(New York)
UCSF (San Francisco)
Rothman (Philadelphia)
Emory (Atlanta)
Jefferson (New York)

Essentially every big deformity surgery has two surgeons, although some private surgeons routinely operate with a PA. At UCSF, a major percentage of deformity surgeries are done by co-surgeons that are both attendings.

Hope that helps.

--Linda

Linda , I'm concerned about having " fellows" participate in my surgery . Should I express my concerns . I'm scheduled 99/13/2018 Dr Lehman Columbia Spine . Thanks