What Would You Ask a Surgeon? Also, No Visitors?!

[ErinMK]

Hi everyone

I have so many questions...

Been trying to avoid a fusion for decades but it looks like it's coming at me fast all of a sudden.

I've had scoliosis and some level of back pain since I was 12. No bracing or surgery. Over the last twelve years I've lost 3 inches of height. Currently my lumbar curve is > 70 degrees. I couldn't even tell you where my thoracic is at - mild.

The local ortho referred me to a surgeon at the University of Miami, Dr. Wang, who I've met with... I feel lukewarm. I'm not even sure what I'm looking for here. Surgeons aren't exactly known for being teddy bears.

Right now @ Miami, due to covid, I'd have to be in the hospital alone. No visitors. My husband can't come with me to surgical consults. It's been pretty traumatizing, honestly, to go to the appointments alone.

• How does one even begin to decide on a surgeon?
• What questions would you be asking a potential surgeon?
• Is it valid to want to find a place for surgery where I *can* have a visitor? That's a legit concern, yes?

Thanks everyone for the $0.02. I've been lurking here a long time, and appreciate the collective wisdom.

[Tina_R]

Hi everyone

I have so many questions...

Been trying to avoid a fusion for decades but it looks like it's coming at me fast all of a sudden.

I've had scoliosis and some level of back pain since I was 12. No bracing or surgery. Over the last twelve years I've lost 3 inches of height. Currently my lumbar curve is > 70 degrees. I couldn't even tell you where my thoracic is at - mild.

The local ortho referred me to a surgeon at the University of Miami, Dr. Wang, who I've met with... I feel lukewarm. I'm not even sure what I'm looking for here. Surgeons aren't exactly known for being teddy bears.

Right now @ Miami, due to covid, I'd have to be in the hospital alone. No visitors. My husband can't come with me to surgical consults. It's been pretty traumatizing, honestly, to go to the appointments alone.

• How does one even begin to decide on a surgeon?
• What questions would you be asking a potential surgeon?
• Is it valid to want to find a place for surgery where I *can* have a visitor? That's a legit concern, yes?

Thanks everyone for the $0.02. I've been lurking here a long time, and appreciate the collective wisdom.

Hi, ErinMK.

This must be your surgeon?

https://doctors.umiamihealth.org/pro...un+Wang/525197

There are some very knowledgeable people on here. I don't want to take words out of their mouths, but they always seem keenly interested in where a surgeon was educated, if it was under spine programs in certain universities with special training in deformity -- not all spine surgeons specialize in scoliosis. And they would want to know how many scoliosis surgeries he has done, which might favor somewhat older surgeons.

Why do you think you had lukewarm feelings about this surgeon? A doctor who gave me a referral said it's important to have someone you feel comfortable with.

As for visitors, it is better to have another set of eyes and ears with you on these consults, especially that of a loved one. And I was grateful for visits when I was in the hospital for several days from my surgery. I wonder if it's feasible to wait a little longer for the light at the end of the COVID tunnel. But maybe you shouldn't wait, it depends on your case.

[titaniumed]

Hi Erin, Welcome to the forum!

What would I ask a surgeon on the first date? (smiley face) Not too much, its best to do more listening than talking. Let the surgeon ask the questions. They will do things like a Babinski test, (pen under the foot) and some of the other tests they do. Ask about pain, ask about your scoliosis history etc. Good surgeons will try to avoid any surgeries by offering PT or shots or NSAID's or braces and monitor you for a period of time. They want to make sure all non-surgical options have been tried. They shoot x-rays, full x-rays on scoliosis patients and talk about your x-rays and measure your Cobb angles. You won't understand many of the terms so, its daunting. They usually try to keep things relaxed and easy as they don't want to scare you. I had visits with my surgeon for over 2-1/2 years before I gave the green light.

I think its best that if one knows that surgery is coming down the road, to prepare and become educated. Assume that surgery will come at some point. In the meantime, we have to understand all about different types of pain and why they happen and not freak out. I waited 34 years for mine. Some of us have no choice.

Age is important, how old are you?

How is your pain, Can you describe your pain? Be exact. Any hip or leg of foot pains? Sciatica related pains?

What I have to say usually takes a MOUNTAIN of material. None of this heavy duty scoliosis stuff is easy, but you chip at it one day at a time....Deep breaths!

For Florida members that want a 2nd opinion, my surgeon moved to the Tampa area....

Ed

[LindaRacine]

Hi everyone

I have so many questions...

Been trying to avoid a fusion for decades but it looks like it's coming at me fast all of a sudden.

I've had scoliosis and some level of back pain since I was 12. No bracing or surgery. Over the last twelve years I've lost 3 inches of height. Currently my lumbar curve is > 70 degrees. I couldn't even tell you where my thoracic is at - mild.

The local ortho referred me to a surgeon at the University of Miami, Dr. Wang, who I've met with... I feel lukewarm. I'm not even sure what I'm looking for here. Surgeons aren't exactly known for being teddy bears.

Right now @ Miami, due to covid, I'd have to be in the hospital alone. No visitors. My husband can't come with me to surgical consults. It's been pretty traumatizing, honestly, to go to the appointments alone.

• How does one even begin to decide on a surgeon?
• What questions would you be asking a potential surgeon?
• Is it valid to want to find a place for surgery where I *can* have a visitor? That's a legit concern, yes?

Thanks everyone for the $0.02. I've been lurking here a long time, and appreciate the collective wisdom.

Hi Erin...

Unless you're in a lot of pain, I would urge you to wait awhile to have surgery. While a large lumbar curve can be very painful, it usually isn't considered to a health emergency. With COVID still being such an issue (especially in Miami!), I would do anything I could to stay out of the hospital. For many people, being alone in the hospital can cause a lot of anxiety.

Have you tried physical therapy? It may not keep you from eventually needing surgery, but it's certainly possible that it could buy you some time.

Regards,
Linda

[Scoliatic]

Hi ErinMK,
Surgery can be scary and recovery even more so, as a fellow person with scoliosis and over 30 surgeries at the age of 14 I know how bad they can be. One of them has even gone slightly wrong when I got an infection in my hardware may go into detail in the future. They are almost always fine in the end and have many benefits. Also, they are a great excuse to release your inner couch potato and not do anything. No visitors in the hospital though, that's harsh I advise make sure to keep up human contact and don't fall into scoliosis depression. If you or your husband are vaccinated for Covid you should see if they will let him visit because human contact helps a lot (along with naps) in the hospital. Also, exercise as much as possible before surgery to help with recovery. I have a Scoliosis Blog that I made a month or two ago and I have written about some of my scoliosis adventures on there and they may help (definitely not just trying to get more readers). Anyway I hope that your surgery will go well and that all will be fine.

[ErinMK]

Hi, ErinMK.

This must be your surgeon?

https://doctors.umiamihealth.org/pro...un+Wang/525197

There are some very knowledgeable people on here. I don't want to take words out of their mouths, but they always seem keenly interested in where a surgeon was educated, if it was under spine programs in certain universities with special training in deformity -- not all spine surgeons specialize in scoliosis. And they would want to know how many scoliosis surgeries he has done, which might favor somewhat older surgeons.

Why do you think you had lukewarm feelings about this surgeon? A doctor who gave me a referral said it's important to have someone you feel comfortable with.

As for visitors, it is better to have another set of eyes and ears with you on these consults, especially that of a loved one. And I was grateful for visits when I was in the hospital for several days from my surgery. I wonder if it's feasible to wait a little longer for the light at the end of the COVID tunnel. But maybe you shouldn't wait, it depends on your case.

Yes, that's the surgeon. He seems very capable, but is dismissive or evasive about my main questions/concerns -- e.g. the progression v. the pain (I can deal with pain, where's this progression going and can this wait?) ... specifics about the surgery (I'm in a health field, I want details, I can grasp them), and then being alone in the hospital. Waves that off, "you'll be fine."

It's been very disorienting to go to these appointments alone. I can't fathom going through surgery alone. Visitation restrictions vary depending upon where you go, specific to each hospital right now, but no one knows when they'll loosen, especially in Miami.

Hi Erin, Welcome to the forum!

What would I ask a surgeon on the first date? (smiley face) Not too much, its best to do more listening than talking. Let the surgeon ask the questions. They will do things like a Babinski test, (pen under the foot) and some of the other tests they do. Ask about pain, ask about your scoliosis history etc. Good surgeons will try to avoid any surgeries by offering PT or shots or NSAID's or braces and monitor you for a period of time. They want to make sure all non-surgical options have been tried. They shoot x-rays, full x-rays on scoliosis patients and talk about your x-rays and measure your Cobb angles. You won't understand many of the terms so, its daunting. They usually try to keep things relaxed and easy as they don't want to scare you. I had visits with my surgeon for over 2-1/2 years before I gave the green light.

I think its best that if one knows that surgery is coming down the road, to prepare and become educated. Assume that surgery will come at some point. In the meantime, we have to understand all about different types of pain and why they happen and not freak out. I waited 34 years for mine. Some of us have no choice.

Age is important, how old are you?

How is your pain, Can you describe your pain? Be exact. Any hip or leg of foot pains? Sciatica related pains?

What I have to say usually takes a MOUNTAIN of material. None of this heavy duty scoliosis stuff is easy, but you chip at it one day at a time....Deep breaths!

For Florida members that want a 2nd opinion, my surgeon moved to the Tampa area....

Ed

Yes! A first date with a surgeon. Exactly. This is all new to me, and what on earth am I supposed to ask a surgeon on a first date?! I'm happy to hear you courted your surgeon for years before pulling the trigger. So, I'm not alone in being trigger-shy?

I was surprised when the surgeon did zero hands-on, eyes-on assessment with me. He went strictly off my images. It was odd to me that he didn't ask me many questions about my medical/scoliosis history, or what I've tried to manage it (which is - short answer - everything).

I just turned 40. This fact is noteworthy to the surgeon, who says he typically sees cases such as mine in patients in their 70s. The man seems to be imparting a level of urgency to all this. It's hard for me to wrap my brain around urgency, since this has been a "normal" part of my life -- for decades.

The pain is up and down, I can mostly manage, sometimes I'm in a snarly mood, but I'm fairly active-- got 3 kids, working full time (that's another concern: this surgery is a major time-out).

The progression, and quality of life down the line, concerns me more than the pain does right now.

Let's see - pain specifics - constant lower back ache, on a bad day it's muscular pain all up and down my right side from my ear to my toe. Arthritis everywhere -- knee, hip, spine. I'm stiff. Often. The more I move the better I feel, so I'm active. 10-15K steps a day, core strength, yoga, I try to keep my weight down... it hurts to exercise but I do it anyways. It hurts less if I *don't* do it. Some numbness in my right toes and tingling pins/needles all up my right leg. It's hard for me to rate pain. I'm always in pain. I ignore it. When I had my kids the nurses told me I have a high pain tolerance. Oh really.

My husband's perspective on the pain is slightly different-- he sees it getting progressively worse at a progressively quicker rate, and notes that I'm a real peach to deal with from about 3 PM till I lay down for the night. I grit my teeth and do household chores most days, but lately there's been a big increase in the number of evenings I've spent not cooking, not doing dishes, not exercising, and laying on a heating pad.

And doing surgery now, knowing recovery is easier at a younger age... ? Plus it seems to be progressing fairly acutely...? Twenty+ degrees in 12 years... I was hoping the surgeon would be able to answer those questions but so far, not yet.

The only solid nuggets I've extracted from two consults is that he anticipates fusing T7-pelvis in 4-6 hours with 7-8 day hospital stay and he suspects 3 months off work.

Hi Erin...

Unless you're in a lot of pain, I would urge you to wait awhile to have surgery. While a large lumbar curve can be very painful, it usually isn't considered to a health emergency. With COVID still being such an issue (especially in Miami!), I would do anything I could to stay out of the hospital. For many people, being alone in the hospital can cause a lot of anxiety.

Have you tried physical therapy? It may not keep you from eventually needing surgery, but it's certainly possible that it could buy you some time.

Regards,
Linda

Thank you, I appreciate the thoughts, and, agreed, it is NOT a great time to be in a hospital right now. It feels like a combo of the airport and jail, just to get inside the building. Not that hospitals are ever fun, but it's especially devoid of warm fuzzies now. The staff seems tapped out, understandably...

And yes, I'm beyond anxious about going to any of these appointments alone - and admitting myself into a hospital alone? Shudders. Any appointment that relates to my back causes me an astounding level of anxiety... I have a hard time hearing what the doctor says, and my husband has been participating via FaceTime, but it is NOT the same as having him next to me holding my hand.

I have been in and out of PT for 15 years. I love PT's. They are angels.
I'm in PT at the moment, actually.

And I can definitely ride this ride a little bit longer, if that's a possibility. I want surgery like a hole in the head; I've been running from a fusion for a very long time.

Hi ErinMK,
Surgery can be scary and recovery even more so, as a fellow person with scoliosis and over 30 surgeries at the age of 14 I know how bad they can be. One of them has even gone slightly wrong when I got an infection in my hardware may go into detail in the future. They are almost always fine in the end and have many benefits. Also, they are a great excuse to release your inner couch potato and not do anything. No visitors in the hospital though, that's harsh I advise make sure to keep up human contact and don't fall into scoliosis depression. If you or your husband are vaccinated for Covid you should see if they will let him visit because human contact helps a lot (along with naps) in the hospital. Also, exercise as much as possible before surgery to help with recovery. I have a Scoliosis Blog that I made a month or two ago and I have written about some of my scoliosis adventures on there and they may help (definitely not just trying to get more readers). Anyway I hope that your surgery will go well and that all will be fine.

Lol, release my inner couch potato. I'll remember that.
And, as of now, vaccination status does not impact visitation policies at University of Miami...

[Tina_R]

Yes, that's the surgeon. He seems very capable, but is dismissive or evasive about my main questions/concerns -- e.g. the progression v. the pain (I can deal with pain, where's this progression going and can this wait?) ... specifics about the surgery (I'm in a health field, I want details, I can grasp them), and then being alone in the hospital. Waves that off, "you'll be fine."

It's been very disorienting to go to these appointments alone. I can't fathom going through surgery alone. Visitation restrictions vary depending upon where you go, specific to each hospital right now, but no one knows when they'll loosen, especially in Miami.


I was surprised when the surgeon did zero hands-on, eyes-on assessment with me. He went strictly off my images. It was odd to me that he didn't ask me many questions about my medical/scoliosis history, or what I've tried to manage it (which is - short answer - everything).

I had two surgeries with a less than great outcome and ended up not being on good terms with my surgeon. It was more his behavior than the outcome that is causing problems. You shouldn't go by one person's perspective, but it might be a red flag that yours is too dismissive of your concerns. He might be a control freak, keeping details to himself. My doctor is that way, too, and I had fewer warning signs; he seemed introverted but pleasant at first. Then after surgery I noticed how proprietary with information he was and how he never really made any predictions or gave me much idea of what to expect. He scoffed once when I asked him what my Cobb angles were; I never found out. Better to have someone more open.

Some doctors seem to go by radiology more than hands on but I would feel more comfortable with a physical exam. If he's not interested in your back story, it may be because he doesn't believe other treatments are useful for scoliosis. Some doctors don't even believe there is any benefit to physical therapy. It would be nice if he openly told you how he feels about other treatments.

Since you are in the health field and can go toe to toe with medical professionals you might end up butting heads with this guy or being frustrated by his inability to be as open and sharing of his plans as you would like.

The difficult part is, now what do you do? Would you interview other doctors at the same hospital? I always find this awkward but I guess it's probably OK at this stage. Since no surgery has been done yet it's not like you are criticizing the doctor's technical abilities.

I just turned 40. This fact is noteworthy to the surgeon, who says he typically sees cases such as mine in patients in their 70s. The man seems to be imparting a level of urgency to all this. It's hard for me to wrap my brain around urgency, since this has been a "normal" part of my life -- for decades.

The pain is up and down, I can mostly manage, sometimes I'm in a snarly mood, but I'm fairly active-- got 3 kids, working full time (that's another concern: this surgery is a major time-out).

The progression, and quality of life down the line, concerns me more than the pain does right now.

Let's see - pain specifics - constant lower back ache, on a bad day it's muscular pain all up and down my right side from my ear to my toe. Arthritis everywhere -- knee, hip, spine. I'm stiff. Often. The more I move the better I feel, so I'm active. 10-15K steps a day, core strength, yoga, I try to keep my weight down... it hurts to exercise but I do it anyways. It hurts less if I *don't* do it. Some numbness in my right toes and tingling pins/needles all up my right leg. It's hard for me to rate pain. I'm always in pain. I ignore it. When I had my kids the nurses told me I have a high pain tolerance. Oh really.

My husband's perspective on the pain is slightly different-- he sees it getting progressively worse at a progressively quicker rate, and notes that I'm a real peach to deal with from about 3 PM till I lay down for the night. I grit my teeth and do household chores most days, but lately there's been a big increase in the number of evenings I've spent not cooking, not doing dishes, not exercising, and laying on a heating pad.

And doing surgery now, knowing recovery is easier at a younger age... ? Plus it seems to be progressing fairly acutely...? Twenty+ degrees in 12 years... I was hoping the surgeon would be able to answer those questions but so far, not yet.

The only solid nuggets I've extracted from two consults is that he anticipates fusing T7-pelvis in 4-6 hours with 7-8 day hospital stay and he suspects 3 months off work.

So he thinks your case is severe for your age. That might be true. But you're only 40 and that is still young. It is harder to have surgery later in life. Outcomes are not as good and recovery is slow.

Pain you can put up with longer. I am more worried about the nerve issues in your leg. I had nerve issues and problems walking with my lumbar scoliosis and I am worse after surgery. It could be I was too late. Nerves can undergo permanent damage. It can be important not to delay in some cases.

It's great to have visitors in the hospital, but I'm kind of fearless about COVID in a medical setting. My husband just had two recent in-patient surgeries and he was fine. I'm in doctors' offices all the time and not too worried unless I see the place looks too crowded and chaotic -- all places have different protocol and yours is strict. But if it's really important for you to have your husband involved both as emotional support and for his involvement in the decision-making, you would be more comfortable waiting a little longer. You don't need the anxiety.

[titaniumed]

Erin, Age 40..... You are where I was at 22 years ago....with a 70 lumbar curve. I had a 70/70 "S" curve.....I have to think back now...There are not too many scolis with large lumbar curves.... I think that 70 is about the largest lumbar curve I have ever heard about. If you have x-rays, those are nice to look at.

I didn't have kids, but I did have 52 employees in an Engineering/Manufacturing firm. Was I going to instantly hop on a Jackson table with all of this going on? Nope....it was going to take careful thought on HOW and WHEN I was going to pull all of this off making sure the corporation continued without glitches through long term Govt military contracts. Getting my "ducks in a row" took on a new meaning. All of this happening while being aware and informed of "some" of the medically related complications that can and do happen. These discussions with my surgeon did not exactly go peaches and cream since initially hearing about these things takes time to absorb....."Are you kidding me?" It's not easy being a surgeon having to eventually dish out the tough stuff....

What happens is that many or most scoliosis patients think or worry about paralysis. It's just one thing that can happen, it's extremely rare.... however, worrying about this makes no sense when there are hundreds of things that can happen. It's like worrying about a comet hitting your home. If your going to walk into surgery you can't do this. Do you worry about all of them or none of them? Controlling anxiety is important. Deep breathing helps a lot and it's a good habit to get into.

Tuba is a good instrument for scoliosis surgery patients. The tuba would eliminate the need for the inspirational spirometer! (Scoliosis forum humor) Can you imagine an orthopedic wing with everyone playing tubas? Something like this maybe?
https://www.youtube.com/watch?v=lvfO...=Gentleman1911

(smiley face)

You have to put the horse blinders on, staring straight ahead with the goal ignoring everything else. We turn into zombies when we walk in....there is no attention span whatsoever. My ALIF (Anterior Lumbar Interbody Fusion) was a big one, seriously invasive, addressing the "front" of the spine from L1-Sacrum. Many surgeons now will use XLIF or LLIF, which addresses the front of the spine (from the side, minimally invasive through portals) to make recovery easier. Minimally invasive procedures make recoveries a WHOLE lot easier.... I have had both in different procedures in different surgeries. I had the open ALIF technique used. This is something only a highly experienced surgeon can decide. You can't dictate procedure with the high amounts of training that scoliosis surgeons have. They are some of the highest trained doctors we have....I did a 2 stage procedure spaced 2 days apart.

Ok....now you will hear people say, "Spine surgery, fuse the whole spine, are you crazy?" and you will also hear "Get it done by a professional". Two extreme ends of the decision making process that we all hear at some point....We hear this while battling pain, and our minds whirl with indecision....I knew I needed surgery and every single doctor including my Chiropractors (they are anti surgery) told me I needed surgery at some point. After all those years, there were a few things that happened that tipped the scales. My pain at age 49 was completely out of control. I tried just about everything.

1) Watching the "Surgery Saved My Life' video with Juma Genda. Dr Boachie does this kid "old school" and hard core in Ghana, Africa, and I thought, if he can make it, so can I. The will to succeed seems to be unwavering in kids. It's the attitude we have to have if we are going to make it as adults. We learn so much from our kids. It's a graphic video but I faced it head on. It's on Dr Boachies FOCOS hospital You Tube site.

2) Hearing from a fused scoliosis patient..."Get it done". You have to hear it once....Once is all it takes. It gets absorbed with all the information in the decision making process.

3) After all the complication discussions with my surgeon, and hearing that complications were 100% guaranteed, after all the blood work that was done, my surgeon stated, "You are in good shape, the surgeries will help". "It will help". Thats when I set my dates, and made my commitment. It's the definition of commitment, lifelong. I then told my surgeon, "I can hang, no matter what happens" Complications from scoliosis surgery range from a band aid to death. Both extremely rare.

You made a wise decision by pulling up a chair and sitting around the NSF discussion table. It's been about 15 years for me, I also lurked here a few years before I started posting. We have seen a lot of cases....I also posted as "Rod Stewart" years ago on the British scoliosis forum. Jose Cuervo was taken. Ha ha..... You have to learn to laugh and laugh hard.

Most cases come out good and scoliosis surgery does help the majority of patients. I came out great, but there are things we need to know about having scoliosis. Trading pains in surgery, Bear traps, Planks, Healing, Recovery rates, Walking, Breathing, Eating habits, Digestion, Constipation, Medications, Opoids, Gabapentin, NSAID's, Water therapy, Hot water, Swimming, De-weighting, Physical therapy, Massage, Electrostim,Ultrasound, Bracing, Chiro, Osteopaths, VAXD, Traction, Stretching, Exercises, Scoliosis ball, Cliffs for rotation, and things like our CNS, Spinal cord, Peripheral nerves, and Spinal nerve roots, Infection, Staph,.....and the biggie called Degeneration..... The big D. Try not to worry too much about your curves....In adults, decision making is all about the pain.

I did a LOT of hot soaks and massage through my 40's. Spent $100K over 6 years. And I do miss them.....My Masseuse, Accupressure girl, and Chiropractors did get me out of pain.....temporarily. As we progress with degenerative scoliosis, attempts seem to not last as long. Frequency of PT and alternative visits increases....If you can't get out of pain for more than a day, your ready. In 2007, I could barely make it a day without severe pain. Celebrex and Diclofenac are must's with large curves, you have to get these from your doctor. They reduce pain about 90% and do not affect your mind. I worked on Celebrex for years. Strong prescription non-steroidal anti-inflammatories (NSAID's)...because we sure get inflamed and sore from impingement around the nerve roots in a rotated twisted spine. Lumbar radiculopathy is a tough one, been there, done that.

If you have any x-rays, do throw them up. Do this through the NSF server. The side views are important.

Urgency with adults with scoliosis surgery is not good.....It's not an emergency. Some surgeons are under pressure to produce, so its ok.... It has nothing to do with capabilities as a surgeon.

All your statements are typical and do bring back memories of my pre-fused life. It doesn't sound like you have the heavy neuropathic pains yet....disc herniation's and severe DDD (Degenerative disc disease) can get extremely painful. I would stop bending forward, and lifting things off the floor. Use squatting, keeping your spine vertical. Stay off of ladders and step stools, and NO car accidents. Do not get into a car accident.

It's important to get your ducks in a row, and this takes time. Job, Finances, Insurance, Inner circle, 2nd opinions, time and mind. My surgeon told me a year for recovery, it took 2 years. Double what your surgeon tells you....

Sorry about the long post. If there are any questions at all, do ask. I can be specific.

David Wolpert's book is a good one.
https://www.goodreads.com/book/show/...liosis_Surgery

The Moe handbook 1978 is the old scoliosis surgeons bible. Dr Moe started SRS in 1966 at Twin Cities. If really interested, you can find used copies on Amazon.

I would not set any surgical dates, you need more time. Miami Dade is also a COVID hot spot and I hear that contracting COVID is not pleasant, the headaches are mindblowing.

The SRS site is a good one....
https://www.srs.org/
Surgeon locator
https://www.srs.org/find/disclaimer.php

Ed

[ErinMK]

Thanks everyone for the input.
I appreciate all the helpful thoughts and comments.
It's a lot to take in.
It's overwhelming.

But I'm reassured to know that I'm not the first person to ever think these thoughts.

Here's an interesting spin on the question -- I have another consult with the Miami doc next week and I'm wondering what to (try to) ask next time.

What *can't* a surgeon answer?

I have so many questions, for example, about life post-fusion. Questions about functional outcomes. Quality of life 10, 20 years down the line post-surgery. Needing additional surgeries one day: can that be prevented? --> Am I barking up the wrong tree trying to get that kind of information out of a surgeon?

[Tina_R]

Thanks everyone for the input.

Here's an interesting spin on the question -- I have another consult with the Miami doc next week and I'm wondering what to (try to) ask next time.

What *can't* a surgeon answer?

I have so many questions, for example, about life post-fusion. Questions about functional outcomes. Quality of life 10, 20 years down the line post-surgery. Needing additional surgeries one day: can that be prevented? --> Am I barking up the wrong tree trying to get that kind of information out of a surgeon?

These are great questions that I wish I had asked. I was the most naïve person in the world. I thought the surgery would restore me to near normalcy. Didn't even realize how inflexible my spine would be. I didn't ask much and I can't imagine what answers my surgeon would have provided since he never volunteered much about what to expect. The hospital paperwork only seemed to warn about generic surgical issues, wound infection and addiction to the painkillers they would prescribe.

Everyone else is smarter than I was approaching this surgery, even the young kids. That's a good thing, that patients are wising up. Certainly those are questions you want to ask. There may not be definitive answers given, just probabilities, because surgeons may not know with certainty. For that reason they tend not to volunteer these things. You have to ask.

And if it's possible, you should try to get a second opinion. See if another surgeon agrees that haste is necessary.

[LindaRacine]

Thanks everyone for the input.
I appreciate all the helpful thoughts and comments.
It's a lot to take in.
It's overwhelming.

But I'm reassured to know that I'm not the first person to ever think these thoughts.

Here's an interesting spin on the question -- I have another consult with the Miami doc next week and I'm wondering what to (try to) ask next time.

What *can't* a surgeon answer?

I have so many questions, for example, about life post-fusion. Questions about functional outcomes. Quality of life 10, 20 years down the line post-surgery. Needing additional surgeries one day: can that be prevented? --> Am I barking up the wrong tree trying to get that kind of information out of a surgeon?

Hi...

Those are really great questions. If you have a lot of questions, I would consider asking the surgeon if it's OK to record your conversation. Unless you have an extraordinary brain, I can almost guarantee that you won't remember most of the answers on your own. It's just too much information. There's nothing you can't ask, but you might want to edit the list at some point. Be sure you're asking questions that are important to you. I worked in a spine center for years, and spent a lot of time in exam rooms while patients discussed treatment options. Since appointments are usually scheduled 15-30 minutes apart, surgeons may not have as much time as needed to answer all your questions. They can foist you off on a fellow, resident, PA, etc. Or, they might be willing to answer questions via email. My first surgeon offered to give me the last appointment of the day, so he would have plenty of time to address all my issues. You can also do some of your own research at https://pubmed.ncbi.nlm.nih.gov/

Best of luck with your appointment.

Regards,
Linda

[Tina_R]

You have mentioned pain and lots of people want the surgery for pain. Say I was going for surgery again and one of my goals was to have scoliosis-related pain in a particular part of my body go away. I would ask the surgeon what exactly he thinks is causing that pain in that spot, and request some evidence, radiological or otherwise. And ask what he's going to do surgically to make that pain go away.

I'm a little skeptical of their ability to treat and cure specific pains, to be honest. I think pain can be a mystery. Sometimes fusion surgery introduces new pain.

I'm sure some people here think of me as a negative person, but I'm going by my personal experience. Other people have had different experiences.

And it's a great idea to record an interview with the surgeon, especially when there won't be another set of eyes and ears with you due to COVID restrictions on visitors. I detest those restrictions. I understand in a big, busy hospital they are just trying to keep the density of people down but there should be exceptions made for important surgeries. I recently was not allowed to be accompanied to an appointment even with my unsteady gait - and that is precisely what I was going to see the surgeon about!

[titaniumed]

Erin, I would read David Wolpert's book right away. I linked it on my last post. The NSF book store is closed, order from Amazon. Under the glossary for autograft in the NSF site, the definition is incorrect. This needs to be corrected.
https://www.scoliosis.org/informatio...sary-of-terms/

My discussion topics included....Trying to keep this short.

Which levels to fuse and with which method. T2-Pelvis (ALIF was added through the front along with the posterior procedure).
Allograft, BMP, Synthetics for fusion. Bone cements Etc (Synthetics lower probability of infection) No digging on hip for bone. (I wonder if surgeons still do this these days?)
Cell saver for blood (They recycle your blood on the table)
Blood transfusions (I went off the blood bank) 2 Units
Hardware system (Synthes Pangea system, all titanium)
PEEK spacers
Bending
Running
Skiing (No velocity, no jumping) My wings were clipped.
Complications.....Surgeons will mention, but NOT cover them all. Retroejaculation (in males). Austin Powers would say 'Thank God the plumbing still works" (That was funny) I would discuss female troubles after ALIF.
How many steps into house. I have 2 steps. He asked multiple times
NO treadmills
Walking Outdoors, Not indoors
Clamshell brace (Protective brace after surgery) had to do a fitting with an Orthoist
Did recovery alone, needed CNA for first 5-6 weeks. You cannot drive on meds.
Diet, No pasta, no bread Had to lose weight
ICU discussions dealing with pain. Ketamine Opoids ICU for several days.
(I was NPO which means no food by mouth and had a 9 day Ileus. Guts stop, Had a NG tube.)
Edema happens, my feet were the size of footballs.
Drains Hemovac
Recovery time (1 year) it took 2
Wiping butt. Toiletry discussions.
Will there be another Doctor operating? I had 2 scoliosis surgeons and a vascular surgeon. Also Rehab? How long?

We had no discussions about weaning off meds. (It can be an extremely difficult painful process)
I started with Oxycodone, then Percoset (Percoset is Oxycodone with Tyelenol) They have 2.5, 5, 7.5, 10mg

Establishing communication with Assistant by e-mail for short questions. (VERY IMPORTANT)

I think that's it. Probably forgetting things as it's been awhile

It's perfectly ok NOT TO MAKE A DECISION.....I had them put my surgeries on the back burner due to me not being ready.
Do not set a date. You can do this at any time. If you set a date and want to cancel, give them 30 days as there can be a lot of planning.

If there are any questions, do ask

BTW, How old are your kids? You will need their help.

Ed

[Tina_R]

Do ask about the physical limitations you will have after the surgery. It pays to find out what they can be and ask specific questions: "Will I be able to tie my shoes, clip my toenails, put on socks without a device, pick up things off the floor easily?"

I'm not implying you will have these limitations. I do, but almost my entire back is fused. You are not going to be fused as much as I am. But mention them and see what the surgeon says.

[LindaRacine]

Erin, I would read David Wolpert's book right away. I linked it on my last post. The NSF book store is closed, order from Amazon. Under the glossary for autograft in the NSF site, the definition is incorrect. This needs to be corrected.
https://www.scoliosis.org/informatio...sary-of-terms/

My discussion topics included....Trying to keep this short.

Which levels to fuse and with which method. T2-Pelvis (ALIF was added through the front along with the posterior procedure).
Allograft, BMP, Synthetics for fusion. Bone cements Etc (Synthetics lower probability of infection) No digging on hip for bone. (I wonder if surgeons still do this these days?)
Cell saver for blood (They recycle your blood on the table)
Blood transfusions (I went off the blood bank) 2 Units
Hardware system (Synthes Pangea system, all titanium)
PEEK spacers
Bending
Running
Skiing (No velocity, no jumping) My wings were clipped.
Complications.....Surgeons will mention, but NOT cover them all. Retroejaculation (in males). Austin Powers would say 'Thank God the plumbing still works" (That was funny) I would discuss female troubles after ALIF.
How many steps into house. I have 2 steps. He asked multiple times
NO treadmills
Walking Outdoors, Not indoors
Clamshell brace (Protective brace after surgery) had to do a fitting with an Orthoist
Did recovery alone, needed CNA for first 5-6 weeks. You cannot drive on meds.
Diet, No pasta, no bread Had to lose weight
ICU discussions dealing with pain. Ketamine Opoids ICU for several days.
(I was NPO which means no food by mouth and had a 9 day Ileus. Guts stop, Had a NG tube.)
Edema happens, my feet were the size of footballs.
Drains Hemovac
Recovery time (1 year) it took 2
Wiping butt. Toiletry discussions.
Will there be another Doctor operating? I had 2 scoliosis surgeons and a vascular surgeon. Also Rehab? How long?

We had no discussions about weaning off meds. (It can be an extremely difficult painful process)
I started with Oxycodone, then Percoset (Percoset is Oxycodone with Tyelenol) They have 2.5, 5, 7.5, 10mg

Establishing communication with Assistant by e-mail for short questions. (VERY IMPORTANT)

I think that's it. Probably forgetting things as it's been awhile

It's perfectly ok NOT TO MAKE A DECISION.....I had them put my surgeries on the back burner due to me not being ready.
Do not set a date. You can do this at any time. If you set a date and want to cancel, give them 30 days as there can be a lot of planning.

If there are any questions, do ask

BTW, How old are your kids? You will need their help.

Ed

Ed...

I totally disagree with many of your questions. What are you going to do with all the information about the products that your surgeon uses, or the procedures they think are best for your case? As patients, we cannot possibly know what constitutes good or bad selections. Not even me. Even if you find that two opinions are entirely different. How are you ever going to know what is right IN YOUR OWN CASE? Instead of asking questions like that, spend your time listening to your caretakers, asking questions about what to expect for your surgery and recovery, and then use that information to make your decision.

To me, the top factors that probably makes a difference between a good outcome and a bad outcome, is where the surgeon was trained and what you hear/read from previous patients. Find someone who did a complex spine fellowship and read as many reviews as possible. (When reading reviews, look for those that talk about good and bad outcomes.
Ignore the ones that complain about things like having to wait 3 hours to be seen, what mood someone was in, etc. Those things are unimportant in the long run.)

--Linda