Scoliosis Surgeon Recommendations (Raleigh, NYC, East Coast?)

[cgcannon]

Hello,

I had scoliosis surgery back in 1989, fused ~T3 - L2 at the age of 9 yrs old. Did well for about 30 years, now at 41 noticed some shifts in my alignment and body that was startling, now causing mechanical issues, slight gait when walking, and limiting my exercise abilities. Saw a Dr. in NYC at the Och Spine Institute, NYP, recommended PT/Schroth, tried for 3 months and only noticed short-term resolution. The Dr. now recommends surgery down to sacrum, up the T2 to stabilize the spine, and provide better cosmetic results -- should also resolve my mechanical issues by solving my coronal imbalance.

I want to seek second opinions. Tried to contact Och to see Dr. Lenke, but bc I already saw a Dr. at Oct Spine, they wouldn't let me see him - they claimed a conflict of interest. Any one else run into this problem? Saw Dr. Hey in Raleigh, and while I was impressed with his personality and caring demeanor, he wanted me to try his PT first.

Are there any other great surgeons to recommend on east coast? I live in NYC, but have strong family connections in the Raleigh-Durham area so those two locations are preferred. But would consider anywhere in between. Any advice would be super-helpful and appreciated. Thank you.

[titaniumed]

Frank Schwab at HSS
https://www.hss.edu/physicians_schwab-frank.asp

Baron Lonner
https://www.mountsinai.org/profiles/baron-s-lonner

Long time no see...What happened to your blog?

Ed

[cgcannon]

Hi Ed,

Good to hear from you! What happened to my blog? Haha, life happened...haven't been to it in many years -- since that time, school, career transfers, now back to my scoliosis. I'm likely considering surgery in the next couple of years. I appreciate the recommendations, will look into them. I see Dr. Menmuir did your surgery 10 years ago? How was your experience with him and his team? I noticed he's in FL now. Your results, and pictures are fantastic. It's encouraging to see that you have such a lot of ability to bend at waist, and right and left sides, I think that's my biggest worry, is how much of this will be compromised with a fusion down to the pelvis.

[titaniumed]

Dr Menmuir is an excellent doctor....

Glad my photos helped

Mobility in the spine is highest in the lumbar levels, each level about 25 degrees plus. Depends on which direction. With 3 unfused levels below your fusion, you should be able to bend over and touch your shoes. When I bend forward and hang my arms, my finger tips reach to about 6 inches from the floor. Some full fusion patients cannot get to 6" off the floor so I am probably a best case scenario when it comes to mobility fused to the Pelvis. I don't know if my strong history of "stretching" for skiing and scoliosis has anything to do with this.

Reaching your feet is possible but not easy. I trim my toenails by setting one foot up on my desk, and leaning into it with "the long reach". They do have long toenail clippers online, one of these days I will probably buy one. They kind of look like a tree trimming device without the chainsaw attachment. (scoliosis forum humor) I have a lot of big trees here so have looked into tree trimming tools.

If I cross my legs, I cannot reach my feet.

Wiping the derriere also requires "the long reach". Thank God I have long arms. ha ha If not they have wiping tools.

Sitting on the floor can be done, but it's not easy. Modern furniture like a lazy boy or couch, I last about 10 minutes. If it has the power adjustment attachment, add 2 minutes. I find myself moving the position often and can barely sit there and watch a movie. For me, it's a quality office chair, or bed. (or standing) I still have to move often from my desk, about every 15 minutes I do a little walk. On airplanes, I take 2 soft pillows in a carryon, and I am constantly moving adjusting position.

I am up to T2 so that makes looking down a challenge. I always pre-thread belts on pants before I put them on. I cannot put a ski lift ticket on my beltloop on my waist because I cannot see. I could do it blind but that would take me 5-10 minutes and certainly do not want to lose an expensive lift ticket. These days if you want to ski for a day, you have to get a 2nd on your mortgage.

If you drop a pen on the floor in your car, forget it. That reach is pretty much impossible. Carry multiple pens. From the standing position, in order to reach the floor I do a squat. (but I can bend over forward with bent knees)

I am sure I am forgetting things....perhaps some other full fusion members will chime in.

It would be a good idea to read Curygirl's thread, it's the other thread running right now. Its fusion extension month around here. I have a feeling more will be joining in the future.....

Did they fuse you at age 9? No growing rods? Where was this done?

How is the pain? Its all about the pain. Any sciatica?

Ed

[cgcannon]

Hi Ed,

Thanks, your description of your mobility is super-helpful. Yes, I had my surgery at the age of 9, in 1989. No growing rods, it was one and done. I remember the surgery like it was yesterday, it was no walk in the park, had two surgeries, one anterior and one posterior. Was in the hospital for 3 weeks. The surgery was done at Duke. Because most of my lumbar spine was preserved, I maintained the flexibility and my growth. However, now I have a big issue with coronal imbalance, that's where your body starts to shift to one side, caused by an increase in the lumbar spinal curvature to mainly one side, while the top, fused section stays stationary. It's becoming quite uncomfortable. Imagine going for a walk, or jog, or swim, and consistently having gravity pull you to one side. Fortunately, the pain is not so bad, it's tolerable, dull, and localized in my hip area that sticks out more than the other. I have one doctor so far who agrees to do the surgery, but the surgery feels aggressive to me, have T2-S1 fused. So before I go that route, I'd rather have 1 or 2 additional surgical consultations. PT hasn't seemed to help much.

-Chris

[titaniumed]

Hi Ed,

Thanks, your description of your mobility is super-helpful. Yes, I had my surgery at the age of 9, in 1989. No growing rods, it was one and done. I remember the surgery like it was yesterday, it was no walk in the park, had two surgeries, one anterior and one posterior. Was in the hospital for 3 weeks. The surgery was done at Duke. Because most of my lumbar spine was preserved, I maintained the flexibility and my growth. However, now I have a big issue with coronal imbalance, that's where your body starts to shift to one side, caused by an increase in the lumbar spinal curvature to mainly one side, while the top, fused section stays stationary. It's becoming quite uncomfortable. Imagine going for a walk, or jog, or swim, and consistently having gravity pull you to one side. Fortunately, the pain is not so bad, it's tolerable, dull, and localized in my hip area that sticks out more than the other. I have one doctor so far who agrees to do the surgery, but the surgery feels aggressive to me, have T2-S1 fused. So before I go that route, I'd rather have 1 or 2 additional surgical consultations. PT hasn't seemed to help much.

-Chris

Chris, Being an S curve patient, S curve patients usually do not have the sagittal plane problems.... A lot of us also balance out in the coronal plane so my plumb has always been pretty good... We have a flatback poster who was leaning forward and month ago after I visited her, I did purposely lean forward a few inches and walked like that and it was really tiring.....I totally understand the situation you are in.

I see you had an anterior or an open thoracotomy. Scar below the armpit. That's a serious procedure, I can see why you spent 3 weeks in the hospital at age 9. Your not leaning forward at all, are you? Just to the side now?

The surgeon that offered the T2-Pelvis revision, did he say he was going to remove your existing hardware? "Or" do an extension below the existing fusion?

We have a female member here around Age 32 who was extended to the Pelvis last July that turned out pretty good.....She reported at Christmas and I am so glad she did....It was the post of the year.... JScoli91. A couple of LLIF's and she was ALIF'd on the lowest two levels. Richland, Washington. You might want to glance at her threads. The thread below is one of Gingers threads that she posted on....

https://www.scoliosis.org/forum/show...light=jscoli91

Do you live in NYC? I grew up in Northern NJ, and spent a lot of time in the city. I was 5 miles away. I moved out west in 1980 for skiing. I ended up in Reno as I used to live up at Lake Tahoe. Tahoe and Donner summit get serious snowfalls....

If you have any x-rays, do throw them up...Use the NSF system that way they stay on that server.

Always get copies of diagnostics burned to disc from the radiology dept. I had a surgeon retire on me many years ago and those records got thrown out. When you have serious scoliosis, you want your records. New surgeons want to see these things....I have quite a collection myself.

Ed

[cgcannon]

Hey Ed,

Thanks for your response. So the first surgical consultation I received from a surgeon in NYC was to remove the current hardware, fuse down to the pelvis, then fuse above the current fusion to T2. That should straighten me up, correct the coronal imbalance, reduce the rib hump substantially, and hopefully correct me for life. So now I want to seek some additional opinions to get a read.

You're right about getting CDs of films burned, I've learned that now. I certainly don't want more x-rays then I already have haha. It just so happens, I recall getting a film done back in 2005 at hospital when I was researching a thorocoplasty. I sent an authorization form in, and received the film today. So that's a valuable 16 years comparison. I sent it off to my surgeon today -- waiting to hear back. To me, it doesn't look like much of a progression. But my body can feel it, tell it, hard to say what's moving around in there -- or if it's just issue, muscles weakening over time on the concave side? Just not sure. For me, it was like a switch. One day I'm exercising, feeling good, then the next I noticed a significant shift in my body while I was going for a jog. Then my shirt started fitting me differently. It seems to have happened all at once.

Yes, I live in NYC -- lived there for last 10 years, less a 1 year stint in San Francisco for work. I'm in Raleigh at the moment. Stayed here visiting family for the holidays, then with the covid spread, stayed here since. Going back to NYC in early June however.

recent x-ray film are attached. oh, also a pacemaker there from an unrelated heart condition. However, I don't suspect I'll be denied cardiac clearance for surgery -- I've had other surgeries in the past with no issue.

[titaniumed]

Chris, That's an interesting x-ray.....When was this shot? In the last 3 months?

It looks like you had an involved procedure done in your lower thoracic when you were 9. Did you have a T11 or T12 hemi? I can't count the levels in your thoracic above L1. It almost looks like your rods moved especially the left side. ???

Do you have anything at all, any records or hospital reports from Duke (Or your original surgeon) from the original surgery? I suppose you could contact admin or the records dept there to see if they have any records at all, anything. 30 years is a long time, but it's worth a shot. Is he still alive?, because he will remember you. Dr Bradford remembered Brad, (Quikdraw) an old poster here from about 30 years which was great. That post is here on this forum.....

There are just a very small handful of thoracoplasty folks here as the modern spinal systems of the last 20 years that use pedicle screws correct rotation in the spine, and reduce rib and lumbar humps. They seem to be more common in England. Thoracoplasty is called costoplasty on that side of the pond. How big is your rib hump? Do you have a photo?

Look below and check out my x-ray from 1993. Age 35. (Before fusion) See how our lumbar levels are tilted at almost the same angle? Our iliac crest heights are also similar. Look at my coronal in my signature. Throw both of them up together on your computer screen for a side by side comparison.

If you see Frank Schwab at HSS, chances are he is going to say the same thing. T2-Pelvis. With "anterior" lumbar procedures. ALIF, XLIF or LLIF or OLIF. Multiple staged procedures.

I asked my surgeon about lowering the top and not going so high up to T2, and he said no way. I know know why this is done because the upper thoracic spine has to be done in a lot cases. T2 is the base of the neck. Your pitched over at T2-T4 about 20 degrees. They do "directional" osteotomies for scoliosis....Dr Berven does these at UCSF. I don't know if they will want to do these as I am not a scoliosis surgeon, let alone a scoliosis revision surgeon. You going to need someone who does revision surgeries....

Tough posts. Pain will make your decision and its good that you are preparing. I would stop the jogging and NO lifting.

Ed

[titaniumed]

My attached x-ray is a smaller file.....your going to have to blow it up in a photo viewer program

Copy, paste and reopen and windows will select for you

Ed

[titaniumed]

My 1993 x-ray was shot by a Chiropractor. They like to shoot them from the back.

My x-rays in my signature were shot by my surgeon. The coronal in my signature was shot from the front.

When you compare my before and after x-rays, you have to flip them in your mind.

I have one screw missing at T7. They did not have a clear trajectory from the wedging.

Ed

[cgcannon]

Hi Ed,

Thanks for all the info. Yes, just trying to prepare for what seems to be inevitable, eventually. It's almost like the 5 stages of grief, it takes a while to get to acceptance, so better to start that process now, to acceptance of the surgery. I find it to be therapeutic to seek out consultations, it feels as if I'm putting myself in control of the scoliosis - not the other way around. And gathering as much information as I can, because the more I know what to expect, the more prepared and empowered I will be. It's funny, it's not so much the pain or the operation itself that scares me, it's all the tubes. Just seems so uncomfortable to have all those tubes sticking out of your body, and there can be discomfort with removing them haha. The drainage tube, the foley catheter, yuck! That's the most displeasing part about all of it to me -- not pleasant.

[titaniumed]

Hi Ed,

Thanks for all the info. Yes, just trying to prepare for what seems to be inevitable, eventually. It's almost like the 5 stages of grief, it takes a while to get to acceptance, so better to start that process now, to acceptance of the surgery. I find it to be therapeutic to seek out consultations, it feels as if I'm putting myself in control of the scoliosis - not the other way around. And gathering as much information as I can, because the more I know what to expect, the more prepared and empowered I will be. It's funny, it's not so much the pain or the operation itself that scares me, it's all the tubes. Just seems so uncomfortable to have all those tubes sticking out of your body, and there can be discomfort with removing them haha. The drainage tube, the foley catheter, yuck! That's the most displeasing part about all of it to me -- not pleasant.

Exactly....Good attitude....get your ducks in a row.

The Discovery Channel "Surgery saved My Life" (2006) program years ago with Juma Genda/Dr Boachie was something I needed to watch. Juma was in a bad situation and Dr Boachie does his surgery in Ghana. I watched it probably 10 times before my surgeries. Videos of hope. warning, its graphic.
https://www.youtube.com/watch?v=uwu8...=FOCOSHospital

The John Sarcona/Dr Lenke video is also a good one...
https://www.youtube.com/watch?v=gkfF...terianHospital

I also had a lot of tubes and hemovac drains....many times I would roll over and I would be laying on a drain which felt like I was laying on a coffee cup. And moving or log rolling is not the easiest thing. My right arm and shoulder were also recently broken from a ski crash to add to it. I was NPO (no food by mouth) from an ileus so had an NG tube which made my Adams apple raw. All the drains came out easy however when my Foley was removed, that one hurt.

At 4 months post, I was sitting here and realized I was completely out of pain after all the years.... I couldn't believe it. It didn't last since it was a long see-saw recovery with good days and bad days, but a really good sign.....

Ed