Increasing curve but no pain – do they do revision for this?

[titaniumed]

I would definitely like to get a second opinion on this or maybe a third, but the options in AZ are limited.

Irene, Dr Uribe is in Phoenix now.... I would have a talk with him....

https://www.barrowneuro.org/person/juan-uribe-md/

Ed

[curlygirl]

Dr. Uribe

Thanks! He looks good, lots of papers to his name. I still haven't gotten used to the idea of neurosurgeons doing this work but maybe I'm just old-fashioned.

[jackieg412]

Both orthopedic and neurosurgeons treat scoliosis. I think they are crossed trained. So either one with a good medical center is a good choice. I live near Chicago so there are many choices.

[Tina_R]

Nope. I think there are some instruments that might be an issue, but probably only if they're played for many hours a day, but I can't imagine that guitars would be a problem. Play on!

I'm just wondering what instruments might be a problem if not the guitar. A guitar can be rather weighty and is held asymmetrically across the body and might apply unequal forces on each side. Sounds like the kind of thing that could either help or worsen scoliosis if exercise can do anything.

Double bass is probably worse. Double bass players often stand with terrible posture and lean to one side. into their instrument.

[curlygirl]

I'm just wondering what instruments might be a problem if not the guitar. A guitar can be rather weighty and is held asymmetrically across the body and might apply unequal forces on each side. Sounds like the kind of thing that could either help or worsen scoliosis if exercise can do anything.

Double bass is probably worse. Double bass players often stand with terrible posture and lean to one side. into their instrument.

Hi Tina - I've been wondering about this but my ortho didn't think it was a problem. I also had my husband snap random pictures of me playing so that I could show them to my PT from my phone and she thought it looked OK, too. I'm not doing rock guitar where you see people bending over their instruments. I have a 3/4 sized guitar (I'm petite so it's a better size for me) and I'm doing classical guitar, where you sit low on a stool and look up, but over to the left to see the fretboard and the music stand. In the pictures I'm sitting straight up. I also have a device called an ergoplay (common in classical guitar) that sits on the bottom of the guitar so the bulk of the weight is on the left thigh. Despite all this, in the back of my mind I still wonder if it's really, really OK. I take frequent breaks when I practice. If it turns out I have to give it up it's not the end of the world as I also play piano. This is just an interest that I developed and took on as a "plague project" during covid.

[curlygirl]

An update on my situation

I finally have an update after taking the time to do a couple of consults. I saw Dr. Uribe at Barrow and he said to not do anything as my muscles are used to being where they are and my body is oriented a certain way. It was disconcerting to get such radically different opinions from Dr. Stevens and Dr. Uribe as they are both highly qualified. So I decided to go for the big guns and I went virtually to Columbia Univ in NYC. Dr. Lehman there looks awesome and I saw him virtually yesterday. In order to do so I had to first see his PA, get a CT scan and an EOS (specialized x-ray) locally and upload them, along with my MRI and other films.

Dr. Lehman is in complete agreement with Dr. Stevens. His perception of Dr. Uribe is that he's wonderful but does more minimally invasive. He sees where the degeneration below my fusion is causing more deformity and he sees where my leg pain is coming from. He says it's just going to get worse unless they intervene. I'll continue to have more pain and continue to collapse inward. He wasn't selling anything or sugar coating. He was very thorough/matter of fact with me and suggested a number of options, ranging from the aggressive (3 column osteotomy that he didn't really recommend - yikes, no thanks!) to repairing the area below the fusion that's giving me pain and more deformity. He thinks he can repair that area and also give me more space between my ribs and hip - which are currently practically touching on one side - with a kickstand rod technique. He thinks he can also *maybe* tweak the bottom of my fusion a bit to give me more correction, but he wouldn't know until he gets in there and plus, he has to see me in person. I was extremely impressed with his knowledge. Also, he might not have to go in from the front as Dr. Stevens would, but he'd know after seeing me. His notes (sent in my portal) mention possible TLIF or OLIF, but right now these terms are above my grade level.

So as much as I'd like to avoid surgery at age 67, if two good orthos say I need to do this, I have to plan for it. As far as deciding, Stevens is local so more convenient and has a good reputation. What I'm not keen on is that he operates at an ortho-specific hospital (what resources are there in case of the unexpected??) and the neuromonitoring is remote and the neurologist is watching about 4 surgeries all at once. He definitely does anterior only for a first surgery, lets you rest two days, and then does posterior work. He does have a cardiothoracic surgeon for the anterior work. I'd have to travel to NYC for Lehman, but Columbia seems to have about the best set-up in the world and you get your own neurologist, plus Lehman seems to have a few more options to offer, pending seeing me. My husband and I are fully vaxxed and have spent nothing on travel because of Covid, so we are OK with the travel and flying if it means a potentially better outcome.

I'd love any feedback, suggestions or questions to ask. I'm supposed to see Dr. Stevens next week but if I decide to go to Lehman, wouldn't that meeting with Stevens be awkward? However, if I go with Lehman I'd need to work with Stevens for local followups and coordination. I really like him and want to maintain an excellent working relationship, whichever way I go.

Thanks,
Irene

PS - screen shot of the EOS xray attached.

[titaniumed]

Irene, How bad is the pain? Can you describe it? Describing pain needs to be exact, symptoms need to match and correlate. There has to be a relationship that the doctors can see....

Neuropathic pain in the lumbar can produce extreme pains. For example, at times before my surgeries it felt like a horse kicked me in the hip (greater trochanter) 1" circle, and on my ankle, exactly where the tongue of a sneaker would touch, burning like a flame. Seriously, I thought I smelled smoke...Pains would come and go depending on what I would do and did this battle for around 6 years leading up to my surgeries. It helped make my decision as I waited about 33 years for my surgeries. I was a Luque candidate in 1975 and was one of those that skipped surgery in the 70's.

I would not have had surgery "if" the pain wasn't so bad....Without surgery, I would still be doing the same things I was doing with minimal or less success. It was a downhill slide as I aged, there is no doubt about that. Degeneration ran rampant. I went downhill at the end, it was a steep drop off in the last few months and patients will know when this happens. Everything became extremely inflamed.....It's called radiculopathy. (sciatica)
https://www.hopkinsmedicine.org/heal...and%20tingling.

Perhaps Dr Uribe doesn't think your pain is bad enough? Or, is it the possible complications he is worried about?

You see, we have to be aware of what can happen after our surgeries. I had a 100% guarantee that something would go wrong. The question was, what was it going to be? My pain was so bad, I had to take that chance. I waited until the end, couldn't hang in there anymore. Alternatives can only work to a point, if nerve roots are pinched or discs are herniated and protruding on the spinal cord, this is a tough battle. Stenosis or narrowing from bone spurs, bone overgrowth can only be corrected by surgery. (Bone spurs are proof that we remodel as adults).

You can look at orthopedic complication lists and think, "Really, is THAT going to happen to me?", a small percentage, rare complications, but like Linda has stated to me many years ago that stuck, "Complications only matter, when they happen to you". There have been a few complicated cases here on this forum over the years....I lost my gall bladder, and a rare scoliosis complication. How did that happen? How can that happen? Why do these things happen? Sometimes thare are answers and sometimes the answers are not known.

You have not mentioned ALIF. (Anterior Lumbar Interbody Fusion) I would ask about the L5-S1 level which is done by ALIF from the front before the posterior, and also ask about the Pelvic anchors. You don't see full fusions without the pelvic anchors these days....Those are the big screws that wing off at the very bottom. You can see mine in my x-rays. They are 8mm anchors which is large. .314 dia. or a tad larger than 5/16". They do ALIF for L4-L5, and L5-S1. The 2 lowest levels.

Will they use BMP? Bone Morphogenic Protein. (Medtronics Infuse Kits) They use this product to help with the fusion process. We make our own BMP's, but some of us need more...It acts as a catalyst in growing bone. I had BMP used on all my lumbar levels. It's inserted in the spacer or cage which is installed from the front. It is FDA approved for ALIF and an on label procedure. There are "On label" and "Off label" procedures. My surgeries were on label. Infuse kits are EXPENSIVE. They also limit infection transfer from allograft's. Infection and osteoporosis would be things I would worry about. This needs to be addressed. Staph and P-Acnes. Its everywhere.....

There are open procedures and minimally invasive procedures. They have full open, mini open, and laparoscopic procedures that are done through trochars or tubes. These minimally invasive procedures make recovery MUCH easier, I have had both full open and minimally invasive procedures done on me and there is a huge difference.

All methods below address the front of the spine for the insertion of spacers after discectomy. The front of the spine can be reached from the front, or the side.

ALIF is open from the front
XLIF, LLIF, OLIF are minimally invasive from the side
TLIF and PLIF address the front of the spine (From the back)

Ed

[curlygirl]

Hi Ed,

This is a lot of great info, some of which I had to google. Yes, the pain has gotten quite bad, especially in the lower leg. It starts out horrible in the morning and eventually abates somewhat, and then changes with activity. Any simple forward movement, like brushing my teeth or washing a dish exacerbates it and then it goes on for about an hour and abates somewhat again. I’ve had to move things around in my kitchen to minimize the number of times I have to bend to get something. The formal diagnosis on my lumbar MRI is lumbar radiculitis with moderate stenosis, plus there is the disc degeneration below the fusion and the disc pulling out of place which has been making me curve inward. I really have been very lucky to have had no pain all these years but it seems that luck has run out. I don’t know if it’s weird that I have no back pain and that it’s all concentrated in one leg.

I’ve just done 3 months of PT (both hands-on and exercises) at a spine-focused PT center and it’s done nothing to alleviate the pain. I’m continuing to do the exercises at home, because doing core strengthening exercises is probably a good idea. I’m also trying to keep the even worse pain that I had in my upper leg/buttock area from coming back – the epidural shot I had a couple months back helped a lot with that, but that pain was such that I could barely move, especially to get out of bed in the morning. All the docs agreed that the epidural is a temporary fix and I’d have to keep getting them. Uribe said I should just keep getting them forever and the others said it was a band-aid that would eventually stop helping me. At that point I could be stuck with no options due to age/bone density. Because of osteoporosis, epidurals forever aren’t a good idea. My bone density improved a ton when I took Forteo for 2 years and the osteoporosis is currently in an OK range that an ortho can work with it. The plan would be for me to take another bone-building drug called Evenity if I do the surgery – staring a few months before, then a 1-2 month holiday for surgery, then back on it. It’s a one year course of treatment.

I don’t think that two good orthos would suggest a surgery if they didn’t think they could relieve the pain and give me a better quality of life. I’ve been through this in the dark ages (1976) and certainly know firsthand that it’s no picnic. It seems that Dr. Stevens would do ALIF and Dr. Lehman might consider different options after meeting me in person. His notes say “potentially from the lower lumbar spine to the pelvis with decompression TLIF versus OLIF input and posterior spinal fusion.” So these are just some initial ideas. I’m not exactly sure what decompression TLIF is and what these considerations are, but it seems possible that these are less invasive techniques that would mitigate the chances of complications somewhat?

Irene

[titaniumed]

I don’t think that two good orthos would suggest a surgery if they didn’t think they could relieve the pain and give me a better quality of life.

This is correct, they won't offer surgery if they don't think it will be an improvement. However, Dr U is saying no for a reason....(I had no idea) and it deserves some thought. Why do surgeons of equal experience and training say yes, or no? Is it because of the unknown or what they do know? Sometimes there are no answers. Not everyone fuses....and this happens in kids let alone seniors....We have seen this here on this forum.

And my surgeon also rejected me at the end...."too dangerous" he told me. Complications were 100% guaranteed. I think that he said that because of me, my attitude, handling some of the complications that can happen are not easy to deal with.... I was thinking "Are you kidding me?" while I was in major pain standing there in the office....It only became crystal clear that this was going to be all about me, my positive attitude doing a really tough recovery and accepting what could happen. Blindness, Death, Paralysis, Infection, Pseudarthrosis, Pain, not being able to reach my sassafrass, not being able to reach my feet...etc etc. My skiing was also an issue. I started skiing in 1962.....None of the above complications happened to me....

It's never an easy decision.

Who did your surgery in 1976 and where?

Ed

[curlygirl]

My original surgery was with Dr. Ronald DeWald in Chicago. We traveled to see him. He was one of the top people in the country at that time and somehow my parents found him in the pre-Internet days. I believe he was one of the first to have you wear a body cast rather than lie in bed for a year. Not being able to take a shower for 7 months was not fun but at least I could be up and about. I didn't have any complications - I wonder if there was even any neuromonitoring back then.

[jackieg412]

Hi Irene, are you still.near Chicago? There is a Dr. DeWalt at Rush in Chicago. I do not think it is the same first name though. He is an orthopedic scoliosis surgeon.
Ed is a wealth of knowledge. He is right that something will go wrong and I believe the surgeons watch the patient's s reaction to the list of possibilities.
Blindness seems like a strange one but on my last surgery the pupil of my left eye did not recover as quickly as the right. It did eventually though.
After a long list of complications, my surgeon said he has a few patients fused c-4 to the pelvis and that I had done better than any of the others. It took both of us. I also think that because I live alone and need to do everything on my own that it pushes you forward. Just my thoughts.

[curlygirl]

Hi Jackie - I'm out in Phoenix. Christopher DeWald in Chicago is the son of Ronald DeWald and took over the practice when his father retired. I used to live in Chicago just coincidentally for years after my surgery, but at the time of my surgery traveled there from AZ. In the 80s I went to that practice for occasional followups and both father and son were there.

[curlygirl]

Based on comments, here are some of my questions: What is the incidence of horrible life-altering complications like paralysis? I don't understand how you could get blindness - can anyone explain that? And what's the incidence of really bad things versus lesser complications, not to be sugar coated, that can be managed or treated so that patient returns to a good or better quality of life? I definitely do have some fears about doing surgery (and you guys are doing a good job of scaring me) but I have equal concern about not doing it - having more pain, having epidurals that wear off and eventually don't work, so later being stuck with the pain and potentially more deformity and then being too old and osteoporitic to do anything about it. I'm trying to weigh these things.

If you have no co-morbidities and are in good general health, are you less likely to have a serious complication? If you go to a fancy medical center are you better off than going to a community hospital setting, even if they do a lot of these surgeries? If you are generally fit and can walk a couple of miles a day does that make any difference in outcomes? I don't do any sports like Ed (skiing) but I do like to take vacations that involve a lot of walking or hiking and I do walk 1-2 miles a day, pain or not.

[Pooka1]

Based on comments, here are some of my questions: What is the incidence of horrible life-altering complications like paralysis? I don't understand how you could get blindness - can anyone explain that? And what's the incidence of really bad things versus lesser complications, not to be sugar coated, that can be managed or treated so that patient returns to a good or better quality of life? I definitely do have some fears about doing surgery (and you guys are doing a good job of scaring me) but I have equal concern about not doing it - having more pain, having epidurals that wear off and eventually don't work, so later being stuck with the pain and potentially more deformity and then being too old and osteoporitic to do anything about it. I'm trying to weigh these things.

If you have no co-morbidities and are in good general health, are you less likely to have a serious complication? If you go to a fancy medical center are you better off than going to a community hospital setting, even if they do a lot of these surgeries? If you are generally fit and can walk a couple of miles a day does that make any difference in outcomes? I don't do any sports like Ed (skiing) but I do like to take vacations that involve a lot of walking or hiking and I do walk 1-2 miles a day, pain or not.

Linda can answer your questions. In re blindness, she can correct me if I am wrong but I think that is due to incorrect or prolonged positioning in the prone position.

[curlygirl]

That's curious about the prone position. I've been a natural stomach sleeper most of my life, although I'm trying to sleep on my back more, but I've spent many nights 8 hours in the prone position and am not blind. Would like more info here.