Interesting Office Visit & Present for Sharon

[mamamax]

As someone with scoliosis (surgically untreated), pain management has become an issue as I age. Last year the pain was so sever (from the moment I would get out of bed in the morning) that I consulted with an SRS surgeon about possible surgery. I was told that my spine could be straightened and that it would take two, possibly three operations to do this. And that if I elected surgery, that I should prepare for the possibility of going on disability. I struggled with that information and decided to give Spinecor a try first, in April of this year. I'm very glad I did, I no longer wake up in pain. I've been able to cut my pain medication in half - and often don't need it at all - as long as I can pretty much move throughout the day at my own pace. At the same time - while I can do more physically, in the course of doing more, I will still sometimes experience pain - albeit the pain is localized in just one area as opposed to my entire back .. hence I still see another surgeon in the same practice as my SRS surgeon, for pain management.

I adore the specialist that I see for this. He's from Egypt - fantastic looking :-) patient with all the questions I have and very informative. I've been feeling some fatigue. A urinalysis was ordered to make sure I'm metabolizing the medication ok - seems fatigue can be a sign of not doing so because the liver is compromised.

Anyway, in the course of today's visit, I was told I had a really really really bad back. Love it when I'm talked to in lay terms I can understand :-) He said my back is so bad that if I did have surgery that I would probably end up in a wheelchair (he said shrugging his shoulders). Ironically I was told 40 years ago, that if I didn't have surgery I would end up in a wheelchair by age 50. He also said that even though I can do more before feeling pain - that I shouldn't because I could cause damage to my spine. No more washing my own car he said - and that I should find a way to have others do anything possible, like laundry and grocery shopping. He said this is how he would advise his own sister (was happy he didn't say grandmother).

My cobb angles are not all that bad - started with the largest of two at 52 degrees left (46 out of brace last Spinecor xray). And fortunately my heart and lungs are not compromised. A LOT of thoracolumbar rotation though. And of course all the things that come with being well seasoned - degenerative disc disease, some arthritis and a few other things I don't know how to spell. I find it curiously odd that even with the vastly improved instrumentation of today, that surgery is not my best option, given my condition.

I find myself pondering tonight. What if I had surgery 40 years ago, with near antiquated instrumentation by now - I would still have had the degenerative disc disease and all the rest of the fun aging stuff by now. Where would I be? Back to square one with pain management? I don't know.

Brace adjustment tomorrow - returning to my specialist in three months for the yearly xray check.

Here's my present for you Sharon - I remember you saying that you would pay to see two independent people measure the same xray and come up with the same cobb angles. I asked my specialist to pull out the xrays from a few days before being fitted with my brace. As you know my spinecor provider took before brace xrays ... both measurements, that of the surgeon and my spinecor provider are: the same! The office visit today was not all that uplifting until that point - Is this close enough to put the check in the mail?

[jrnyc]

Hi mamamax
i read your post with interest...am wondering why the medical people describe your back in such extreme terms...i, too, have scoliosis, with rotation, spinal stenosis, degenerative disc disease, & severe arthritis in my spine...yet i was told by 3 of the top scoli surgeons in nyc (including dr boachie)that i could be operated on successfully with one operation (possibly divided into 2 days for anterior/posterior approach...so maybe that is 2 operations, i dont know)...i have never heard or had a doctor quoted as saying that a wheelchair would be the result after surgery, especially with today's improved instrumentation & techniques...?! all the doctors did say that i would need fusion to the sacrum due to degeneration of discs, but none suggested in any way that i would end up in some way completely dysfunctional..to the contrary...they all seemed to feel that i could have a fully functional life, should i decide on the surgery....

i just wonder why or how your situation is/got to be so extreme...?

i wish you the best...& continued success with the results you have been getting with bracing!

best regards
jess

[mamamax]

Hi jrnyc - to answer your question, I don't know ... but I think this is just another illustration of how one diagnosis can vary from specialist to specialist. I think we have seen that a lot in forum here.

I've heard the wheelchair word more than once .. the first time 40 years ago. It didn't happen, although the pain levels were unreal by age 59. And my surgeon today was being very candid in his opinion - and I noted used the word "probably" not "certainly" ... he was voicing his opinion based on his experience, and advising me as he would his sister.

If I were mega wealthy I'm sure I could fly around the world and get opinions more to my liking.

Thank you for your well wishes - never thought I'd be like a poster child for adult bracing :-)

[tonibunny]

Mamamax, it is great that you're having such good pain relief from the Spinecor. Sometimes I wish I could get hold of one myself (as a post fusion patient with residual curves of 45/35), it looks very comfy and supportive

The wheelchair thing has always struck me as something that can be used to influence patients by either scaring them into having surgery, or scaring them from having surgery. It's so emotive. Back in the 1970s kids were routinely told that they WOULD end up in a wheelchair if they didn't have the surgery, and these days I've seen surgeons appear to dissuade people with minimal curves who are keen on having surgery for cosmetic reasons by emphasising the risks.

Most people assume that "ending up in a wheelchair" means that they would probably end up with some degree of paralysis. In reality, I know several people with extremely severe uncorrected JIS and AIS of over 150 degrees, and none of them are wheelchair users for this reason. They do have very poor respiratory function and some rely on oxygen, which severely curtails their movements; I think that it is probably this, and pain, rather than paralysis that would force people with unfused scoliosis into a wheelchair.

It's a horrible thought Thankfully some of the people I know with curves of this magnitude have had successful surgery in recent years, which has kept them from needing oxygen and has definitely preserved their quality of life.

[mamamax]

Originally Posted by tonibunny

Mamamax, it is great that you're having such good pain relief from the Spinecor. Sometimes I wish I could get hold of one myself (as a post fusion patient with residual curves of 45/35), it looks very comfy and supportive

The wheelchair thing has always struck me as something that can be used to influence patients by either scaring them into having surgery, or scaring them from having surgery. It's so emotive. Back in the 1970s kids were routinely told that they WOULD end up in a wheelchair if they didn't have the surgery, and these days I've seen surgeons appear to dissuade people with minimal curves who are keen on having surgery for cosmetic reasons by emphasising the risks.

Most people assume that "ending up in a wheelchair" means that they would probably end up with some degree of paralysis. In reality, I know several people with extremely severe uncorrected JIS and AIS of over 150 degrees, and none of them are wheelchair users for this reason. They do have very poor respiratory function and some rely on oxygen, which severely curtails their movements; I think that it is probably this, and pain, rather than paralysis that would force people with unfused scoliosis into a wheelchair.

It's a horrible thought Thankfully some of the people I know with curves of this magnitude have had successful surgery in recent years, which has kept them from needing oxygen and has definitely preserved their quality of life.

Thank you Toni - because of your perspective I'll sleep a lot better tonight! And that's the truth. For the moment I have no heart and lung compromise .. oh Lord, hope to keep it that way. Thank you so much!

[txmarinemom]

I guess I just have a few observations:

- What did you really hope to achieve by basically titling your post "So take THAT, Sharon"?

- "Really, really, really bad back ... " ... "so bad that ... "?

I'm having a tough time imagining a competent doctor - PM or ortho - using those terms - and admittedly, it negates his competence in my mind. I'm doubtful (with those vocabulary limitations) he's qualified to reliably comment on your Cobb. I'd say proceed at your own risk.

Bottom line? He may share office space with the proclaimed SRS surgeon, but he is ... not one.

We're back to apples to apples (vs. oranges) again.

- For someone who repeatedly regurgitates research refs, I'm surprised you might not know how to spell a few things about your own body. Mimic isn't a talent of all that much use; real knowledge IS.

- You're the first one to play innocent, calling for camaraderie (like in Dingo's "Torso Rotation" thread) when you dig yourself in a hole. You're also the first to persist in the smarmy, (not even) thinly veiled hostility in your posts. Look back at you questioning Sharon how she behaves in her professional life (which, I have no doubt, is as factual as here), and you're doing that grandmotherly thing with the "Certainly you know that ..." and "Glad you understand that ..." when no one agreed with you at all.

That's passive-aggressive behavior to a tee. You're all good until someone tilts your applecart ... and it has a wonky wheel *anyway*, sister.

Has it occurred to you, in all your "well-seasonedness" that *maybe* if you didn't behave a certain way, people might respond to you differently?

I'm surprised you only now mentioned today's appt. with all the other posting you did.

Regards,
Pam

[mamamax]

Pam

My comment to Sharon was in jest - trying to find some humor in this day. It was nice to see the same readings. I don't think Sharon would have taken offense -

Sharon - if you did, I'm sorry, meant no harm.

As for the rest - I was sharing my experience - like everyone else here.

Your post is horrible and probably the worst on record. I can think of only one word for it - poisonous.

[txmarinemom]

Originally Posted by mamamax

Pam

My comment to Sharon was in jest - trying to find some humor in this day. It was nice to see the same readings. I don't think Sharon would have taken offense -

Sharon - if you did, I'm sorry, meant no harm.

As for the rest - I was sharing my experience - like everyone else here.

Your post is horrible and probably the worst on record. I can think of only one word for it - poisonous.

Passive-aggressive humor is NOT in jest. Although Sharon can certainly speak for herself, I'll give you a tip: Piety is not becoming, and if you have to toss in an apology after the fact, it wasn't funny in the first place.

It's unfortunate you only perceive poison as things that come your way.

[LindaRacine]

Originally Posted by mamamax

As someone with scoliosis (surgically untreated), pain management has become an issue as I age. Last year the pain was so sever (from the moment I would get out of bed in the morning) that I consulted with an SRS surgeon about possible surgery. I was told that my spine could be straightened and that it would take two, possibly three operations to do this. And that if I elected surgery, that I should prepare for the possibility of going on disability. I struggled with that information and decided to give Spinecor a try first, in April of this year. I'm very glad I did, I no longer wake up in pain. I've been able to cut my pain medication in half - and often don't need it at all - as long as I can pretty much move throughout the day at my own pace. At the same time - while I can do more physically, in the course of doing more, I will still sometimes experience pain - albeit the pain is localized in just one area as opposed to my entire back .. hence I still see another surgeon in the same practice as my SRS surgeon, for pain management.

I adore the specialist that I see for this. He's from Egypt - fantastic looking :-) patient with all the questions I have and very informative. I've been feeling some fatigue. A urinalysis was ordered to make sure I'm metabolizing the medication ok - seems fatigue can be a sign of not doing so because the liver is compromised.

Anyway, in the course of today's visit, I was told I had a really really really bad back. Love it when I'm talked to in lay terms I can understand :-) He said my back is so bad that if I did have surgery that I would probably end up in a wheelchair (he said shrugging his shoulders). Ironically I was told 40 years ago, that if I didn't have surgery I would end up in a wheelchair by age 50. He also said that even though I can do more before feeling pain - that I shouldn't because I could cause damage to my spine. No more washing my own car he said - and that I should find a way to have others do anything possible, like laundry and grocery shopping. He said this is how he would advise his own sister (was happy he didn't say grandmother).

My cobb angles are not all that bad - started with the largest of two at 52 degrees left (46 out of brace last Spinecor xray). And fortunately my heart and lungs are not compromised. A LOT of thoracolumbar rotation though. And of course all the things that come with being well seasoned - degenerative disc disease, some arthritis and a few other things I don't know how to spell. I find it curiously odd that even with the vastly improved instrumentation of today, that surgery is not my best option, given my condition.

I find myself pondering tonight. What if I had surgery 40 years ago, with near antiquated instrumentation by now - I would still have had the degenerative disc disease and all the rest of the fun aging stuff by now. Where would I be? Back to square one with pain management? I don't know.

Brace adjustment tomorrow - returning to my specialist in three months for the yearly xray check.

Here's my present for you Sharon - I remember you saying that you would pay to see two independent people measure the same xray and come up with the same cobb angles. I asked my specialist to pull out the xrays from a few days before being fitted with my brace. As you know my spinecor provider took before brace xrays ... both measurements, that of the surgeon and my spinecor provider are: the same! The office visit today was not all that uplifting until that point - Is this close enough to put the check in the mail?

Well, you've now given us plenty of clues (area of Florida, ethnicity, and good looking) as to who your surgeon might be, and I still can't figure it out. I have photos of all the active SRS members. I'm guessing that he's not as popular a surgeon as you've lead us to believe.

I've talked to hundreds, maybe thousands, of adult scoliosis patients. I can't remember anyone ever telling me that their specialist told them that surgery would result in the patient being wheelchair bound. I would question this surgeon's skill therefore.

What makes you think that you'd have DDD for certain? While the probability is high (with or without surgery), there's no guarantee.

[mamamax]

Originally Posted by LindaRacine

Well, you've now given us plenty of clues (area of Florida, ethnicity, and good looking) as to who your surgeon might be, and I still can't figure it out. I have photos of all the active SRS members. I'm guessing that he's not as popular a surgeon as you've lead us to believe.

I've talked to hundreds, maybe thousands, of adult scoliosis patients. I can't remember anyone ever telling me that their specialist told them that surgery would result in the patient being wheelchair bound. I would question this surgeon's skill therefore.

What makes you think that you'd have DDD for certain? While the probability is high (with or without surgery), there's no guarantee.

Hi Linda - nice to see you :-) and happy belated birthday!

The pain management surgeon (from Egypt) is not the SRS surgeon. The SRS surgeon said I should prepare for the possibility of going on disability - the pain management surgeon (from Egypt) was offering a candid opinion based on his experience which no doubt is not on the same level as the SRS surgeon.

I don't know how popular my SRS surgeon is but no one has ever said anything bad about him here. The not-SRS surgeon said I had DDD - we're talking degenerative disc disease right? Anyway I would hope he's qualified to diagnose that.

I have had to hear the wheelchair word more than to my liking. 40 years ago in Virginia - a little over 10 years ago in Columbia Missouri (SRSs) ... both of those times as a prognosis if I didn't have surgery - then today if I did. Freaked me out.

[Ballet Mom]

Originally Posted by mamamax

Brace adjustment tomorrow - returning to my specialist in three months for the yearly xray check.

Here's my present for you Sharon - I remember you saying that you would pay to see two independent people measure the same xray and come up with the same cobb angles. I asked my specialist to pull out the xrays from a few days before being fitted with my brace. As you know my spinecor provider took before brace xrays ... both measurements, that of the surgeon and my spinecor provider are: the same! The office visit today was not all that uplifting until that point - Is this close enough to put the check in the mail?

[/color]

Hi Mamamax, glad you're getting help with your pain.

I must say I am confused though with all these specialists. You're returning to the pain specialist in three months for the x-rays or is this your chiropractor you're talking about, or the SRS guy down the hall?

Also, which specialist did you ask to pull the x-rays from? And then you had the pain specialist measure the Cobb angle, or is this the SRS guy from down the hall? I'm confused.... The surgeon (which one) had taken x-rays very close to the same time as the chiropractor? Or they measured the same x-ray?

[jrnyc]

I believe that Linda is the fairest of moderators...doesnt "take sides," doesnt criticize, & has the good of the patients at heart...and all who write in to this forum...always!


jess

[mamamax]

Originally Posted by Ballet Mom

Hi Mamamax, glad you're getting help with your pain.

I must say I am confused though with all these specialists. You're returning to the pain specialist in three months for the x-rays or is this your chiropractor you're talking about, or the SRS guy down the hall?

Also, which specialist did you ask to pull the x-rays from? And then you had the pain specialist measure the Cobb angle, or is this the SRS guy from down the hall? I'm confused.... The surgeon (which one) had taken x-rays very close to the same time as the chiropractor? Or they measured the same x-ray?

Hi Ballet Mom - I get yearly xrays from my specialists/surgeons yearly .. to check for any progression. I return to these specialists every six months for pain management monitoring, or any other time I have a concern.

I had xrays taken days before fitting with my brace - I wanted a record of my beginning measurements from both my specialists and my brace provider - so two sets of xrays within days of each other. One set by the specialists, the other by the brace provider. Cobb angle measurements turned out to match.

[mamamax]

Dhugger & Toni Bunny -

Thank you for your comments. Yesterday was not an easy one, and it would have been considerably more difficult without your support and understanding.

[Pooka1]

My observations/opinions:

1. This board moderates to elevate facts over feelings. SSO, in my opinion, allows feelings at the expense of facts. I consider that somewhat misleading. That is why I have chosen to stop posting over there (except on one thread). I understand protecting people's feelings but NOT at the expense of facts. We are adults, not children.

2. Anyone familiar with the situation here would not say Linda and Pam are in great agreement on certain subjects.

3. Mamamax, I didn't take offense about the joke. Relax. I think what I was asking what is the Cobb angles measured by a chiro who wants to keep a growing kid in treatment for some alternative/unproven approach would have the same reading as a surgeon. And w.r.t. your chiro and surgeon agreeing on your (adult, pre-brace) measurement this one time, you would actually expect that by chance alone some percentage of the time. A better test would be if the surgeon agreed with the in-brace reduction. That I would be interested in seeing.