How far have you traveled to have your surgery?

[Pooka1]

Hi Sharon,

I learned something today that I thought you might find interesting. I was at my consult with Dr. Bederman and he measured my curves and found my thoracic curve to be at 50* and my lumbar curve to be 66*. Ironically, he had an X-ray that I had done in 2003 (age 44) at UCI (can't recall it, but it had my name on it) and my curves were in the low 20's!! This really confirms my feelings that hysterectomy including ovaries at age 47 caused my curve to progress dramatically.

I guess my remembrance of 30 degree curves must be from some between them and now. Unfortunately my mother passed away in 2008 so I really don't know what they were when first discovered at age 14 ( I do recall I was nearly finished growing).

He definitely took note of the rate of progression and so did I. Anyway, I thought this was interesting.

BTW - I was very impressed with him and how he described he would handle the surgery if I chose to proceed.

Happy Friday, Scojo

Scojo,

Thanks so much for this.

My only comment is "WOW!" So your curves were LOW 20*s and yet here you are 10 years later in surgical range. Did Dr. Bederman use the term, "collapsing"? Dr. Hey on his blog has posted some cases of so-called collapsing spines wherein the curve was sub-surgical for years and then just kicks into gear and quickly reaches surgical range.

Did Dr. Bederman act surprised that your curves were WELL under the threshold thought to be stable for life yet you reached surgical range? I am wondering if surgeons are not surprised like Dr. Hey certainly doesn't seem to be in relating these cases because they might see many cases of small curves in mature spines that nevertheless become surgical. The reason this is important is that it tends to undermine the case for bracewear if these cases go on to surgical range at a similar rate to those who didn't wear braces.

Do you consider your brace as only delaying progression?

Thanks again for posting. You have a very interesting case. :-)

[Pooka1]

This really confirms my feelings that hysterectomy including ovaries at age 47 caused my curve to progress dramatically.

I think that's a very viable hypothesis! Did you run it past Dr. Bederman?

[ScoJo]

Scojo,

Thanks so much for this.

My only comment is "WOW!" So your curves were LOW 20*s and yet here you are 10 years later in surgical range. Did Dr. Bederman use the term, "collapsing"? Dr. Hey on his blog has posted some cases of so-called collapsing spines wherein the curve was sub-surgical for years and then just kicks into gear and quickly reaches surgical range.

Did Dr. Bederman act surprised that your curves were WELL under the threshold thought to be stable for life yet you reached surgical range? I am wondering if surgeons are not surprised like Dr. Hey certainly doesn't seem to be in relating these cases because they might see many cases of small curves in mature spines that nevertheless become surgical. The reason this is important is that it tends to undermine the case for bracewear if these cases go on to surgical range at a similar rate to those who didn't wear braces.

Do you consider your brace as only delaying progression?

Thanks again for posting. You have a very interesting case. :-)

Yes, he did seem surprised. I thought the 2003 X-Ray was not mine and questioned it. From earlier years the only degree level I remember is the 30 degree range, but can't recall when I was told that information. I was so involved working and traveling in my job, I nearly ignored the whole thing until pain started slowing me down.

We both double checked the film and it had my full name, which is not very common. He did not use the word collapsing. I asked him how he would rate the complexity of my case on a scale of 1 to 10 and he said a 6 or 7. Luckily my spinal cord is in good shape and the compelling factors toward surgery are the progression, pain and functional impairment. I am fortunate in that my curves align and I an fairly level at the hips and only slightly less so at the shoulders. I do have the classic flat back and lean forward. He showed me how I am compensating by tucking my pelvis which is causing pressure on my hip joints. He was really great, no pressure at all - fact told me I could wait to do surgery, and really spent time explaining my condition, the surgery process and the risks.

I love it that he is local and really hope to hear from any other Dr. Bederman patients. It would be great if there are some in OC that I could meet in person.

[ScoJo]

I think that's a very viable hypothesis! Did you run it past Dr. Bederman?

I did and he wrote it down and seemed to concur that it may have been a factor but didn't verbalize it.

[Pooka1]

This is one of the best threads ever in my opinion because we have a patient with a very interesting case asking very pertinent, cogent questions and posting the surgeon's responses. It's like Christmas in February for me. :-)

Thanks so much, Scojo. :-)

[LindaRacine]

Hi Sharon,

I learned something today that I thought you might find interesting. I was at my consult with Dr. Bederman and he measured my curves and found my thoracic curve to be at 50* and my lumbar curve to be 66*. Ironically, he had an X-ray that I had done in 2003 (age 44) at UCI (can't recall it, but it had my name on it) and my curves were in the low 20's!! This really confirms my feelings that hysterectomy including ovaries at age 47 caused my curve to progress dramatically.

I guess my remembrance of 30 degree curves must be from some between them and now. Unfortunately my mother passed away in 2008 so I really don't know what they were when first discovered at age 14 ( I do recall I was nearly finished growing).

He definitely took note of the rate of progression and so did I. Anyway, I thought this was interesting.

BTW - I was very impressed with him and how he described he would handle the surgery if I chose to proceed.

Happy Friday, Scojo

While I agree, in theory, that your hysterectomy might be a factor in an increased curve, one case is still, always, anecdotal. I'm fairly certain I could come up with a few people who had moderate curves, had hysterectomies, and whose curves didn't increase. I've thought for a long time that hormones may play a role in curve progression. Scientists have been unable to prove any link in the past. I think the issue is that there's been very little long-term follow-up of small, untreated scoliosis curves. Unfortunately, degenerative scoliosis (which is really common) seems to occur mostly in the 5th and 6th decades of life, so it's hard to know if it's hormones, or just the loss of muscle tone holding the spine straight.

--Linda

[ScoJo]

While I agree, in theory, that your hysterectomy might be a factor in an increased curve, one case is still, always, anecdotal. I'm fairly certain I could come up with a few people who had moderate curves, had hysterectomies, and whose curves didn't increase. I've thought for a long time that hormones may play a role in curve progression. Scientists have been unable to prove any link in the past. I think the issue is that there's been very little long-term follow-up of small, untreated scoliosis curves. Unfortunately, degenerative scoliosis (which is really common) seems to occur mostly in the 5th and 6th decades of life, so it's hard to know if it's hormones, or just the loss of muscle tone holding the spine straight.

--Linda

Good point, Linda. I was originally 5'11" and always had poor muscle tone. I have always had to work to maintain even a below average muscle tone. I also gave multi level degeneration, so who knows. Regardless, here I am now and onward I must go! :-).

[ScoJo]

This is one of the best threads ever in my opinion because we have a patient with a very interesting case asking very pertinent, cogent questions and posting the surgeon's responses. It's like Christmas in February for me. :-)

Thanks so much, Scojo. :-)

I just read this and had to smile! And, you are welcome. This forum is like a life line of information for me.

[LindaRacine]

Did Dr. Bederman act surprised that your curves were WELL under the threshold thought to be stable for life yet you reached surgical range? I am wondering if surgeons are not surprised like Dr. Hey certainly doesn't seem to be in relating these cases because they might see many cases of small curves in mature spines that nevertheless become surgical. The reason this is important is that it tends to undermine the case for bracewear if these cases go on to surgical range at a similar rate to those who didn't wear braces.

Again, one person doesn't prove anything. As you know, as far as I'm concerned, we don't really know the natural history of small curves. But, I'm certain, as an ex-UCSF fellow who saw an abundance of deformity patients, Dr. Bederman would not be surprised by a single case... even if it was unusual.

--Linda

[susancook]

While I agree, in theory, that your hysterectomy might be a factor in an increased curve, one case is still, always, anecdotal. I'm fairly certain I could come up with a few people who had moderate curves, had hysterectomies, and whose curves didn't increase. I've thought for a long time that hormones may play a role in curve progression. Scientists have been unable to prove any link in the past. I think the issue is that there's been very little long-term follow-up of small, untreated scoliosis curves. Unfortunately, degenerative scoliosis (which is really common) seems to occur mostly in the 5th and 6th decades of life, so it's hard to know if it's hormones, or just the loss of muscle tone holding the spine straight.

--Linda

I wonder if women on hormone replacement therapy post menopausally are less likely to have curve progression. I don't think that HT decreases degenerative changes. Susan

[Pooka1]

Again, one person doesn't prove anything. As you know, as far as I'm concerned, we don't really know the natural history of small curves. But, I'm certain, as an ex-UCSF fellow who saw an abundance of deformity patients, Dr. Bederman would not be surprised by a single case... even if it was unusual.

--Linda

I don't disagree. I am just saying plenty of patients and parents would be shocked and possibly mad because lower twenties is not in any rational treatment window at present. Either the paradigm of some protective angle, presumably ~30* is largely true or it isn't.

[leahdragonfly]

Hi ScoJo,

I am quite sure you can call Dr Bederman's office and ask for the contact info for several of his patients who had similar surgeries to what you need. Then you can call them and talk with them about their experiences with Dr Bederman, as well as with surgery and recovery. I did this before my surgery and talked to two of my surgeon's patients. They both were extremely helpful and I gained confidence by talking with them.

I know where you are coming from in agonizing over choosing a surgeon. I live in Oregon and the only surgeons I considered were in Portland, a 2 hour drive from my house. I saw my chosen surgeon for several years before surgery, then got one second opinion that was completely off the chart. I briefly considered whether I needed to travel to UCSF or Seattle for another opinion, but after researching my surgeon some more really concluded that I was perfectly confident in his abilities.

I would not feel that you in any way "owe" anything to your surgeon of 5 years. Do not feel bad about changing. This surgery is a huge thing, and like you say, you want to get it right the first time. You do not want to go with a surgeon you are less than 100%confident in just because you don't want to hurt his feelings or feel that you owe him. Pick the very best you can find, and don't look back. I would certainly go with Dr Bederman myself if I lived near him, based on all the great things I have heard about him.

Best of luck, and keep those questions coming! We are here to help.

[ScoJo]

I wonder if women on hormone replacement therapy post menopausally are less likely to have curve progression. I don't think that HT decreases degenerative changes. Susan

Interestingly, he asked me if I had HT while we were on this topic. I sure the motive was likely that the research side of him wanted to gather that info. I did not, due to a 1/2 sister and paternal aunt who both had breast cancer.

[ScoJo]

Hi ScoJo,

I am quite sure you can call Dr Bederman's office and ask for the contact info for several of his patients who had similar surgeries to what you need. Then you can call them and talk with them about their experiences with Dr Bederman, as well as with surgery and recovery. I did this before my surgery and talked to two of my surgeon's patients. They both were extremely helpful and I gained confidence by talking with them.

I know where you are coming from in agonizing over choosing a surgeon. I live in Oregon and the only surgeons I considered were in Portland, a 2 hour drive from my house. I saw my chosen surgeon for several years before surgery, then got one second opinion that was completely off the chart. I briefly considered whether I needed to travel to UCSF or Seattle for another opinion, but after researching my surgeon some more really concluded that I was perfectly confident in his abilities.

I would not feel that you in any way "owe" anything to your surgeon of 5 years. Do not feel bad about changing. This surgery is a huge thing, and like you say, you want to get it right the first time. You do not want to go with a surgeon you are less than 100%confident in just because you don't want to hurt his feelings or feel that you owe him. Pick the very best you can find, and don't look back. I would certainly go with Dr Bederman myself if I lived near him, based on all the great things I have heard about him.

Best of luck, and keep those questions coming! We are here to help.

Hi Gayle,

Thank you for your input. I think I will meet with a couple of his patients. I did meet with one patient of my current doctor (also trained at UCSF) and she provided great feedback. He is well respected and I think also very skilled, but I am leaning away largely because he just doesn't do enough Scoli cases per year. Also, his approach seemed a bit less conservative (both the anterior and posterior surgeries in the same day with a PA-C assisting as opposed to another ortho surgeon). I learned a lot from this second consult that helped me to recognize this difference. Dr. Bederman does it over two consecutive days with another ortho surgeon assisting. I liked the sound of the post surgery care as well insofar as he braces to reinforce the BLT limitation and places a high focus nutrition.

All of this speaks volumes about second, third or however many opinions a person needs to be comfortable. In fairness, I am becoming more skilled in listening and absorbing the responses with each discussion as well. With that said, I think I agree that within the top surgeons in the US, there are many who are capable, so then it is accessibility. And, fortunately Dr. Bederman is 20 minutes from my home. Next, I am going to talk to a well respected physical therapy group where I have gone and get their opinion. Interestingly, they gave me Dr. Munish Gupta's name, but I don't know it they just didn't know or think of Dr. Bederman. But, right now, I feel really comfortable with Dr. Bederman. Onward!

Thanks again!

Scojo

[LindaRacine]

Dr. Gupta is really great, but I'm not a big fan of traveling for surgery if you have a good option close to home.