Re: Questions on surgeons -

[Guest guest]

(and all),

I wanted to address your point about surgeons...and I would be glad

to hear thoughts on my thinking here...so please let me clarify what

I believe our position is.

At another group there seems to be an idea that a master list should

be developed of who might be an appropriate surgeon to have revision

surgery for flatback. I have resisted that for a few reasons. Most

specifically, I remember a surgeon being added to a list by a

patient before she had surgery. She gave him an excellent write up.

To the knowledge of the group this surgeon had no track record other

than being a student of one of the " biggies " . In fact, one of the

biggies had strongly suggested she hold off having surgery. She went

ahead with surgery and at last post was not doing very well. Her

glowing recommendation of this doctor remains to this day. I would

never want to have the responsibility of having let someone else

take that recommendation and acting upon it.

I know there are other surgeons who can accomplish this surgery

other than the 5/6 most often mentioned here. I just don't really

think it is wise to recommend ANY of them for surgery....My approach

has been simply to recommend that once a patient has selected a

surgeon for consideration for the surgery that the patient then

consult one of the 5 that I am confident have done this surgery many

times, and to a good result.

Is that confusing? For instance, DrBerven, Lenke (or Akbarnia) may

be fantastic surgeons and more than capable of dealing with

flatback....but in my almost 3 years on the boards I am only aware

of one patient each for Berven and Lenke (and none for Akbarnia)who

had flatback surgery with them. So, if asked, I would suggest that

a patient seeing one of them still get a second opinion from a 2nd

surgeon who we see here as having a longer and more obvious track

record. Actuallly, my personal belief is that anyone who does not

get a very qualified 2nd opinion for this surgery is really " rolling

the dice " .....but that is just my own opinion.

When I had surgery, arguably, DrBoachie's reputation was larger and

more established than Rands....but none the less they both had many

patients who could verify their experiences and outcomes. For me the

key points were that they both thought surgery was probably going to

much improve my function and pain levels, they both were

recommending in favor of getting the full revision with fusion to

sacrum, they both laid out a similar scenario for timelines. My job

was to evaluate the differences in the actual way they were

proposing to do the surgery, and there I had a very easy time of

tracking down information and patients who could help me make the

decision of one over the other. The end result was a high level of

confidence in my decision to go the way I did. That is at least one

important thing in going ahead with a surgery of this magnitude.

So, you will also notice that I dont really recommend any of the top

guys for surgery, I recommend them for an opinion. If someone wants

to stay local and has confidence in their surgeon....terrific. I

hope all goes well with them, and if they have done their homework

they may very well have a good result. I certainly am aware of a

number of surgeons and their patients who have done well. Should we

actually recommend anyone for surgery on a " list " and leave a

internet trail that can live on in perpetuity? I am just not all

that comfortable with that. I am very willing to add a surgeon to my

list of who should be consulted for a 2nd opinion once I see a few

more patients posting about their experiences.

There is also the opportunity to use the database for members to

list their surgeon and to indicate if they are willing to be

contacted about their experience privately.

So in specific answer to your quesiton, I guess that this is why

DrBerven isn't mentioned....either his patients have done so

fantastic after flatback surgery that they are off living active

lives and don't need any internet support.....or they are all cyber-

impaired...or they are lurking. Or there really are not as many of

them as some of the ones we hear about on this site (and others)the

most.

Question,do you mean the " tip of the iceberg " as in patients or as

in surgeons? I am coming to believe that the reality is that the

number of patients that are going to require revision of their

previous surgeries is a growing group....or at least now that the

techniques that most of us have been guine pigs on are beginning to

reveal that there is a chance of good outcomes we are going to see

more surgeons undertake the surgery. And surely some of them should

not.

I am more than willing to be pursueded that there is another way to

handle this....any and all???

Take Care, Cam

> By the way, this is a little off topic, but while I¹m on the

subject of top

> surgeons, I wonder why Dr. Berven is almost never mentioned. If I

were to

> have to have additional surgery, he would be one of my top 2-3

choices in

> the entire country. For some reason, we hear the same 5 names

mentioned

> over and over again, but I think there are probably at least a

dozen others

> who are equally qualified. It makes me think that our little

group is just

> the tip of the iceberg.

>

> Regards,

>

>

>

[Guest guest]

Hi Cam....

The “tip of the iceberg” referred to patients.

I hear you about your concern of having a master list. For some reason, patients often seem to fall in love with their surgeons, usually before the surgery. They talk of these surgeons as if they’re God. And, I think that “love” often makes the patients blind.

I haven’t said it in awhile, but I think that people who aren’t within easy distance to one of the “big 5/6,” should start their search for doctors who did fellowships with one of the big surgeons (plus other retired surgeons known for revision (such as Bradford)). These guys have a lot of experience before they ever start their own practice. Also, look at the research and see who is publishing. If they’re publishing research on revision, they probably have a lot of revision patients. And, I can’t stress strongly enough that potential patients should ask for references of at least 3-4 recent revision patients, and actually talk to those patients.

While I think it’s smart for people who don’t have access to good medical care close to home, traveling for a big surgery like this would be really daunting to me. Don’t ever underestimate what it will be like to be in the hospital with no one you love close by.

As to Dr. Berven, I’ve talked to dozens of Dr. Berven’s revision patients. For some reason, they never feel the need to come here. The one that I’m closest to is a friend who had revision surgery almost two years ago. It was one huge revision, with a lot of osteotomies. She was off all pain medication within 3 weeks of surgery. I’d been a big fan of Dr. Berven since I met him when he was doing his fellowship, but that rapid recovery really got my attention. He also was the only surgeon I’d ever met who had concern about incisional hernias.

So, that’s my $.02. :-)

Regards,

On 10/5/06 7:26 AM, " cammaltby " <cammaltby@...> wrote:

(and all),

I wanted to address your point about surgeons...and I would be glad

to hear thoughts on my thinking here...so please let me clarify what

I believe our position is.

At another group there seems to be an idea that a master list should

be developed of who might be an appropriate surgeon to have revision

surgery for flatback. I have resisted that for a few reasons. Most

specifically, I remember a surgeon being added to a list by a

patient before she had surgery. She gave him an excellent write up.

To the knowledge of the group this surgeon had no track record other

than being a student of one of the " biggies " . In fact, one of the

biggies had strongly suggested she hold off having surgery. She went

ahead with surgery and at last post was not doing very well. Her

glowing recommendation of this doctor remains to this day. I would

never want to have the responsibility of having let someone else

take that recommendation and acting upon it.

I know there are other surgeons who can accomplish this surgery

other than the 5/6 most often mentioned here. I just don't really

think it is wise to recommend ANY of them for surgery....My approach

has been simply to recommend that once a patient has selected a

surgeon for consideration for the surgery that the patient then

consult one of the 5 that I am confident have done this surgery many

times, and to a good result.

Is that confusing? For instance, DrBerven, Lenke (or Akbarnia) may

be fantastic surgeons and more than capable of dealing with

flatback....but in my almost 3 years on the boards I am only aware

of one patient each for Berven and Lenke (and none for Akbarnia)who

had flatback surgery with them. So, if asked, I would suggest that

a patient seeing one of them still get a second opinion from a 2nd

surgeon who we see here as having a longer and more obvious track

record. Actuallly, my personal belief is that anyone who does not

get a very qualified 2nd opinion for this surgery is really " rolling

the dice " .....but that is just my own opinion.

When I had surgery, arguably, DrBoachie's reputation was larger and

more established than Rands....but none the less they both had many

patients who could verify their experiences and outcomes. For me the

key points were that they both thought surgery was probably going to

much improve my function and pain levels, they both were

recommending in favor of getting the full revision with fusion to

sacrum, they both laid out a similar scenario for timelines. My job

was to evaluate the differences in the actual way they were

proposing to do the surgery, and there I had a very easy time of

tracking down information and patients who could help me make the

decision of one over the other. The end result was a high level of

confidence in my decision to go the way I did. That is at least one

important thing in going ahead with a surgery of this magnitude.

So, you will also notice that I dont really recommend any of the top

guys for surgery, I recommend them for an opinion. If someone wants

to stay local and has confidence in their surgeon....terrific. I

hope all goes well with them, and if they have done their homework

they may very well have a good result. I certainly am aware of a

number of surgeons and their patients who have done well. Should we

actually recommend anyone for surgery on a " list " and leave a

internet trail that can live on in perpetuity? I am just not all

that comfortable with that. I am very willing to add a surgeon to my

list of who should be consulted for a 2nd opinion once I see a few

more patients posting about their experiences.

There is also the opportunity to use the database for members to

list their surgeon and to indicate if they are willing to be

contacted about their experience privately.

So in specific answer to your quesiton, I guess that this is why

DrBerven isn't mentioned....either his patients have done so

fantastic after flatback surgery that they are off living active

lives and don't need any internet support.....or they are all cyber-

impaired...or they are lurking. Or there really are not as many of

them as some of the ones we hear about on this site (and others)the

most.

Question,do you mean the " tip of the iceberg " as in patients or as

in surgeons? I am coming to believe that the reality is that the

number of patients that are going to require revision of their

previous surgeries is a growing group....or at least now that the

techniques that most of us have been guine pigs on are beginning to

reveal that there is a chance of good outcomes we are going to see

more surgeons undertake the surgery. And surely some of them should

not.

I am more than willing to be pursueded that there is another way to

handle this....any and all???

Take Care, Cam

> By the way, this is a little off topic, but while I’m on the

subject of top

> surgeons, I wonder why Dr. Berven is almost never mentioned. If I

were to

> have to have additional surgery, he would be one of my top 2-3

choices in

> the entire country. For some reason, we hear the same 5 names

mentioned

> over and over again, but I think there are probably at least a

dozen others

> who are equally qualified. It makes me think that our little

group is just

> the tip of the iceberg.

>

> Regards,

>

>

>

[Guest guest]

Dear ,

I have thought about this often too. The group has about five to seven names of doctors that float around. Why not more, well people talk about doctors thay have experience with. Why patients of other doctors outside that five to seven doc's don't post here who knows. People who use the computer for medical stuff probably are not the majority of people seeking medical care. There are a lot of people who after a diagnosis wouldn't think to go online and check out the condition or even join an online message board or support group. I think probably there are more of those types than us who post here. Many get a diagnosis from a doc and move along with his recommendations. I do think many who come to our group move to see doc's that are talked about here, mostly because we have results they can see and people they can talk to about the doc and our results. We'd love to have any of Dr. Berven's patients here. I have always been of the opinion that having more and more doc's trained to do this surgery is a good thing. The list of five just like us are getting older and will retire, and then what do we do. I went with my local doc, who was trained, who consulted with both Lenke and Bridwell about my case, and feel perfectly comfortable with my choice.

Okay, I'll admit I love my doc, but there is a reason for it. First, after years of running around with pain and disability, he put a name to my distress. He had a plan to help me get a better quality of life. I have said it before, he gets us crooked people in a way I have never experienced before. And I have seen tons of ortho's who were to say the least full of themselves, and I was only and X-Ray and a procedure to them. Kumar is a family man and treats not only the patient but helps the family get and adjust to whats happening. I found this such a relief. My walk through Flatback took more than one surgery, and so I have developed a relationship with my doctor, his assistant, and the practice in general that many don't have the time to develope. I also have a daughter with Scoliosis, and he treats her too. Being with the Denver Spine Center felt like a warm hug, something you need when you are going through what we go through. A practice reflects the doctors, and I not only got a skilled surgeon, but friends I will have for a lifetime. I feel that while I'm good now, this scoliosis thing will probably be a lifelong battle for me, and I have a doctor in Kumar that helps me walk through that battle ( and boy walking sure wasn't something I could do well before I got to him). So the love comes from a common batlle, respect, friendship, and the caring " care " I and my family was given. Do I think he's God, no I don't and he sure doesn't either. You have to have respect for the gravity of this surgery and he sure does and so do I. But it sure doesn't hurt to have along with a skilled surgeon, a doctor that you can talk to , who gets your family, and in whom you feel a part of the process with. I have that with Kumar, and thank my lucky stars I do.

Colorado Springs

Re: [ ] Re: Questions on surgeons -

Hi Cam....The “tip of the iceberg” referred to patients.I hear you about your concern of having a master list. For some reason, patients often seem to fall in love with their surgeons, usually before the surgery. They talk of these surgeons as if they’re God. And, I think that “love” often makes the patients blind.I haven’t said it in awhile, but I think that people who aren’t within easy distance to one of the “big 5/6,” should start their search for doctors who did fellowships with one of the big surgeons (plus other retired surgeons known for revision (such as Bradford)). These guys have a lot of experience before they ever start their own practice. Also, look at the research and see who is publishing. If they’re publishing research on revision, they probably have a lot of revision patients. And, I can’t stress strongly enough that potential patients should ask for references of at least 3-4 recent revision patients, and actually talk to those patients.While I think it’s smart for people who don’t have access to good medical care close to home, traveling for a big surgery like this would be really daunting to me. Don’t ever underestimate what it will be like to be in the hospital with no one you love close by. As to Dr. Berven, I’ve talked to dozens of Dr. Berven’s revision patients. For some reason, they never feel the need to come here. The one that I’m closest to is a friend who had revision surgery almost two years ago. It was one huge revision, with a lot of osteotomies. She was off all pain medication within 3 weeks of surgery. I’d been a big fan of Dr. Berven since I met him when he was doing his fellowship, but that rapid recovery really got my attention. He also was the only surgeon I’d ever met who had concern about incisional hernias. So, that’s my $.02. :-)Regards,On 10/5/06 7:26 AM, "cammaltby" <cammaltby > wrote:

(and all),I wanted to address your point about surgeons...and I would be glad to hear thoughts on my thinking here...so please let me clarify what I believe our position is.At another group there seems to be an idea that a master list should be developed of who might be an appropriate surgeon to have revision surgery for flatback. I have resisted that for a few reasons. Most specifically, I remember a surgeon being added to a list by a patient before she had surgery. She gave him an excellent write up. To the knowledge of the group this surgeon had no track record other than being a student of one of the "biggies". In fact, one of the biggies had strongly suggested she hold off having surgery. She went ahead with surgery and at last post was not doing very well. Her glowing recommendation of this doctor remains to this day. I would never want to have the responsibility of having let someone else take that recommendation and acting upon it.I know there are other surgeons who can accomplish this surgery other than the 5/6 most often mentioned here. I just don't really think it is wise to recommend ANY of them for surgery....My approach has been simply to recommend that once a patient has selected a surgeon for consideration for the surgery that the patient then consult one of the 5 that I am confident have done this surgery many times, and to a good result.Is that confusing? For instance, DrBerven, Lenke (or Akbarnia) may be fantastic surgeons and more than capable of dealing with flatback....but in my almost 3 years on the boards I am only aware of one patient each for Berven and Lenke (and none for Akbarnia)who had flatback surgery with them. So, if asked, I would suggest that a patient seeing one of them still get a second opinion from a 2nd surgeon who we see here as having a longer and more obvious track record. Actuallly, my personal belief is that anyone who does not get a very qualified 2nd opinion for this surgery is really "rolling the dice".....but that is just my own opinion. When I had surgery, arguably, DrBoachie's reputation was larger and more established than Rands....but none the less they both had many patients who could verify their experiences and outcomes. For me the key points were that they both thought surgery was probably going to much improve my function and pain levels, they both were recommending in favor of getting the full revision with fusion to sacrum, they both laid out a similar scenario for timelines. My job was to evaluate the differences in the actual way they were proposing to do the surgery, and there I had a very easy time of tracking down information and patients who could help me make the decision of one over the other. The end result was a high level of confidence in my decision to go the way I did. That is at least one important thing in going ahead with a surgery of this magnitude.So, you will also notice that I dont really recommend any of the top guys for surgery, I recommend them for an opinion. If someone wants to stay local and has confidence in their surgeon....terrific. I hope all goes well with them, and if they have done their homework they may very well have a good result. I certainly am aware of a number of surgeons and their patients who have done well. Should we actually recommend anyone for surgery on a "list"and leave a internet trail that can live on in perpetuity? I am just not all that comfortable with that. I am very willing to add a surgeon to my list of who should be consulted for a 2nd opinion once I see a few more patients posting about their experiences.There is also the opportunity to use the database for members to list their surgeon and to indicate if they are willing to be contacted about their experience privately. So in specific answer to your quesiton, I guess that this is why DrBerven isn't mentioned....either his patients have done so fantastic after flatback surgery that they are off living active lives and don't need any internet support.....or they are all cyber-impaired...or they are lurking. Or there really are not as many of them as some of the ones we hear about on this site (and others)the most.Question,do you mean the "tip of the iceberg" as in patients or as in surgeons? I am coming to believe that the reality is that the number of patients that are going to require revision of their previous surgeries is a growing group....or at least now that the techniques that most of us have been guine pigs on are beginning to reveal that there is a chance of good outcomes we are going to see more surgeons undertake the surgery. And surely some of them should not.I am more than willing to be pursueded that there is another way to handle this....any and all???Take Care, Cam> By the way, this is a little off topic, but while I’m on the subject of top> surgeons, I wonder why Dr. Berven is almost never mentioned. If I were to> have to have additional surgery, he would be one of my top 2-3 choices in> the entire country. For some reason, we hear the same 5 names mentioned> over and over again, but I think there are probably at least a dozen others> who are equally qualified. It makes me think that our little group is just> the tip of the iceberg.> > Regards,> > >

[Guest guest]

,

> The ³tip of the iceberg² referred to patients.

A real growth industry...that is scary in and of itself!> I haven¹t said it in awhile, but I think that people who aren¹t within easy> distance to one of the ³big 5/6,² should start their search for doctors who> did fellowships with one of the big surgeons (plus other retired surgeons> known for revision (such as Bradford)). These guys have a lot of> experience before they ever start their own practice. Also, look at the> research and see who is publishing. If they¹re publishing research on> revision, they probably have a lot of revision patients. And, I can¹t> stress strongly enough that potential patients should ask for references of> at least 3-4 recent revision patients, and actually talk to those patients.

Yes, I agree....3-4 patients....and I would say preferably not ones referred to by the surgeon. A little independant confirmation is nice. > While I think it¹s smart for people who don¹t have access to good medical> care close to home, traveling for a big surgery like this would be really> daunting to me. Don¹t ever underestimate what it will be like to be in the> hospital with no one you love close by.

I don't over estimate it...it is what I did...spent all but the 36 hours after surgery alone (although I was visited by friends I had recently made in Boston). There just are not facilities for major surgery where I live....this spine stuff or anything. Everyone who lives here on this island knows that if we need serious medical care they are going to have to travel some distance. Generally, I think this is true for anyone who chooses to live in a rural/remote areas...so perhaps therein lies the difference. There are those of us who know that signifigant medical care usually requires a major disruption for us and our families...as opposed to those that live in big cities that are used to being able to access pretty good medical care right in their back yard. (Maybe that is part of what Ken is having a hard time wrapping his head around.?) It is one of the things that people weigh heavily when they chose where they live. Surely if this back (or anything else in our family) required more constant attention then I would really have to rethink this remote living stuff! I think you are just a city mouse and I am just a country mouse!> > As to Dr. Berven, I¹ve talked to dozens of Dr. Berven¹s revision patients.> For some reason, they never feel the need to come here. The one that I¹m> closest to is a friend who had revision surgery almost two years ago. It> was one huge revision, with a lot of osteotomies. She was off all pain> medication within 3 weeks of surgery. I¹d been a big fan of Dr. Berven> since I met him when he was doing his fellowship, but that rapid recovery> really got my attention. He also was the only surgeon I¹d ever met who had> concern about incisional hernias.

I would certainly consult him if I was on the left coast on your recommendation alone.Take Care, Cam

[Guest guest]

Hi ,

Whether to stay near home or go elsewhere and lose the companionship and help of your family and friends while you are in the hospital? Different answer for everyone. A lot depends on your condition and who your relatives and friends are. My "closest" friends live about an hour from the hospital and never came to see me. I was there for 9 days. One very good friend came three times and another came once. I wished they hadn't. I was on no position to entertain them or even carry on a conversation. I was grateful for their care and concern, but I couldn't handle anything more than a very short visit. We live about an hour from the hospital and my husband worked near home. He and my daughter who lives about a 1/2 hour from the hospital came with me on the day of surgery and stayed until they could see me in recovery. My hubby came every day by 11 am and stayed till about 8:30 pm. I enjoyed his companionship but he was helpless otherwise. My daughter came every evening and aside from her companionship and the fact that just having her in the room makes me smile, she, too was useless in terms of hands on help. Had I not had private nurses, it would have been horrible. I had a terrible time getting the proper pain management (things are better since then, I trust, since that was 8 and 1/2 years ago). My daughter and hubby left it to me to handle it. Anyway, to make a very long story a little shorter, know yourself and your relatives and friends very well before you rely on them for anything. And, I don't blame my husband or daughter for anything. They were just not equipped to handle it all.

Bonnie

Re: [ ] Re: Questions on surgeons -

Hi Cam....The “tip of the iceberg” referred to patients.I hear you about your concern of having a master list. For some reason, patients often seem to fall in love with their surgeons, usually before the surgery. They talk of these surgeons as if they’re God. And, I think that “love” often makes the patients blind.I haven’t said it in awhile, but I think that people who aren’t within easy distance to one of the “big 5/6,” should start their search for doctors who did fellowships with one of the big surgeons (plus other retired surgeons known for revision (such as Bradford)). These guys have a lot of experience before they ever start their own practice. Also, look at the research and see who is publishing. If they’re publishing research on revision, they probably have a lot of revision patients. And, I can’t stress strongly enough that potential patients should ask for references of at least 3-4 recent revision patients, and actually talk to those patients.While I think it’s smart for people who don’t have access to good medical care close to home, traveling for a big surgery like this would be really daunting to me. Don’t ever underestimate what it will be like to be in the hospital with no one you love close by. As to Dr. Berven, I’ve talked to dozens of Dr. Berven’s revision patients. For some reason, they never feel the need to come here. The one that I’m closest to is a friend who had revision surgery almost two years ago. It was one huge revision, with a lot of osteotomies. She was off all pain medication within 3 weeks of surgery. I’d been a big fan of Dr. Berven since I met him when he was doing his fellowship, but that rapid recovery really got my attention. He also was the only surgeon I’d ever met who had concern about incisional hernias. So, that’s my $.02. :-)Regards,On 10/5/06 7:26 AM, "cammaltby" <cammaltby > wrote:

(and all),I wanted to address your point about surgeons...and I would be glad to hear thoughts on my thinking here...so please let me clarify what I believe our position is.At another group there seems to be an idea that a master list should be developed of who might be an appropriate surgeon to have revision surgery for flatback. I have resisted that for a few reasons. Most specifically, I remember a surgeon being added to a list by a patient before she had surgery. She gave him an excellent write up. To the knowledge of the group this surgeon had no track record other than being a student of one of the "biggies". In fact, one of the biggies had strongly suggested she hold off having surgery. She went ahead with surgery and at last post was not doing very well. Her glowing recommendation of this doctor remains to this day. I would never want to have the responsibility of having let someone else take that recommendation and acting upon it.I know there are other surgeons who can accomplish this surgery other than the 5/6 most often mentioned here. I just don't really think it is wise to recommend ANY of them for surgery....My approach has been simply to recommend that once a patient has selected a surgeon for consideration for the surgery that the patient then consult one of the 5 that I am confident have done this surgery many times, and to a good result.Is that confusing? For instance, DrBerven, Lenke (or Akbarnia) may be fantastic surgeons and more than capable of dealing with flatback....but in my almost 3 years on the boards I am only aware of one patient each for Berven and Lenke (and none for Akbarnia)who had flatback surgery with them. So, if asked, I would suggest that a patient seeing one of them still get a second opinion from a 2nd surgeon who we see here as having a longer and more obvious track record. Actuallly, my personal belief is that anyone who does not get a very qualified 2nd opinion for this surgery is really "rolling the dice".....but that is just my own opinion. When I had surgery, arguably, DrBoachie's reputation was larger and more established than Rands....but none the less they both had many patients who could verify their experiences and outcomes. For me the key points were that they both thought surgery was probably going to much improve my function and pain levels, they both were recommending in favor of getting the full revision with fusion to sacrum, they both laid out a similar scenario for timelines. My job was to evaluate the differences in the actual way they were proposing to do the surgery, and there I had a very easy time of tracking down information and patients who could help me make the decision of one over the other. The end result was a high level of confidence in my decision to go the way I did. That is at least one important thing in going ahead with a surgery of this magnitude.So, you will also notice that I dont really recommend any of the top guys for surgery, I recommend them for an opinion. If someone wants to stay local and has confidence in their surgeon....terrific. I hope all goes well with them, and if they have done their homework they may very well have a good result. I certainly am aware of a number of surgeons and their patients who have done well. Should we actually recommend anyone for surgery on a "list"and leave a internet trail that can live on in perpetuity? I am just not all that comfortable with that. I am very willing to add a surgeon to my list of who should be consulted for a 2nd opinion once I see a few more patients posting about their experiences.There is also the opportunity to use the database for members to list their surgeon and to indicate if they are willing to be contacted about their experience privately. So in specific answer to your quesiton, I guess that this is why DrBerven isn't mentioned....either his patients have done so fantastic after flatback surgery that they are off living active lives and don't need any internet support.....or they are all cyber-impaired...or they are lurking. Or there really are not as many of them as some of the ones we hear about on this site (and others)the most.Question,do you mean the "tip of the iceberg" as in patients or as in surgeons? I am coming to believe that the reality is that the number of patients that are going to require revision of their previous surgeries is a growing group....or at least now that the techniques that most of us have been guine pigs on are beginning to reveal that there is a chance of good outcomes we are going to see more surgeons undertake the surgery. And surely some of them should not.I am more than willing to be pursueded that there is another way to handle this....any and all???Take Care, Cam> By the way, this is a little off topic, but while I’m on the subject of top> surgeons, I wonder why Dr. Berven is almost never mentioned. If I were to> have to have additional surgery, he would be one of my top 2-3 choices in> the entire country. For some reason, we hear the same 5 names mentioned> over and over again, but I think there are probably at least a dozen others> who are equally qualified. It makes me think that our little group is just> the tip of the iceberg.> > Regards,> > >

[Guest guest]

Cam....

This is something I think about a lot. I think I’d like to retire somewhere in the or Vancouver B.C. area, but know that I probably won’t do that unless I can afford to keep a Northern California residence so I have access to the great healthcare available at UCSF.

--

On 10/5/06 4:40 PM, " cammaltby " <cammaltby@...> wrote:

It is one of the things that people weigh heavily when they chose where they live. Surely if this back (or anything else in our family) required more constant attention then I would really have to rethink this remote living stuff! I think you are just a city mouse and I am just a country mouse!

[Guest guest]

Hi Bonnie...

Sorry, I wasn’t necessarily referring to visitors. I was really talking about someone to stay with the patient for the first few nights at least. There are fewer nurses per patient in most hospitals than there were 5 years ago, so I think it’s a good idea for most people to have someone stay with them during the most helpless times.

I also found visitors to be a after my surgery, but I suspect I’d feel pretty alone if I hadn’t been able to see anyone for the entire time.

I am definitely not saying that someone should let a surgeon in Podunk do revision surgery. But, if you have someone close by, and you’ve checked him or her out and know they’ve done a significant number of them, I don’t think it’s always necessary to go to one of the top 5/6. I think has proven that it’s sometimes best just to stay home. :-)

Regards,

On 10/5/06 5:10 PM, " Bonnie " <bonnie@...> wrote:

Hi ,

Whether to stay near home or go elsewhere and lose the companionship and help of your family and friends while you are in the hospital? Different answer for everyone. A lot depends on your condition and who your relatives and friends are. My " closest " friends live about an hour from the hospital and never came to see me. I was there for 9 days. One very good friend came three times and another came once. I wished they hadn't. I was on no position to entertain them or even carry on a conversation. I was grateful for their care and concern, but I couldn't handle anything more than a very short visit. We live about an hour from the hospital and my husband worked near home. He and my daughter who lives about a 1/2 hour from the hospital came with me on the day of surgery and stayed until they could see me in recovery. My hubby came every day by 11 am and stayed till about 8:30 pm. I enjoyed his companionship but he was helpless otherwise. My daughter came every evening and aside from her companionship and the fact that just having her in the room makes me smile, she, too was useless in terms of hands on help. Had I not had private nurses, it would have been horrible. I had a terrible time getting the proper pain management (things are better since then, I trust, since that was 8 and 1/2 years ago). My daughter and hubby left it to me to handle it. Anyway, to make a very long story a little shorter, know yourself and your relatives and friends very well before you rely on them for anything. And, I don't blame my husband or daughter for anything. They were just not equipped to handle it all.

Bonnie

Re: [ ] Re: Questions on surgeons -

Hi Cam....

The “tip of the iceberg” referred to patients.

I hear you about your concern of having a master list. For some reason, patients often seem to fall in love with their surgeons, usually before the surgery. They talk of these surgeons as if they’re God. And, I think that “love” often makes the patients blind.

I haven’t said it in awhile, but I think that people who aren’t within easy distance to one of the “big 5/6,” should start their search for doctors who did fellowships with one of the big surgeons (plus other retired surgeons known for revision (such as Bradford)). These guys have a lot of experience before they ever start their own practice. Also, look at the research and see who is publishing. If they’re publishing research on revision, they probably have a lot of revision patients. And, I can’t stress strongly enough that potential patients should ask for references of at least 3-4 recent revision patients, and actually talk to those patients.

While I think it’s smart for people who don’t have access to good medical care close to home, traveling for a big surgery like this would be really daunting to me. Don’t ever underestimate what it will be like to be in the hospital with no one you love close by.

As to Dr. Berven, I’ve talked to dozens of Dr. Berven’s revision patients. For some reason, they never feel the need to come here. The one that I’m closest to is a friend who had revision surgery almost two years ago. It was one huge revision, with a lot of osteotomies. She was off all pain medication within 3 weeks of surgery. I’d been a big fan of Dr. Berven since I met him when he was doing his fellowship, but that rapid recovery really got my attention. He also was the only surgeon I’d ever met who had concern about incisional hernias.

So, that’s my $.02. :-)

Regards,

On 10/5/06 7:26 AM, " cammaltby " <cammaltby@...> wrote:

(and all),

I wanted to address your point about surgeons...and I would be glad

to hear thoughts on my thinking here...so please let me clarify what

I believe our position is.

At another group there seems to be an idea that a master list should

be developed of who might be an appropriate surgeon to have revision

surgery for flatback. I have resisted that for a few reasons. Most

specifically, I remember a surgeon being added to a list by a

patient before she had surgery. She gave him an excellent write up.

To the knowledge of the group this surgeon had no track record other

than being a student of one of the " biggies " . In fact, one of the

biggies had strongly suggested she hold off having surgery. She went

ahead with surgery and at last post was not doing very well. Her

glowing recommendation of this doctor remains to this day. I would

never want to have the responsibility of having let someone else

take that recommendation and acting upon it.

I know there are other surgeons who can accomplish this surgery

other than the 5/6 most often mentioned here. I just don't really

think it is wise to recommend ANY of them for surgery....My approach

has been simply to recommend that once a patient has selected a

surgeon for consideration for the surgery that the patient then

consult one of the 5 that I am confident have done this surgery many

times, and to a good result.

Is that confusing? For instance, DrBerven, Lenke (or Akbarnia) may

be fantastic surgeons and more than capable of dealing with

flatback....but in my almost 3 years on the boards I am only aware

of one patient each for Berven and Lenke (and none for Akbarnia)who

had flatback surgery with them. So, if asked, I would suggest that

a patient seeing one of them still get a second opinion from a 2nd

surgeon who we see here as having a longer and more obvious track

record. Actuallly, my personal belief is that anyone who does not

get a very qualified 2nd opinion for this surgery is really " rolling

the dice " .....but that is just my own opinion.

When I had surgery, arguably, DrBoachie's reputation was larger and

more established than Rands....but none the less they both had many

patients who could verify their experiences and outcomes. For me the

key points were that they both thought surgery was probably going to

much improve my function and pain levels, they both were

recommending in favor of getting the full revision with fusion to

sacrum, they both laid out a similar scenario for timelines. My job

was to evaluate the differences in the actual way they were

proposing to do the surgery, and there I had a very easy time of

tracking down information and patients who could help me make the

decision of one over the other. The end result was a high level of

confidence in my decision to go the way I did. That is at least one

important thing in going ahead with a surgery of this magnitude.

So, you will also notice that I dont really recommend any of the top

guys for surgery, I recommend them for an opinion. If someone wants

to stay local and has confidence in their surgeon....terrific. I

hope all goes well with them, and if they have done their homework

they may very well have a good result. I certainly am aware of a

number of surgeons and their patients who have done well. Should we

actually recommend anyone for surgery on a " list " and leave a

internet trail that can live on in perpetuity? I am just not all

that comfortable with that. I am very willing to add a surgeon to my

list of who should be consulted for a 2nd opinion once I see a few

more patients posting about their experiences.

There is also the opportunity to use the database for members to

list their surgeon and to indicate if they are willing to be

contacted about their experience privately.

So in specific answer to your quesiton, I guess that this is why

DrBerven isn't mentioned....either his patients have done so

fantastic after flatback surgery that they are off living active

lives and don't need any internet support.....or they are all cyber-

impaired...or they are lurking. Or there really are not as many of

them as some of the ones we hear about on this site (and others)the

most.

Question,do you mean the " tip of the iceberg " as in patients or as

in surgeons? I am coming to believe that the reality is that the

number of patients that are going to require revision of their

previous surgeries is a growing group....or at least now that the

techniques that most of us have been guine pigs on are beginning to

reveal that there is a chance of good outcomes we are going to see

more surgeons undertake the surgery. And surely some of them should

not.

I am more than willing to be pursueded that there is another way to

handle this....any and all???

Take Care, Cam

> By the way, this is a little off topic, but while I’m on the

subject of top

> surgeons, I wonder why Dr. Berven is almost never mentioned. If I

were to

> have to have additional surgery, he would be one of my top 2-3

choices in

> the entire country. For some reason, we hear the same 5 names

mentioned

> over and over again, but I think there are probably at least a

dozen others

> who are equally qualified. It makes me think that our little

group is just

> the tip of the iceberg.

>

> Regards,

>

>

>

[Guest guest]

,

Just wanted to comment that Dr. Hanson is a student of Bridwell. I

am still waiting for test results 5 weeks later. And yes, I have

called. No way I could put him on the top of my list.

Kathy

>

> > (and all),

> >

> > I wanted to address your point about surgeons...and I would be

glad

> > to hear thoughts on my thinking here...so please let me clarify

what

> > I believe our position is.

> >

> > At another group there seems to be an idea that a master list

should

> > be developed of who might be an appropriate surgeon to have

revision

> > surgery for flatback. I have resisted that for a few reasons.

Most

> > specifically, I remember a surgeon being added to a list by a

> > patient before she had surgery. She gave him an excellent write

up.

> > To the knowledge of the group this surgeon had no track record

other

> > than being a student of one of the " biggies " . In fact, one of the

> > biggies had strongly suggested she hold off having surgery. She

went

> > ahead with surgery and at last post was not doing very well. Her

> > glowing recommendation of this doctor remains to this day. I

would

> > never want to have the responsibility of having let someone else

> > take that recommendation and acting upon it.

> >

> > I know there are other surgeons who can accomplish this surgery

> > other than the 5/6 most often mentioned here. I just don't really

> > think it is wise to recommend ANY of them for surgery....My

approach

> > has been simply to recommend that once a patient has selected a

> > surgeon for consideration for the surgery that the patient then

> > consult one of the 5 that I am confident have done this surgery

many

> > times, and to a good result.

> >

> > Is that confusing? For instance, DrBerven, Lenke (or Akbarnia)

may

> > be fantastic surgeons and more than capable of dealing with

> > flatback....but in my almost 3 years on the boards I am only

aware

> > of one patient each for Berven and Lenke (and none for Akbarnia)

who

> > had flatback surgery with them. So, if asked, I would suggest

that

> > a patient seeing one of them still get a second opinion from a

2nd

> > surgeon who we see here as having a longer and more obvious track

> > record. Actuallly, my personal belief is that anyone who does not

> > get a very qualified 2nd opinion for this surgery is

really " rolling

> > the dice " .....but that is just my own opinion.

> >

> > When I had surgery, arguably, DrBoachie's reputation was larger

and

> > more established than Rands....but none the less they both had

many

> > patients who could verify their experiences and outcomes. For me

the

> > key points were that they both thought surgery was probably

going to

> > much improve my function and pain levels, they both were

> > recommending in favor of getting the full revision with fusion to

> > sacrum, they both laid out a similar scenario for timelines. My

job

> > was to evaluate the differences in the actual way they were

> > proposing to do the surgery, and there I had a very easy time of

> > tracking down information and patients who could help me make the

> > decision of one over the other. The end result was a high level

of

> > confidence in my decision to go the way I did. That is at least

one

> > important thing in going ahead with a surgery of this magnitude.

> >

> > So, you will also notice that I dont really recommend any of the

top

> > guys for surgery, I recommend them for an opinion. If someone

wants

> > to stay local and has confidence in their surgeon....terrific. I

> > hope all goes well with them, and if they have done their

homework

> > they may very well have a good result. I certainly am aware of a

> > number of surgeons and their patients who have done well. Should

we

> > actually recommend anyone for surgery on a " list " and leave a

> > internet trail that can live on in perpetuity? I am just not all

> > that comfortable with that. I am very willing to add a surgeon

to my

> > list of who should be consulted for a 2nd opinion once I see a

few

> > more patients posting about their experiences.

> >

> > There is also the opportunity to use the database for members to

> > list their surgeon and to indicate if they are willing to be

> > contacted about their experience privately.

> >

> > So in specific answer to your quesiton, I guess that this is why

> > DrBerven isn't mentioned....either his patients have done so

> > fantastic after flatback surgery that they are off living active

> > lives and don't need any internet support.....or they are all

cyber-

> > impaired...or they are lurking. Or there really are not as many

of

> > them as some of the ones we hear about on this site (and others)

the

> > most.

> >

> > Question,do you mean the " tip of the iceberg " as in patients or

as

> > in surgeons? I am coming to believe that the reality is that the

> > number of patients that are going to require revision of their

> > previous surgeries is a growing group....or at least now that the

> > techniques that most of us have been guine pigs on are beginning

to

> > reveal that there is a chance of good outcomes we are going to

see

> > more surgeons undertake the surgery. And surely some of them

should

> > not.

> >

> > I am more than willing to be pursueded that there is another way

to

> > handle this....any and all???

> >

> > Take Care, Cam

> >

> >> > By the way, this is a little off topic, but while I¹m on the

> > subject of top

> >> > surgeons, I wonder why Dr. Berven is almost never mentioned.

If I

> > were to

> >> > have to have additional surgery, he would be one of my top 2-3

> > choices in

> >> > the entire country. For some reason, we hear the same 5 names

> > mentioned

> >> > over and over again, but I think there are probably at least a

> > dozen others

> >> > who are equally qualified. It makes me think that our little

> > group is just

> >> > the tip of the iceberg.

> >> >

> >> > Regards,

> >> >

> >> >

> >> >

> >

>

[Guest guest]

I wonder if he expects you to make an appointment to discuss the

results?

>

> ,

>

> Just wanted to comment that Dr. Hanson is a student of Bridwell. I

> am still waiting for test results 5 weeks later. And yes, I have

> called. No way I could put him on the top of my list.

>

> Kathy

>

>

>